Another Boat Flip…Getting Ready For Hospice
Another Boat Flip…Getting Ready For Hospice by Lori La Bey
I realized Mom was in her end stages of Alzheimer’s disease given her weight loss and declining ability, so I decided to contact hospice about additional services. We set up a time to meet at the nursing home and review Mom’s case. Hospice needed to meet Mom, review her chart, and see what services would be best for her if she qualified for the program. To be honest when I set up this meeting, I was not sure what I was looking for or even what I expected. I just knew if Mom qualified for additional support I wanted her to have it. I wanted her remaining time to be as comfortable as possible. I wanted to maximize her quality of life.
The meeting with hospice was comfortable. They were friendly and caring. They made a difficult discussion, simple and as easy as possible. We went over all the technical stuff and then they asked, “What do you need Lori.” That is when I lost it. I apologized immediately for my behavior and they handed me a Kleenex and then another. “It’s ok this is what we are here for, Lori.” The hospice nurse said.
I was shocked and embarrassed of my behavior. I did not expect to break down and cry. I had put the call into hospice. I knew Mom was in her end stages, but by no means did I think she was going to die in the next few days. Where were all these emotions coming from? I knew the drill. I knew what to expect. I had been through this with my Dad. Hospice is a fantastic service, so why was I upset? Why was I crying? I was prepared, or so I thought and I continued to cry. “All I need,” I stuttered out, “was for my Mother to be well cared for in her final days.
There, that was it, “Her final days.” I was starting the countdown in my mind. “I want her to be pain free and able to enjoy life. As for how that happens, I’m not sure what all you have to offer.” And I cried some more. They reached out to hug me and give me yet another Kleenex, as they explained their services.
I told them, I was very happy with the care Mom was receiving at the nursing home. I wanted her to remain there, but felt additional services would be wonderful. We continued to talk and they listened as I told stories of my Mom.
It was decided hospice would evaluate Mom’s medications and see if they could get some in liquid form vs. feeding her ground-up pills. They even mentioned medications that come in lotion form. They could have a Pastor come visit. We discussed additional support for grooming, as this was such a struggle for Mom. They even had a music therapist, which I told them Mom would love. They would check on volunteers to visit with Mom. There would be extra staff reviewing her chart both nursing and social services.
They mentioned services for the family now and even after, Mom passes, if we were interested. I was so appreciative of their kindness and understanding. Hospice was not just another layer of protection for Mom, but all of us. No one should be fearful of calling them. They are angels helping people pass through life with dignity.
I remember leaving the nursing home that day thankful they were going to recommend Mom for Hospice, yet still balling my eyes out as I drove home. I thought I was going to have to pull off the road as I drove, even though I lived only a few blocks for the nursing home.
No matter how prepared I thought I was for this journey, no matter how wonderful the nursing home and hospice staff were, no one could change the fact my Mother wasn’t going to be around forever. I guess the old saying is true; you can never prepare for the loss of a parent. I did however, feel good about having hospice to come out knowing I was doing everything I could to ensure her last days were going to be the best they could be.
In the end, Mom was on hospice for one month. The good news was she improved during that time. The bad news was she was taken off hospice because she improved. What that means for the future, is that we will most likely go through this process all over again.
Oh, Lori – I can just feel your heart and soul as you write. I care about you and the ups and downs your journey brings. You are on my heart today.
HI Gaye,
Thank you so much for following my journey with my Mother and Alzheimer’s disease. It has been an intersting path to say the least. I appreciate you sharing your feelings and knowing that you care. It means more then you’ll ever know!
My mom started hospice care about one month ago. I was her caregiver for almost 5 years – when she was aware of things, and she was placed in a nursing facility this past January. I am her POA, handing EVERYTHING. I have two sisters, one of whom visits regularly during the week.
To be honest, I rarely visit, because I just don’t want to go. She lays there and is not even aware of anything. She has been like that for almost a year, and honestly I am starting to feel like a monster because I don’t visit. I had to get these feelings out to someone who knows what having a parent with this disease is about.
Hi Michelle,
I know of the guilt and the stress you are putting on yourself. It is rare for anyone dealing with this disease not to go there at one time or another, and for some people it is through the total disease process. For me I have found comfort in just visiting, even if there is no response, or should I say not a typical response I was used to.
If there is one thing I have learned it is to NOT let the monster of judgment eat me alive. It thrives on guilt and disappointment. It is tormenting and relentless! Judgment is not ours to hand out, be it towards others or self. Please keep in mind we are typically much harsher on ourselves then others would ever imagine. Try to slam the door on the Judgment Monster before he slams you flat.
Let me say, also I have two brother who rarely go visit my Mother even though they live close. They, in my opinion have not been willing to fully feel the pain this disease causes in one’s life. I am a firm believer we can’t move forward without dealing with our feelings until we fully give into them and feel the full emptiness within ourselves.
What I’ve actually found out over time is that my Mother does respond although in different ways from what I ever saw before. BUT I also must be willing to take the time to look for these different signs. It may be in the way she responds to my voice or touch via her breathing, her facial expressions, a gesture ever so slight, or a cooing like a baby. I now find deep pleasure in being able to spot these finely tuned and ever so slight responses to my presence. It reminds me she is still in there. Someone does occupy that empty shell that looks right through me as though I don’t exist. This gift of simple connection has made me aware on a deeper level in so many areas of life. It has added so much value to every second of each day that passes before me, with me.
If we can get to this point we typically find a buried treasure which allows us to then interact from a different position. One which is not judging of ourselves, or them. We no longer focus on disappointment factors, which there are many when we look for them; but the true base of our relationship which is simple, non-threatening, and totally loving.
When and if you can get to this point you will find and feel a new freedom and appreciation for life in general. When we get out of our own way, letting go of the past as we projected it to be. We then start living in the present moment appreciating what actually is, and that which was. It no longer scares us or disappoints us. We no longer try to control the situation, the disease. The process called Alzheimer’s disease.
For any caregiver this is a difficult thing to do. The word caregiver is one we so closely associate with PROTECTOR and FIXER, especially if you are the one in “control.” The one with the power of attorney to make the decisions and care for their needs. The weight is heavy and many siblings and friends, have no clue to the burdens carried by Caregivers and those with legal power to care for loved ones day in and day out.
Actually all we can do when it comes to illness is try to provide comfort and love. Try to reduce their stresses and assure they are safe. When you break down what we can provide, it is the basic needs of happiness, comfort, and safety.
Once we acknowledge this fact and accept the reality of our new found position “caregiver,” we can then breathe a sigh of relief, knowing down deep within our own soul that which is in our control and that which is not. Once we do this, we no longer feeling like we are letting them down. We no longer worry about what others think of our ability to perform our “role” as there are no rules, no job description. Each person and situation is different and each of us can only do what we feel is in their best interest at the time, with the knowledge base we have to work with.
Once we remove our personal critic, the Monster of Judgment, we can move forward and be grateful for the oh so small pleasures life has to give us when we slow down and start looking for them.
You Michelle, like many, may never get to this point, and that is ok. My guess is though you will. By taking the step to reach out and comment on my blog, oh heck just looking and reading blogs…tells me you are ready to move forward and find peace in the light of this disease. I applaud your courageous step! Kudos to you and all you have been through and what is to come.
In hopes that peace and serenity comes your way through this disease, I will share with you that Alzheimer’s has totally changed the way I look at life. The way I live my life. In a very strange way it has been a blessing to me. It has given me a new way to connect with people on a level I never thought possible. I hope through my writing and communications with people, others may be blessed with what I have found. Hope. Hope for today and for the future. In the peacefulness of quiet moments, of Alzheimer’s disease. In the teachings of new connections and the beauty through loss and grief. For the appreciation of the all the small things I missed, being too busy looking for the big things to applaud. For the still small voice inside which says, “Lori, today was a good day. Mom was safe, pain free, and content.”
I believe this disease they call Alzheimer’s is not one any parent would choose to burden a child with unless there was a hidden gift buried in the process, an incredible lesson to learn. Look and you will find it within yourself. The strength you didn’t know was there, your powerful belief system, your intensified connection with others; are all at stake.
May your God bless you and all you do each and every day. May you feel your Mother’s love even if you are not physically before her. I can tell by your writing you are a good daughter. One I am sure she is so very proud of even if she is unable to tell you.
At the time she was diagnosed back in 2004 I was diagnosed with breast cancer. To be honest…I wanted my mother, who was ALWAYS the strength of our family…I wanted my mom to be there for me…to be my tower of strength and protection. She tried…but it wasn’t the same. She would go on appointments with me, all the surgeries, chemotherapy treatments, etc., but I found that I had to be strong and courageous for her. I was so depressed at the time because I felt that my mother was taken away from me and I needed her to console ME during that terrible time. I had just turned 50 years old at the time. Sounding like a big old baby…??? She is my mom and was always my rock and protector. But the roles were reversed and I had to be the strong one. I could never cry to my mom, but always had to be the strong one. So while I was trying to get well, I would beg my sister, who only lived 10 houses away from my mom…please take time to visit mom, I would explain to her that I needed to get well and I couldn’t look after her and me at the same time. As I am writing this I am choked up…tears in my eyes. So for the past 4 1/2 years I would go to my mother’s house in the morning before work and sometimes after work, and Saturday mornings. I did all the shopping for her, cleaning the house and just sitting with her…watching her slowly deteriorate before my eyes. I did get better…in time…and would ask my sister to just make sure that my mom would take her medication and she would…living just a few doors away from my mom…she would SOMETIMES stop in and just shove the pills to my mother and she would quickly go home. My mom would tell me how she would see my sister just pass by her house and not even stop in to say hello. My other sister who aim in life is to be rich…would bring food over to my mom, but eventually it got to a point where someone needed to sit with my mom to make sure that she ate. LONG STORY SHORT…I began to date a wonderful man…something that I had resolved in my mind and heart that would never happen. We got married 10 months later and I am happy to say that he is the love of my life 🙂 My mother was able to make it to our wedding and from that day forward she deteriorated rapidly. I had nurses come in daily, but that didn’t work out because she became very combative and they refused to come back. She started doing strange things like throwing out her clothing, wandering, etc. This same sister of mine agreed to take mom in and let her live with her. But after two weeks it was too much for her and at that point she was admitted to the hospital for observation. This is a sister who was never close to my mother, but only took on the responsibility of caring for my mother because I told her she could stay in her present home living rent free. After a short hospital stay, it was decided to place my mom in a nursing facility. Since I was the POA I had tons of paperwork, meeting with social workers, doctors, trying to get my mom on Medicaid. After months of meeting with caseworkers for Medicaid, she was finally approved. Never once did my sisters volunteer to do any of the grunt work, but my husband was my support system.
I know I must sound like I am babbling, but the anger that I had towards my sisters was too much. After my mom finally settled in…I felt a freedom…that I no longer had to always visit so much. My sister sees her during the week because she doesn’t work much. I absolutely hate seeing my mom like she is now. She has always been a small woman, but there has been so much weight loss, she doesn’t talk at all, and as I mentioned earlier in my previous post, she doesn’t even know who we are.
Your reply to me was very encouraging and I have so much more to say…but it seems like it would take forever to do so. Thanks for listening to me. I appreciate it 🙂
HI Michelle,
Your story is incredible and had me crying. I could feel your anger, your loss, your frustration and your new love, respect, and support you have found in your husband. Please feel free to share anytime more of your journey. By doing so, I firmly believe it will help you on your path as well as many others privledge to read your thoughts.
We must all support one another on this passage. You are a true inspiration and I so admire your strength and your love for your Mother.
If you don’t journal yet, it is something that you might find brings you great freedom. I know it has help me on more levels then I can even begin to discuss. If your not sure how to begin go up to the techniques buttom and scroll the exercises. There is one perfect for someone just beginning the process, called “Getting through the feelings – EXERCISE” another that maybe helpful is
“CAREGIVER TO DO LIST-SORTING THROUGH YOUR FEELINGS” which helps us as caregivers breakdown what is really troubling us.
If I knew how to give yo a big smiley face I would! I’m just not that tech savvy.
It is impossible to read your comments and not to want to give you a big hug, comfort you, and tell you everything will be ok. So here is a huge hug coming your way!
Take care
Lori
Thanks for the hug. I appreciate it…along with your empathy. I guess my guilt is that I don’t want to visit my mom. She doesn’t know I am even there. I hate that she is like this. You had to know my mom. She was always there for everyone, taking care of sick relatives, taking care of her mother until she died, her father. She would sit in the hospital with you and stay for hours just supporting you. And I have the nerve to not want to visit her. It sickens me. I feel like I am being selfish because I just want to live my life now. My mother would give you her heart if you needed it and why I feel like I don’t want to take the time to visit at least once a week puzzles me.
When she realized that she was starting to get lost when going places she called me up and said that I needed a car. She told me to pick out what I wanted. I was able to use that car to shop, take her to doctor appointments and like I mentioned earlier, I was able to visit her more and pretty much do the things she wanted to do.
I feel guilty about just wanting to be with my husband and feel happy with just me and him. I know in my heart that my mother was happy for me because I had a bad first marriage and finally she could see me happy. I have not been able to share this with anyone because I don’t want people to think I am uncaring.
My mom is fighting to stay alive and I wish she can go in peace. I feel guilty about that too. It just occured to me that my mom won’t let go. She would be mortified knowing she was in a nursing home. Once again I am rambling, but thanks for listening.
Also I hesitate to journal because I don’t want anyone to see my thoughts. I am embarrased at this moment even writing all these emotions.
I am going to visit her on Saturday afternoon.
Michelle,
Your Mother sounds much like mine. I totally understand and it is so hard to watch your “ROCK” become a “PEBBLE IN THE SAND.” It’s hard to imagine their strength and knowledge disappear, their ability to comfort and direct, and just be, lifted away.
I think the last is what this disease is trying so hard to teach us… to JUST BE.
I know and can feel your guilt and your shame. I’ve had it and held onto it too. Yet at this stage I am able to honestly and sincerely ask myself is this how my Mother would want me to feel. My answer is always the same. A big screaming “NO!” My Mom and yours sound alike so I would think your Mom would never want you to carry those emotions, those burdens especially on her behalf. Our Moms were about love and life, not guilt and shame.
You also have to realize that the guilt and shame you carry, could not fester and grow, if you did not love your Mother so deeply. How crazy is that? Talk about the ying and the yang.
I also believe Alzheimer’s is here to teach us balance and respect not only for others but ourselves. It sounds like you have come to realize that the stress of caregiving can be a huge burden, no matter what ones depth of love is for another. Understanding, Accepting, and Acknowledging that fact alone is a huge step!
I believe by embracing the truth of our feelings we can then start to openly communicate with others about it and move forward to heal. We live in a society which trys so had to project an image of good, and the best… everything is perfect! By doing this we so deeply fail at dealing with the truth within us.
We are so caught up in what others think about us. We carry this heavy burden of guilt and shame which brings us down making us depressed. It has us doing things we don’t feel comfortable doing, things that don’t align with our true selves. In turn we give our lives over to others without even knowing we have lost control.
It is pattern that must stop. I have found time and time again when I am open with my feelings and true thoughts, without blaming others for my feelings, people are amazed. Some are uncomfortable, but in the end the impact has been so significant. The significance comes not from me, but from others feeling safe to also process their true feelings without being judged. Many unfold their feeling in private and then share later with others once they have had time to process and accept things for what they are, not what they would like them to be, or what they think others think they should be.
I have had so many people come up to me and say things like “You are the first person I’ve ever seen talk openly about, well I’ll use my divorce as an example; and take action to make a change and not be hostile just matter of fact that it will be better for all.” I have had several people approach me much later after our discussion, saying “Lori, your example gave me the strength to make a change in my life I never thought I could. I now know it doesn’t have to get evil and be petty, but that change is out of love and respect to find the balance and joy we all deserve. That change is done for the greater good.” Each time, I am blown away by the impact such a simple thing like being honest can have on people.
I guess it’s about leading by example, and Alzheimer’s disease is testing us to do just that. To find balance and joy in our lives. To appreciate the small miracles that happen daily. To realize we only need to align with ourselves and our God. The
rest is all muttled and worry is not useful or productive.
Embrace yourself, the love you have for others and continue to protect your balance in life by openly acknowledging your feelings for what they are. If you do this you will become strong enough to make the changes in your life which bring you true happiness.
For you Michelle, you have found a wonderful man who supports you and loves you. He probably is your “New Rock” and that is ok. Pebbles know they are not Rocks. I’m sure your Mother admires your strength in making a wonderful change in your life. She knows you love her as our connections run much deeper than our physical presence.
Enjoy your time with your Mother on Saturday. Hold her hand, caress her face and tell her of your love, your life, you’re grappling to find peace with her illness and how it makes you feel. Let her know you will be all right and that if it is her time to go she need not worry about you being ok. Ball and cry until you feel no more tears can come and you will find great release in your honesty with the person it matters most to.
You Mother may not respond, but then again she could surprise you with a slight gesture, a faded smile, a tear, a giggle, or a word she speaks. You just never know. Look for the small miracle of connection, between the two of you.
Have faith in the love you have for your Mother.
Have faith in yourself and know you are a good loving daughter.
My heart is with you on your journey.
Lori
So how’s that for rambling! Tag your it.
You must be a psychologist…lol. You are a very deep person 🙂 I will reply tomorrow morning. I am leaving to go home now from work.
Good morning…I thought a lot about my visit with my mom for this Saturday and the suggestions you made – “Hold her hand, caress her face and tell her of your love, your life, you’re grappling to find peace with her illness and how it makes you feel. Let her know you will be all right and that if it is her time to go she need not worry about you being ok.”
We were a family who knew of the love my mother and father had for us. But sadly, it was NEVER said to us. And over the years I have talked about this with my close friend…how my mother never said she loved me or ever hugged or touched me. I always knew she loved me, but I always wanted my mom to just hold me like I would see other mothers do…but she never did. So doing what you suggested…is awkward. I remember when she was admitted to the nursing home, I would walk with her and hold her hand. It felt so weird, but she needed to hold on so that she would not fall.
I remember telling my mom that I could not make it without her if she would die, and she would always laughingly tell me that I would be okay. You have to know to say something so “mushy” like that made my mom feel embarrased, but I had to let her know that. At that time we were so close. I was raising a son and she as well as my dad was always there for us. So that is about as saying I love you as it gets. I’m hoping you understand what I am trying to say.
Now my husband will kiss her forehead, hold her hand but I will just stand there…frozen… I remember when my son was growing up I said that I would break the cycle of not showing affection. My son was constantly told that he was loved and we were very affectionate. I never wanted my son to have to say in later years that he could never remember me telling him that I loved him.
Back to mom…its now that at 55 years old that I feel like I have to grow up, that I no longer have my mother. I’m on my own now. I hate feeling like that. I want that comfort of knowing I have a mother that I can turn to when I need her.
Prior to her going into the nursing facility, I would call my mom about 2-3 times a day to just talk about nothing…believe it or not I am the comedian of the family. I remember always making my mom laugh about something. I felt she needed to do that because I never remember her being happy or laughing when I was a little girl. We would talk on the phone for hours at a time…I miss that with my mom. I was the one who was close to her and when she started to decline mentally she felt I was the one who could take care of her and she trusted me. That is when she made me her POA. I had complete charge of everything and my sister hated that. She was always money hungry and my mother knew that.
My mom didn’t have a lot of money, but she always saved. My dad left her a nice sized pension and she invested her money well. When she started getting really sick I was unaware that she would withdrawal large sums of money from the bank, and to this day I don’t know where that money went. I believe she really was giving it away to people. She was a very generous woman and would give you anything.
That is why I am having such a hard time with the way I feel about not wanting to visit my mother.
Gotta start working now. I will “chat” with you later.
p.s. I hope that you don’t think I am a weird person. This is just the first time that I am able to say exactly what I am feeling.
Have a wonderful day.
p.s.s. I am starting to feel like a weight is being lifted off me 🙂
Hi Michelle,
Let me start by saying I DO NOT think you are weird at all! Your situation is extremely common. Much more then you will probably ever know. I hear this lack of affection often. Even though I was not brought up in envirnoment like yours, and the affection my family showed was more, by my Ex-husbands family standards (if you can follow that without a flow chart) 🙂 my familys stand for affection was much less. I did find though over the years that I learned to be much more affectionate with my family hugging and kissing hello and good bye. Affection was no longer just for “special” occassions. Every encounter was now treasured.
At first it was a bit ackward, but then my parents, siblings, and I felt good about it. Comfortable with it. It became our new pattern. We are proud to disble ourf affection for one another.
I would still encourage you to touch your Mother and tell her your feelings. Maybe your not ready for the clear the slate, ball your eyes out session, and you may never be; and that is OK to!
But think of this, How will you feel once she is gone if you don’t try? If this is going to slathering you in more guilt well then I for one say it’s not worth the risk of potentially adding that onto your plate.
Also, think of how proud your son will be of you, if you choose to share it with him, that you are BREAKING OLD PATTERNS with your Mom like you did with him!
I ask you to think about and ask yourself this –
Do you think your Mom has had regrets for not being able to share her feelings with you? Do you think there has been regret of not being able to be more affectionate with you?
My guess is your Mom has many regrets on that level. I say this, as I have heard this from many people over and over again. They two wish they were strong enough to break the patterns as they too learned their habits from their families. They too felt as you did as a daughter or son. Think of the gift you could be giving your Mom. Letting her know that her disease has made you strong enough to break this pattern with her.
Think of the gift it could be to you, just to know you’ve broken the pattern on one more level in your life.
Think of how wonderful your husband will feel knowing and maybe if he is with you, seeing you have that intimate connection with your Mom. One that he from what you say has with you Mom.
If you husband can type of relationship with your Motherr, and she has not had a negative reaction, chances are extremely high she is not going to have a negative reaction to your touch. To your love.
I had to giggle when you said you were the comedian in your family, as that is my role as well. There isn’t much I can’t do without trying to make someone laugh. From my “deep psychologist want to be” remarks, as you mentioned, you probably would not think that of me either! LOL
Use your gift of humor to release the apprehension you feel. Let her know this is not normal for the two of you but something you’ve always desired. Maybe you can even tie it into a halloween theme of good witch from the wizard of OZ… Tell her this is new to both of you so you need to practice. Tell her your intent is to love her and comfort her. Tell her that you want to have no doubt in your mind that she knows this. Tell her you are proud of yorur feelings for her and those of her for you.
In the end, come tomorrow you will do whatever is right for the two of you! In that I have no doubt. I will be anixous to hear how it goes if you are willing to share with us. But please know I don’t want you to feel any pressure from this end to share if you are not comfortable doing so. This is such a personal time for you both and that we all must hold first at hand and respect.
Best of luck and thanks again for sharing. I’m glad you feel our discussions help. I would love to figure out how to start a formal support group for people on line as it has been requested often. I will continue to think on the best route to do this as so many have wonderful stories to share and we all have so much to learn from one another.
Lori
I was so happy to see how fast you replied back to me.
My mom is not aware of what is going on. Her eyes are always closed. If she is not in the bed, she is sitting in the wheelchair. Are you saying that I should still say how I feel?
How will I ever know if my mother has regrets? She can’t communicate 🙁
I remember when I was beginning to feel well again after all my treatment with the cancer. I started to kiss my mom goodbye when I visited her…even my sister too. I think my mom liked the affection, but she was always stand-offish. Then I just stopped doing it.
HI Michelle,
If it was me I would go for it! Your Mother may not be able to communicate like she used to but beleive me she is still in there. I’ve seen it time and time again. I want you to go to this website and watch some short videos. Be prepared to cry as it is so moving. The woman in the video is Naomi Feil. She grew up in Nursing homes and has a whole wonderful and amazing philosophy on communication with Alzheimer’s patients. I’ve seen her in person. She is INCREDIBLE!
Promise me you’ll try to watch this before your visit. The second video down is the one I for sure want you to watch. You will see from the video they are inside that shell.
http://www.memorybridge.org/videos.php
I will also share with a story of my Aunt who was in a coma state dying of cancer when I went to visit her to tell her of a dream I had. When at the hospital the nurse told me expect no response. No eyes opening, No squeeze of the hand, no talking, no nothing.
I sat with her for 45 minutes or so holding her hand and rambling about everything and nothing. Then I got up my courage to tell her of the dream I had.
I told her my Uncle Chuck , her husband coming to me in a dream. He stood at the side of my bed and with a big brillant smile, eyes shining brightly, and his arms held out up to embrace and he said, “Lori tell Kay it’s time to come. I am here waiting for her and I wll take her over. Tell her it’s time. It’s ok. I’m here” Then he was gone.
As I told Kay of Uncle Chuck and what he had to say, she squeezed my hand, her eyes popped open, she got this brillant smile on her face as she looked up into the heavens. Then, another little squeeze of my hand, her eyes shut, but the smile remained. I stay for a bit longer and then left still in shock of what happened.
About two hours later I got a phone cal saying my Aunt had passed. She heard me and I beleive she saw Uncle Chuck too. They are in there. We just never know what will trigger a reaction.
Let me know what you think of the vidoe!
Lori
The video was beautiful and made me cry.
I learned from it that I have to try and reconnect with my mom, while doing this through touch. I can’t wait to see her 🙂
HI Michelle,
I’m so excited for you! What a gift even if there is no response you will be giving yourself the gift of trying! To cross a line and make a new milestone in your own growth process. Remember there is no guarantee of physical reaction from your Mom, but I’m pretty sure it will change you forever no matter what happens.
If she responds no matter how slightly it will be a powerful moment for both of you. If she isn’t able to yet, don’t give up evidentaully my guess is you will see a response or “feel” a response. A feeling like a warm blanket comforting you, giving you peace. Don’t ignore the change within you. That maybe your Mother’s way of communicating with you on a level you’ve never known before.
I’m so glad I sent you the link. It makes me cry ever time I watch it!
Best of luck tomorrow!
Lori
i did it. i went to see mom…and my husband waited for me in the car. i just wanted time alone with mom. i went into her room where she was in bed and for the first time i caressed her face, felt how soft it was and told her that i loved her…can you believe it? i told her that i was happy enjoying my life, and that my sisters and brother were doing well. i told her to “let go” and that it was okay to so. i talked to her about her mother and that i look forward to seeing her when God will be making all “things new”, where persons who die will be made whole again and that I look forward to seeing her come back as my mother with her whole mind again. all of a sudden she started to mumble and move around. it was so deep to see her do that because otherwise she just lays there. when i repeatedly told her that i loved her she had movement. i really felt that i connected. i just wanted her to know that i was okay and that she could rest. didn’t stay long, but the visit was a good one.
i also did something i never did before, i moistened a towel and wiped her lips and put some lotion on her face. just the sheer touching of her face was so deep and profound, it moved me to tears. never did that before. i am so glad that i had this experience and i thank you for sharing that video with me and also thank you for sharing your thoughts and encouraging words with me.
i will check in with you on monday. going to spend the day with my husband tomorrow and just relax. i finally feelgood with myself.
thanks again 🙂
OH MY GOSH Michelle,
First I have to say I’m so sorry if my reply is late today. I have been thinking of you all day and checking my messages when I can, but I was in a conference all day.
I am so excited for you. I had tears streaming down my face and a huge smile to boot, as I read of your day with your Mother. What a FANTASTIC DAY! What a FANTASTIC MOMENT TO REMEMBER!
Your description of your Mother’s response, aloud me to feel all over again the connection I have with my Mother. For others, it will give hope and set another example of courage to connect. To try something new and different. Be those connections rare or not, they exist and are so powerful
Thank you again for sharing your story. You have been a true blessing to so many who read this blog. Your courage and honesty are appreciated by us all.
Now, I hope you go have a wonderful Halloween and celebrate your new passage of affection and connection with your Mother. All of this happening on a holiday may make this experience even more precious, as you will be remind of it ever year to come.
Know your story will impower many!
Thank you again
Lori
Good morning…Feeling good this morning and I actually cannot wait until I visit mom again this weekend. Haven’t had that feeling in a long time.
She lays in a fetal position, literally all skin and bones. I hate seeing her like that. I also wonder why she sleeps so much. Is that normal? In the beginning of her journey we couldn’t keep her still, but now she just lays there.
Is it me…but do you believe the health care workers really care about our loved ones? They are falling all over my mom when I am there, but really I think they ignore her when no one is around. Less trouble for them…at least that is what I am thinking. They all seem to say the same thing…she ate a little this morning and she took her medication. Their replies almost sound mechanical. Its obvious she is not eating much and how do they get her to take her meds? Is it forced to her? I don’t want to start problems by asking so many questions. My other sister who I thought was going to see mom on a regular basis is not. I checked the guest book and her last visit was last Saturday. I got some nerve because she visits more than me. It is also for this reason that I don’t sign in because I don’t want my family to see how RARELY I visit. I know…I got some nerve to be checking…told you I was weird…lol
I am just sitting here remembering how my mother had all those expressions on her face, she didn’t open her eyes, but I will always remember her facial expressions. SHE HEARD ME, and I am thankful for that 🙂
HI Michelle,
I can feel your energy as you write. It is so exciting! You pose some great questions regarding staff. I to use to get the feeling many staff seemed to give standard answers to look good. But what I have found is that as I share what I learn with them we have so much more to talk about. So much to learn from one another, aside from the she ate
1/4 of her food…
On the food note, I do have to mention I have found that if the person feeding them tickles their lower lip with the spoon vs. poking or jabbing the spoon into their mouth, they pop open like a little bird. Just like a baby. We don’t jab the spoon in their mouth. We make it a game, soft, gentle, loving. It’s amazing the difference our approach can make. In addition, our attitude towards feeding them adjusts and is much more playful and positive. I believe they can feel our energy and react to it, even when they “appear” non responsive, just as your Mother responded to you this weekend.
As for your comment on the “tracking system” of being a good visitor, change it! Remove the date. Make it a journal of events and comments. By this I mean record what happened on your visit. How cool would it be to share your experience not just with family and friends, but the staff. Your experience like all of our experiences can teach others new ways.
Suggest visitors tell a story of the past to your Mom and document that special moment in time for others to learn about. Bring a picture to share and maybe write a brief description about the picture.
Even though your Mother’s eyes may not be open we have all heard stories of people who have left their body and see what is going on around them. I’m not saying this is happening, but I’m sure not saying it isn’t either. The photo can also help the next visitor to learn more about your Mom.
We need to get out of comfort zone on how things are done. If the visitor log is causing guilt and pain for others, I say it’s time to change it. That was never the intent of it, so mix it up to provide value to all. If you are feeling this way, so are others.
Make a poster board for pictures and have a spiral note book for stories. There is no right or wrong mode. We just have to keep them in mind first and acknowledge our feelings and make changes to align everything we do in a positive light.
Thank you again for sharing this part of your journey. I have learned so much from you as I am sure others have as well.
I hope you continue to be an active member of our community. I believe we come to unity through community!
Thanks again
Lori
Just wanted to say hello and hope all is going well with you 🙂
HI Michelle,
All is good at this end. I am so happy that you were able to see your Mother’s response to you. It is such a gift when we are able to witness their essence communicating with us. Even though so small, basic, and hidden; it is so powerful and touching.
Thank you again for sharing your story with us. It was a true gift to all of the readers. Please keep me posted on how things arre going with you.
Lori
Hi Lori –
Thanks for thinking about me. I didn’t go this weekend to visit Mom – I was feeling a little under the weather. For some reason I could not get warm and had to have several blankets to keep me comfortable. Even though the weather was beautiful this weekend (60-70 degrees)…we had to turn on the house heater because I was chilled to the bone. Feel a little better today (70 degrees), but I am sitting at my desk with a space heater on 🙁 So I think for now, I better not try to visit with Mom.
I placed a call to the hospice office this past weekend and wanted to know if they provided follow-up phone calls to family members. I needed to know what they felt was her health status. Little did I know that they did return my call, but my darling husband never even mentioned it to me until I saw a phone number written on a little piece of paper with the words “hospice”. I asked him did they call and he said yes. He is certainly not the one to leave a message with…lol
So I will call again today to see if someone can return my call. Also, I wasn’t aware that they don’t visit on the weekends. Is that true where you live?
Funny…I told my husband that my mom is “fighting” to stay alive.
HI Michelle,
Sorry to hear you aren’t feeling well. there is a lot of thay going around these days! Hopefully you are back up and running 100% soon.
As for hospice, typcial I have found depending on what services they are getting, weekends are not covred by administrative people, unless they are in very end stages and then services are notched up.
Funny on the message thing. I think that is typical in every household! There always seems to be a message floating in the ari at our house too, waiting for the right person to stuble over it.
It is interesting that you mentioned to your husband that your Mom is “fighting” to stay alive. You must have picked up on something she is not yet comfortable with. My guess is, your connection was one of them.
I hope you continue to stay in touch. It’s nice to hear how others are doing when dealing with Alzheimer’s and all the little tidbits it effects in our lives.
Best of luck
Lori
Good morning Lori…Hope all is well with you. It is rainy and cold. Hubby has been home not feeling well all this week. He even stayed home from work, something he NEVER does, so he must be feeling bad.
Spoke with my mom’s hospice nurse yesterday and just mentioned how my mom cries. She explained to me that sometimes this may be her way of acknowledging you. Do you find that to be true? I thought perhaps that she may be in pain, but she told me they have a way of noticing if that is so. She will be assessed next month to see if she will continue with the hospice care. She said if she continues to have weight loss and not eating well…that she will be able to have the hospice care. As weird as this sounds, I hope she will continue to be eligible for their care.
The nurse also mentioned that her sleeping is normal. She seems to always be asleep whenever I call the nursing facility. I thought they were giving her meds to make her sleep, but she said that is not the case. She said that in the final stages sleeping a lot is normal. Do you find that to be the case?
I plan on visiting with my mom this weekend. Just to connect again and touch. Can’t wait 🙂
Take care Lori and have a wonderful day 🙂
Hi Michelle,
It’s good to hear from you. Sorry your Hubby is sick. Hopefully he is not a whiner. LOL No really, I hope he doesn’t have H1N1, but if he usually doesn’t stay home you know he is feeling pretty bad. Maybe some good chicken noodle soup will perk him up and he’ll be up and running soon.
You asked a couple of questions.
Let me address the first question on crying. Here I have to agree with Hospice. I have found their cries are different for pain, then when acknowledging someone around them. As I say that I’m trying to figure out how I know that. I guess I look at their eyes, mouth, facial expressions, and body movement in general to tell me. Do their eyes look soft and calm or fearful or painful? Does their mouth look peaceful, smiling, or is it unaffected vs. twisted and tight. If they start to twist their face, or body; or twitch I find this is usually a pain situation.
Bottom-line, if I’m still not sure I pray for guidance and something usually comes to me. It makes me feel calm and knowing. It maybe a voice I hear whisper in my mind, or just a gut feeling that settles with me to guide me in how to handle their reaction.
As for your second question on sleeping, I too agree with hospice. I have found sleeping in very typical. I find I look for signs of frustration to tell me if things are not in sync. I look for those facial signs, the eyes, mouth, the body movements and sounds. I find with my Mother she is perfectly content being in bed. In the earlier stages would be upset and not ready to go to bed. She was uncomfortable. This is not the case anymore. As long as she is content, peaceful, and happy; I’m ok with it.
I think part of how I got to this point is I now accept who she is today. I no longer feel the need to have my “Old Mom.” I’ve let that image go in a sense. I remember what she was like, but have accepted that imagine as part of the past. I try to enjoy her as she is now, even if that means she is tired or non-responsive, compared to how she used to be. I have learned to look at the subtle signs she gives me. I have learned to connect with her on a deeper level. One I did not know existed prior to her disease.
You also talked of hoping your Mom remains on hospice. I totally understand. My Mom was on hospice and then was taken off because she gained weight and didn’t qualify any more. Mom had been losing weights for about the last year up until hospice started. It was a double edge sword. Even though you hate to have someone on hospice because you know it’s toward the end of their life, you still want them to have as many services to keep them comfortable and to assist in providing a wonderful quality of life. It’s a mixed bag. For our family we will most likely have to go through the process of signing Mom up at another time for hospice.
I hope these answers help you when you are connecting with your Mother. Have a great visit with your Mom. Let me know how it goes.
Lori
Good morning…The hospice nurse said without a doubt she will continue their services. Her body weight is now 80 pounds. I never asked about her weight in the past, I just saw that she was getting smaller. This time I was curious and just wanted to know the number. My best friend found that was odd that I asked how many pounds she weighed. Maybe I am missing something…I just innocently wanted to know.
Initially my mom never wanted to get in the bed. She was always out and about walking, but she was hurting herself because she was banging herself into wall and doors, falling out of the bed because she HATED sitting still. She would roam the hallways literally 23 hours a day and was so extremely tired, but she fought getting in that bed.
Lori I haven’t seen my mother’s eyes. I miss them and I wish I could hear her voice again. That makes me sad…even as I am typing this 🙁 Sometimes I try to think back to conversations with her “just to hear her voice”.
On a good note her nurse said that my mom was sitting in her chair the day before and she casually asked my mom her name. She responded “Elizabeth.” The nurse was ecstatic and I just couldn’t believe my ears 🙂 She asked her how she was doing and my mom said fine. The nurse said she never saw her so expressive and I could feel the genuiness in her voice. That made me happy…and showed me that the nurse actually cares 🙂
On a funny note…my husband is extremely independent and takes care of himself. I think I am bugging him when I ask, do you want water, juice, soda, soup, etc. Thank goodness he is not a whiner…but WILL NOT go to the doctor. He is fine today and wants to go out and get some air. He seems back to normal. But I am keeping him away from mom. I will visit her on by myself and make him wait in the car…lol. The nurse even mentioned just rub my mom’s hands and no kissing in fear of spreading any germs that I may have caught from my husband. Oh well, I’ll see.
I had the opportunity yesterday to see the HBO series on alzheimer’s disease. It was very touching. Saw it on the computer and it moved me.
Hope you have a wonderful weekend and looking forward to hearing from you soon.
HI Michelle,
How cool the nurse heard your Mom reply to a question. Maybe on one of your visits, you too will be given such a gift.
My Mother still says words or phrases at times, but I remember this past Jan or Feb when she said my name. I had not heard her say my name in about 3 yeras. I just burst out in tears as I smiled and lookeed at her. I couldn’t take my eyes off her. I was amazed. It is a moment I will never forget.
It also sounds like you are building a wonderful relationship the staff as well during this process. I can feel te shift in you words. I find most staff do really care, but many are unsure of how to communicate with familes. It is a blessing when that two way communication opens up on such a personal note. It just makes everyone more relaxed and comfortable.
I will pray that your Mother also finds the strength to open her eyes for you, even if for a brief time. We can read so much information from looking at the eyes.
As for holding your Mom’s hand don’t forget the “hand sanitizer,” for both of you. Then I would suggest bringing a samll bottle of lotion and just rub it gently into her hands and arms. They usually love to be touched gently at this stage of the disease. I think it’s something our bodies crave, and the more non-responsive they are, the less touch they get. My Mom moans and groans and yahs, in satisfaction. One time she got a bit loud with her coooing and the staff came down to make she everyhting was ok. It was so funny!
Have a wonderful weekend.
Lori
Hi Lori…
Hope you are well and everything is fine with your mother 🙂
I didn’t visit this weekend, pretty much due to laziness on my part, but phone reports were good. My mother had her hair done yesterday. Normally it was a major problem just to get her to sit still, now she is very compliant.
I am dreaming constantly about my mom and even get to “hear” her voice in my dreams. Everything is normal when I am dreaming about her…then I wake up…back to reality 🙁
Not to much to talk about today, other than I have a headache that is horrible. Started taking Ambien CR a couple of years ago so that my brain could rest and now I am trying to stop them. It is soo hard because I just can’t sleep. My mind is always racing. One of the side effects from stopping is headaches. Sorry Lori, I have so many issues.
Other than that, everything is fine and I had a decent visit yesterday evening with my sister and her husband. First time in a long time since my mom has been sick. Good visit 🙂
Take care Lori and hope to hear from you soon 🙂
HI Michelle,
Sorry to hear you get headches. I get them too. They actually were much worse when I wasinthe thick of the caregiving role. Now that Mom is in the nursing home and settled in, they are few and far apart.
Have you tried any meditation? I have found meditation to be a miracle in and of itself. It has helped me in many areas of my life. Just thought I would throw it out there.
It’s nice to hear you had a good visit with you sister. I’m sure that was a wonderful gift to remove the tension.Did you share with her your experience when you went to visit your Mom? I’m curious what type of intereaction and reponse she has had and what she thought about your viist.
Please continue to keep in touch. Take care
Lori
It’s nice to hear you had a good visit with you sister. I’m sure that was a wonderful gift to remove the tension.Did you share with her your experience when you went to visit your Mom? I’m curious what type of intereaction and reponse she has had and what she thought about your viist.
To answer your questions — we don’t share our visits with each other about our mother. We are quite the weird family…lol. Sad, but true. I can only share these experiences with you because I KNOW you understand.
Just need to mention within the last two weeks my mom is completely non-responsive to everything. She does not respond to touch or even when I am talking to her. There are no expressions whatsoever and it makes me so sad. This past weekend I only stayed for a few minutes. I had the opportunity to finally meet her male nurse. He normally works during the week, but he was there this weekend. He is a wonderful and caring person who always takes the time to answer any questions that I have when I call during the night time hours. So it was just nice meeting him in person.
I was a little concerned because she did not have the soft restraint around the chair and I was a worried that she might fall out of the chair. He said she doesn’t move AT ALL and they keep her in front of the nurses station just to keep an eye on her.
Hope things are going well with your mom. Take care Lori, and hopefullly will talk to you soon 🙂
Hi Michelle,
It is so nice to hear from you. I was wondering how your holiday was.
I glad you were able to connect with the Nurse who takes care of your Mom. He sounds wonderful 🙂 I think it is nice how closely they are watching her and trying to keep her comfortalbe yet in an area of stimulation, just in case she would decide to respond. Many places would just keep her in bed.
I’m sorry you and your fmaily aren’t able to share your visits, but I totally understand the “weird family thing” I don’t know if there really is such a thing as a normal family. LOL Anways, I haven’t met one yet! We all have our quirks if we admit them or not.
My guess is, for what it is worth, is that your Mother has found peace. Most likely due to the fact of your visits. Keep in mind even though she may not respond physically, her soul knows and feels your presents.
As hard as it is for you to see her so still, know that she is not in pain. It sounds like she is definitely in goods hands with staff and in a safe environment.
Bottom line there may not be anymore you can do to “pull your Mother out.” It was a gift to have the response you did the first time, although as loved ones we always crave more.
Know you did a wonderful thing telling your Mom how much you love her, touching… sharing a huge piece of yourself with her; and then her with you. That will be a moment to always hold onto.
You may have more time with her yet. My Mom has gotten very still and I have thought, that’s it we are at the end, and then boom she surprises me again and we have a wonderful connection. No matter how brief, it still counts in my book and is something I hold onto dearly!
So I guess I’m saying don’t give up. Just continue to visit. Talk with her, touch her. You don’t have to stay long or even say much, but it will not only help you, but help your Mother in the long run as well.
You continue to be in my thoughts and prayers
Enjoy the holiday season and keep in touch!
Lori
Your are such a kind woman. Your words touched my heart. It just makes me so sad that my mother is “still”. Do you think it is the end for her? As much as I hate her having to live the way she does…I want her to be at peace…and to go in peace.
I am going on a cruise coming up on Friday and dread that something might “happen” while I am away. I sort of feel a little funny about leaving while my mom is sick, but we have been planning this cruise for an entire year.
My poor mother…she is just skin and bones and always sleeping. It just makes me so sad 🙁
Just glad that I told her that I loved her and had the opportunity to touch her. It hurts so much.
HI Michelle,
One never really knows when the end will be. All we can do is what we feel is best at the time. You have done very well! The steps you have taken in the past few weeks has been amazing and heart warming. Your Mother I’m sure is very proud of you, and thankful to have such a brave daughter, willing to remove barriers of a life time.
Your Mother knows you love her. Always remember that. I know it may be difficult to think of leaving on your trip,but I don’t think your Mom would deny you your cruise. If you lived your life by the philosophy of putting your life on hold when your Mother was ill, you probably would not have taken time out to care for yourself when you had cancer, nor married your husband. (if my memeory is correct with timing of events in your life)
Your life is just a critical to take care of as your Mother. Making plans for a year in advance to take a vacation is normal and needed. You know your Mother is in good hands where she lives. Maybe finally meeting her nurse was no mistake, but God’s and the Universe way to help you live your life and enjoy your vacation without guilt putting a damper on your vacation.
I am a believer everything happens for a reason. There are no mistakes in life, just lessons to be learned. Know you are a precious daughter who has given your Mother so much.
You can let the staff know you are going on vacation and your sister too if you feel that is appropriate. All will happen when it is suppose too.
I’ll never forget someone telling me not everyone wants their loved ones around when they pass. Sometime they feel it is easier to pass on when they are alone.
Also keep in mind, what are the chances if you stayed in town, that you would actually be there when she passes. Timing is difficult at best and this whole thing of us controling life and death, well in my opinion it just isn’t so. There is a greater plan then one we know of and we must have faith it.
I suggest if you are able to visit your Mom one more time before leaving on your trip. Hold her hand, touch her face, tell her you love her and that you are going on vacation. If you feel the need to tell her it’s ok to pass on if she is ready, then do so. But also let her know you are planning on visiting when you return if she is not ready to go.
My heart goes out to you. I know this must be very difficult, but again the big barrier is down…Your Mom knows she is loved and how much you care for her.
I hope you go and enjoy your trip. Appreciate your time off to take care of yourself and your famil. I hope you too are at peace with your decision, just as you want your Mother to be.
Thanks for the update. You will be in my thoughts and prayers. I’m sending you a big hug!
Lori
Good morning – It seems to me that the hospice staff and the nursing home staff are at odds with one another as far as dispensing meds to my mother. She was given Megace to increase her appetite, but continues to refuse food and continues to lose weight.
The hospice nurse that I spoke with last week would like to discontinue the Megace because they feel it is a waste of time and my mother refuses to take the med. The nursing home staff wants my mother to continue taking it. It seems like they are fighting one another.
Then last week my sister decides to have the morphine discharged because she doesn’t want my mom to have it!!!! Like I mentione to you earlier, I am the POA and my sisters or brother do not have the authority to make those decisions for my mother. The nurse that I spoke with yesterday does not want my mom to have the Morphine either. WHAT IS GOING ON???
My mom is in visible pain because when you try to touch her hand she frowns. I was told her doctor examined her to make sure that her hand was not fractured. It’s not, but it is very swollen.
When I expressed myself to the nurse about wanting to continue with the Morphine as needed (it could be just my imagination), but I need my mom to be comfortable and they seem to be trying their best to keep her alive by any means necessary. Would they want to live like that? Am I some evil person who wants their mother to die? I WANT MY MOTHER TO BE AT PEACE…sorry if I am a person who is honest with how I feel about my mother.
Is the nursing staff so shocked and appalled when they hear me voice my thoughts about my mom? I feel that this is the only place I can express my true feelings and thoughts.
I had the nicest mother in the world who did anything to make sure that her children were taken care of…and she gave us anything we could ever want…even before we even asked for it. All I want to give my mom now is the peace she deserves and I pray to my God that he gives her that relief soon 🙁
Hi Michelle,
I lost my first reply so let me try again. Yikes computers!!!
First I’m confused as usually when hospice comes in they oversee all medical decisions and the nursing home staff is their to carry them out.
These would be the steps I would take if it was my Mother. You can decide for yourself:
1) Call hospice and tel them you want this issue resovled. Ask who is in charge and talk with the nurse manager or social worker assigned to your Mom. Review you are the one in charge, the conflicts with siblings and the nursing, your desire to have your Mom pain free and comfortable. Hopefully they will get on top of things and you will need to go no further. if not,
2) Talk with the nursing home administrator and tell him/her your concerns. Make sure to give all detail to him as hetypcially won’t know the details. Let him know you want his resolved immediately and expect a call back updating you as to where things are at and what you can expect in the future.
3) If you get no where there, then let the administrator know you will be contacting the Ombudsman Program, Usually they don’t want to get “outsiders” involved.
Here is there contact info and a bit about them:
Office of Ombudsmans of Older Minnesotans
PO Box 64971, St. Paul, MN 55164-0971
651-431-2555 651-431-2555
800-657-3591 800-657-3591
http://www.ombudmhmr.state.mn.us
An Ombudsman is an independent consumer advocate who handles complaints against the government or government regulated agencies. We work with consumers citizens nursing homes, hospitals, home care, social service agencies and public agencies to enhance the quality of life and services for individuals receiving health care and supportive services at home in hospitals nursing homes annd other community setting such as housing with services adult foster care and adult day centers. We also advocate for reform through changes in state and federal law and administrative policy.
4) You could look into moving your Mom to another nursing home, which I know is a lot of work for all parties involved and would be difficult on your Mother as well. If I did that I would most likely change hospice programs, if I felt they were not representing my Mother’s best interest.
Good Luck. As always you are in my thoughts and prayers!
Keep me posted.
Lori
Just talked to the nurse manager about 2 minutes ago and she will be calling me back to get to the bottom of this.
Will let you know what happened.
It has been cleared up. The hospice manager called the nursing home and instructed them to stop the megace. She will get meds to keep her comfortable from now on. I was uncomfortable for the pain that my mother was experiencing the other day.
Shortly after that the nursing home called and told me that the physician was the one who ordered the continuation of the megace, but she will inform him that it should be discharged and only comfort measures be given.
Lori, I think it has finally hit me. My mom is dying and I am so upset right now. I need to cry, but I am at work. My mom was able to sip some milk and swallowed about a half teaspoon of pudding. Now I am thinking…should I allow her to die like that or let them continue giving her the meds to increase her appetite. Its so confusing, but I won’t be able to handle the guilt if she should die. I don’t want to feel like its my fault because I stopped the appetite stimulant medication.
This is soo hard. I want my mom to be at peace, but I can’t handle feeling like i am hastening her death.
Thanks for listening.
Oh Michelle,
I can feel your pain and know I too will most likely be going through what you are now with my Mom.
I went through something similar with my Dad that I would like to share with you as it might be helpful to you in this process. I was the one family member who said “NO” to giving my Dad a Pneumonia shot. My family looked at me like I was nuts, but I felt deep in my heart it was not going to make him better. Not going to make him the man he was or the man he still wanted to be. My Dad was dying and I felt so strongly in my mind, my heart, and my soul; knowing him the way I did he would not want to continue living as he was. He could no longer communicate. He was wheel chair bound, Incontinent, and the list went on. He was slipping very fast.
Hospice stood by me with my decision at a family meeting, saying I was right. This shot was not going to “fix Dad.” It would just prolong his life and as a family we knew our loved one the best on how they would wish to continue to live. They helped the rest of the family remove their egos and needs, and put Dad’s needs first. After that discussion all agreed it would be Dad’s wish and right not to have the shot.
You know you Mother very well from what I have seen with you. You understand, she is dying, no matter how difficult it is to accept and want to change that fact. You seem to me to be putting your Mom’s wishes first. If you weren’t, it would not be so painful for you. You love your Mom and she knows that. Your decision is coming from a deep source of love. It’s probably one of the “toughest loves” there is to have, to give.
Maybe hospice can help your family understand the true situation. That your Mom is dying and it’s time to accept that fact and make peace with it. To use this time wisely to say whatever needs to be said. To respect her as a person. To allow her die with love and dignity.
My heart goes out to you. Michelle, you are a very strong woman. You have been through a lot and you will get through this too. If you always keep you Mother’s wishes first, her needs, her dignity first you can’t go wrong. This process of dying is about her; no matter how much it affects everyone else. It is her life story.
My prayers and thoughts will be with you. Know the tears you shed are drops of love and courage as you pass through yet another stage of life.
Lori
Thank you Lori. Along with God, you are my strength during this most difficult time.
I will post back later.
HI Michelle,
Just always remember you are your Mother’s Angel!
Lori
I appreciate what you wrote about your Dad. That had to be a tough decision to make. Like your Dad…continuing to give her that med for appetite stimulation will not make her better.
I can’t recall if I ever mentioned this to you…but my mother would always joke around and tell me to keep her alive by any means possible. In the back of my mind, I wonder if she meant that. That is what haunts me. Phew…I got that out and I feel relieved to say that. I’m sorry Lori…I have so much that I stress about with my mother…past conversations with her and wondering if I should be doing what I am doing with her care. I guess I just need someone to “approve” what I am doing. This whole situation is daunting and makes me feel physically ill.
Sorry Lori…you allow me to vent and I appreciate that. I am also reading other message boards during the day to see how others have and are dealing with their loved ones with alzheimers. Sad to say, I have yet to read of anyone feeling like me 🙁
You know what I just realized Lori…I am so busy talking and venting with you…that I NEVER ask how YOU are coping with your mother.
Just wanted you to know that I do care about you too.
Hugs 🙂
Hey Michelle-
You hang in there girl. You are doing a wonderful job!
It maybe that in the message boards you are reading people just are not ready to be open and honest with their true feelings. Personally, I think that is the only way to survive this process. Society in general needs to know what Caregivers are really going through. Not just the physical care, the emotional and psychology impact it has and how it weaves through families.
My guess would be if your Mom is like my parents and she sounds a lot like them, her comment of “keep me a live at all costs…” when said with a smile or witty tone was meant she was enjoying life, things were good so I don’t want to leave yet. In today’s case, life is not so fine and so it takes on a new tone.
My vote for what it is worth is you know your Mom. Is her life today providing her with good quality of life? If not, you are in my opinion, are on the right track. But if you feel she would think she has good quality of life, then possible time to rethink things through. Remember too, hospice comes into play only at end stages, when all hope of improving is quality of life other then comfort and pain relief is gone. They are on your team and that to me says a lot.
Try not to second guess yourself too much. I know it’s tough. I’ve been there. So close your eyes, and pray for guidance. Ask your Mom what she would want you to do. Usually the answer comes through strong when we listen closely. My thought here, is that you’ve already done this and heard the answer, that’s why it’s so painful. It’s hard for us to let go of loved ones at all stages, but true love does what is best for them in the end.
Take care… and I know you care about me too. It’s almost impossible not to care for another when you are going through this and meet someone who understands your struggles.
Love ya-
Lori
I so look forward to your replies.
Gotta be honest with you…my name is Sheri. My mother always told me that she wanted to name me Michelle, but chose Sheri Instead.
Well I look forward to your replies as well. I feel like we are old friends! As for you name, I figured it was’t your true name, and you maybe using an alternative name for privacy reasons; so you tell me how you would like me to address you? Michelle will be less confusing to anyone following the blog given Michelle is in your signature, but it’s your call. I just want you to feel comfortable.
Lori
Michelle is fine with me.
Can’t wait for this four day weekend…to rest and relax, watch old movies. Its snowing here in Philly. I cannot believe this weather. I thought we were finished with it. We just had 23 inches of it and I am so over it…lol
I feel like we are old friends too 🙂
Have plans on picking up my grandson tonight. He is a little over a year old and is absolutely adorable. He is my only son’s child. My mother would have spoiled him rotten, just like she did my son. He never wanted for anything, just like she did with us 🙂
How are things going with your mother?
HI Michelle,
Glad you are looking forward to this weekend. It sounds like a fun time.
I was looking forward to mine too. I was planning on having my Mom’s 82nd Brithday party at the nursing home, but I’m sick and can’t be around her, nor should I be around anyone. I ‘m feeling bad I had to cancel and am hoping others in the family will still go to see her. I’m also taking care of my daughter who hurt herself sleding. Really messed up her tailbone, but at least today she was able to take a shower. She is in so much pain. It’s going to be a long healing process.
Enjoy your New Yars Eve! Cheers to a great New Year.
Hi Lori…Sorry to hear that you are not feeling well. Were your other family members able to visit anyway?
Your daughter…her pain must be terrible. I can only imagine.
Had a good weekend, mostly relaxed and watched movies. Nice time.
Feel better 🙂
HI Michelle
Thanks for the get well wishes. I’m still sick, but went my Chiropractor to get some homopath meds. I should have started there, these over the counter drugs don’t do anything for my head cold. I have my fingers corssed this stuff tackles it!
As far as Mom goes, yes the family did step up. Both Brothers and my nieces. all got a reaction, although each was different. I’m going to try to write about it a bit later today. I have several things to do and this is my first day up and running…well walking and moving slowly, so I’ll have to see how long I last.
Take Care 🙂
Mom is not doing well and her doctor said she has maybe a couple of days left. Lori…when I went to see her yesterday it was a complete shock. She has changed so much over the last week.
She is on morphine to keep her comfortable and I believe she was trying to connect last night when she knew we were there. Her forehead was constantly moving. If I had your number I would have contacted you…I just needed to talk to someone who understands.
There is no talking to my younger sister…she actually didn’t want to even speak with me when we entered my mom’s room. I wish I had a normal, loving family…but they are not. My brother and my other sister…we have made amends with each other, but the younger one is a piece of work!!! She is now saying that my mother has a will and all this money that was to be given to us if she died…well, there is no money and no will. She is even talking about bringing charges against me. The list goes on and on. She was the one I would have never thought would be the trouble maker. And the lies that she told my sister about things that I never did…are beyond belief.
Anyway, enough of that…hope you are feeling a little bit better today, as well as your daughter.
Will keep you posted 🙂
HI Michelle,
I emailed you privately with my phone number. Please feel free to call. I’d be glad to talk and try to support you through this difficult time. I’ve beenin meetings back to back all day. I’m home now. My prayers and thoughts are with you.
Lori
Still getting calls from the nursing home and hospice nurses saying that mom is peaceful. That is all that I ask.
Hoping you are feeling somewhat better.
HI Michelle,
Your journey with your Mom has touched me on many levels. More then you will never know, and I’m sure has done the same for many readers. I thank you for sharing and being so honest about your struggles and your joys with your Mom.
You have shown great strength and love throughout our conversations. I admire your love and connection with your Mother. Something it sounds like your siblings have missed out on. Their great loss.
It’s nice your Mom hung on through the holidays for all of you. She rang in the New Year knowing how much you love and care for her. She may not have seen the ball drop or lift a glass to cheer in the New year, but she felt the warmth of your love.
I’m so glad hospice is staying in touch with you, that in and of itself must be reassuring to you knowing she is being well cared for. Please feel free to call me anytime. That means the middle of the night if you need someone. I will answer my phone.
You and your Mom continue to be in my thoughts and prayers.
Lori
Hi Lori…Thanks for your encouraging words.
I made…sadly…the final arrangements for my mother yesterday, my husband and I. Surprisingly, I was okay, but it felt weird doing that – knowing that we are waiting for her to pass on. My sister is with her now as we speak. Thank goodness for her. We have finally made amends with each other and for that I am so thankful. My other siblings…that is another story.
I will keep you posted and thanks once again for being here for me through this sad journey.
HI Michelle,
I am so glad that you and your sister have made amends. I am a firm believer from personal experiences and other’s stories, that your Mother knows this. She feels the change between the two of you. I will pray your other siblings jump on board and also begin to heal relationships so the family can move forward together.
Even if the rest of the family is unable to make amends, the reconnection between you and your sister is HUGE! Congratulations to both of you. This too, is a life changing moment to hold onto.
May the grace of your God wrap his arms tightly around you at this time and keep you safe and peaceful at this time. May you feel his love by the warmth in your heart knowing you have done all you can for your Mother.
Remember, “When you truly love someone you will them let go, knowing the next step is best for them.”
Please keep me posted.
I’m sending you a big hug right now.
Take care
Lori
Hi Lori 🙂
Today was a bad day for me. I know my mother was going to die…but it seems surreal. When I looked at her in the funeral home I just couldn’t believe she was actually gone. I looked so hard trying to see if I could see her breathe. Yes, I know it sounds weird, but I stared at her for about 5 minutes.
I just can’t wait until Saturday is over. But at last I can finally go to sleep and NOT dream…and to me that is soo peaceful. It seems like I am finally resting.
The support that I am receiving from friends is wonderful. They remember countless stories about my mom and I enjoy listening. But this lump in my throat…I wonder if it will ever go away…it’s painful. I miss my mom and wish she could see all of our friends who loved her so. She knew it, but I wish she could see all the support my sisters and I are getting.
My poor brother…I feel so sorry for him. He is just torn up and I know he regrets the things he has done over the years that brought my mother much heartache. But he made amends with my mom near the end, and I told him to just be happy he did that. I still ache for him.
Just wanted to update you to let you know how things are going. It’s a sad day with my mom 🙁
HI Michelle,
Having a bad is normal and to be expected whenever we experience great loss. There is no right or wrong time when these periods hit us, we just have to feel it and move through it. Time helps us heal.
I want to thank you for updating us on how you are doing. Personally, I’ve been wondering how you and your family have doing, so it is a relief to hear from you even though times are tough.
I’m glad to hear you have a great support system, with good friends. In addition it is wonderful to hear everyone had a chance to make amends through the process.
We all know there is no way to truly prepare for such a devastating event, but hearing how others like yourself deal and cope with their own personal situations is insightful. I want you to know how important your sharing is, as it helps the rest of us preparing for the same journey.
Last, I wanted to point out one thing in your writing you may or may not have noticed. It’s the last sentence you wrote, ”It’s a sad day with my mom :(“
Note the word WITH. Your Mother will never be lost or part of the past as you carry her with you everywhere you go. She is now your guardian angel, just like you were for her when was ill.
Take care and know my thoughts and prayers are with you and your family.
Lori
hi lori…yesterday…not a good day. the nursing home business office called me to say there was a balance in my mother’s account and they wanted to know who the check should be made out to…her estate or the funeral home. they suggested the funeral home, so i went with that. for some reason the call left me a little upset, but i went about my day. i had to take some paperwork to another office and decided to take a walk outside. i guess i was so preoccupied that i ended up falling down on the sidewalk and a kind gentleman help me to get up. i decided at that time that i had better get back to my office, but while doing so i was limping and in a bit of pain. well because i fell during working hours i had to go to the emergency room and i now have a fractured ankle. can you believe it??? but prior to going, i sat at my desk nursing my ankle and when i opened my desk i saw my mom’s obit. i became so upset because i thought how she would have been at my side during my visit to the er. i hate that my mom is not here and i miss what she would be doing for me if she were alive.
at home today nursing my ankle back to health and have sweet hubby waiting on me…hand and foot…lol
take care lori…and hope to hear from you soon. how is your mother and daughter doing?
Oh Michelle,
What a horrible day, from the draining emotions of loss and grief to the physical pain of your ankle. I’m so sorry you had bad day, but there were some good spots in your day. I know it’s hard to see them when we are filled with sorrow so I’d like to take a moment and point them out to you, and when you’re ready you might decide to remember this “fractured day” differently.
1) For example, having a “balance.” Extra money is always a good thing. It would have been more welcoming if it wasn’t associated with the loss of your Mom, retriggering your grief. I’m sure that is why you felt upset. That would be unsettling to most any one of us in your situation.
2) The kind gentleman who helped you up when you fall, that was a wonderful gesture.
3) Now the emergency room and the fractured ankle that’s never fun, but I do see a fantastic opportunity to shift this story. You mentioned you hate your Mom is not here and couldn’t be with you at the hospital. I totally get your thought process and have had many days where I focus on my loss and feel sorry for myself, my loneliness. It’s a natural thing we do. What if you look at opening your desk drawer and seeing your Mother’s obit, as a sign she was with you. That she was trying to tell you she is there for you just in a different realm. Think of her as your Guardian Angel, always at your side, always in your heart, always connected to you. If you can shift your thought process to accept The Guardian Angel concept your reality will most likely become comforting. You will feel loved, cared for, not alone or abandon; only reassured your connection with your Mother lives on past this physical world in which we live.
Hi Lori…just checking in to say hello and hope all is well with you. Good to hear that your daughter has a nice boyfriend. It is so wonderful when we can be happy.
Ankle is doing okay…still hurts 🙁
My sister and I have been communicating through e-mail A LOT today. I apologized once again how we were not able to share our grief with one another because of all the hatred and anger that was going on. I will paste a portion of what I wrote to her:
“just sad that we had to go through all this anger and hatred for one another, but i am praying that we will be peaceable towards one another and just look forward to the time when we will be able to greet mom again when she wakes up…fussing and all 🙂
i felt like i never got a chance to grieve mom because of the ordeal of the taking care of all the financial matters associated with her care. it was sheer exhaustion and many days spent crying over it. her sickness devastated me in ways only Jehovah knows.
Guilt…I have none and neither should you. You showed me a side of yourself that i never known and i appreciate all the tender care and concern that you showed to mom. i will never forget that…and you never talked about what you did…i saw it…and that is a sign of a mature christian woman and daughter.
during mom’s illness we never talked about how we felt…but i knew how you felt. even our brother…he was cut at the heart…but not enough to make the changes necessary to see mom again. i feel sooo sorry for him. our sister–always had to be seen and heard–always wanting others to know what she did and how she did it. that is one reason why i NEVER signed in when visiting mom. i felt like she counted how many times i went to visit. maybe its my paranoia, but its how i felt. i remember one time you said she asked you if i ever went to visit. that made me know that she would “look” to see if i came to visit. i never wanted to run into her so i would make it my business to go when i thought she wouldn’t be there. the only time i ran into her EVER was that Monday…the few days before mom died. and it was a terrible time.
enough for now…thanks for listening and tell say thanks to your husband too…”
we corresponded that this all day long and i am glad. so happy to make amends.
i will write tomorrow…leaving work now…and hope you are well.
Good morning Lori…hoping everything is okay with you 🙂
HI Michelle,
I am so sorry to be so late in my response. I am on vacation and trying to reenergize myself. Hanging out by the ocean and just playing always does it for me. I’ll be back up and running steam ahead tomorrow.
I am so glad you and your sister are communicating. You are both on the same path. The path of repairing and building your relationship to a strong united front; filled with respect, love, and understanding. Your Mother, I ‘m sure is proud watching the two of you embrace one another once again.
It’s funny how the passing of others can be a blessing to us allowing a mind and heart shift, bringing us closer to those left behind. I believe this is part of the purpose of souls passing. It’s their last gift and lesson to us in this world, as they watch the puzzle of life shift and piece itself together deciding how we will touch each other’s lives.
Life is good here at this end. I hope to get a post up soon on my Mom’s 82nd Birthday Party with photos too. 🙂
Continue your journey. You are walking down a wonderful brillant path!
Lori
Good morning…I was afraid that something was wrong…but am so happy to hear all is well with you.
Can’t wait to see photos of your mom 🙂
Take care.
Just looked at the beautiful pictures of your mother. Looked like you guys have a nice time.
I know you will treasure that forever 🙂
Hi Lori…Miss you 🙂
I was dealing with a health issue. I thought I had a recurrence of the breast cancer with metastases to the rib. I have been in a lot of pain for the past 2 weeks and finally went to see my family doctor. Long story short…I am fine. Had to get a chest x-ray with rib series and the radiologist said there was nothing seen. I cried, but all the time thinking I wish I could call my mom on the phone just to talk this out with her. She always reassured me whenever anything was happening to me. I miss that sooo much 🙁
Still much tension with my sisters. Really, haven’t seen them since my mother’s memorial service, but has spoken to them on the phone once. Sad, but it’s better, because they seem to have so much distrust or whatever!!!
One thing I have learned from my mother having this dreadful disease…if I could past this on to others who might be going through this….try to be nice to each other. You really do need each other, just to be able to have the memories together and to be able to reflect about your parent. I wish we could do that with each other, but I guess it is over. My younger sister, I am not surprised. She was the one I told you was adopted and came to live with our family at 5 days old. She was truly loved and I especially loved her dearly. She is now 43 years old and seems to hate all of us and especially me. I feel sorry for her. Maybe one day she will see that its okay to need people, but she thinks having MONEY is all she needs. It’s not, you need the love and companionship of your family most of all. Yes, she has a nice husband who goes along with anything and everything that she says.
Everyone try to get along with each other. Don’t let the death of your parent tear your siblings apart. It’s not a nice feeling 🙁
I’m so sorry Lori, how is your mom doing? Is she comfortable and still smiling. I still remember how she was so happy during that music therapy 🙂
HI Michelle-
I’ve missed you too!
I’m sorry you had such a scare. I know how hard it is just wanting that hug, smile, or soft words of encouragement from someone who can’t give them to you . You must have been scared to death about a possible reoccurrence of your cancer. I think that would be a pretty normal reaction for any of us, if we want to admit it or not. I’m glad to hear you got the all clear from your doctor. I’m sure it’s frustrating not know what the pain was caused by though too. I guess something we just aren’t to know.
I’m sorry things are still tense with the family. That is hard, but I do believe everything is as it should be. There is a reason for the distance, the distrust… and many times it has nothing to do with us at all. It has to do with their individual paths and lessons they need to learn. I think I’m probably like you though and take it personally. I try not to, and some days I do well knowing that but then there are other times I just want to have a melt down and cry for the loss and dysfunction.
As for my Mom I don’t’ know if you read the post I wrote about my cousins visiting a couple weekends ago and the pop bugging Mom’s teeth, but I went through the whole scenario of what to do if she gets an infection in her teeth and gums… all the options down to realizing at this point I need to follow her DRN request. That is what she would want and it is about her needs and desires not mine. Pulling her teeth would be trying to extend her life. I decided I would give an antibiotic but no teeth pulling as it would be so hard on her. It was a tough process but a necessary one and I’m grateful for being able to have processed all of this prior to an actually crisis at hand.
I’ve been in contact with the staff and visiting a lot to monitor the situation. Mom seems to be ok with her regular food (all mushed so she can swallow it). We just have to stay away from the pop for now. I hear the clock tick, tick, tick in my head knowing it is just a matter of time, but also knowing it’s not up to me to determine the time frame. It is God’s. I’m glad he has the job! I don’t want that one. My family doesn’t’ seem to get the end is near and what is to come, but that is their path. I can only walk mine.
I’ve been finding bobby pins all over my house and was starting to wonder if it was signs of my Mother, but my daughter says they are probably from her. I still don’t understand how they get in some of the places I find them or how they get there when she isn’t even around. I think I’m going to choose to look at them as my Mom letting me know she is around. It just gives me comfort and I don’t think there is any harm in feeling content. I deserve to feeling content and close to her even when she isn’t right in front of me so why not. Do you feel you get any signs with your Mom?
Love ya Hang in there
Lori
Hi Lori…I am just hoping and praying that your mom is not in any pain from her teeth. I agree with you that pulling them would be too much for her and why put her through that unnecessary stress.
Something like enjoying soda pop…it’s too bad she can’t even enjoy that!!! Is mom on any pain meds at all…just to keep her comfortable?? I remember my mother’s mouth was a mess, but I managed to get one tooth pulled and a partial plate for her while she was still “okay”. It was around the time I was getting married. It was a selfish move on my part because I wanted her mouth to look nice for the wedding pictures. But I think, no I KNOW she felt good about her teeth too. She just seemed to be smiling all the time. But, like I mentioned earlier, it was before she was even a resident in the nursing home.
One day when you get some time, I would like to forward pictures of my husband and I, along with pictures of my family. You will see my mom!! I will use my personal e-mail address to send them along. Just let me know.
I hear you…when you say you hear the clock ticking…not a good feeling. It leaves you anxious and on edge. But knowing my mom is at peace and not suffering helps me a lot. Signs-I don’t look for signs. I just hate that I can’t get the encouragement anymore from my mother that I NEED. I miss her so much 🙁
Lori, know that I am thinking about you much and praying for you to have the strength to endure.
Hugs,
Sheri
HI Michelle,
Thanks so much for your thoughts. They mean a lot to me. I would love to see pictures!!!!! Just send them to my email at Lori@AlzheimersSpeaks.com
Mom is not in pain from what we can tell. She is on strong meds for her arthritis which I’m sure is helping, but we are all watching her close. Mom is like family to so many of the staff as she has been in the nursing home over 9 years…Yikes it’s been a long ride.
Have to run. Thanks again for your thoughts and prayers. I’m sending mine back at you too girl
Lori
Hi Lori…Just checking in to see how things are going with you and your mother.
Praying that your mom is not experiencing any pain and is as comfortable as she can be 🙂
You take care dear and keep in touch.
HI Michelle
Mom is doing ok. Her teeth don’t seem to be an issue. It was just that one pop episode and we are not giving her pop any more. Now Mom has a bedsore so they are watching her close and changing positions every hour. I was a worried about her getting dehydrated but staff told me she is eating and drinking ok. They keep her music going and so I know that is calming to her. I’m so lucky the staff is great about communicating with me.
Hope all is well. The weather was gorgeous here today and going to be even nicer tomorrow…suppose to hit 72 degrees!!!!
Take care
Lori
Glad to hear your mother is doing ok. Also good to hear that attention is being given to her with regard to her skin breakage.
All is well. It is raining so much here and it is so cold, but the remainder of the week is supposed to be in the 70s. Can’t wait.
Take care dear
Sheri
Hi Lori…how are you? I’m hoping everything is going relatively well with your mother.
Take care dear 🙂
Well Hello Michelle
Life is going well here. Mom is still hanging in there, even though she doesn’t interact near as much as she used to. She still amazes me from time to time when she pops out with a comment, a giggle, or a gesture out of the blue. She continues to get great care at the Volunteers of America nursing home where she lives. I feel so blessed to have her there.
I just came back from Speaking at the Wisconsin Alzheimer’s Association Caregiver Conference, which was a blast. I told me Bald Chicken Story and handed out my goofy beads with Bald Chickens on them… I am looking forward to doing a lot more speaking this coming year and I really think I’ll get this book out of me too!
How are you doing? I think of you often and wonder how things are going for you. Thanks so much for staying in touch!
Take Care
Lori