Helpful Tips When Dealing with Someone with Dementia – Trifold
Your Memory Chip – Tool
Your Memory Journal – Tool
How do you tell others your loved one has Alzheimer’s disease?
By Lori La Bey of Alzheimer’s Speaks
Someone wrote me today with a very common question. How do you tell others your loved one has Alzheimer’s disease? This is one of the hardest things to address for a couple of reasons. One every time you tell someone it becomes a bit more real, more undeniable. Two, once you tell people you have to be prepared for all the questions, all the pity.
Alzheimer’s is different from other illness. There is no formal “Treatment Plan” that you walk away with. There isn’t a fix to remove it or diminish it, like cancer. There are things you can do to hopefully maintain someone’s current level of functioning. I call it the “Slow Down Plan,” which usually includes some medication, activities, and eating healthy. Due to the lack of a formal treatment plan, it makes it difficult for friends and family to know what to say to you, what questions to ask, or how to help you.
We have not educated society on the disease so they have trouble understanding or accepting Alzheimer’s as a disease. I think the time has come for patients and caregiver’s to talk openly and honestly about the disease and how it affects them in all aspects of their life.
We don’t feel embarrassed to tell people someone has cancer, but people are so uncomfortable talking about memory loss. Maybe because the disease has no beginning, middle, or end. There is no way to know how any individual diagnosed with the disease will react to the disease. There is no way to know how long they will live or what their quality of life will be. There is one thing that does typically happen though. The person with Alzheimer’s disease either pulls back from interacting with others willingly afraid of making a mistake or being judged, or they are cut off from interaction with others due to our discomfort as a society.
We need to ask ourselves this question to put things into perspective –
Are we going to be the next to forget or the next to be forgotten?
When we ask ourselves this question it is typical to get this ping in your head, your heart, and your stomach that says “WOW, I could be next! How do I want to be treated?” It is from this angle of fear we can start talking honestly to educate others what the true face of Alzheimer’s disease is. What it takes away from us, but also what is has to offer each of us.
I am a believer there can be no good if there is no bad. You can’t feel happy if you don’t experience sad… Disease offers the same platform of balance if we chose to look for it and utilize it.
For me, as difficult as it was to lose my Mother, piece by piece over the years, I have found she has taught me much through her disease that has had an extremely positive effect on my life.
The disease has taught me many things. Here is a list of just a few things:
To slow down my pace in life.
To appreciate the simple pleasures I often didn’t see because I was moving too fast or waiting in anticipation for the “BIG THINGS.”
To communicate on a more intimate level.
To train my brain to be aware of my senses, at a higher level.
To not take life so seriously.
To stop trying to control everything and everybody in my life.
To have a deeper and stronger faith then I ever thought was imaginable.
To love unconditionally.
To recognize what brings me joy and to incorporate it in my life.
To remove judgment of others and myself.
That I am stronger then I knew I was.
That done is better than perfect.
That life is so much easier if I keep my sense of humor and can laugh through it.
Last, the thing I will mention and the one that has changed my life the most is
I’ve learned each time I am given a painful or uncomfortable situation is my life there is a powerful lesson buried in the situation which will ease my life in the future, if I choose to remember it and be guided by it.
I think it is time we start to acknowledge our pain and discomfort with things in our life, like Alzheimer’s disease. We need to stop living the ‘Stepford Wives” life trying to project the “Leave it Beaver” family as we try to keep up with “The Jones.” It’s time to be honest with what is going on in our lives. Once we do this we can ask for help from our friends and family, through organizations, and through prayer. After we do this we must be silent and listen for the answers. It is then up to us to decide if we are going to take action by the answers given us, knowing we are the only ones that can change us. We cannot change others. It is time to step out and step up; and lead by example.
Here are two stories I would love you to read. The first will help you answer that painful question often asked, “Does your loved one know who you are?” The second, will give you a new perspective of how to handle the inevitable decline.
SO WHY IS A NAME SO IMPORTANT ANYWAYS?
http://alzheimersspeaks.com/2009/08/01/so-why-is-a-name-so-important/
DIGNITY OR EGO
http://alzheimersspeaks.com/2009/08/28/dignity-or-ego/
Sharing, Caring, and Creating a Safe Community
By Lori La Bey of Alzheimer’s Speaks
Once again I have to thank our readers for sharing such great questions, thoughts, and concerns. We’ve had many comments on our postings, some come directly to me, others comment publicly here on the blog. Today I want to point out the public conversations generated from the post “Gift Giving Another Causality of Alzheimer’s Disease.”
The ongoing sharing and support between people has been amazing. I thank each of you for being so compassionate, honest, supportive and understanding. Even those that have not been touched by Alzheimer’s disease routinely comment or email me with their praise for the open communications that our community here on Alzheimer’s Speaks gives those in need and those needing to learn more about the realities of the disease.
This has been my goal all along for Alzheimer’s Speaks, “TO GIVE VOICE AND ENRICH LIIVES.” I hope we never loss that which we have developed…Trust, Love, a Non-judgmental place to try to make sense of this crazy disease and how it makes us feel and the things we have to do while dealing with the disease.
Kudos to each and every one of you. Thank you for helping me create this wonderful community called Alzheimer’s Speaks.
Please read the post by Cynthia and my response.
Sandra & Lori,
This has been a gift for me, your messages. This time is difficult. Sometimes are easier than others, even when it is heartbreaking. For some reason the last few weeks have become harder. Maybe she is reaching another level. Learning new ways to talk or communicate with mom. I see she wants to be left alone at times. She does not want me there, or most likely, she does no want me to see her like this. Sometimes, I think she feels I am babying her, or I am at a loss for the words, I can’t explain it right now.
I need to sell her house, and feel terrible about it, but need the money to continue paying for the nursing home. My parents worked so hard for that and wanted to have that be their gift to their children. Feeling like I am betraying her these days. My issue, not hers – right?
Thanks again, for the messages, sharing your stories, it is both beautiful and heartbreaking at the same time.
You are in my thoughts and prayers,
~Cynthia
HI Cynthia,
I know where you are and totally understand. I call it a “Boat Flip,” when I get tossed into the cold brutal waters of truth. I find I am missing the justice piece that I so dearly want tied to that would “truth”. Yes, where is the Truth and Justice for all???? Isn’t that the American way?
The Truth is Alzheimer’s disease is far from “Just”. There appears to be no rhythm or reason as to who gets it, how it will affect them and those around…
Your emotions are normal. I agree you need to feel them fully to move through them. The good, the bad, the ugly, the guilt, the sadness, are all real and valid losses.
Please know you and your Mother are both going through another phase of this disease. I can’t even guide you as to what the next phase is, as each person is affected differently. But have confidence in yourself and your ability to make it through another shift. If you take time to look back you will have a tough time counting all the shifts and phases you have both survived.
It is evident from your writings how much you care for your Mom, and parents in general. Selling the family home is never easy. Typically we are asked to make promises we have every intent of keeping until things change. .. Change significantly…like illness, like Alzheimer’s disease. We never project our lives will be touched in negative manners that can happen and so often do occur.
As Caregiver’s all we can do is what is best for our loved one with the information we have, with the assets available, with the laws we must live by; even if they are now in conflict with our loved ones wishes.
Know in your heart you have done the best you can do with the situation as it is now. The guilt you carry is because you love, not because you have misled, neglected, or abused your Mom.
Remember, you are still a child in your heart to this parent who now seems more child-like. You still want your Mother’s love and respect. As a Caregiver we worry at all stages, that we might lose our connection with them. No matter how little their ability is to communicate with us, we don’t want it to diminish further. These are normal feelings. It’s ok to question your actions, but don’t’ beat yourself up, when you know down deep you are making the best possible decision for them within the realities of the situation.
May your God by with you
Lori
*************************If you would like to read the full article and all the comments click here******************************
When is the time right to say “Good Bye” to a person who is dying?
by Lori La Bey of Alzheimer’s Speaks
This question was submitted by Donna who read the post “The Clock Never Ticks So Loudly As When Waiting For A Loved One To Pass”
Great question! here is my answer –
I look at it like this, and actually did this with my Father and have with my Mother, although my Mother is still alive and in her end stages. I started talking about it prior to the very end. Now not everyone reading will have this time and that is ok, because there is no right or wrong time to speak these words. It’s all about your perception of what will happen when you say the words. REMEMBER this, as it is critical!
For me, I told Dad and Mom many times that what I wanted, was for them to be pain free and happy. That I would be ok when they decide the time is right for them. That I would be there until the timing is right for them to pass. That I love them and always will no matter how far apart we may seem.
You see, I think many people, myself included think that saying “Good Bye” means they are going to go. They are going to die right then and there. In reality, we just don’t have that much control. I like you have heard that many times once you say good bye they depart, but they are just as many if not more who continue to live. Once you accept this life and death decision is not yours, but theirs, the burden is lifted. You will feel lighter. The heaviness goes away. You can breathe normally again. It is God’s will. Whoever their God is. Whoever your God is.
Realizing this flips the whole situation. Now instead of feeling like you are, “Pulling the Plug on their life,” you are supporting their decision. This is HUGE! You are now in a state of true unconditional love, putting their needs and wants first. The guilt is lifted from you. Your words flow smoothly as they are come from love. But you might ask how will they know that?
Remember, like them we express ourselves through multiple ways or senses. Our tears as they fall upon them, our quivering voice as we speak the words, “It’s ok to let go. We will be all right,” our shaking hand or trembling bodies as hold them all communicate how difficult this is for us. They receive these communications through their senses and know your words come out of a deep, deep love and respect for them. Even if they seem non-responsive they will know.
As I write this post, tears are flowing from my eyes knowing I will have to feel the pain of my Mother passing some day, probably sooner than later. It never is easy, because we ache at our loss, but with our loss comes great peace for them. There is no better gift then loving unconditionally and putting your loved one first, and knowing you will make it through this journey one way or another. It is normal, it’s healthy, and not about to stop just because you can’t or won’t deal with it.
EMBRACE THE CHILD THEY HAVE BECOME By Lori La Bey
Here is something to think about:
If your child was ill what would you do?
How would you treat your child?
Most of us would do the following:
Be supportive, protective, encouraging
Search for answers
Reduce their fears
Not think about ourself, but focus on their needs
Love unconditionally without thinking twice
Why is it so common to treat our elderly and ill differently?
Why do so may treat a person with Alzheimer’s disease so differently?
Here’s Michelle’s response to my post “Communicating when a person is nonresponsive”:
“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.”
Here is my response to 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.
Snap that Bra! by Lori La Bey
Given my Mother is 81 years old at this writing, there is no doubt she is of the bra wearing generation. It was no easy task, to convenience her otherwise when she no longer could dress herself. Mom would get so mad when she could snap her bra in the back any more. We tried all different kinds of bras. Front hooks, pullovers… None worked. After much discussion, I got her to agree to wear a camisole. That is until she complained to my Brother’s girlfriend who said she would take her shopping for bras. I almost passed out thinking of Mom’s wrath against me. For starters I was the recipient of a 2 ½ hour drive home from the lake with Mom’s arms crossed, her face beat red, and negative comments flying my way about how mean I am to take her bras away. I learned quickly after this mistake to make sure everyone knows Moms pressing issues, and what the plan is to fix them!
Why Can’t I go? by Lori La Bey
Sometimes not telling the whole truth is better…
As a family we got to a point with my Mother were we could not tell her we were going on vacation or a business trip, as she would get upset. She did not understand why she could not come with. Mom did not seem to realize she was not capable of traveling. Going on a cruise, flying, or driving was something she enjoyed and in her mind, she was still able to do. There was no arguing the point, so we just stopped mentioning these trigger points.
We decided as a family, my Mother’s joy and happiness was more important then us sharing things that might bring her pain and make her upset. Each family has to decide on their own when it comes to situations like these.
Going Out by Lori La Bey
One thing you have to do is go with the flow with Alzheimer’s disease, or you will drive yourself and everyone around you nuts! You cannot control it. You cannot fix it. Nonetheless, you can control your reaction to it. Here are a few things that may help you when going out.
Always remember your basic outings checklist items:
*Go to the rest room before you leave home, once you arrive, and before you leave where you are.
*Have a plan for purchase tickets in advance when possible.
*Have a plan for snacks, are you buying anything there or sneaking in your own.
*Can they hold their own beverage or snack?
*What types of food do they like to eat?
*Do they have any allergies? Especially food allergies.
*Do they need a special cup, straw, or bottle?
* Do they need assistance eating?
*Will they sit long enough for the event, or will they need to get up and move around a bit?
*Will they wander off? Who needs to go with them?
*Who is assigned them for their special needs?
*How will you get them there? Check vehicles for ease of access or do you need transportation assistance?
*How long will they last on an outing?
*A change of clothes never hurts to have with you.
*Will they need any medications during this time? How will give them?
*If it is a long day, is there a place they can take a nap?
*Have them dressed in layers to accommodate change in weather or environment in general.
* Having a blanket, throw, or jacket never hurts to have handy.
*Do they need money or id?
*Do you need keys to bring them back home?
*Do you have your camera to take photos?
Feeding a person who is unable to feed themselves by Lori La Bey
Instead of poking the spoon at their mouth head on, gently rub the spoon to and fro on their lower lip. The lip is sensitive and this will have more of a tickle affect. They will receive the food as pleasurable, verse something unknown being forced into their mouth. It is like when a Mother is nursing her baby; gentle, slow, and loving perks the baby’s interest. Remember, even if a person seems totally disconnected on the exterior, they still pickup on your energy and your attitude. It is very easy to get frustrated trying to feed someone who is pursing their lips shut. They can sense our discomfort and our anger. The person with memory loss goes into that fight or flight mode. Only the option for flight is no longer an available.
Communicating when a person is non-responsive By Lori La Bey
Communicating with a non-responsive person can be frustrating for family, friends, and staff. How do you communicate with a person who appears uninterested or unable to communicate with you?
I have found taking my Mother’s face in my hands works very well. This is the same thing I would do with a small child who is sad, upset, or ill. I would listen to them tell me what is wrong; and cradle their face by having my ring and pinky fingers gently hold their jaw line while letting my other fingers lightly touch their face. I would use my thumbs to caress their cheeks as I spoke to them.
Remember, long – term memory is in place, so as caregiver’s we need to go back to what would comfort them when they were young. We can use touch and not speak at all. When doing this your physical connection will emanate through you to them. Note how you are coming across. Are you being loving and caring, or harsh and brash? You may want to sing or hum a song they liked for whatever time period they are in. Look into their eyes and read their lips. What are they trying to tell you? What brings them joy and peace? Many times people can comprehend what we are saying, but cannot communicate with us the way they used to. The way we are used to. It’s important to treat a non-responsive person with dignity and respect at every stage of the disease. No one likes being talked down too, so we must analysis each situation on its own merits; and look at what we can change and control and that would be us.
Dining Out by Lori La Bey
Go to the rest room before you leave the house.
Picking a restaurant where they know the menu and do not have to look, read, or make a decision.
Having a friendly familiar face wait on you eases things too.
Check out the restaurant prior to arriving. Are there steps? Is there a ramp? Is the walkway smooth and in good shape? Do they have a large handicap bathroom, in case you need to go in there with them? What kind of menu do they have? Is the seating important to you? (Booth, rounds, squares) What kind of menu do they have?
If your person with Alzheimer’s wants to pay for their dinner or others, how will this be handled? Do they have money or a credit card? Are they going with people that know the situation? You do not want them taken advantage of or being embarrassed.
Do they have a certain cup they use for drinking?
What do they like to eat and drink? Down to salad dressings, cream or sugar in their coffee, butter or margarine…
Do they prefer using a straw to drink their beverage?
Can they use utensils or are finger foods better?
Can they have alcohol?
Do they have any allergies?
Going to a restaurant was a painful process for my Mother, even though she loved to go out to eat. She could not decide what to order and in the end, she would get whatever I ordered. I got to the point of saying, “Hey Mom, I’m going to get blah, blah, blah, you want the same and we can be twins?”
The decision was mad and she would laugh. She was happy, as I knew what she liked to eat. She did not have that decision weighing her down. Worst case she eyeballed someone else food when it arrived and we would all switch it up or share. It is one of those ways to help them maintain dignity as the slide begins, especially when they are aware of the changes within them.
Stay away from buffet lines, or get their food for them when they get to the point there are too many choices, to much stimulation. Before we caught onto this as a family, Mom would have four plates going in one buffet line. She would start one plate, see something else she liked, get another plate, and start over. We could still go the restaurant, but I would go get her food and bring it back to her.
Go to the rest room before you leave to go home.
Holding hands by Lori La Bey
As we age, we loose fat pads throughout our bodies. One of these areas is the top of our hands, so when holding hands make sure your hand is on the bottom and you are holding hands palm to palm. Here again the palm is sensitive to touch. You can tickle their palm or just hold their hand gently. You can still very lightly rub the top of their hand or fingers with your thumb. This is an, oh so small gesture which can make a big difference when communicating with the elderly. We have all seen elderly with bruised hands and I know for myself it never occurred to me that I could hurt someone by holding their hand.
Modeling Techniques by Lori La Bey
One day my daughter, Danielle, was having a difficult time communicating with my Mother. The lack of response from her Grandma saddened her, yet she did not say a word about it to me. It showed in Danielle’s face, and in her gestures. She did not need to tell me in words. Today, Grandma seemed buried in the shell of body she now occupies. I told Danielle to giggle. She asked me, “why?’
I told her Grandma would respond to her laughter. My Mother has always loved to laugh, and that has not changed one bit; even with the progression of the disease. Danielle giggled. Grandma’s eyes popped open, a smile spread across her face and she too began to giggle. It did not make any difference why or what they were laughing at. They were both happy just giggling, just connecting in their own special way. It was magical. The relief in Danielle’s face was incredible; and my Mom, well it is a simple, but overwhelming joy to hear her laugh.
Modeling a behavior to a person with Alzheimer’s disease is simple and can be very effective. See what works for you and remember things will change. Keep in mind, you will need to revise and revisit techniques over time. It actually keeps things fresh, a bit challenging at times, but oh so rewarding when you get it right!
Increase Safety by Lori La Bey
Disconnect the stove (gas or electric)
Remove the knobs on the stove
Add child-proof locks on cabinets and drawers
Have a fire extinguisher handy
Keep hazardous items locked up
Unplug the garbage disposal
Remove throw rugs throughout the house
De-clutter the house so there are fewer items. All things should have a specific place to be put away.
Use a shower chair
Remove locks on bathroom doors
Put the bar soap in the shower in a nylon. Like the soap on a rope concept. They can pull on the nylon to get the soap verse bending over.
Add non slip texture to tubs and showers
Turn hot water heat down to avoid burns
Add grab bars in the bathroom
Supervise smoking and alcohol consumption
Add locks to the upper part of the door if they get out. They usually will not know to look up for the lock
Make sure there is good lighting throughout their home, inside and out.
Get a Security/Medic Alert pendant, for emergencies
Make sure to change all medication bottle labels when prescriptions change
Lock up medications
Make sure they drink plenty of liquids so they don’t get dehydrated
Make sure they eat
Wear support shoes, Velcro is helpful and easy
Remove firearms from house if possible, if not lock up
17 Signs things might be changing by Lori La Bey
- Your Mother asks your Father, “How many kids do we have?”
- Your Mom is reading the paper upside down.
- You find a cheat sheet on how to use the TV remote and telephone.
- Your Mother enjoys coloring as much, if not more than your five year old.
- Your Mother just introduced you to her friends as her Mother.
- Only red or pink clothes belong to your Mother. The rest are not hers and you are told to remove them.
- Profanity spews from a woman who carried a bar of soap in here purse when you were younger, just waiting for you to slip up, so she could clean up your mouth.
- You are golfing and your Mom falls into a sand trap and starts swimming.
- Your Mother asks, “Is Dad dead?’
- Your Mother falls in love with a woman thinking she is a man.
- There is constant drama with items missing, Kleenex boxes, purses, newspapers, glasses…
- You ask your Mom to bend her knee and she wiggles her finger in compliance.
- You are at the movies and your Mom stands up and starts interacting with the movie characters.
- Your Dad is throwing up blood, leaves for the doctor, and your Mom sits down to a cup of coffee not realizing anything is wrong.
- You fall asleep at the wheel. Your Mom in the front seat looking straight ahead and says nothing as you jump a curb and slap down a couple of signs.
- Your mom starts using salt instead of sugar when baking.
- Your Mom writes on her window with lipstick asking for help to escape.
Use a Guest Book by Lori La Bey
A guest book is ideal to keep track of who has come to visit or called, and what was discussed. Ask friends and family to bring a story or photo to share. It’s fun to read the journal and reminisce what has happened lately or stories from the past. You will be amazed at what you learn through others. This journal can also be divided into sections and used to note medical updates or caregiving needs…
A Picture Says It All by Lori La Bey
Today, turned into one of those unexpected really, good days. One of those “AH HA,” times where I thought to myself, “Why didn’t I think of this before?” Taking photos is such a simple and easy thing to do for an event or just capturing an everyday moment. It does not make any difference if you have an expensive camera, a disposable one, or a cell phone that takes pictures. It is all about the MOMENT! Yes, being engaged in the moment before you is all that ever truly matters.
I was at the nursing home, where one resident after another amazed me. They all loved having their photos taken. It is one of those small things that matters. Photography makes us feel valued as a person. The person taking the photo is engaged with us. They have to connect and be attentive in order to capture us, our essence, in that very second of the snap. The quality of the photo does not matter; a good photo or not, makes absolutely no difference. Someone thinks we are worth taking a picture of! No matter who we are, or where we are at in life, it’s always nice to know we have value, even if we are a person with Alzheimer’s disease.
Things To Consider When You Put Your Family Action Plan
by Lori La Bey
- BREATHE, AND COUNT TO TEN
- Develop a Support Team and get educated
- Doctors
- Home Health Care
- Elder Law Attorneys
- Financing Planners
- Realtor
- Discuss the disease and talk real life situations
- Learn to remove your fears and others about the disease
- Learn to make opportunities out of obstacles
- Pay attention! Identify Stress Triggers for you and the patient
- Make a Favorite Memory List to refer to now and in the future
- Talk openly
- Feel the emotions of the disease and then move forward
- Help change perceptions of the disease and those affected by it
- Prepare for the changes ahead
- Accept the fact everyone will deal with the disease differently
- Realize you cannot change or control others reactions, only your own
- Know you will get through this experience and be stronger for it
- Education reduces fear and bad decisions
- Share the responsibilities – plan
- Understand and accept things won’t be perfect, most likely they never were, Stop holding on to that standard, it is not realistic!
- Ask for help when you need it
- Be compassionate to all
- Don’t forget your own family balance
- Remember, if you try to control everything, you can’t!
- DONE IS BETTER THAN PERFECT!
- Allow others to help and participate
- Remember it is ok to modify the plans as you go. It’s a good thing.
- Build a support system for the family as well as individual with Alzheimer’s
- Make clear communication a priority. Break down the steps
- Identify lines of communication and responsibility
- Realize things will change constantly, learn to go with the flow
- Step out of your box, get creative, learn to Live To Be Pllafull™
- Appreciation how intertwined we all are
- Maintain relationships and building new ones
- Keep The Pride Principle™ intact for all through love and laughter
- Look at the disease as a series of gifts
- Embrace the gifts before you
- Find peace in letting go and learning to just BE
- BREATHE, AND COUNT TO TEN
The “PERFECT GIFT” for Someone with Alzheimer’s disease
By Lori La Bey o
The holiday season is here. Would you like to give the “PERFECT GIFT?” Would you like to save time and money?
If so, keep these things in mind –
1) Most Older Adults don’t feel a need to receive a physical gift.
2) Most People with an illness just want to be treated the same. They want things to be “normal.”
Now Remember…
1) Alzheimer’s patients get confused. It is what happens when short term memory is lost, while long term memory follows its lead. People with Alzheimer’s disease misplace things. Nic Nac’s and clutter add confusion. They can even become safety issues.
2) Many of us are uncomfortable around illness. We don’t want to say or do anything wrong. Putting distance between us and the ill makes us feel better. It makes us feel safe. The problem is, it is not about us. It’s about them. Think how you would feel if your friends and loved ones abandoned you on a social and emotional level.
By giving the “PERFECT GIFT,” you can help shift societal patterns by remaining engaged with the ill. When you lead by example and show your compassion, you can also enjoy the person as you did prior to their illness.
So what is the “PERFECT GIFT?”
Think about what brings the person with Alzheimer’s disease pleasure. What makes them happy, joyful, and peaceful? What did you used to do with the person? What would be “normal” for the two of you to do? Please do yourself and them a favor, keep it simple. It really is not complicated.
Here are some ideas –
Chatting over coffee
Going out to dinner
Watching a movie
Going to a play or concert
Listening to music
Playing an instrument
Cooking together
Going shopping
Looking at old photos
Going for a walk or a drive
Visiting friends or family
Discussing past event
Playing cards or a game
Reading
Volunteering
Going to church
Working on a hobby
Exercising
The list of what we enjoy doing with our friends and family is endless. Please don’t stop with my list. Make your own list and refer to it often, not just over the holiday season.
Realize, “YOU ARE THE PERFECT GIFT!”
The gift of love and support. The gift of friendship and laughter. Spending time together is precious and especially appreciated as we age or become ill.
If you still feel the need to give a physical gift, then give them a card with a nice note telling them how important they are in your life. Make a point to schedule time with them now.
Don’t ever underestimate the power
the gift of self can have on another’s life.
If you still are not sure you can engage the person with Alzheimer’s disease, please read the following article on ‘You Memory Chip” Here is the link – http://alzheimersspeaks.com/2009/11/25/your-memory-chip%e2%84%a2-exercise/ You will be amazed how you can interact at all stages of the disease once you apply the right attitude.
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Sending someone a message…they don’t reply…they must be out…then they post a Facebook status. Great, they’re ignoring me.
Hi
I did not mean to ignore you, but I do have to make decisions regarding responses if there are spam or not. When websites are attached I get a bit nerveous due to getting viruses on my computer. After you comment today, I did have a chance to check you site out. I then had to translate it to be able to read it. In the future, it would be helpful if you made comment on what your site has to offer others. I do feel security systems can be of value to those dealing with Alzheimer’s disease and memory loss.
Thanks for writing
Lori
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Thanks for visiting and taking the time to comment
Lori
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Lori
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Thanks Stanley
Lori
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HI Joseph
Thank you so much for writing. I’m glad you like our community here.
Lori
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Thanks for writing Paul. I always appreciate hearing from my readers.
Lori
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Deandre
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Lori
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Thanks Brook. I plan on being here and writing for a long long time
Lori
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Thank you
Lori
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Thanks Dennis. I appreciate you taking the time to write.
Lori
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Thank you!
Lori
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Lori
Really like the article, and the list of things you’ve learned. My brothers and I cared for mother, and ha many similar learnings. We also realized that it was best to just “go with the flow.” Our stories are cataloged in my book, Moving Mama on Amazon and on my webiste, MovingMama.net. Appreciate your wisdom.
HI Anne
I would love to invite you to enter your book in Alzheimer’s Speaks Resource Directory.Feel free to contact me directly if you are interested. I will send you directions as to how. It’s free! Thanks again for your comment.
Lori
Thank you for sharing these tips! Being a caregiver is one of the most rewarding and hardest jobs there is, and it is always nice to hear what works for others, and bounce ideas off of one another.
Hi Ashley
So glad you found the tips helpful.
Lori