“Memory People” – New Facebook Group for Alzheimer’s Patients & Caregivers

Announcing “Memory People” a New Facebook Group for Alzheimer’s Patients

 

Hi everyone.  I would love to introduce you to a wonderful facebook group I came across thanks to Dr Richard Taylor who has Early Onset Alzheimer’s.  The group is call “Memory People.”   For directions on how to find the group see the bottom of the page.

Rick Phelps, who has Early Onset Alzheimer’s Disease.  He started the group just three weeks ago and there are 57 people in the group already.  I asked Rick if I could help share his cause and he said YES!  Below is a letter from Rick explaining in more detail about himself, his mission, and Memory People.

Rick Phelp's playing his guitar

Lori:

I want to start out by thanking you for joining our site. I hope you had the time to read some of the posts. You will see these are common people with uncommon struggles. I am so thankful to have found each and everyone of them. I will now try to explain a little about myself and what we have done here…please keep in mind I wonder off subject at times and have a hard time keeping things in order if you will, so read between the lines at times…lol

I am a 57 year old male. Have been married for 24 years to my lovely wife, Phyllis June.

(Opps correction needed that would be 27 years I’m told… LOL  Thank God for an understanding and loving wife)  She is my rock. I say that not because of the situation I am in now, but because I married my friend. It does not surprise me one bit what she has done for me and what she will do in the future.

 

Anyways, I was in Law Enforcement for many years, and EMS for 24 years. (Opps correction needed that would be 27 years I’m told… LOL  Thank God for an understanding and loving wife).  Like all EOAD patients I suspect, I thought I had a problem some 6 years ago. Started out by forgetting codes, numbers I would use everyday. We went to our local Dr. who attribitued it to stess. My daughter had passed away in 97′, and he thought maybe that was the cause. So we went along with that, took what meds he perscribed and life went on.

Within the last year, I was having many, many memory problems. Talked with my wife about it, Doctor again,etc. but again, he attributed

Rick and his wife Phyllis June

 it to stress. With EMS work or whatever. Well to make a long story short, I had many things happen to me, while working EMS that I knew was not right. It started with I could no longer remember the address we would be paged out to, after living in this city my entire life. Then it snowballed from there. I knew and told my employers up front what was happening. They treated me as friend, instead of an employee which was appreciated, but probably not helpful looking back. I kept telling my wife something was going to happen, something terrible on a run, and it did. On my last run in EMS, we were paged to a small child, having sezuiers, and everything went wrong. We started CPR on the child when we arrived who was already blue, we continued into the ER and they worked him for over an hour. Never getting a pulse or heart beat back. 

He was pronounced dead and I just lost it. I had been around children dying many times before but this was differnt. and I knew it. Anyway that was my last day in EMS. I went back to the Dr., our local Dr who still was dragging his feet about my memory problem. He did however after many blood test, MRI’s etc, send me to a Neour. Doc who agian after many tests diagnised me with EOAD.

Now, here I am, 57 years old. Not able to work any longer. I, along with my wife have always worked two jobs. One EMS the other Law Enforcement and now I can do neither. I was after again many test, those mini mental tests, etc. declared disabled. Heres the kicker with that. They say your disabled, and put on a fast track beacuse its a memory thing. There idea of fast track is not mine. It has been since June, with no income, and wont get my first check until Jan of 11′.  

Then the best, I am not eligalbe for insurance until 24 months after that. This is unaccapteable. I have always been one to voice my opinion, and was and am determined to do so in this matter. Not because its me, but because there are millions like me out there. 

Needing help. You know the story, if I had several kids, didnt have a job, or they would give me assistance immediatley locally, but since my wife is employed and with the income she makes, we do not qualify. 

This is not only wrong, its unethical.

Thus after many weeks, and months of wondering what I was going to do, how could I help, I thought of starting our site, “Memory People”. I did this after going to many other sites on Alzheimers but none of them acutally offered the personal interaction with people. I then went to Facebook, knowing very well there are many on there, but also many who do not or cannot do computers. But I had to start somewhere. 

Thus the beginning of Memory People. After only three weeks we have grown to over 50 people, patients, and caregivers. I could not be happier. I must also tell you I am a firm, firm believer this is a caregivers disease, and that is not talked about enough.

I am still smart enough to realize that if it is not for my wife and daughter who are my caregivers, what would I do. And there are millions in my position. Alzheimers is a terrible disease. No one denies that. Its the lack of Govt. Funding and awareness that i want to fight. I do not know how to do this, I only know my story, and I want so deserately to share it while I still can.

I am not above asking you, if you can help me…tell me how I can testify, or whatever to Congress or whoever to get my, our story out. I want to do this, because when people see me, talk to me, they can see the problems I have with converstions, I stammer and stumble through simple things. I cannot do this without my wife present, she knows my very thoughts. I look at her when I get stuck and she knows what I am thinking or wanting to say and gets me back on track.

I know there is no cure for me in my lifetime. We were told this is terminal, to I answered, we are all terminal. I just know bacically how long I have here on this earth. And I am determinded to help others. I am no Marie Shriver, do not have the charisma or star power she has, but I can tell my story and will to anyone who will listen.

Everyone on the Memory People site tell me thank you for what you have done here. When in reality it is me who thanks them, for what they bring to the site.

Please help me in anyway you can. I know my time is short, and my thought process deminishes everyday. But I will fight for the caregiver of this terrible disease, the funding or lack of for it, and for the patient it effects….

Thank you for taking the time to read this, I hope it made some sense. Like I said, I tend to ramble. But I know in my heat what I want to say and do for people with this disease…. 

Rick Phelps

To find MEMORY PEOPLE ON FACEBOOK:

1)      Log into facebook

2)      If you have not signed up for facebook yet, you must do this first.  Once you have done this you will have a home page and can follow the directions below.  To signup for facebook, just google facebook.com and follow the directions.  It is very simple to do.  I did it!  LOL

3)      Once you are logged in on your home page you will see a search box just left of the facebook logo and next to the little, people, comment, and world icons.  You can’t miss it. 

4)      Type in “Memory People” and a list of groups will appear

5)      Click on the one that says “Memory People”  and it will bring you to their page.

6)      From there you can decide to join by clicking on the button that says “Join” I believe it is in the upper right corner of the page.

85 Replies to ““Memory People” – New Facebook Group for Alzheimer’s Patients & Caregivers”

  1. I cannot thank Lori enough for sharing Memory People on her blog and website. This will help in the Awareness we are trying to bring to this horrible disease. I hope to fight the good fight as long as I can. Telling my story to whom ever will listen. Together we can make a difference….

    Rick Phelps

    Reply

    1. Thanks Rick. I too am so glad we connected. We all need to join together to make one voice…strong and clear about this disease and the needs of both patient and caregiver. I feel honored to know you and work with you. Keep up the fantastic work!

      Reply

  4. Hello my friends i care for my wife sylvia, here in the uk she is six years on her journey with this awful illness alzheimers.it is so good to find sites for other carers as we are all united in this and understand each other and what we are going through with our daily caregiving

    Reply

  5. Lori,

    Again I wanted to Thank You for sharing “Memory People” on your site. I myself have gotten so much information from your site and get to go back over and over and read the aritcles. There always new to me…lol

    We now have over 60 members on Memory People, and I am so thankful. People who didn’t know each other some three weeks ago, now share stories and events that happen to them day to day, sometimes hour to hour. Both good and bad stories. We have caregivers and memory impaired patients alike on our Memory People site, and were growing daily.

    My one hope is we really reach national recongnition from this site because awareness is the key to this terrible disease.

    I look forward to meeting you, hopefully being able to speak at one of your workshops. You are one of the heros of this disease. Thank You for your tireless work, and again for sharing “Memory People” on your site.

    Rick Phelps

    Reply

    1. HI Rick
      Thank you! I appreciated being part of your group. Again for any of you who want to join the Memory People – the new group on facebook for early onset dementia and those caring for people with memory loss below are the directions:

      To find MEMORY PEOPLE ON FACEBOOK:

      1) Log into facebook

      2) If you have not signed up for facebook yet, you must do this first. Once you have done this you will have a home page and can follow the directions below. To signup for facebook, just google facebook.com and follow the directions. It is very simple to do. I did it! LOL

      3) Once you are logged in on your home page you will see a search box just left of the facebook logo and next to the little, people, comment, and world icons. You can’t miss it.

      4) Type in “Memory People” and a list of groups will appear

      5) Click on the one that says “Memory People” and it will bring you to their page.

      6) From there you can decide to join by clicking on the button that says “Join” I believe it is in the upper right corner of the page.

      Reply

  6. Hi Lori,

    Just wanted to say hi and hoping that everything is going well with you and that your mother is comfortable. I did attempt to email you a couple of weeks ago, but I guess it got lost in cyber space…

    Take care of yourself and know that i am thinking of you and your mom 🙂

    Love,
    Sheri

    Reply

    1. HI Sheri

      It’s so nice to hear from you! I did not receive the email the other week. Lord only knows where they go sometimes. How are you doing with the holidays? I know I still miss my Dad and it’s been 10 years. Mom gave us a scare a couple of weeks ago. She was having body tremors and they kind of thought it was the beginning of the end, but she has been doing great ever since. It did however make me update all the directions for DNR, funeral, autopsy… to make sure staff know her wants and ours.

      Do you have big plans for the holidays? I’m laying pretty low and will just be visiting with Mom, than on Sunday I hook up with my brothers and will go to see some friends… I still have to figure out if and when my daughter and her boyfriend want to do anything. They are beebopping all over town to see everyone. We live together so it’s not like I won’t see them…

      Thanks again for touching base. You are so good about that. It means a lot to me.

      Take care…Love ya!
      Lori

      Reply

      1. Hi Lori,
        I think I mentioned that I am one of Jehovah’s Witnesses and we do not celebrate Christmas. I mean we recognize Jesus as God’s son, but we don’t celebrate his birth. I know you have a lot of your mind right now, probably just forgot…lol. So as far as the holidays, I will be off on Friday and Monday. We usually go down to Ocean City, NJ., rent a nice hotel room and relax. That’s about it for us 🙂

        I remember why my mom had the body tremors, it was pretty scary, but it never happened again. I am so glad she is doing well now.

        Take care my friend and I will be checking in on you later 🙂

        Love,
        Sheri

      2. HI Sheri

        I’m sorry if I forgot. Much on my minds these days…. I hope you enjoyed your time by the ocean. That sounds wonderful! I laid pretty low this year for XMas. I’m going to see my side of the family today and some friends. It all felt very strange this year but right. Going to visist Mom again today. On Wednesday last week a friend of mine went over with me and sang her some XMas songs. She loved it and once again came alive. I will try to get up and posted for you to see. Take care my firend. You are very precious!
        Love you
        Lori

  7. Lori,
    Thanks for hi-lighting the Memory People page on FB. I’ve been enjoying it very much! Thanks also to Rick for reaching out to others. We are all in this together & with this FB page, it doesn’t feel like we are alone any more in this fight!
    Cheryl

    Reply

  8. Thanks a lot for the post, I actually learned something from it. Really good content on this website. Always looking forward to new post.

    Reply

  9. Thanks for this post. I most assuredly agree with what you are saying. I have been talking about this subject a lot lately with my father so might this will get him to see my point of view. Fingers crossed!

    Reply

  10. Hi Lori,
    One year has gone by now since my mother passed away (1/1/10). Boy do I miss her so much 🙁

    I am currently selling her home to pay debts she owes to Medicaid. She lived in a lovely house, but the value of the home is not too much. My son and brother currently live in it, and its such a shame that they have to move because I have to sell it. That home was my mother’s pride and joy. It was so beautiful on the inside despite the location of the home. She would be mortified if she knew we had to sell it. But I have to admit that I knew this day was coming when my mother was admitted to this particular nursing home. It was medicaid approved, and despite the fact that she had monies contributing towards her care, it just wasn’t enough, so I had to apply for Medicaid. Sure, I could have put her in “any old nursing home”, but I felt she didn’t deserve that. Needless to say, there is much bickering going on between my siblings about “money”. Believe me, there is hardly going to be anything left after we settle up her debt to Medicaid and what the realtor has to be paid. I’m not looking for anything—just want to pay it off and be done. My son will have to find place to live and he has no job. He definitely cannot live with me or his father. Sad to say, he has burned his bridges. He is such a disappointment. I did tell him that I would help him with any monies that is left to help him get on his feet. Other than that, me and the hubby are doing fine.

    Hope you are doing ok, and hope your mom is still comfortable. Still waiting for the pictures where your mom was happy while you were singing the xmas songs. Her smile makes my day 🙂

    Take care Lori and hoping to hear from you soon.

    Love,
    Sheri

    Reply

    1. Hi Sheri

      It is so nice to hear from you. I’m so sorry to hear you are missing your Mom, but that is very natural. It’s funny how we miss them when they are hear and slipping away before us and then on a whole other level once they pass. I hope you remember what a good daughter you were and how much your Mom loved you. It’s ironic the dates between us; your Mom’s passing and my Mom’s birthday, January 1st. I’ll also never forget your email on Halloween telling me about your interaction with your Mother. Do you remember? I will never forget. It still brings tears to my eyes knowing the love between you too.

      Here are the links to both the video of Mom trying to sing with Janelle and some still shots I took as well. The video is very cute of Mom. I love her eyes and gestures!

      Still Photos with Janelle
      http://alzheimersspeaks.com/2011/01/06/a-special-gift-from-a-friend-to-my-mother-in-end-stages-of-alzheimers/

      Video Singing with Janelle
      http://alzheimersspeaks.com/2011/01/05/music-and-alzheimers-moments-frosty-the-snowman/

      Sorry to hear you have to sell the house. I imagine that is very difficult. All the family history and pride of ownership. Know your Mother knows you are doing the best you can with the circumstances at hand. Maybe in the long run it’s your Mom helping with some tough love for your son to get his own sea legs and stand on his own. The Lord has a plan and we must hold to our faith. I’m glad to hear you and the hubby are well. Me I’m still single and haven’t met anyone, but maybe someone day. It would be nice…

      Take care and know my prayers and thoughts are with you and your family.

      Love ya!
      Lori

      Reply

  11. I am so happy to see a website that addresses a very pressing topic. My prayers are with you and all the families that are first hand dealing with the Alzheimers/Dementia. I have been caring for my Mother (Dementia), full time since spring of 2009 after the passing of my Father. I had to go thru a battle in court just to keep her in her own home instead of a facility. It is such a shame that there are so many that are clueless, or refuse for whatever reason to acknowledge just how severe and debilitating these afflictions can be. And the, as I call them, “powers that be”, with all of their education and interaction still do not comprehend that no two cases are exactly alike. All of the victims are individuals. I have just within the past month been approved for 6 hrs per week respite care. And Michelle I so feel for you and your battle with the financial wolves. I have lately been researching thru as many medicaid rules, etc., because any of us are subject to face that hurdle. With an average rate of $75,000 pr year in an institution it’s a bleak picture. there are exceptions to every rule though.

    Reply

    1. HI Brenda

      I am glad you enjoy the blog. So sorry to hear about your struggles with the courts. I’m sure that was no fun at all. Poor Michelle has been through a lot on her journey with her Mother. I’m sure it will be nice for her to hear she is not alone. Thanks for writing.

      Lori

      Reply

  12. Any way we can communicate without having to go to facebook?

    There are some real A-Holes there I just have no desire to communicate with or allow them to look at my posts with you.

    Thanks

    Reply

    1. HI Bill
      I understand your feelings about the internet. It is scary and can be unnerving. Since you commented on a post regarding “Memory People, I do have to say I participated and watch the conversations on Memory People very closely and I can honestly say to date I have never seen anyone be disrespectful. In fact the opposite is true. I would be glad to talk with you “off line” so if you wish to email me directly or call me I’d be glad to discuss this with you further. I don’t want you to feel uncomfortable talking on line if that is your wish.
      If you go to my resource website http://www.AlzheimersSpeaks.com in the bottom lower right corner there is a picture of me and under it is says” email” me. Just click on the link and shot me an email and we can chat from there if you like. I would list my email on here but when the spiders crawl the web they pick up my address and get a ton of junk mail. This why I’m asking you to email through that route initially.

      Thanks for writing and I look forward to talking.

      Lori

      Reply

  13. When was the first time you thought: “Oh-oh!”?

    For me, it was when I got lost in a heretofore (LOVE that WORD!!!:)) familiar area while driving home. (Everybody GET that???: “Home”? ;))

    Next time was pulling into a busy intersection, looking into the rearview mirror, seeing a car RIGHT ON my back bumper, and couldn’t convince myself I didn’t just pull into his path.

    The last (and final time) was in my ER, about to put someone I had just helped to revive on a ventilator to take the stress off their lungs.

    All kinds of alarms were going off, and I couldn’t figure out WHY!!!

    Then a nurse held up an electrical cord not connected to an outlet and asked if anything looked “familiar” to me.

    How many lives am I saving by no longer being a respiratory therapist?

    Thanks

    B~

    Reply

    1. HI Nadine

      Welcome to Alzheimer’s Speaks. Please feel free to ask any questions or respond to any of the post. We are just one big family here trying to make life easier for those dealing with Alzheimer’s disease and Memory Loss. Lord kknows I don’t have all the answers so your insight is very much appreciated.

      Hope to hear from you again.
      Lori

      Reply

  15. Lori: Nice blog! Persons diagnosed with memory decline as well as caregivers appreciate the opportunity to learn what others have done to improve life situations as you already know.

    I am in both categories although when I was dx’d, the term “pre-senile dementia” was used. That was so long ago, I have never looked back.

    Started taking nightly melatonin long before I knew taking that supplement is part of many studies. One study (38 pgs.) indicates melatonin supplementation may greatly reduce symptoms of Alz, Parkinsons and other neurodegenerative disorders.

    Moving electric appliances, telephone equip. and any item w/speaker (magnet) is “critical” for good sleep and resultant increases in energy to brain and body!

    My website tells how and why “we are all guinea pigs!” http://www.guineapigsrus.org Best wishes and take care – Joanne

    Reply

  16. Hi Lori,

    Putting “Memory People” in the search only brings up this blog, not the group listing.

    Reply

    1. HI Sumei

      You have to go to facebook and then put Memory People in the search box. Then the groups will show up. I suggest yo start the the original group and and then decide if you want to add the others, memory Poeple 2, a recipe group, a prayer chain…. these are all sub groups which you can belong to as well.

      Hope that helps Sumei

      Have a great day!

      Lori

      Reply

  17. I put Memory People in the search on Facebook and I can’t find the group at all. How about the link to the group?
    Thanks, Pam

    Reply

    1. HI Pam

      I just tried it and it worked. Please try again. There have been a lot of goofy things happening on facebook lately…Or you can befriend me on facebook Lori La Bey and ask to become a member and then I can add you into the group. Sorry it didn’t work smoothly.

      Lori

      Reply

  18. my husband is only 64 and he has had alzheimers for several years now. he is violent at times and i dont know who he is any more. he can still walk and talk but needs help with meds clothes foods etc. i feel so alone and am always only two seconds away from tears and anger.

    Reply

    1. HI Gloria,

      I am so sorry to hear you are having such a difficult time. I highly encourage you to join Memory People on facebook. There you will find you are not alone and can share openly your feeling and frustrations without being judged. Others will offer advice, suggestions, and tips that have worked for them. Information is exchanged between individuals actually going through the same journey. Advice given is between friends, not given by professionals. Most people are amazed at the comfort this site has added to their life. I sope you try the group out.

      Lori

      Reply

  19. i got the fb but it is on with all my close and casual fb contacts i would not care to share some of my depressed feeling and real problems with them. it does not appear to be confidential???

    Reply

    1. Hi Gloria

      The Memory People Group is a closed group, so that means your posts are kept within the group and will not show on your wall or others wall outside the group. I hope you check us out! I think you will find great comfort and support there, while building new friendships.

      Lori

      Reply

  20. i put i did it on the memory people wall and it showed up with all the other fb messages and two friends put like on it. im confused apparently that one does show but this site does not. do i only use this site to put my feelings and into on? btw thank you for your answers.

    Reply

    1. HI Gloria

      The only thing I can think is that your friends are part of the group Memory People, as then they would be able to see what you have posted in the group. All comments will show up on your fb comments of new things said, for your review, but they will not show on your wall when posted in MP… only on the MP wall which is closed. Is that making any sense? If that not I would say post your question on MP and someone else may be able to answer it better. Have a great Easter!

      Lori

      Reply

  21. Hi Lori,

    How are you? Been thinking about you lately, but sorry, just busy with “stuff”. Hope you are well and your mom as comfortable as she can be 🙂

    I’m a little bit anxious lately because next month I will be getting my follow-up tests for the breast cancer, just to make sure nothing is “brewing”. It makes me nuts!!! Other than that…everything is fine with me and hubby.

    Praise God, my son finally found a job!!!!!!!

    Take care Lori and will chat with you soon.

    Love,
    Sheri

    Reply

    1. Hey girl!!!

      So nice to hear from you. I have been thinking of you often wondering how you are doing. Guess what… my daughter got a job too!!! It’s time to celebrate.

      Mom is doing well. Still hanging in there although I’ve notice her teeth seem to be a bit more senstive lately. I can’t beleive honestly that an infection has taken her as they are so bad, but I just can’t have her go through the pain and discomfort of getting them pulled either. It’s all about comfort care at this point. Ten years she has been in the nursing home. Hard to beleive, but when I look at all the lessons she has taught me through her disease I am thankful to her each and every day.

      As for you check up I can understand why you are anxious, but I feel in my heart all will be just fine…like you are coming into your time of life to celebrate, enjoy and be free. Do you feel your Mom around you? I feel like she is very close to you and oh so proud of you.

      Have run. You have a great day and let me know how things go with your appointment.

      Love you!
      Lori

      Reply

  22. i dont feel at all comfortable on the fb memory people. feel it is too public to put what my husband does and says. for protection of his dignity. and my sanity. had to take to emergency room last week for raging agitation. i can usually control but getting worse. we know he has the inherited form due to he is very young and his dad once told him all men in his side of family died before 57. we married in our forties so i never met his dad. my husband is very strong and i have kept him physically well. its getting more difficult to control his anger and restlessness and shaking sobs. er doc put him on ativan and our fam md referred me to special psychologist to adjust and work with meds etc. but i dont think it is covered on my ss insurance. no one else on this blog seems to share these types of things and this is what i need. the nitty gritty of daily care and things like refusal to take off dirty clothes. hes a diab. so try to keep him from wander in kitchen and get sweets my daughter has there for her children. this is the type comments i just dont want to share unless others know and understand this. thank you and i don know you are having it very difficult too but different.

    Reply

    1. Hi Gloria

      You are right, it seems to go in spurts when people share personal stories on the blog. I think most that do go into a chatroom area such as Alz.org has or Memory People. There is another group on facebook called Memory Keepers. It is strictly for caregivers and is also a closed group. As of right now there are only a hand full of people in the group and you might feel more comfortable there. I beleive two fo the woman on there have gone or are going through similar situation to yours. You might want to consider trying Memory Keepers. Another place you might want to try is the Alzheimer’s Reading Room. Bob has many articles and a large following and he is always looking for qustions to pose to pull in his readers with answers.

      As for your questions on $$$ I would recommend you talk with a counsleor at your local Alzheimer’s Association. They know all the ins and outs of what is available to who and when. Also there is a group called National Caregivers Associaiton http://www.nfcacares.org that might be helpful. Or a good Elcer Law Attorney would be able to assist you and help with future planning.

      I know how frustrating and tiring giving care can be. I hope you find answers soon which will bring you and your husband calm and inner peace.

      Have you tired playing his favorite mucsic? It works for many and is worth a try. I also recommend keeping the news off as they seem to take in the bad stuff but yet are not able to process it which causes gret angst.

      Good luck to you and your family and thank you again for writing!

      Lori

      Reply

  23. thank you for your empathy, the ativan really helps but of course it doesn’t really give me back my husband of past years. i did find out the psychologist is covered by my ins accept for co pay which is great. a couple of days he didnt need ativan at all and he sleeps better. he is more controllable if i notice he is starting to get agitated and give him half or quarter or whole tab. i seem to know instinctively when he is starting on roll of anger etc. it doesn’t seem to make him zombie like as i feared. when he breaks down and sobs , i feel so helpless and guilty. but the ativan does help that also. of course psychologist hopefully can help with any medical regime. he loves music which is how we met. he had a collection of 2000 records of all types of music. at times when he is like my terry for a while, i want to cry and feel bitter when he suddenly changes with strange behavior. we are in my daughter home so cant just blast music as we have in past. he wont leave head phone on and listens at speakers at computer to our favorite music for a while and then is up and wander or restless again. thanks for your support.

    Reply

    1. HI Gloria,

      Your husband is so lucky to have you! I can feel the love you have for him. It’s a beautiful thing. Not everyone is lucky enough to have that in their life…some never do at all. So called to hearthe medcine is working and so is syour intuition! On the music, have you tried ear buds vs the headsets? Have you tried sitting with him and both of you wear them together. Maybe holding hands as you listen? I’m thnking it is worth a try. He might feel more comfortable not doing it alone and that might help him get used to wearing them too…. just a thought.

      Keep in touch. Enjoy your Mothers Day

      Lori

      Reply

  24. we had a good day but tonight terry, constantly tearful and restless .could not get him to lay down and he said he was shaky which he tend to say every time he unset and can chang in minutes. i know not low bs. i reassured him every was physically and verbally i could. but i was trying to keep from crying after an hour of this. my daughter was on the net trying to check for suggestions. then she told me every thing said this starts at the end and now starts going faster. then she was upset for telling me that but she started crying too. she said it feels like we live in a vacumn. the outside world and then her with us and everything timing different. i finally had given terry an ativan and he would not lay down . just kept wandering and picking things up and asked me where we were. saying he loved me. i told him it was ok i was here with him. last time he got out of bed i asked if he wanted to go down stairs and watch tv and suddenly he said yes and went down. like day and night. my son in law said a joke to him and he laughed and sat down and is now watching tv.

    Reply

    1. HI Gloria
      My thoughts and prayers are with you and your family as you al struggle through this journey. It is not for the light at heart. I just ran across another webiste that might be helpful to you. I played around on it fora bit and thought it might be something of interest for you. Here is the information
      “The Alzheimer’s Foundation of America (AFA) has unveiled an interactive “community of care” Web site that will help family caregivers meet other caregivers, learn about the brain disorder, and connect “live” with experts. “Care Crossroads” addresses a major issue raised by caregivers of loved ones with Alzheimer’s disease: a feeling of isolation and stigma. It also provides an alternate type of support service for caregivers whose round-the-clock responsibilities prevent them from interacting in person at organized programs. Among the site’s unique features, AFA’s social workers are available to respond to questions and concerns — online, by e-mail, or via phone calls to the organization’s toll-free hotline at 866/232-8484. Family caregivers can also take advantage of an online multi-disease health and wellness support community and a “learn” section, where visitors can learn more about strategies for behavioral challenges, recreational activities, and safety issues appropriate for the specific stages of the disease.
      Go to http://www.carecrossroads.org/.”

      Reply

    1. HI Deb

      You can subscribe to the blog which is on the right column just under the badge for the award winning blog, or the RSS feed sign up in on the right column towards the bottom.
      Thanks for checking us out and wanting to follow us! I am now following you site.

      Lori

      Reply

  26. Hi my name is Lee or Carlo,

    I’m 48 years young and the DR’S like that I may have early Alzheeimer’s. I have to go back to my Dr. Oct 31st to run more test and I am scared. I’m already on disabilty other heath reasons and now this.I have no family to talk to because they have passed away. I have a partner, but she doesn’t want to talk about it. because it scares and worries her. I need support and I don’t know where to turn. If there is anyone out there that can help please do. Thank you and God Bless all of you.

    Lee or Carlo

    Reply

    1. HI Carlo
      Thank you so much for writing. YES there is support for you and your partner! I highly recommend joining so online support groups. Memory People On Facebook in my mind is a must for you. There you will find Rick Phelps, who has early onset and started the group.There are others who are memory impaired,caregivers both family and professional and advocates of the disease. There are people all over the world who participate. You may also want to connect with DR Richard Taylor and Norrms McNamara. Both are on facebook but you can google them as well, Both have dementia and are doing amazing things to change the world! Alz.org also has several chat rooms. And of course I would suggest calling the Alzheimer’s Association for a free consultation.

      There is life with Alzheimer’s! don’t let it take that away from you. If you do have the disease, you maybe like my Mother who has lived 30 years with memory loss. That is way too much timeto throw away.

      Please let me know how else I can help you.

      Take care…prayers coming your way

      Lori

      Reply

  27. My best friend and husband passed away Feb.4th, 2011 following a stroke. I cared for him here at home for many years after he had been diagnosed w/Alzheimer’s disease. I was fortunate to be able to receive so much information and assistance from the Alzheimer’s Assoc. over the years. Our small town had no support group at the time and again was fortunate in being able to be instrumental in forming a group for caregivers and patients alike.

    My Bob was so kind and had a wonderful sense of humour all along. He had always been active in community associations and as a Realtor made so many friends along the way. When I first noticed that my dear love was having memory problems he must have been suffering for more years than I wanted to admit. All the tests confirmed his diagnosis as having Alzheimer’s.

    I miss caring for him so much. I’m sure that w/o the stroke we could have stayed here at home for many years to come even tho’ he no longer realized just who I was and so much more. Because now that my income is about cut in half and all of our savings went for his health care, I need employment.

    Luckily I found a part-time job at a local Nursing Home in what they refer to as ‘Precious Memories’. Yes, it is the Alzheimer’s/Dementia Unit. ‘My’ people are so very special to me. I see my dear Bob in some of them in so many ways. Their needs, the way they look to us for care and comfort, so forgetful and always wanting to ‘go home’. I’ve learned through so much on-line research that this really is a somewhat common thing for our residents to say. ‘ I want to go home’.

    After assurance that they are home and we will be with them, they can then go on and enjoy some other form of activity, snacks, some closeness with us and gentle conversations. I try my best to recall and remember how my Bob felt on some days when his confusion was at its greatest and he felt ‘scared’ and alone, even tho’ I was seated next to him.

    Sorry for this long comment, but I just now ‘found’ this site and felt I should share some of my/our story. I wish that I could work full time but at 75 I do what I can and know that I must take care of myself better than what I sometimes do. So part-time is good enough for now. And Bless all of you, Alzheimer’s patients, caregivers and other members of your group.

    Reply

    1. HI Bobbi

      I am so sorry for your loss but I appreciate your comments and willingness to share with your story. I think it is fantastic you are willing to help others and work part time at the nursing home. I love the name “Precious Moments!” Keep up the great work. Bob I’m sure is very proud of you for what you are doing.

      Lori

      Reply

  28. I WAS SO HAPPY TO GET THIS WEB SITE FROM A FRIEND.
    My Dear Hubby has had this awfull sickness for about 7 years now, and gradually getting worse.
    He is 91 and we have been married for 63 years.
    I am going to go to Facebook and see of I can sign in.
    Hugs to all Rosalyn

    Reply

  29. I heard about you guys on TV. I’m 54 and the docs say I have “mild cognitive impairment”. I have had several aunts with Alzheimer’s; rather the ones that lived long enough. Most of all my aunts & uncles die of cancer. I had always wondered why I never had any relatives in a nursing home. I also have had cancer five times. My sister asked how was I dealing with “chemo brain”. My problems started a couple of years ago. I’d forget names of common things; like “soy sauce”. I’d get lost & confused in my own neighborhood where I’ve lived for 18 years. I’d forget things, lose things, ask the same questions over & over. They put me on Vitamin E and a C-PAP machine. For a while it seemed to get better then, it came back. I’m afraid I’ll go to the mall one day and then, forget where I live or where I parked my car, or what kind of car I was driving.

    Reply

    1. HI Karen
      Thanks for writing. I’m glad you found us here. Have you tapped into any support groups? “Memory People” on Facebook is a great group where people living with memory loss, their loved ones, business professionals in healthcare and advocates get together and support one another. There is no pitching or selling of anything. It’s just common people in the trenches with the disease discussing what works what hasn’t, developing friendships, swapping recipes and telling jokes or saying prayers for one another. If you haven’t tried it you might want to check out the group. It is a closed group which means the comments you make in the group won’t be posted on your personal facebook page like normally happens. The group was started by Rick Phelps who lives in Ohio and has Early Onset. There are people from all over the world in the group so it’s nice you usually can chat with someone no matter what time of day it is.

      Thanks again for taking time to write!

      Lori

      Reply

    1. HI Judy
      It is easy to join Memory People. All you have to do is type in memory people on your facebook home page (You do need to sign up and become a member of facebook first). Several groups will show up. Click on the one that is Memory People. It will take you to there page where you can click on a button and ask to join the group.
      Let me know if you have any problems and I will but you in contact with one of their admin people.
      lori

      Reply

  31. Hi I have been with my significant other for 17 years. He is 14 years older than me. He will be 61 in August. He has been to the doc for his memory and they said well if you loose your car, Call me! I think well I know it’s more than that. Iv’e mentioned to my husb that his memory of things is not normal. His Father and sister had it. His sister is in a nursing home and his dad died from it when he wandered off in New York city and froze when they found him. I’m only 48, next month. I just don’t know how to handle this. I’m a CNA and have taken care of many people with this disease but it’s just not the same. I love him with all my soul. I just need guidance, suggestions, etc..He’s not bad really NOW but more recently we’ll have a discussion he wont remember, or I’ll be in the room with him for over an hour and he doesn’t even know i’m there. I’m scared. Thanks for listening Rhonda

    Reply

    1. HI Rhonda

      I am so sorry you are struggling. I can relate yet my experience was with my Mother, not a significant other and I’m sure there are additional looses you are feeling. I would be glad to chat by phone if you like. I think it might be easier to communicate that way if you are open to that. There is a small group on facebook called “Memory Keepers” It is a small group of spouses and significant others supporting one another. They are wonderful people and I think could and would be willing to provide you support in your journey. You might want to check them out. Let me know if would like to chat. I’m not sure where you are located. I’m in Minnesota her in the US. Prayers and thoughts are coming you way.

      Lori

      Reply

      1. Thanks so much for replying! I do not have a phone right now but when I do I would love to talk. But I will go to the site u mentioned. I am from Connecticut. Thanks again Rhonda

  32. Hi, I am an Alzheimer’s caregiver, and a dementia caregiver support group moderator. We have many resources as caregivers, but patients do not! So, I would like to speak as my wife who is in the final stage.

    My name is Martha and I have had dementia “of the Alzheimer’s type” for 190-1/2 years. Throughout most of this time I have been aware that I have this disease, and have been very frustrated by my declining abilities to perform tasks which used to be natural to me. My husband, Richard, cared for me at home until he became ill from the stress I suspect. I began to hallucinate about three years ago and, contrary to my “normal” personality, became abusive, called my caregivers discussing names and basically became unmanageable. At that time, one of my live in caregivers became overwhelmed by my behavior and told my husband she would have to quit!
    We live in a small town, and my husband realized that finding a new live in caregiver would be very difficult. Fortunately he found a private home where I would be well cared for. The home is run by a Hispanic lady who, in her later teens, was involved in a car accident and suffered massive head injuries. She
    recovered totally and dedicated her life to care giving. She has three patients
    of which I am the only one with dementia.
    This is my home and I feel safe and well cared for. I understand many things that are said in my presence, but can only reply with yes or no. Sometimes I do not reply at all. I communicate with my caregivers better than anyone else, but when my husband comes to visit, if I am awake, I try to work up a smile for him. We hold hands and I try to show that I love him but, I can’t do that very often. He tells me he loves me and that is comforting, although I soon forget his words! I am so confused! I have no concept of time but I do remember my name! That’s not much help but, at least I do remember something!
    Martha, age 70, Dementia patient, and 1/2 Italian, so I never give up!
    Richard, for Martha, my one true love!

    Reply

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  35. This hit very close to home. Not only am I a caregiver to patients with EOAD but my grandmother is definitely showing signs. The doctors, too, are dragging their feet with her diagnosis. It’s not helping her cause any. My grandfather is undergoing some medical problems his self and the doctors say that her actions are to stress. I do believe this is intensifying her symptoms but not the cause. She forgot i just got off work in less then 15 minutes. I’m not an expert but I see it everyday. It hurts to see the lady who helped raise me, who i used to plant flowers with and see nearly everyday struggle to recall my name. I’m honored to be a part of this,

    Reply

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  37. Pingback: If you have Alzheimer’s or Dementia, there’s a Group waiting for You « Law Firm Chronicle
  38. Pingback: Thank you, Alzheimers.net! | The Long and Winding Road...

  39. Please test your memory with MemTrax. http://memtrax.com/test/ This test measures the type of memory most specifically affected by Alzheimer’s disease and so poor performance on this test may be an indication of the presence of Alzheimer’s disease, both early and middle levels of severity. This test is invented by J. Wesson Ashford, M.D., Ph.D. Thanks!

    Reply

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  42. Cooper dog is a volunteer who visits Alzheimers units. 💛 Cooper has a heart of gold. When petted he wags his tail and smiles with sparkling eyes that convey a message of love.

    Like volunteers the world over Cooper helps as best he can. It seems he might have been sent on a mission to help others by a higher power. http://www.alternet.org/books/two-studies-show-volunteers-live-longer-and-happier-lives …

    Being a rescued dog, good boy Cooper was flown from Popular Bluff, Missouri to the downtown airport in Kansas City, Missouri by Pilots n Paws. http://www.pilotsnpaws.org.

    Pets for Life can always use a few more comfort dogs. http://www.kcpetsforlife.com

    Coopers favorite song http://tinyurl.com/COOPER-STAR ☂ Stories are based on real life and enjoyed by all reading ages, they have received over 1,000 (5) star reviews. http://tinyurl.com/ogxxlup ❤️

    Reply

  43. I am the spouse of an Alzheimers who was recently diagnosed.
    I am way on the outside looking in. I dont know what to expect or who to talk with and he won’t let me in at all.
    I am frightened. I don’t know what to expect or how far along he is. I have no one to talk with partly because my grown children feel very much in charge. Is there a support group for spouses? I am not yet a caregiver. Just watching and waiting and feeling as though life is pretty much over. Any recommendations about a support group for spouses would be greatly appreciated.

    Reply
  44. Pingback: If you have Alzheimer’s or Dementia, there’s a Group waiting for You -

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