Alzheimer's Support Groups

Welcome! I understand what you're saying. I admit I am too proud to ask for help or admit I am not superwoman and can do everything. Some people don't understand and don't know what to say or do. They either turn away from you or are uncomfortable. I have said before that no one truly understands what we all are going through unless they are caring for someone with this terrible disease. Stay with us and we all will offer you support and an ear anytime you need to vent or just talk.

Hello bach and welcome! I do think the cruelest is to have a spouse with Alzheimer's. This is your partner, the person you thought you'd grow old with. It's so unfair. I hope you will come to this web site often. There are so many here than know just how you feel and can commiserate with you. Don't be afraid to come here and vent. No one will judge you. We all are very good at listening too! ♥ Coping had a great suggestion to read the book "Learning to Speak Alzheimer's". You're not alone on this journey you didn't sign up for. We're all here for you bach!

Tizzy

Welcome Bach. I also take care of my almost 75 yr. old DH who has ALZ/D. It is definately a "challventure" (challenge/adventure)! Something new everyday to handle. Please keep coming back here and join in. We all know how it is to take care of someone with this type of disease so we will never poo-poo you! Sending you ♥ - {{HUGS}} - and prayers /\ ...... ♥

thank you all for the support and the suggestions!!! I'll get the book Coping in Canada recommended. Thanks!!

Welcome Bach---you are not being selfish or childish at all--you are just really finding out about human nature and who really cares.....I look after my husband as well but hes into the severe stage by now.Many people that I thought would have helped and stood by me--or my DH (dear husband)--are nowhere to be seen .And then suddenly.a bright spark of a human being )maybe an Angel in disguise...) turns up--like today.I had 2 guys come to clean my grease trap and well and one of them had verbal diarrhea.....but he was so kind and when I told him about my DH he was so concerned and praised me for my strenght --a person Ive never met before ! I am glad you found us,please stay and be a part of a truly amazing group of people ♥ They brighten my day every day !

Hi bach! Boy do I know how you feel!!!!!!!!! Hugs and prayers!Rangeboss 21

Welcome Bach--I hear what you are saying friends just disappear and have no understanding. They may ask on how things are going but really don't want to hear what you have to say. It is lonely being a caregiver but oh so rewarding. I take care of my DH (dear husband) who has ALZ. I've had to quit my job so I can be his caregiver 24/7. But I look at it as living my life with him to make him happy. Join in when you can, it seems like someone is here most of the time. Hugs to you Hon.

Welcome to a good ol' Snoopy lover! Yes, this can be a very lonely life but there are things we can do about that such as becoming a part of this great Support Group. We read stories similar to yours frequently on this forum; I lived it for a loong, lonely time until we were invited to move in with caring family - which involved our moving from CA, USA, to the Philippines! It's great as I now need help with caring for DH.

Having lived with this disease in my DH for 8 years, I can suggest that you do as many fun things now with your Dear Husband as you can. Take lots of pictures, just go enjoy retirement activities while you can. Take walks, go to the beach, the park, out to dinner, whatever you two enjoy. Take short trips.

One other thing I am really learning is that, even tho DH no longer recognizes me as wife nor remembers anything about our 58 years of marriage!, or about his professional life, he does know I am caring & trustworthy & he clings to that. I am convinced from my learning from other care givers that the core, the spirit of a person, esp. the emotions, never leaves. Do not fear the future! Live only in this moment, right now. It is really all any of us have. Experience joy in all the little things, his smile, the sunset, the smell of a rose. That's Grandma's advice as I find it works. Oh, and take good care of yourself and your health, including your emotional health. Chatting with us is a good start on that. Sending hugs your way wherever you are. Piver

Welcome Bach!! Looks like you've gotten the red-carpet treatment here! ♥ I think that Alz/dem is similar to cancer in that some folks just don't know how to react/behave around someone who has it. Two words: with love! It can be so isolating, as so many of the c/g's here have found. I help manage my folks care, but they are in an Assisted Living (AL) facility- so it is quite different. Still challenging, but in a different way. I like the idea of taking lots of photos of things the two of you are able to still do together, then make a little album of them. Go through them frequently, as it will help them stay fresh in his mind longer. No two people are exactly the same with this disease, and your DH may or may not exhibit all the particular symptoms that you see discussed here. I view the forums as educational - storing the info away until such time as I will need it. Some I may never need. Others, I may wear out! Hugs to you and your DH - this is a very personal journey that you are embarking on together.....♥

Welcome Bach - you are in exactly the right place. The only way I could become more comfortable with friends dropping out was to find new ones here and elsewhere, who could explain that weird phenomenon. It seems so disheartening, but as one counselor described it, illness creates a barrier, where there wasn't one before. All you can do is get what you need somewhere. Reach out to any supports available. Take advantage of everything you can, because there are people who are willing to help, but often not where you would expect. Even family can become estranged in a way. But reach out to the greater human family and you will find support and understanding :)

it has really helped me to hear from all of you. we are both trying hard to enjoy as much as we can everything we do and all the time we spend together. he might sometimes get distant or seem indiferent or not remember my name. even though i still haven't learned to go through these moments without breaking down, I do understand they are part of the illness. I have already begun to read the book Coping in Canada recommended, I downloaded it from kindle amazon. very good recommendation. thank you all for your words and warmth, I really needed it.

I'm glad you're feeling a bit better now bach. It's so helpful to know there are others out there facing similar things. I hope you'll be able to rest easier tonight. Wishing you a restful night and a brighter tomorrow! Sending you a feathery hug.

Tizzy

Welcome to Our Family bach ♥ You will continue to find great support and comfort here among all the OWA's (one winged angels), which you are one now. We call ourselves OWA's because it takes the support of another in order to get up and fly. We have members from all around the world, so there is usually always someone here to help you through. I'm sorry you had the need to find a support group but I'm very glad you found yourself here. This is the best support group in the world ♥ One of the best things you can do now is read as much as you can find regarding this disease ~ knowledge is power ~ and ask as many questions as you feel you need answers to. We're all traveling down a very difficult road and we're all here to help one another along. {{{HUGS TO YOU & DH}}} ♥

Bach, I trust your DH always cares ID with his name, address, your home & cell phone number, any other helpful info in case he wanders off. In the US there is a national register which local police can call & it provides bracelets & other types of ID. And it doesn't hurt to call the local police station to tell them the info & his condition so they can keep it on file.

Welcome, bach. I can't say that I understand exactly what you are going through as I care for my 91 y/o Mom. I do understand the loneliness of distance from friends and family that just don't understand how to help, or don't really want to help. My brother is full of suggestions but has no idea what it's like to care for her as he lives 1000 miles away and doesn't see her on a regular enough basis to know what's going on. I give him credit for trying to be helpful, but he hasn't got a clue and doesn't really want to know what my DH and I go through on a daily basis. You have become a member of one of the best support groups in the world as we are literally scattered around the globe. When things get really depressing, there's a bus you can call for and it can travel anywhere. It leaves from Imagination Station and is a real party bus. We also try to celebrate all kinds of birthdays and anniversaries. Any and everything to lighten the mood when it needs to be lightened. Again, welcome to our little home.

I think pretty much everything has been covered above. I can only add a heart-felt welcome to our group of OWA's. You are not alone and have definitely come to the right place for support. {{Hugs}}...Ro...♥†♥

I would also like to say welcome. The only thing I would like to add is, you will not be so lonely anymore because you found us and we understand what is like. Love and hugs.

Hi Bach, you didn,t give you or your husbands age, but we are in ver similar situations. I,m 63 and my wonderful husband is 64 on Sunday which is also our 24th wedding anniversary, He went through the myriad of test to eliminate any other possible reasonemerging symptoms for his symptoms. They took place over about six months . Then a group of associate doctors gave us the diagnoses of his having Alzhiemer,s. He had helped me care for my mother who also had Alz.in our home the first ten years of our marriage I want to add he did this with patience and love. The time I spent caring for my Mom made me aware of the start of his own symptoms 4 or 5 years ago, I,m having trouble lately dating events as I,ve had so many personal loses the past few years I focus on the now to prevent dwelling on all the pain in my past.

I,m curious to know how others spotted the disease in their spouse, the spouses age and how they handled being given their diagnosis. Because of his relatively young age and his family thinking it,s a figment of my mentally ill brain (I,m bipolar) they don,t believe he has this and now shun me completely telling their friends and other relatives of their poor brother married to someone by rights should be in a supervised group home or a mental institution. I think Hughie must have been found as a baby under a cabbage leaf because as far as character goes their is no family resemblance. It wasn,t this hard watching who in my eyes was the perfect mother, being consumed by this disease. Don,t get me wrong it was horrible and heart breaking, but it,s easier with a parent as you expect to lose them in one way or another. No my wonderful Hughie I suffered through two marriages before finding him. I came across this wonderful group of people a few years ago and being alone in this they were my first and remain my only comfort. I don,t comment often as the social anxieties I have with the bipolar make it extremely difficult communicating by phone or over the internet. It takes close to two hours of self editing before I,m satisfied enough to submit my comment and sometimes after all the work I still can,t.. But when ever I manage to I receive an out pouring of love and concern that helps me stay positive once again. I come here a few times a week giving myself a lift reading what these wonderful angels are doing to help ,encourage and give their love with out judgment to those of us floundering in circumstances we never planned on and never dreamed we,d be dealing with. The only advice I can offer has already been said, live for the day, cherish each one and although he,s gradually losing the outward signs of his personality and losing his abilities, the one you love is still in there fighting and trying to accept his own part of the battle. Hughie has lost all his initative now and has to be proded to do everything from getting dressed to brushing his teeth. I still leave him a list of little jobs to accomplish while I,m away at work but the majority of the time he forgets to read the list. I get around this my going over it wiith him when I get home and we do them together. It gives him a sense of self worth that he,s helping me out. I wish you strenght and understanding and send my love, as I know the others have done as well. It won,t take very many visits and you,ll know in away you,ve come home..

Please forgive my typing, I need a new keyboard, all my keys stick. I,m also exhausted emotionally and physically tonight. I,ve worked six days in a row in this heat and this morning Hughie,s lively , young at heart Mom died of cancer at 83. and there was nothing wrong with her mind. I,m sure now that she,s passed first chance she gets she,ll be giving a piece of it to Jehovah for the downhill slide the world seems to be on.

Wow, squirrels nest, for one who says writing is difficult for her, you certainly stated yourself beautifully! You wrote a great essay on living with memory loss in a loved one.

Our hearts go out to you & Hughie in the loss of his Mom. ♥

S nest, to answer you curiosity, my DH first was aware of his memory loss in late 2004 when he could not recognize our daughter's house. Looking back, I can see vagueness, sleepiness, slipping out of old activities for awhile before that. We are now 84. A few months later I went looking for a doctor who would diagnose him without DH fooling him. Took awhile. Meanwhile, I was taking charge, doing everything like preparing our house for moving nearer to family, & all the things he had done so competently. Like you, I live for right now & am careful to keep myself at peace, without worry. My Christian faith is stronger every day as I rely on guidance, peace, & joy from my Lord.

Squirrel---thank you for stopping by and letting us hear from you ♥ So sorry to hear about Hughies Mom but glad that shes now Gods personal assistant ♥ My hope is that you will be able to get some rest,both physically and emotionally.....I love to line in your post that says "the one you love is still there....." and its true--sometimes it feels like my DH is in a bubble or a glass cage and I cannot get through to him but then something happens--maybe just one word (he does not really talk).Like this morning when he said my name and "get up"---he was sopping wet and needed cleaning and changing. I am so happy that you found Hughie---or should we call him a Cabbage Patch Kid---and you`ve had so many years together ♥ Oh and Very Happy Anniversary AND Birthday Wishes all rolled into one !! Sunday should be a day of celebration---maybe a quiet one as you think of his Mom. She may not be celebrating so quietly ,though ♥ Many hugs and Love to you both ♥♥♥♥

Squirrel's nest, I have to agree with Piver. You write beautifully!! I took care of my Mom who lived in an assisted living/memory care facility until she passed away nearly a year ago. Mom always had some unusual quirks so we didn't notice the symptoms right away. What tipped us off was her frequent misplacement of objects and all too often fender benders with her car. Later she was unable to tell us where the accident happened. It never involved another vehicle. Mom was savvy enough to pay out of pocket to have her car repaired so it didn't affect her insurance coverage. I have one sister who lives 2 hours away so most of Mom's care came to me. When Mom began to hallucinate is when we knew something was wrong. A trip to her doctor and then to a neurologist confirmed my suspicions. Mom used to winter in Texas but it is my belief she was first diagnosed down there. She went through many tests but was never able to tell me what for. I did not have POA then so I wasn't able to speak with her Dr. I agree with you squirrel's nest. I too think it is much harder to care for a spouse. Your whole world changes as does theirs. This is supposed to be your life partner. My heart particularly goes out to all those caring for a spouse. I do hope you post again. Your in-laws must be very ignorant of bi-polar. You obviously got the best one with your Hughie!! Much love and hugs to you.

Tizzy

So glad to see you post, Squirrely! and you are a very eloquent writer- don't fool yourself! ♥ I ought to read through my own posts more often - errors abound! - but most often we read through those unless we are feeling a little impish! ♥ CELEBRATION TIME!! We have a birthday and an anniversary to dance about! ♫ ♪ ♥+♥ ♪ ♫ Happy Birthday to Hughie & Happy Anniversary to the two love-birds!! ♥ HUGS!

Squirrel's nest, I'm so sorry I forgot to offer you and Hughie my deepest sympathy on the loss of your Mother-in-law.

Tizzy

so sorry, Squirrely - don't know how I glossed over that one, myself! ♥ Condolences to you and Hughie! ♥

Squirrel's nest, you have inspired me with your post, you write wonderful. ♥Also celebrating with you for your anniversary and Happy Birthday to Hughie♪☺♪♪ I'm taking care of my DH also, he was diagnosed two years ago, the day we were told was totally a day from hell, I'll never forget that day and where I was standing when we were told. On the other hand I saw things going on with him six years ago that we either brushed them off as getting older or just ignored. Never in a million years did we ever think this would happen to us. But it has and we are dealing with the best way tht we can. There are no guarantees in life we take one day at a time. Hugs to you Hon

Forgot to tell you My DH is 63 and I'm 59. hugs

Squirrel's nest, how are you? well responding to your questions, I didn't realize at first what was going on, I thought it might be part of aging. it was a wonderful friend we have the one who insisted and got a doctor's appointment. we got the diagnosis last august. as for people around I guess for them is much more difficult to realize what is going since they don't see all you see. I am sure my husband's children (both 30 something) don't understand what is going on, and go on having a similar routine of one coffe once in a while. they don't realize that he doesn't ask about them anymore, I am the one who tells him to phone when I see 3 weeks go by without having contact with his daughter. I think people need us to be very clear, talking about the situation, explaining what we need, describing what difficulties we are going through and how they might be able to help.

Bach, I agree. Care givers need to develop assertiveness, authority, firmness. I stole Avio's last night when DH tried saying no to a shower, she told us she simply takes her DH into the bathroom, takes off his clothes & into the shower he goes. I did it & DH is now clean! Thanks, Avio.

I also believe in telling everyone about his disease, including DH when he asks for help with his confusion. He accepts it & I have never shocked or intimidated anyone else, family or stranger. I think care givers have a responsibility to get the word out - some docs call this disease epidemic. Others need to be aware as they are about cancer due to lots of publicity.

Amen Piver!

Piver--Im glad it worked for you ♥ My DH had his first shower today in 3 weeks so hes very clean now--at least from the waist down......sadly I dont have to "force" him anymore,now its a case of me,DH and son ALL getting in the small shower--son holds him while I wash---without him it would be impossible.We`ll do it again tomorrow when son is at home.

Avio, do you know about shower chairs? Instead of buying a hospital style, I just have an ordinary white plastic arm-chair with a wide, steady base. DH doesn't need it yet to shower, but it stays in the bathroom for him to use when taking off shoes, etc. (We have a wheelchair accessible, therefore large, b-room.) I believe the arms are impt. to help him get up. But with help, the shower stool might be right for you.

Ive been thinking about one of those but at the moment Im a bit wary in case DH gets one of his falling-down-like-a-wobbly-ragdoll moments so I would not try to take him in the shower by myself---if he goes limp in there I`ll never get him out! And having the right arm broken he does not have much strenght to push up,either---I help him sit up and stand up.But thanks for the idea---I will keep it in the back of my mind ♥

The very best shower chair is the kind mom has now. It allows the person to sit on the outside of the tub on it, swing their legs over and then have the shower. Opposite on the way out of the tub. One note about good shower chairs: they have a suction cup on the bottom so they don't slide. I know a lot about them because I clean a lot of suites for seniors. So I am an expert:-) Seriously, I like what you wrote Piver, about caregivers needing to be assertive. Sometimes I feel like I am being very bossy but at times it is the only way. Sending all of my fellow OWA"s a big hug tonight.

Corry, what about when the tubs have the slippery bumps on it. I purchased two differant shower mats for DH and they say they can't be used on those type of tubs. Will the sucken cups work on them? I hope you understand what I'm trying to say. Just wondering Hugs

Piver, on the chair with the arms, when my mother had her mascetomy a few years ago thats what we used to have her sit on when taking a shower. It really worked great, it gave her something to lean on while showering. Hugs

I think the suction cups will work on that surface. Just how high are those bumps in the tub anyway? I have seen strips of non slip surface on tubs but not bumps. I think some shower chairs are o.k. even when they don't have the suction cups but it does depend on just how unsteady a person using it is. Mom is quite wobbly and so she needs the one that sticks tight to the bottom of the tub.

The bumps aren't very high but just high enough so a siction cup from the mats won't stick. I do have a shower chair to use when the time comes and it just sits in the tub.

The suction cups I have seen on some shower chairs are large and very strong. Sometimes I feel like I have a workout just loosening all of those cups to take the chair out so I can clean the tub. And then the chair sticks to the bathroom floor and I have to loosen them all again.

@Nac, have you tried placing a towel on the floor before you start the shower? Just don't cover the drain, but it will keep him from slipping. ♥ @CiC- that sounds like a really good one - but I immediately thought that when you take it out to clean the tup, lie it on it's side or place a towel underneath it so it doesn't stick tot he floor. [that's the way my mind works before 5am....]

Corry---thanks for a laugh---Im sure it was unintended but I just had an image of you trying to pull the chair from the tub,then from the floor--oh look,now its stuck on the wall.....forgive me Corry,its early and Ive only had one coffee---LOL.......♥

snorckle....

I can picture it!

As I recall, Corry is not as tall as me and I also picture it getting stuck to the ceiling and see her jumping up and down trying to grab hold of it to make it "come to Mama"! lol ♥

I would like to get suction cups that I could attach to DH`s hands and feet---no more falling over !

now THAT brings to mind a comedy sketch where the guy's feet are stuck to the floor and he leans impossibly this way and that way.....

Nothing better than waking to a good laugh. Sorry, Corry!!

Hi and good morning, yup still morning, still dealing with a funky Sophie, she finally ate a scrambled egg and I have homemade chicken soup started so will get her eating again. She still seems ok, no fever BP is 118/78 (better than mine!) not sure what is bothering her. Got her up this a.m. instead of letting her lie in bed. Not sure what else to do, if this keeps up I am going to call her Dr. in the morning I think. We use a shower chair but are fortunate to have a walk in shower and grab bars, so far is working well.

Glad I could bring some laughs to my fellow caregivers. Honestly, sometimes I loosen one of those suction cups and then another only to find the first one is stuck again. But no, it's never been stuck to the ceiling yet.

Gat, that is a wonderful idea about placing the chair on its side or using a towel underneath. Thanks for thinking of that. It will save me a lot of grief.