Alzheimer's Support Groups

Welcome Upnorthgma! I am a 24/7 caregiver for my DH (dear husband) who was diagnosed with AlzD in May of 2011. He was a workaholic with no outside interest before he retired in 06. Now that he is retired he has no interest in doing anything. He is almost 75. I relate to your delima but have no suggestions. Oh, by the way I live on the gulf coast of Florida. Hugs to you! ♥

Welcome Upnorth, I am from upnorth myself, in Canada. My mom is 93 and dozes a lot too. However, she does sleep all night for which I am very thankful. Some good suggestions already from others on how to keep your mom busy.

Hello upnorthgma and welcome! I took care of my Mom who lived in an assisted living/memory care unit. She passed away a year ago. Mom certainly had her days and nights mixed up. She'd be so tired and wanting to go to bed at 4-5 o'clock. She'd take a nap in the afternoon and be in bed by 8:00 p.m. The staff would tell me that she'd get up, poke her head out the door to see if anything was going on. She was obsessed with meals. She often said they didn't get any meals there. It was because she had forgotten she had eaten already. As many as 6 times a night she'd get up, get dressed and try to go to the dining room. Mom wanted no part of the activities the facility offered. Sometimes I'd get middle of the night calls from her just calling to "chat". Does your Mom nap during the day? Sounds like you've tried just about everything. Have you discussed this with her doctor? I know several people on this web site use melatonin to help with sleep. It's not habit forming and you can get it over the counter. You need your sleep particularly if you have a sleep disorder! I do hope something can be done for her and for you. Sending you gentle hugs with my one wing.

Tizzy

WELCOME Upnorth. You have found a terrific website, for venting, learning, laughing a tear or two, &,support. As you can already see, someone will pop in with a possible suggestion. I care for my DH (dear hubby) of 55yrs, 24/7. He was diagnosed nearly 6-7 yrs ago.We are from NW Iowa. Good Luck, & hope that you can soon have 'sweet uninterupted dreams'...

Went back to Dr. and results are alz.,not ftd as thought,,,Same road and in mid moderate stage,,Does anyone have any thoughts on Namenda reallly helping,,have been on it about 4 yrs now,, Storming here and did we need the rain,, everyone have a blessed nite// Dh is in such good shape and is so bored not being able to do things he has always done o lord the things he can mess up ha

MIL has been on namenda and aricept for about 3 years, and even the Dr says that it is hard to tell if it is working. They are meant to slow the progression of the disease but how do you know where they would have progressed to without it?

Southerngirl4, the diagnosis isn't really a surprise, is it? Like you said, same road. My Mom was on Namenda for about 5 years. We did try and take her off it and she got much worse. Putting her back on helped a lot. Each person is different on how they handle these AlzD meds. Some can take them and others can't. None of these AlzD drugs are a cure. They say it helps to slow down the progression.....for awhile. What kind of things can your DH still do? Does he like puzzles? I mean the simple ones. 30-50 pieces but certainly not more than 100. Sorting his sock drawer? Sorting nuts and bolts? What kind of work did he do before AlzD reared it's ugly head? It's important to them to feel useful and productive and to feel they have a purpose. At times it's harder to entertain them, I know. I'm sure the others will also have suggestions. Congratulations on getting rain! I thought we were going to get some today but no. The sky spit some rain drops this afternoon but not enough to do any good. Just enough to make the dust on our car a lot more noticeable. Hope you have a good evening as well.

Tizzy

Upnorthgm, WELCOME to the conversation. I'm down south in rural South Texas. I can't offer any advice because I don't have that problem with my 93 y.o. mom. She does take some naps during the day, but I try to leave lots of lights on and make alot of noise to keep her mostly awake. She sleeps more soundly than I at night. Looking forward to getting to know you better!!

another thing my mom loves to watch is the birds. i have several bird feeders in the back yard and she sits in the sunroom and looks out the sliding glass doors at the birds for a long time. we have a lot of different types of birds. coming and going all the time. i spend a lot on bird food but they are so intertaining. one of Gods wonderful masterpieces.and the colors are so beautiful. have a nice day everyone stary

love the birds here, too! At the AL that my folks are at, they have a lighted cage with several types of finches in - very colorful, they even have young ones occasionally. Someone comes and maintains the cages and removes the little ones when they are big enough as it would get too crowded. It is a focal point for the kids when they go to visit Old Papa and Granny. ♥

So good hearing from all of you and welcoming me. It so touches my heart and makes me feel so uplifted to listen to everyone's suggestions. I am in northern part of lower Michigan. My mom loves to watch the birds also, and we have put up several feeders right outside the window for her to watch. She also will spend hours and hours folding clothes. You are right in saying people like to have a purpose and my mom was always a giver ... rarely did anything for herself, but now that she finds it is hard to accomplish even the simplest of tasks for herself, it is so very sad. My dh and I attend a monthly Support Group at the Senior Center in our nearest town (Hale, MI). There we find a lot of loving fellowship and laughter which is great, but here I can talk freely about the downs I have and not bring the whole group down. Yesterday, my mom undressed right in the living room in the middle of the day. Good thing dh wasn't home from work yet. I tried taking mom to the senior center for lunch and fellowship with others, but she really hides inside her shell. Funny, because before her symptoms began she attended all the activities and even drove one of her friends to the center downstate because her friend was mostly blind. Like I said, she always did for others. I still will take her to the center if my older sister comes to visit. All three of us go, and Mom seems to be much more social. Power in numbers I guess or else it's because my older sister is there. Don't know, stopped trying to figure out what is going on in my mom's head quite some time ago. When I get frustrated (and I do), my husband is usually there to remind me it's the disease and not my mom. If he isn't here, I walk away for a couple minutes and try to take several small breaths of air to calm myself down. My sister thinks I should get someone to come into my house to relieve me even if only for an hour or two. I will try to check out what is available up here and what it would cost. Does anyone know if Medicare has any provisions for this disease? I am so glad I found this site. Thank you everyone once again for being here for me. I hope I am able to do the same for you.

We'll hold you to that! lol ♥ Not sure what all is available through Medicare, but was you Dad (or your Mom) in the military? The VA has been a godsend for us. They supply Dad's meds and also supplement the cost of Assisted Living (AL). I'm sure someone else will pop on with some helpful advice - and there is also the links at the top of this page - just navigate through to see what's there. :) Hugs! ♥

Hello again upnorthgma. I'm south of you in Grand Rapids, Michigan! Glad to have another Michigander on board. My Mom also loved to watch the birds. When she first moved into independent living, she had a very small balcony on the third floor. She started bringing bread rolls back to her room from the dining room after meals. She'd break the roll into small pieces and throw them out on the balcony. Only sparrows came but she enjoyed them so. Then she asked for birdseed. Okay. I also got her a small bird feeder. My Lord the amount of bird seed she went through!! She began calling these little birds, "Her family". Okay, what am I? Chopped liver? Then the lady that lived below her started to complain about the shucks from the seeds falling onto her balcony. She liked sitting out there on a chair and reading her paper. Mom got very offended. We quit feeding the birds. I was so thankful because it seemed I was hauling up 20lb bags of birdseed up to her room! Let's not even talk about the droppings they left behind. euwww I got off track here. It's great that you have a support group you can attend near you. It helps so much to be able to vent and get it off your chest. Many times, that's all you need is to be heard. That's what we do the best. :-) I'm not sure if medicare contributes anything but check the titles on the top of this page. Click on them and that opens a pull down menu. Also, in case you want to ask the moderators of this room something, just click on that little blue box on the right that says "feedback". I'm so glad you found this web site. The more the merrier!! Your DH (dear husband) is right when he says it's not your Mom, it's the disease. God bless him! Sending you big hugs for you and your family.

Tizzy

Thank you Tizzy for all the information and the chuckles on your Mom's "family" of birds. My Mom can pop off with the funniest things sometimes. Also, thank you Gaffly for your support. My dad was in the military and my son is now dating a Registered Nurse at the VA Hospital in Saginaw, Michigan. So that gives me some more resources to check out. The problem is, sometimes the nights are worse than the days. But I am going to check with her doctor about Melatonin. My dh and I are quite familiar with that supplement, but I will ask her doctor what she thinks. I'm concerned about her incontinence, and when she gets up at night it usually is to go to the bathroom. And yet, in the morning she is still saturated. Sometimes it feels as if we just can't win, and unfortunately with this disease we can't. Someone had mentioned Namenda ... my Mom started on Aricept and then Namenda was added, but we saw no improvement at all so they stopped it and she is now on the generic form of Aricept. Our support group was on a coconut oil kick for awhile. There is a book written by a caregiver who gave it to her husband to help his dementia and it worked wonders, but I guess there is a lot of controversary with that also.

As long as your Dad saw active service, I think there should be something there.....some of it depends on personal resources, too. Good luck!

hey un. my mom is on aricept. the dr. wanted to up the dose but i said no. it was causing her indigestion problems. she is still taking it the low form only. the other thing i have her on is for her nerves. it is homeopathic meds. it is for anxiety and depression . it is called luyties #394. i works wonderful. i aso take homeopathic meds. i have arthritis.

Thank you Gatfly. We were also told by a Hospice nurse that if the doctor states that help is needed with daily routines, they can stop in and help with that sort of thing. My Mom is so tiny, I am not having issues with her baths yet. But I know she will probably become less balanced and weaker as time goes by.

Yes upnorthgma, we've also heard and discussed the use of coconut oil. I haven't heard if anyone has actually given it to their loved one yet. You know, with this disease, one will try anything if there's even a glimmer of hope for a cure or a reversal of the dementia. I'm so glad you've found this web site. I look forward to getting to know you better. I'm sure you're going to be a great addition here!

Tizzy

I have tried the coconut oil and didn't see any difference with mom. the only problem I had was getting her to take it. It's good stuff though and I think it certainly can't hurt. Everyone is different and what works for one might not for someone else.

Stary, thanks for the info on the homeopathic medicine. Have made a note of it. What type do you take for your arthritis?

corry i take life extension arthomax with uc-11@apriesflex and n-a-g 750 n-acetyl glucosamine salt free supports joints and intestional functions. i also use an old time remedy Castor oil, rub on the joints.

Stary where do you buy your luyties #394? I have searched online and cannot find it. Am going to try the castor oil remedy on my joints too. Thanks for the info. ♥

Thanks Stary. Wow, this site has been a huge help in all kinds of ways.

i got the luyties at the health food store in my town. but they have it on line. homeopathic medicine. that is what i give mom so she can rest and for her nerves and anxiety. it is not habit forming and is safe and it really works great for her. stary

Thanks, I'll try the GNC store right down the street from us. ♥

Hi upnorthgma, Thanks for your questions, and thanks to everyone who offered suggestions! If you still need more ideas and information, here are some links to Caring.com resources...

• Activities for spending quality time with a loved one with Alzheimer's disease: https://www.caring.com/articles/alzheimers-activities and https://www.caring.com/partners/mild-moderate-alzheimers-activities/plant-an-herb-garden.html, or for more advanced/severe stage: https://www.caring.com/articles/how-to-spend-quality-time-with-someone-who-has-advanced-dementia

• Medicare information: https://www.caring.com/medicare You can also visit this site that the government has created for caregivers: http://www.medicare.gov/campaigns/caregiver/caregiver.html[medicare.gov]

• VA Benefits info: https://www.caring.com/articles/veteran-benefits

• Also, when you need professional support, such as in-home care, adult day care, assisted living or a memory care community, Caring.com has an extensive senior living directory with more than 24,000 consumer ratings and reviews of the listed providers: https://www.caring.com/local

I hope these links are helpful to you!

Dear anonymous...WELCOME! This is a super group, filled with characters of all kinds. I am one of the crazier ones but most are just really sweet and helpful. You are on a tough road and just as you think you have a grip on it, your GPS goes on the blink! Stick with us, ask any questions you come up with and feel free to jump into any of the threads that interest you. Usually someone on here can relate to a given situation and even if we don't we know that we may run into that kind of thing the next day.

I'll be glad to give you any help I can. My husband of 50 years was also very sharp prior to this illness -- he could add fractions in his head while I was just sharpening my pencil! My new mantra is "He can't be in my world, I have to be in his." If you feel it would be helpful, try my blog at http://daybydaywiththebigterriblea.wordpress.com/

You are being welcomed to this group with opened wings to help you fly thru all the good and rough days to come. It is a very rocky road and could definetly be a long one but as caregivers we all get thru it with eachothers help warmth and guidance. I know I couldnt have made it thru a day many a time without all the support I get here.Anytime of the day usually someone is here to help you in any manner we can and know that we care for eachother as a sister and brother group No judgements or questions. Just support love and guidance is here for all. better yet its better than some sister and brother relationships its for real We are here for you

Add my welcome. I've been at this 8 years, watching my well educated, competent man revert to childhood but very slowly. We advise you to use the 2 drugs available, stay in touch with his specialist as there can be really great help there, and start educating yourself now! If I knew then,,, But so much of what I avail myself of now for my constant learning & adjusting to his changes was not available when we started this journey. I recommend you read all our comments by letting Caring.com know you want an e-mail about every one. Read MayoClinic.com & Alzheimer'sreadingroom.com as being the best help I have found other than this splendid Support Group!

You will find the folks @ Caring.com very compassionate & helpful so use your Feedback button to the right whenever you need to. There's a lot of help right here. And keep posting, telling us more. Piver

I see this post was from last week - busy one for me - so I missed seeing this earlier. WELCOME!!!! I'm pretty sure I fall in the same category as Window(pain), not very much useful information, but I try to help folks see their better selves - mostly through humor. hee, hee.....hang around and you will have more friends/acquaintances than you can shake a stick at - but please don't shake that stick! ♥ hugs!

I have no excuses for missing this post from last week. Sorry, anonymous, for not responding earlier. I've fallen behind on my emails again. I'm a mess if I don't check them three or four times a day, but who has the time when we are 24/7 caregivers? Welcome to the family! Don't know what I'd do without my friends on this caregivers' site. I care for my hubby who has Alzheimer's. We've been at it for several years. It doesn't get easier, but you do have plateaus in order to catch your breath. Hope you'll stay with us so we can get to know you and your partner. Consider yourself hugged...........Gillian (Gilligan) ♥♥

Thank you everyone for warmly welcoming this new member to this Stage Group! In addition to this support group, Steps & Stages also includes a guide for each stage of this horrible disease. Here's an overview as a starting point (with links to each stage-based guide for caregivers): https://www.caring.com/articles/alzheimers-stages Please keep visiting your Custom Care Guide as well, to get expert tips specific to your loved one's condition. I hope these suggestions are helpful to you.

Sorry for a bad day....tomorrow will be better. Hugs. Caryl

To field if grace and kathy.......... I feel yhe same way at night it is a struggle and sometimes I am not proud of my self the way I behave.i feel I have not truley accepted this dx although it has been 6 years100%.iam always wishing for my old spouse. My son was over last night he is good with him but I know it is breaking his heart. We have the 2 youngest grandboys til weds that should be fun!!!!!!!!!!!oh well good days and bad days. Nothing I can't handle with the help from the angels. Pauline

"Challenges are what make life interesting; overcoming them is what makes life meaningful."

sending hugs your way... sometimes God gives us those tears to cleanse our sorrows...

Grace, could you put him to bed a bit earlier than normal, get him asleep and then you go and have a quiet time alone? Is this possible? I would also resent h aving to go to bed earlier just to placate him if I were you also. They change so rapidly. Has anyone noticed their mate actually begin to stare at women young and old? He will even turn around and look at them (in my presence) sometimes bumping into things while looking? Does he think that he is attractive now with all of his visible body break down? It is kind of funny to me and at other times, I resent it because it is disrespectful. If I refer to this, he will say something to the effect that, "Oh, I was looking because she is short or she is tall or way she walking, or she looks like somebody!" note: he does not do this with men

I understand your feelings and thoughts...I start the day with the best intentions, but by bed time, I am pulling my hair out. At least Neal sleeps well, so I can start fresh the next morning.

Yes so does Gary. (Since starting the sleeping pills..) BUT a big blessing to be rested and ready for another day.!!! Oh by bed time I am spent. Often way before that... Do you all find it hard to get your life together some days? I can't even plan meal anymore. We do ok for Breakfast and some lunch... but supper time... I am brain dead... and can't even THINK of what I could fix or we could eat. I have to get this together~ I really do.

and so you will get it together, we have faith in you

To Field of Grace...thank goodness for frozen dinners, veggies, etc. Don't know what I'd do if I had to actually plan and cook meals from scratch.

Big hugs to you guys that have hubbys with this. I think I would lose my mind. Truly you are amazing to deal with this. Mamaw is hard enough even with hubbys help. If it were me alone like you guys I think I would have given up a long time ago!!

I have all day alone to plan or else I would be mindless. My doctor's visit went well, he told me to do something exciting and go on vacation and that I need to take care of myself first. I think this is true for all of us and if we don't do this, it will affect our health. My husband is quick, ready to dispute anything I say, however, he is 95% wrong but it does not stop him. He and I were watching Family Feud with the question (a bad question, I think) was what animal would you hate to mate with. answers some gave porcupine, elephant etc; I yelled out "SKUNK" my husband looked puzzled and said, "SKUNK, that could not be right because they hatch eggs, they lay eggs, they don't mate!" I asked him didn't chickens and ducks lay eggs and he said yes, I then stated that they lay eggs yet they mate. It took him a while to process the statement but after a bit, he said, "I guess you are right!" Yet he is still pretty good about discussing the bible facts. so all is not lost to him and also yet working.

Hi everyone, Thanks for sharing your caregiving stories and support for one another! As you can see, you are not alone in the challenges and feelings you've expressed. Caring.com regularly surveys members of this community, and has found that the majority of family caregivers are deeply impacted by the financial and emotional costs of caring for their loved ones. Here are some resources that can help...

• Caregiver Wellness Solution Center: https://www.caring.com/caregiver-wellness This includes tips for diet, sleep, finding time for self-care and handling stress and burnout.

• Taking a break from caregiving is also important. Here are 8 ways to get some respite: https://www.caring.com/articles/respite-care

• Take this quiz to assess your risk for caregiver burnout, and then learn strategies every caregiver needs: https://www.caring.com/articles/caregiver-burnout-quiz

• If you're not sure if you're experiencing burnout or depression, this information can assist you: https://www.caring.com/caregiver-stress Please discuss this concern with your doctor(s) as well.

Hope these suggestions are helpful to you!

Hi everyone, Thanks for sharing your stories and experiences! Here is some expert input for this symptom of dementia...

From Ask & Answer: * My mother believes she is talking to the dead. Should I be concerned?

• Is it common to have hallucinations with Alzheimer's?

• How do we deal with Dad's dementia delusions?

From the Custom Care Guide: * Alzheimer's Symptom: Hallucinates -- sees, hears, smells things that aren't real

I hope this is helpful!