Alzheimer's Support Groups for Caregivers

Alzheimer's Support: Featured Caregiver Conversations

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Caregiver Wellness: Thankful for the Relief and Comfort I Find Here

I have been helping my husband who was diagnosed with Alzheimer's about 2 years ago also has liver disease for about 4 years. I find the Alzhiemer's to be the hardest to deal with because he changes sometimes minute to minute. Lately I find I'm too impatient with him and then just hate myself later. I'm so thankful for the support of family, friends and neighbours, but I get upset with myself when I complain to them about my day. Not sure how to get passed the feeling of guilt, remose what ever. He doesn't want to do anything but watch tv, play games on the computer (which I think is good) or go to casino. I find this site gives me a bit of relief and comfort when I read what others are going through, I tell myself I'm luckier then others. I'm much younger then my husband so everyone tells me he is very lucky, because I am able to look after him, I wouldn't have it another way. The kids now that I will care for him as long as I can. It just seems that I'm doing more to make his day better while Iose the things that make me happy. It's a crazy cycle. I'm trying to get him to give adult day care a try, which would give me a few hours of relief once a week. I have been looking after sick/dying people for about 10 years now, I'm just about done myself. Thank you all for share your stories, views and suggestions. Thank goodness for the Internet.

from the Moderate Stage Support Group

Gatfly said...

good advice, Millie! thanks!

milliefeathers said...

Bentley, My DH just sat around or laid down. Seemed depressed. Just wouldn't start any thing unless i did it with him. His neuro Dr told him he should go to a structured daycare. He called it rehab for his memory loss. At first my husband said he was humiliated when I dropped him off.I cried the whole day.( It was like dropping off your child for their 1st day of school) When I picked him up he was fine. Now he goes 4 days a week. He says he doesn't remember what he did but it must have been OK because He's says he's not mad at me. He seems happier. I think because there is no stress in what they do there. They do word games, exercise, cook, bingo, disscuss articles in the news and of course arts & crafts.He's always winning prizes. He spells better than me. He's great at word jumble and crossword puzzles. But don't ask him what he did just minutes ago. this is one strange disease!! I have gotten help to pay for the daycare by applying for Community Medicaid.Had to rearrange some finances. See an ElderCare Lawyer. It is paying off by what he has been able to receive in benifits. You may be surprised that you Qualify. We own our home, he has S/S & a Pension. I had to get his name( as Benificiary) off my IRA and he couldn't be the owner off any Cashable Life Insurance. Ask questions maybe your state has a program to help you.This has saved my sanity!!! We live in NY.It would be to YOUR benifit and HIS to try structured daycare. Good Luck & Hugs, Millie

Bowman55 said...

Bentley, have you tried getting your hubby involved at your local senior center (if you live close enough to one)? With my mom, she didn't want to go and she didn't want to eat there. I started going and socializing with some of the ladies and gents. My mom would go when I went but she wouldn't eat lunch unless I did. Eventually, she decided she wanted to ride the bus. She loved the MALE bus driver. She goes every day now and doesn't like to miss. Also our senior center takes the seniors to the casino on the bus. Does you hubby prefer male or female company? He likes computers so finding a companion with computer knowledge would be great. You can probably pick and choose someone with the same interestes as your hubby. Just my two cents. . . Deb

Sue922 said...

Bentley1 I hope to take the advice and search out some of the facilities that some of these folks are using. What a wonderful testament that they are pleased with their services and help them make it through!!! I will continue to pray for all our brothers and sisters who are involved in this terrible disease!! Hugs to all Sue922

CaPeachGa said...

I haven't tried them yet cause in the summer DH gets out in the yard and cuts grass and pulls weeds and keeps himself busy, it's the winter when all he does is sleep and never change out of his pj's so I thought if I could get someone to come a couple of hrs twice a week to just visit with him and be companionship it would be something for him to look forward to and a reason to get up and at least get dressed.

floy said...

I am using Home Instead, too and have been very pleased with the service. I said I would be willing to recommend them, and so I will. Good luck

CaPeachGa said...

Susie, I found a caregiver site through caring.com It's called Home Instead - Senior Care and they offer non-medical provision of personal care, companionship, meal prep, light housekeeping, medication reminders. I've thought about looking into this for my DH because I have to work from home during the days and having someone to come in a couple of days a week just to spend time with him, watch a movie, play cards, someone to talk to, we have no one close that he's friends with here. Unfortunately when we moved here he had already started showing the symptoms of the dementia and had a hard time being around people he didn't know well, due to being self conscious. He loves to talk to remember about his careers and such. And although my relatives love him to death they don't understand or have the patience to do that and none of them live close enough to be able to do it even if they wanted to. They also provide advice and counseling for caregivers like us.

floy said...

Ditto to what everyone has said. You can come here to vent and get love and support. Everyone has been angry with their loved one and said unkind things...the only good thing is that the loved one generally forgets it right away. We are all human and have to forgive ourselves when we fall short of our ideals, but you are earning your angel's wings every day!

Gatfly said...

Feeling sad, frustrated, out of control - those things are all natural. How you react/play them out - that is where this group comes in! There is ALWAYS someone who has it worse than you do, and plenty of us who look up to you as being near-sainthood for doing what you do. Getting help is paramount, from everything I have heard on this site - eventually, the outside caregiver will no longer be a stranger. You do need to take care of you - first and foremost - or you will not be in a good position to care for you loved one, long-term. It sounds like you have a good local support system with family and friends - allow them to help you - accept their offers, or they will stop offering. Good luck and hang in there - I've just gained another idol! hugs!!

SusieQ8 said...

I understand where you're coming from. I have no one to talk to or go for help except this site. I try and not lose my temper but sometimes I do. Other times I'm just sad.

Jlance said...

My Mom was same about not wanting strangers to help her but there is providers out there that are use to patients not wanting them in house, Mom has tried to throw them out of house many times and they will call me at work and i talk and calm my M om down and it will work out after several weeks you just have to be willing to let it work . Mom loves her providers now she has 2 and loves both of them.

bentley1 said...

Thank you for your feedback, suggestions. My husband dosen't want strangers in the house. The kids and one of my neighbours have come to stay with him in the eveing a few times while I go out with my girlfriend. The kids want me to attending group sessions, but I find that this web site is as good and I can access it when I want or need to get a different perspective and a good laugh. I have told them about the website so they can too get some insight into how I might feel; mostly though how Alzheimer's is robbing their dad of some of the joys, fun, laugher we have had.

CaPeachGa said...

Bently, I go through the same things with my DH about losing patience, I work from home and some of the work I do I have to really concentrate on or will make mistakes so it's hard when he's having a bad day and keeps wandering just wanting to talk. I feel bad after I do it too, cause I know he can't help it, but it does get frustrating at times, I think we've all been there!!!!

Jlance said...

Bently I feel the same been caring for mom for 2 years and at times it drives me crazy. You need to look in to getting a provider or family member to give you a break i have provider for 5 hours a day which keeps me in sane. And I am so happy to go to work for relief. Good luck and stay strong

Wantmymomback said...

Hi Bently, I hear you about "guilt"..I deal with it just about everyday..I stay at my sister's the majority of the time now-a-days to care for mom because my sister has to work. My husband thank the Lord is very understanding, compassionate and supportive and encourages me to be here but I feel guilty that I'm not home w/him and when I am home w/him I feel guilty not being here w/mom. It's a no win situation right now. Some days I deal w/it better than others, I just push away the guilt..of course there's many other reasons for my guilt. If I get frustrated w/mom (don't have a good poker face and she knows me too well) etc.....I have to be careful not to let it get the best of me (guilt)and just say this too shall pass - better days are coming -but some days it bites me in the A..(moon)...We're all in this together and this group helps me everyday to laugh, be patient, bite my lip, deep breath, count to 10...whatever works in the moment...But laughter works best for me....Hang in there Sister...Hugs to you !!!

Flygirl54 said...

Hi Bently. yes this site is wonderful and so are the people on it. It's the place to go to vent,cry,share,support and let's not forget laugh. I have had more chuckles here and that really help our sanity. Even if you just monitor it frequently, you'll reap rewards. And let's not forget to pat youself on the back. You have earned your angel wings!HUGS. Flygirl

Show all 16 comments

Alzheimer's Symptoms: He's Spiraling Downward and May Need 24/7 Care

Magkunne said...

Thank you so much for this web page. I am 24/7 for my father inlaw and unfortunately dad was diagnosed with Alzheimer's dementia and Sundowner's. He lives with my husband (only child) and I. I always come to this platform for advice and to be able to vent. I have a wonderful support team around us. Which I found here. I love you all so much and to all the care givers big hugssssssss to u all. I treasure each day that is given to me. I recently lost my mom in April 2011 and Dad was diagnosed in June 2011. Alot on my plate I know. But I promised my father inlaw that I would take care of him as long as I can. But in the last 2 weeks dad's symptoms have spiraled down hill. I may have to get 24/7 care. I feel guilty but I know it's the right thing for him.

from the Moderate Stage Support Group

Magkunne said...

Thankyou Emily the information is great.....hugssssss

Emily M. said...

Hello everyone, Thank you all so much for the support and advice you've shared. Magkunne, have you considered in-home care as an alternative to a care facility? Recently, Help Choose Home shared a webinar with us titled "Help Choose Home: A Basic Primer on In-Home Care". You can find this webinar here: ( http://www.helpchoosehome.com/past-webinars/ ). Another option is respite care, like Adult Day Care. You can find Adult Day Care services in your area in our Local Directory: (https://www.caring.com/local/adult-day-care). You also mention feeling guilty for seeing 24/7 care even when you know it's the right thing for him. You may find this article on "5 Caregiving Rules You Can Break," here: ( https://www.caring.com/blogs/self-caring/5-caregiving-rules-you-can-break ). I hope this helps. Take care -- Emily | Community Manager

Tizzy said...

I have them right here Gatfly. I'll pass them over to ya

Gatfly said...

.....where's my box of kleenex!!!!!! sniff, sniff...

charlary said...

Yes she was so scared and wouldn't talk to me about her dying. About 4 days before she died she told me honey your mama's dying and I said I know Mom don't be afraid. It will be so beautiful there everyone is waiting and Dad won't be the same God doesn't let anyone be mean there. She said ya think so and I said i know so beside telling me she loved me that was the last conversation we had

Gatfly said...

I don't know which would be harder to handle, Charlary......hugs!

charlary said...

My Mom died of renal failure she wasn't confused at any time right up to the last week

Rence said...

Im in Edgewater florida hugs to you

Magkunne said...

Care Givers poem Midi: ""Change my heart,oh Lord" sequencer: Unknown Poem from Jill Eisnaugle's Poetry Collection Lord, bless me this morning and each one I rise With a wealth of strength; please bring hope to my eyes Be sure I'm well-grounded for those in my care Even if the challenge becomes much to bear Should this day bring hardship, please help me to find A beautiful memory for some peace of mind Please shower my life with compassion and love As I take my cues from your guidance, above. Lord, bless me this morning, as I make my way Please give me the laughter to warm someone's day Be sure I am steady, be sure I am wise Be sure I am ready, should struggles arise If I shed a tear, Lord, I pray you will see I'm making the most of the chores asked of me As I strive to put others' needs "˜fore my own Always stand beside me, so I'm not alone. Lord, bless me this morning and each one I live So I'll remain focused on the care I give Be sure I'm afforded the best tools allowed To serve others' needs and in turn, make them proud Please look down upon me and offer a smile So, I'll always know that my job is worthwhile "His eye is on the sparrow, and I know He watches me." I hope this poem helps get u through the days

Magkunne said...

thank u Bowman i read all the info sent my way.... I love u all and Rence I live in Saint Petersburg florida and u?

Bowman55 said...

Mag, please let us know how the appointment went.

Bowman55 said...

Twostep, I love the Merck Manual for health information. Here is website for you to search out renal failure. This one is made for patients and caregivers. They also have one for health professionals. Merck also has a manual for pets. Also under the first website listing, there is a section called Older People's Health Issues. These are online for your reading pleasure. : ) Deb http://www.merckmanuals.com/home/index.html http://www.merckvetmanual.com/mvm/index.jsp

Rence said...

im in Florida Magkunne where in Fl are you? hugs and prayers for you Rence

Magkunne said...

good morning to my family here..... dad had a real bad night. he had 2 bouts of the runs..... and still unbalanced..... called the dr this morning and made an appointment. he now needs a walker and wheel chair for going out. he is mad right now at me for the walker and chair but oh well. .... thankyou all for your prayers and thoughts I love this web page.... don't know what i would do without u all..... I LOVE YOU ALL HUGSSSSSSSSSSS. Coping in Canada where abouts are u I am from Hamilton Ontario now residing in Florida......

twostep said...

my fil was admitted to hospital and tey mentioned he was having renal failure which may cause confusion, any one have any info on that?

Bowman55 said...

Mag, I agree with all the others. Tizzy made some excellent points. The quick downward spiral could be something else that could be fixed with meds or taking off meds, diet, etc. Give your dad a chance and take him to doctor to see if something else is going on. Please keep us updated on your dad and FIL. Deb

Sue922 said...

Magkunne Ditto to what my sisters have already said. Please call and talk with someone to get some help - you are no good to anyone unless you are healthy and you need to find some peace with your decisions. God bless you and I will pray for you tonight!!!! Hugs Sue922

Coping in Canada said...

Magkunne, don't want to repeat what the others said but don't feel guilty if you do have to place him in a facility. You can still spend plenty of time with him there and then you can have the rest you need at night. Condolences on the loss of your mom.

Jlance said...

How do you no if they have UTI cause my mom never complains but she sure is acting alot more crazy now. Do you go to regular doctor or to nuerologist.

Rence said...

your in my thoughts and prayers mag and tissy is right he may need to be in a facility now

Tizzy said...

Hello Magkunne. First of all, let me say you have my deepest sympathy in the loss of your Mom. Is your FIL on any medications to slow down the progress of Alzheimer's? Seems to me that's an awfully fast decline if he was just diagnosed this past June. We seem to have an epidemic of urinary tract infections going on and that is another possibility and would explain the sudden downward spiral. Another possibility would be if your FIL was prescribed any new medications that might be causing the increased confusion. There may come a time when you can no longer care for your FIL yourself in your home. I know you promised him that you'd care for him as long as you could. The key words are "As long as you could". There is no reason for you to feel guilty if you need to place your FIL. You can be just as involved in your FIL's care if he is in a facility. You have to take care of yourself before you can care for anyone else. I think the place to start right now would be to have his Dr. see him and explain the sudden changes. You're in my thoughts and prayers Magkunne and I'm sending you big hugs for being such a wonderful DIL!! Tizzy

charlary said...

Yes you do and I will join gatfly and offer hugs. Good advice is yet to come so keep reading

trez said...

Hugs and prayers to you.

Gatfly said...

Hi Magkunne! You DO have alot on your plate! sounds like some of the other jugglers on this site -I honestly don't know how you do it! Hopefully those who are in the know will come on and give you some good advice . I will offer hugs!

Show all 24 comments

Caring for a Spouse with Early-Onset Alzheimer's: Any Other Couples Like Us?

GraceS said...

My name is Grace, have a husband just diagnosed with early onset Alzheimers at 57. I am 54, wondering if there are any other couples out there like us. We have been married 32 years next month.

from the Moderate Stage Support Group

Tizzy said...

Yes RobertaD. If Gidget23 sees your post she'll get in touch with you. If I see her, I'll tell her you're looking for her. Tizzy

RobertaD said...

I need help. I need to get in touch with Gidget 23 regardinig a quilt square. How can I get her profile page? Or if she reads thhis can she get ahold of me?

Emily M. said...

Hi everyone! Thank you so much for your suggestions about making profile images larger. I have passed your comment onto our product team for their consideration. As always, keep those suggestions coming! Take care -- Emily | Community Manager

2many2care4 said...

I do wish the pictures were bigger. Even if they were silly

Gatfly said...

I'll be waiting...... :)

Wantmymomback said...

You'll have to wait til next wk when I go home for my Dr. appt. I'll see what I have....

Gatfly said...

It's kind of funny - both my hubby and I were the kid in the picture that just HAD to screw off and ruin it - back in the day when you didn't know if a photo turned out until you got the prints back - man, my Mom would get sooooo mad at me! It is VERY hard to get a good picture of the two of us together, so when we got this one (from 2006) it has been my go-to photo. I'll leave it on, for a while, anyway. So, WMMB - where is the pic with you and your sweetie!??? Not that i don't like Max- he is ia cutie!

CaPeachGa said...

I like the one that's on there Gat, please don't change...PLEEAAASSSEEEEE!

Wantmymomback said...

Gat, that is a beautiful pic of you and your husband ~ the calf was adorable but this pic is really nice ~ don't be silly........

Gatfly said...

Well, if that's the case, I'll go back to the picture of the jersey calf! lol

CaPeachGa said...

Love it too maybe like on window's live messenger, they have a profile page people can view and the picture is larger so you can really see it.

Wantmymomback said...

Tizzy that's an awesome request ~ I'm backing you all the way on that

judithrose said...

I am so glad so many of the sisters responded with the compassion I have come to rely upon. As Wmmb said, your caregiving to so many family members feels overwhelming to me! Yes, talk to your MD about some medicine to help you cope with your situation. Does (s)he have any samples to give you? I know that some drug companies will help defray the cost of your meds--maybe you could check into that. Good pic of your "trio"! hugs

Tizzy said...

I wish those photos could be a bit larger. Anyway we could do that Care team??

Wantmymomback said...

Nice pic Mourning ~ keeping you in my thoughts and prayers today !!

Gatfly said...

thinking of you today, Mourning! hugs!

charlary said...

Hugs to you Mourning you certainly have had enough loss in your life. Take the anti depressants they do help

CaPeachGa said...

Mourning, love the picture. Hope your day goes well today, thinking of you and sending you happy thoughts!

Mourning said...

My new avatar is the Alz. trio-me, my bro, sis

2many2care4 said...

whoa that was a close one! Mourning you can join us up or down.

Wantmymomback said...

Mourning, your struggles have been heartwrenching. I think anyone who has suffered the level of loss you have is bound to be depressed. This is an awesome group and we're all here to help each other through. Sometimes getting through seems more of a struggle than its worth but if and when you do get through I believe your happy to have made it. Let the anti-depressants do what they're meant to do ~ help you through ~ and we'll all be here too. God Bless you and Big Hugs to you......

Gatfly said...

It's only in my head, dear - no fear of falling!!

2many2care4 said...

Please not the pedestal, anything but the pedestal.( I have a fear of heights sortof)

Gatfly said...

My pedestal is getting pretty full, guys! You all just have to make room for Mourning!! I feel so fortunate being able to get to know you - you all make my day!!! love and hugs!

Tizzy said...

I never was good math. I'm 61 Mourning. You've had a lot of losses in your life. My heart goes out to you. Tizzy

Tizzy said...

Oh Mourning. I'm so sorry. You have been through an awful lot. I did the math and you and I are the same age! I have a lot of "sisters" here. That is the way they used to care for people, by restraining them. I'm a nurse but no longer working. The hospital where I worked and in fact, most of Michigan, it is illegal to restrain a patient unless it is absolutely necessary and then only with a doctor's order and it had to be renewed every 24 hours. Not allowed to have all the rails up on the bed as it was considered restraining. So was medicating considered a restraint. My Mom was in an assisted living/memory care facility that was locked down. The staff had to let anyone out with a keypad next to the exit door. They had quite a few wanderers there. My Mom did not wander fortunately. So your brother is the same age now as your father was when he passed away, right? You will like this web site Mourning and give the anti-depressants a couple of weeks after you've begun to take them. Praying for you and sending you warm hugs. Tizzy

Mourning said...

I'm 64 now. It seems like forever. My Mother died of a brain hemmorage when I was seven, my son from Meduloblastoma when he was 21-first dignosed when he was 10. We don't have very good brains in my family.My sister was just diagnosed w/Alz. My oldest brother died 10 yrs ago, had Alz too

2many2care4 said...

How long ago was that?

Mourning said...

Yes, I was 26 when he died, he was 83. I found him on the kitchen floor having a seizure. Called an amulance and that was the beginning of my into to Alz. He lived with me for awhile but he kept running away trying to go home. Nursing home where he was tied to his wheel chair all day and tied to his bed all night. He had a massive stroke, hospitalized and died.

2many2care4 said...

oh sorry the ghost got it. as we say when it disappears. Is it a long time since your father died?

Mourning said...

Woops-my comment was too long and got dumped. It only took my Dad one year to die of Alz. Bro is much less combative. and seems to still enjoy some things. I just love him. He was a good brother to me. He was 22 when I was born,was always there for me. He's 83 now. I feel lucky to be there for him now. My sis is just a doll. You would love her. Everyone at NH does.

2many2care4 said...

OK my current dream ride would be to go to the ocean and see the sun rise and feel the breeze on my face and smell the salt water. What would you do?

Tizzy said...

Mourning, that's an awful long time to live with Alzheimer's. Have you been caring for him all that time? What stage is he in now, do you know? I'm glad to hear you feel he's receiving good care at the nursing home. Sometimes there just isn't much a Dr. can do if a patient is in the end stage of the disease. Please come back here often and post. We're all here to help you on this journey we're on. I was so depressed when I first came to this site. It has saved my sanity. God Bless you my dear. Tizzy

Mourning said...

Yes, I tried to quit taking anti-depressant on my own. I'm unemployed and drugs are expensive. I will pick up my new prescription tomarrow. Drs office finally called me back. I would like to take a long vacation and just rest.Maybe I can take it in my mind while I still have one.

2many2care4 said...

Mourning it sounds like you are really down. Can you get a break? What kind of life would you have if you could do anything you wanted to do? Grant yourself a mini imaginary vacation and let us know what you would do. That is what our bus ride is about, a way to escape with out going to de-nile.

charlary said...

My husband has Parkinson's also. The med he is on has helped the tremors in his right hand. Does not snore a lot just some nights he is up and down and doesn't know why

CaPeachGa said...

I love our doctor, last time we went about his anger outbursts the dr came in sat down and said so Rick, how's things going? Rick said, how long do you have??? and the dr replied, I have as long as you need.

dog tired some days said...

CaPeach, I am sorry, I can't think, My DH went to sleep center. DH had a stroke and was put in the hospital and the nuero there was the dr that told us he had parkinisms(I have no idea), but I think his regular nuero thinks he has parkinsons disease, although he has not come right out and said that. Think I will just pin him down next visit, but I don't care for him much and have trouble communicating with him. I did stay with him in another room(because of his ALZ) when they did the testing, I am sooo confused, please forgive me

Mourning said...

I don't think any one cares about little things like that anymore with him. Just waiting for him to die. That's not fair of me. Everyone else has a life except me so they don't have time to worry about the little things.

CaPeachGa said...

Hi mourning, he could be doing that because he's not getting restful sleep at anytime when he is sleeping so never gets that restorative sleep everyone needs. My DH sleeps almost all day when he doesn't wear his mask or when he has trouble with it, sometimes he'll accidentally turn over and the mask isn't tight and the air is escaping instead of staying in the mask.

Mourning said...

My bro. sleeps almost 24/7 now and snores really loud. He also has the jerking motions of his arms. I think Drs get tired of them and their problems and just want to be done with them. He does get very good physical care at Nursing home though. He's always clean and fed. He's in his 10th year of Alz.

Gatfly said...

Well, I learned something today- never heard of Parkinisms! (not a problem here, but never heard of it) I think I am really going to push for my hubby to have the sleep study - the snoring gets awfull sometimes, and he does that jerking/kicking as well. Thanks for talking that subject up!

CaPeachGa said...

Parkinisms is tremors in the hands mostly Dog Tired. My DH didn't have to go to a hospital to get tested, he went to a sleep center, they have the room made up to look like a hotel bedroom and I could stay with him if I wanted. You might look into one of those.

dog tired some days said...

Ca DH has had a sleep apnea test and they said he didn't have that, but I think he does, but I have the mask, because I have it and didn't even realize I had it. I think they said they could retest him, but he goes bonkers in the hospital. He also has parkinisms, whatever that means and strokes. I think he actually has parkinsons disease though, not just the signs, they are giving him pills and it helps some of the shaking, but not all.

CaPeachGa said...

Yep, he still jumps or twitches sometimes but it's when he's first falling asleep, when he finally gets into a deeper sleep with his mask on it's clear sailing for he and I both. We each can get a good nights sleep! Dog Tired you might ask you neurologist about this, does your DH snore alot and act there's something caught in his throat at night ot quit breathing? These are all signs, what happens is there's something in the very back of the throat that closes when they're asleep, usually when they're on their back and they snore loudly because the air is trying to come around that obstacle. Mine's would close completely eventually and that would cause him to stop breathing for sometimes almost a minute. I believe in the first sleep study to see if he had it, it once was more than 2 minutes, scary huh? They said the thrashing and disorientation and nightmares is their body realizing it's not getting enough oxygen and it sometimes feels as though someone is choking them, so they fight in their sleep to breath.

2many2care4 said...

Hi peachie I thought I remembered something about you DH and sleep and that you might have an idea for Dog Tired that could help with that strange behavior she was seeing. Thanks for the reply.

CaPeachGa said...

2m2c he's had sleep studies done and it was determined he has severe obstructive sleep apnea, it doesn't happen as much when he wears his cpap mask at night, but if he doesn't or falls asleep during the day on the couch is when the weird things start happening.

dog tired some days said...

I feel very blessed at times as I don't have any siblings, so therefore no fights. When my mom passed away, she wanted my daughter to have her furniture and jewelry, but she asked me first and I told her I didn't need anything, but she didn't leave much to my son who got butt hurt badly, so I gave him some money, which I didn't have to give up anything, because everything was left to me in the will. Hope things work out for you and your sister Tizzy. God Bless You

Tizzy said...

Aww, thanks everyone for the "love"!! I'm doing okay. I do miss Mom but I'm also thankful that she didn't have to endure the indignities anymore. My biggest problem now is my sister. Mom made us co-executors of her estate. Now all of a sudden she won't talk to me, she's angry with me, she's uncooperative with signing papers, etc. I think she's mad because I didn't go with her husbands attorney who is a friend of his. I get the feeling that she thinks I'm going to try to screw her out of her half. I feel like I'm under suspicion all the time. I think it's all coming from my BIL. In my opinion, our husbands have nothing to do or say about Mom's estate and shouldn't be included when we go in to sign papers or talk with the attorney. My husband is fine with that and doesn't "offer his opinion" at all. My sister and I used to be real close and we haven't been now for at least a year when she tried to get Mom to move to a nursing home near her. I had POA and I said no, that it wasn't in Mom's best interest and moving her would make her more confused. Hope when the estate is settled she'll get the bugs out of her britches.... Tizzy

Gatfly said...

I can't remember the term for it. Ghost may have been in it. Dad can't explain exactly what he is seeing - only really sees out of his right eye - and will move his head around until the object he is trying to focus on, comes into his field of vision. The eye itself is as heathy as it has been - it is the processor that is faulty - that took forever to get that across to him and Mom! Hugs to you, in caring for all your loved ones!!!

2many2care4 said...

Thanks Gatfly that's interesting. My daughter's cortical vision impairment makes it hard for her to understand what she sees. It's strange how she can look right at something and not "see" it.

Gatfly said...

When my Dad had his first big stroke, his vision was severely affected. He also had hallucinations, or at least that is what we called them. Since then, we have found out that when the brain is no longer processing what the eyes are seeing (his problem) then the brain 'supplies' pictures from memory - thus he would see people, objects, animals, etc. that weren't really there. Funny - it did not upset him when he found out it wasn't real. Freakier for the rest of us, though. I don't think it has been an issue of late. Just thought I would share that.

2many2care4 said...

Could his sleep disturbances respond to treatments? I know that there are also sort of sleep studies done and that alot more is known about sleep than used to be. Peachie have you had any sleep studies done? Any one else know anything about this for Dog Tirid?

dog tired some days said...

CA my DH does that in his sleep, besides jumping and falling off the bed hitting himeself on the head. He is always reaching in the air grabbing at things, it is kind of weird, because he will wake up and I ask him what he was grabbing at and he says he doesn't know

CaPeachGa said...

Tizzy, when you come into this group I've come to believe we are all what I'd call "forever friends" The kind that leave footprints on our hearts, I am so sorry about the loss of your mom, but we all still need you, we're not finished yet and until we all are finished we need every person out there to help us through. You have so much wisdom to share, so much support to show, and we just like having you around, I'm so glad you chose to stay!

GraceS said...

Tizzy I am sooo sorry for your loss, Mom are tough, hang in there, you are in my prayers,

CaPeachGa said...

Gidget, I know how you feel, mine was asleep on the couch yesterday and all of a sudden jumped up and went and just stood in front of the TV for awhile with his hand up like he was turning buttons, I asked what he was doing and he said the picture was all messed up. I don't know if he was dreaming about the 'old' days when TV's had horizontal and vertical hold button on them and you'd have to adjust them all the time when the screen would mess up or if he actually thought the LED HD TV would have a horizonal and vertical button for it. It's so hard to know what's going on in their minds, sometimes you think, it's gonna be a good day then all of a sudden in the blink of the eye it's a not so good day. Pulling the belt tighter for this roller coaster ride cause it's taking some very weird turns lately!

Gidget23 said...

Grace I am 61 and my DH with ALZ is 68. We have been married 43 years and he didn't even remember it this year. Hang on for a roller coaster ride of you life and watch out for those curves. Lostcause you are only seeing the beginning. The next stage is a loulou (sp). My never shuts up and has started sundowning. Where's home, where do we go to bed, I'm going to bring my tools home, etc etc. So far ladies I'm not on any meds, but if he doesn't quit I'm going to steal a bus and head to my cabin on the lake as I coming to my wits end! I never thought I would say or think that. Sorry DH, I really do love you, but each day it gets harder. Sorry for the downer sisters its been a long week and it isn't getting any shorter. Love and hugs!

nac said...

I totally agree with Gat, Tizzy we need your wisdom here and your humor. Hugs

2many2care4 said...

Grace welcome, My Dh is 67 and I am 60 married 37 years. Only diagnosed a few months ago but noticed problems starting about a year ago; Tizzy of course we need your input as CM would say you're stuck to us with duct tape.won't say where :>)

Gatfly said...

Tizzy - whatever made you think you are no longer a caregiver????? You help so many folks on this site, with your wisdom gained from caring for your Mother (hugs for the one month) and your humor is greatly appreciated as well!! You BETTER not think of leaving!! And welcome Grace! Oh crum - I was going to go to bed - better do that, hugs!!

charlary said...

Tizzy we wouldn't know what to do without you so you better stay with us Hugs to you

Tizzy said...

Aww, WMMB, don't you go and make me cry now! Thanks for the big hug. No, I just couldn't leave all of you so I'm afraid you're stuck with me!

Mourning said...

Hi Grace. I'm helping to care for my brother who is in the final stage of Alz. and my sister-in-law who has mild dementia. My father, other brother died from Az and my sister was just diagnosed. It is scary and heart breaking but there is also joy and love. Hang in there.

Lostcause said...

Hi Grace, I'm struggling to come to terms with DH's ALZ too. He's still cruising "De Nile". Sometimes I think he will be easier to handle when he's a bit further down the line, but then I read what the others are going through, and I know the worst is yet to come :-(. Guess I shoul be counting my blessings instead of carping......

nac said...

Welcome Grace, I'm 58 Next month I turn 59, ouch, and my DH is 62. We've will be married 40 years next month and it has been quit a ride for all of those years. DH was diagnosed with AZ/D over a year ago but truely believe it started about seven years ago but really went down hill after he lost his job. I'm at home with him all the time now and doing what ever I can do for him. There are a lot of ups and downs with this terrible disease but ya learn to roll with the punches. Ya learn to pick your arguements, mostly learn to smile a lot so they don't get upset with anything. I usually go into the pantry and screem lowly. HUGS

Wantmymomback said...

Tizzy ~ (((Big Hug))) to you today !!!! God Blessed "Us" with you here in our group and personally I'm very happy you've chosen to stay with us......

Tizzy said...

Welcome Grace. I was taking care of my Mom. She passed away 4 weeks ago today. I just can't seem to leave all my friends on this web site so I am still here although I'm no longer a caregiver. You've come to the right place and I'm sure you will get lots of information here from the ones who are caring for a spouse. The journey you and your husband found yourselves on is a long journey with hills and valleys, twists and turns and the road very rocky and bumpy. Don't be afraid because we all take care of each other here and you won't ever get lost or feel all alone. Feel free to vent here. It's okay and we've all done it. You won't be judged. Ever. I'm so glad you found us and I hope you continue to stop in often and post. Tizzy

charlary said...

Hi Grace I am 70 and so is my husband. We have been on this journey about 6 yrs now. This group will help you I promise that. Live one day at a time and when that seems to much break it down to hrs and minutes.

milliefeathers said...

Wecome Grace, I'm 68 and caring for my husband 73( Vascular Dementia ) Its been about 9 years since the start of our Voyage with ALZ/DEM. My husband has extreme stort term memory. It also ran in his family, parents & siblings. He is the last in his family to be on this journy. I pray that it is not handed down to our children. This is a great group and they can help with most questions you have. Welcome again & Hugs Millie

Wantmymomback said...

Hey Chclt ~ hope you are feeling better ~ (((Hugs to you)))

Chcltlvr said...

Hi Grace...and welcome. I'm hoping to be on the mend after a couple of days of tummy troubles. My husband who just turned 65 has been having short-term memory problems since he was in his mid 50's, so I know where you are coming from. I just turned 63. He has now been officially diagnosed and on Aricept (for two years). We were married 43 years this past June. When I first noticed his "weird" behavior I just chalked it up to being overly tired, etc., but in my heart I suspected the reasons for his forgetfulness and agitation. His mother and grandmother both had Alz and each passed away at the age of 66. He is still in denial, telling both our family doctor and his neurologist that he doesn't think he has any problems. His justification is that he can remember things are important to him...NOT! Finding this web site and group has been my greatest salvation. Though we're all traveling through the serious nature of our journey together, we do have fun and laughs each day. So, welcome aboard and don't be afraid to ask any question you might have or just come to vent on those days when you feel like screaming. We're all here to help each other. {{Hugs}}

CaPeachGa said...

Grace, you might want to think about asking your doctor for some meds for your DH's edginess and anxiety, I was about to pull my hair out cause mine was never happy anymore, always looking for things to go wrong and had about an inth of patience with anyone or anything, I was walking on eggshells all the time. After he threatened my son in law and cussed him out over nothing one night, we made a dr appt the next day and were brutally honest about what happened, my DH told the dr he hated being edgy and tense all the time and wanted to do whatever it took to stop it, I was sitting there crying telling the dr that if it didn't stop I was the one that would have to be put on something. The dr prescribed an anti anxiety med for DH. After only a few days on the new med he's a different person as far as his disposition goes. I have my DH back, at least the part that is happy, jokes and loves being around people. He's been on if for about 2 mths now and even remembers to take his pills cause he like being 'better'.

Wantmymomback said...

have to renew that suit of armour ~ wish I knew what to say Grace..hang on, my sistah's will have better suggestions..

Wantmymomback said...

Awww ~ thanks Peach ~ feelin the Love sistahgirl...hold tight...lol...although today I did switch it up a bit and we started out on the race track..only had to drop the caution flag twice so far...we're under green now and still going round and round...I think I just passed Dale Earnhart Jr and Mark Martin....LOL

GraceS said...

OMG this may be exactly what I have been looking for in all of you, thanks you, I am new at this and sometimes think I am going crazy. It is mild now but for 30 years he just been the smartest, highst integrity human I have ever knolwn and now it seems nothing is important to him especially me. He calls me needy if I want a kiss or hug and for anything beyound that well just forget it. He seems to not care about much. Sometimes he says hurtful things that he would never had said befor, I just don't know how to handle it?

Wantmymomback said...

FYI new sistah's ~ don't put emails or phone #'s here ~ if you so desire to do that you want to click on a persons avatar - that will bring you to their profile and under the avatar you'll notice it says something about sending a "HUG" or a "Prayer" ~ click on hug or prayer and you send that individual a more "private" message..

CaPeachGa said...

Throwing my arm across wmmb to hold her in if the straps give way!

Wantmymomback said...

I just say " strap yourselves in sistah's" cause the ride continues. Some days are more intense than others but if your not strapped in tightly your at risk of whiplash...Dang Ride, what ever your preference Roller Coaster or Merry go Round...My head spins can make a tornado look calm....Yee Haa....here we go again...Strap in and Hold on tight.....

honeybeee said...

Grace BINGO I am 54 (55 in October) and my husband is 56(57 in November). My husband has been showing signs of early onset Ad for 11 yrs in December. We have been married for 28 1/2 yrs. So no you are not alone and yes it is hard and we all "listen" to each other, make each other laugh, and are as close as your computer or your phone if you want to share privately.

CaPeachGa said...

Oops I forgot, to list my 'qualifications', I'm 59, until Sept 2nd that is, and my DH is 67, he's the one I take care of. We've been married almost 12 yrs now and the first 8 were the most wonderful of my life, never knew what it was like to be appreciated by your spouse. He spoiled me rotten, now it's my turn to spoil him and look after him and I do it gladly. Don't get me wrong some days I could just wring his neck as you'll see on here, but for the most part, he's my darilin man and I wouldn't trade him for the world, bad memory and moods swings and all!

Wantmymomback said...

Hi Grace and welcome to our awesome group. My DH (dear husband) and I are both 54 and also married 32 yrs this Oct...The difference here is I care for my mom who is now late mod. stage to early late stage AD. I feel it is so much more heartwrenching when this rotten disease strikes a spouse, your best friend whom you planned on enjoying the rest of your lives with. Your both so young and this is so unfortunate and unfair for the both of you. This "is" an awesome group-we consider ourselves "family" here. Read back over many of the posts and you'll see there is alot to be shared that will help you and just when you think your dam is going to burst, there will be someone here that will make you smile and/or laugh til your sides ache. Keep coming back and let us know how it's going for you. There's someone here 24/7 ....Best of Luck to you both and God Bless..(((Big Hug)))!!

RobertaD said...

Hi Grace, my name is Roberta and I'm new to the website. First off Congrats on your anniversary. 32 years is a rare thing now days. We just hit 31 and sometimes I think that is 30years 9 months and 11 days more than I ever dreamed. Its my Mom who is diagnosed and we are tackeling this thing together. I am here if you ever need to talk and please tell yourhusband to hang in there and I wish you both many more.

dog tired some days said...

Grace, my DH is 73 and I am 57, it has been hard, but we hang in there, my DH and I have been married 25 years in Feb. We have you in our prayers

CaPeachGa said...

Hi Grace, welcome, yes there are many of us out here all willing to listen, give support, advise and share a smile, and sometimes a tear. This is a great group to be part of, have a cup of coffee, pull up a chair and tell us more about yourself!

Show all 85 comments

Managing Medications: Does She Mean to Dump Pills in Her Purse?

An anonymous caregiver said...

I'm looking for input on administering medications. My wife hates taking her meds with a passion. Recently I found that she has been "dumping" pills in a change purse that contains a lot of dirty coins. Her confusion is getting worse as the days go by. Maybe she doesn't mean to do it ?? Irish72

from the Moderate Stage Support Group

Marlenews said...

Yay!

Coping in Canada said...

I now have successfully gotten mom to take tylenol pills in a big spoonful of chocolate pudding and it just slides down. Thank you for the help in that. She can take her usual small pills just fine but just can't get the larger ones down. Mom hurt her arm a few days ago and has to take the tylenol for the pain.

Josand said...

Thanks Gatfly, I didn't know if I should say what I do as I thought there would be alot more better ways people in the family would suggest, but now I feel good that I put in my 2 bobs worth.

Gatfly said...

Josand - that is a great idea! the others, as well - but sometimes I think they think you are trying to pull one over on them, adn get suspicious. Just so they don't try and swap pills on you!!! lol

Marlenews said...

I showed my mom how to place the pill in a spoonful of applesauce and voila, she no longer has a problem even with the huge vitamins. Hope this helps.

Mourning said...

It's possible she has trouble swallowing. My sis gets her meds crushed and put in applesauce or pudding. A nurse does it at Nursing Home. Don't know if that would work for you. You could ask her Dr.

Josand said...

Hi, I put my husbands tablets and couple of vitamins tablets for me on the bench where my hubby can see them,I then say lets take our tablets I think he see me taking mine so he's happy to take his.

gilwayw said...

I hand my hubby his meds and a glass of water and wait for him to swallow them. He's very good at taking meds, but I have always remained next to him while he takes them. Hope your situation improves, Irish. She really needs to take those meds rountinely. Good luck to you.................Gillian

Coping in Canada said...

Mom doesn't like taking them either but what I do is say it's doctors orders and then I usually say "would you like a cookie or another snack after you take these?"

Wantmymomback said...

Hi Irish 72, Maybe she doesn't but then again maybe she does especially since she hates taking her meds. Sounds like your going to have to stay with her while she's taking them. Hand them to her with a glass of water and stand there and make sure she swallow's each pill by having her stick her tongue out and showing you it's gone (be sure to look under her tongue as well). She's not going to like this of course so you have to just stand your ground on this one and reassure her your doing it for her own well being...Good Luck !!!!

staryskies said...

i give my mom her pills.i lay them on the kitchen table on a napkin. i tell her to take two at a time and i watch her take them all of them and if he doesnt want to take them i place them in her mouth and give her water to wash them down. stary

Show all 11 comments

Caregiver Wellness: Honor Your Daily Work

CaPeachGa said...

"None of us can do it all. Letting ourselves believe that"“that someone else has it so much more together than we do"“is just a distraction and takes us away from honoring the real work that each of us is doing in our everyday lives, or the real work that we could be doing." Amanda Blake Soule - The Rhythm of Family

from the Moderate Stage Support Group

Gatfly said...

Had to read that one a couple of times - very good. thanks!

charlary said...

yup ditto to that

Annmjensen said...

Wow. That's a great one

Show all 7 comments

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