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When I talk to my husband (Alzheimer’s), he is relentless in asking when he will be picked up - and/or insists that I “get him out of there” (the memory care community). The discussions often end in tears.


I have read up extensively on how to handle this. I acknowledge and validate his feelings, tell him I am working on a plan, try to distract him with other topics, photos, etc. He is not able to be distracted from his pleas.


The caregivers affirm that it is often difficult to distract him from packing up his room and waiting for me. He has taken down all photos, pictures, placed his clothes in piles around the room, etc.


I am getting to the point where I dread talking to him - and worry that our visits simply become a depressing and sad event for both of us.


I don’t want him to ever feel like he has been abandoned, and I want to remind him that he is loved. The last two weeks, I have avoided talking to him altogether on Saturday, Sunday and Mondays - and then do the Facetime visits Tuesday-Friday. But the caregivers affirm he still spends the weekend shifting things, convinced that I will be there any time to get him.


How do I help and comfort him, while finding peace with the decision to move him?


Any advice? Thank you.

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Something that worked for me when I had FaceTime calls with Mom in MC was to be prepared with items or photos to show her. I have several of her old toys and dolls and would hold one up to the camera. Every time she would smile and describe who gave it to her, talk about playing with it etc. I was careful not to say "Do you remember" but say "look what I found."

Dementia often erases recent memories but seems to enhance earlier ones. Old pictures were more recognizable to her than new ones of the same people. She often didn’t recognize my brother, who now has thinning white hair, but always knew him from his childhood pictures.

Perhaps if you prepare things to distract your husband your video visits will be less stressful.
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Tifkenjos Jan 2021
Thank you. I actually DO prepare for our zoom visits - I jot down things to talk about... stories to share - and, as you suggested, I often have photos to show him. On our “good days” these help a lot. But, on the days when he gets on the “get me out of here” path, there is zero way to distract him.

But, your suggestion is good - and valuable. I will keep preparing “scripts” and having photos to show him - and will hope that we will get to the point where there are more good visits than bad.
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So sorry you are going through this. It takes time for everyone - you and your loved one - to adjust to new situations. I would decrease the number of Facetime visits to 2 per week at least for now. When you do talk with him try to channel him to discussing happy events from his youth as Pamelac has suggested but expect him to still want you to pick him up. This will probably happen for many months so there is no point of constantly stabbing yourself in the heart (hence limiting the Facetime visits). It may be hard to find a method to comfort him as his reality is no longer your and his mind is somewhat fractured. The man you married would not want you to be conflicted so you may have to distance yourself a bit, hard though that is.
Think hard about the live- in caregiver situation. It works for some people for not for everyone. A live in caregiver needs to sleep, take time off etc. Could you step in easily in these instances? You may have already found your husband the best situation for both of you at this time in your lives.
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Imho, what a difficult quandary. Perhaps you could lessen the number of virtual visits that you do with him - or redirect. Prayers sent to you.
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Cost of MC is more expensive than caregiving at home with a live-in. He’ll get one-on-one care, or 2-on-1 care (you and the caregiver help each other).

I tried the MC option with my husband and experienced the same guilt and sadness. On top of that, I lost a lot of money to the MC. Now, everyone is happier. You should try the live-in caregiver to see if you like it.
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It's heartbreaking when your LO keeps asking to go home. My mom has dementia plus limited mobility, and she did this for the first several months in NH care. After 2 years, she still asks occasionally, but less frantically. They actually suggested I back off on my frequent visits to help her adjust; that also helped save my sanity. Also, I think changing her antidepressant helped. (Note: The change can take several weeks to have an effect.)

I've had the best visits by getting her to talk about herself: what did she do with her childhood friends, was her mom a good cook/what did they eat, her school days, first job, etc. We both can enjoy these visits when I have a list of these "starter" questions to work from. Talking about her long-term memories grounds her in reality for a while and replaces the complaints. I also avoid talk of what's going on outside of the nursing home as it only reminds her of where she is, which fuels the wish to be elsewhere (which you cannot realistically fulfill).

I also agree that a good answer is "when the doctor says it's safe for you to go home," but only say this when your husband brings it up. As for taking him home, please do not try that once you know it's beyond you. I've thought that through many times, but it's just our wishful thinking. Realistically, how could you handle your LO plus a 24-hour caregiver? What if they got sick? What if you got sick? And how long could you handle the care before you wear out?

You know he's as safe and pain-free as he can be with the level of care he's getting. That's the best you can do for him now in this imperfect world. So please go easy on yourself, and God bless.
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disgustedtoo Dec 2020
Good suggestions for topics! Since they are losing the more recent memories, it can work to talk about past memories. As a bonus, you can learn a lot more about your parents and others through these discussions! Definitely stay away from current topics (even we don't want to talk about those!) and learn how to change the subject.
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Having a FaceTime chat 4 times a week is to much. This is not good for you and your husband probably does not remember that he spoke to you yesterday. Cut your visits to twice a week. Give yourself room to breathe, room to have a life without him. You need this. My dad lives in an assisted living facility while my mom lives in Memory Care in the same building. My mom was moved 4 months ago. He was just recently allowed to start visiting again, due to Covid restrictions, they haven’t seen other in a few months. Mom wants to go home. She also has packed up her few belongings, ready to go. Her mood is very stressful for my dad. We’ve discussed it and he will no longer visit or call every day. She doesn’t remember his visits anyway so whether he goes or not doesn’t matter to her. But it’s very hard on him.
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disgustedtoo Dec 2020
It's always hard on the LO without dementia. It is esp hard when we haven't learned what works best for them and us. It's good that your dad was willing to listen to you, hard as it may be for him to stay away. Fewer visits, learning how to redirect, blame someone else for why they stay, keep the time frame for getting out/going home vague, but leave that "door" open a bit, just to let them have a little hope. They aren't going to understand, so we just have to adapt to their world.
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Very Sad.
Licing in a home out of your familiar surroundings is awful, lonely, depressing, ect.

Please put yourself in his shoes and do what you would want done.
Let him live out the rest of his life feeling loved, safe and happy in his own home.

My 96 yr old Dad is in his own home with 24 7 Care.

Please note. If you have to leave him in a home which I pray you won't, make sure you install a camera in his room so you can check in with him any timeday or night and you'll really be able to see what is going on.

I had Nest Caneras installed at my Dad's house and I have had to let a couple Care Givers go.

Everything and everyone is nice but when you're able to watch on a camera, you can see what really goes in znd this us especially true when it's a dementia patient because they can't remember what someone did or what happened to tell you about it.

Prayers

Bring him home if you can and hire a Caregiver.
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disgustedtoo Dec 2020
Maybe that works great for your father. It doesn't work for everyone. OP's profile says her husband is 79, so if she's similar age, it's going to be rough on her, even with help. You don't live with your father, so it isn't the same.

It's also a lot more expensive to hire 24/7 care-givers, maybe they can't afford it. Even with those who can be kept home, "home" isn't always that home they are living in. 9 months after moving to MC, mom forgot her home of 25+ years and was focused on her previous home and her mother. Should I have taken her back to that previous home, kicked the owners out and dug up her mother? What if she drifted even further back in time, to a really old residence, or where she grew up?

Camera in the room *might* be somewhat helpful, esp with lockdowns since we can't visit, but some places don't allow them AND they encourage the residents to join activities, to be engaged, NOT sit alone in their room all day every day. It is one reason I did not get my mother a phone (between dementia and bad hearing, a phone wasn't a good idea, but I also opted out of a TV in her room - I didn't want her sitting in there all day, get out and socialize, join the activities, etc. HINT, again, they are not prisons. Sure, they can't go outside the unit, but they aren't locked in cells either.)

Home and caregivers can be an option, but it doesn't work for everyone. What this man is going through can happen in a facility, but it can also happen in his own previously happy home.
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Hello Tifkenjos -

Please know that you are never alone. Many share your experience. We are thinking of you. Take a bit of everyone’s advise because it is hard to tell what will give you and your husband the peace you deserve. Rest assured you “are” doing the right thing and you “are” doing your best. Be kind to yourself. Find comfort in remembering that when your husband’s brain could comprehend, that you showed him love and compassion, and he knew it. Love, Your New Friend that will continue to think and pray for you. Again, you are NEVER alone.
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Tifkenjos Jan 2021
thank you.
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I know you want to be affirming but ask yourself if letting that talk go on and on is feeding the sorrow. Can you distract his talk? Talk about others, news, or memories. Ask his opinion on things like "I see the town has red flowers at the park, do you like red flowers or would another color be better to you?"
He wants familiar, and being in an unfamiliar place is hard. Try to make the talks about common interests and events.
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There is not a lot you can do, however, tell him you love him and listen. Try to talk about other subjects, the weather and food. Talk about sports or animals.
I had to do this for 3 years. My dad had to live in assisted living until I retired. When I called, he would beg me to pick him up. When I started chatting about the Dodgers or golf, it got better.
Do not ask about how he is doing, talk about yourself or other subjects, it will get better.
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So sorry for the situations both of your father and for you. It's never easy. I guess I'm so pleased my husband didn't do this when I placed him in assisted living. He just looked with wide open eyes and slumped in his chair. Or found a sofa and took a nap.
I wonder if this would help your father. While visiting my husband and watching the other patients after lunch one day, they were all taken to a seating area, like a living room. I think they were awaiting Bingo.
All of a sudden a caregiver gave one woman a moving cat. The lady picked up that cat and hugged and played with its fur and she was so happy. She didn't speak, just kept petting "her" cat. I thought this strange that they would allow pets. The facility had several of these cats and a brand new infant baby as well, that got passed around to different residents to "play" with or "hold the baby", it was wrapped in a swaddling blanket but could be taken out and changed diaper, too..

I asked the caregiver if pets were allowed, her answer, "it's MECHANICAL". The cat wiggles, meows, purs , rolls over and just seems to have a good time with its "part time owner"
I looked it up on Amazon, and sure enough, mechanical pets were listed and they had a variety.
Could your fathers or mothers be helped to stay if they had a mechanical pet? The cost is around $100, but could be a little more, sometimes on sale. It would be something to be busy with, help get more focused in that rather than wanting out of there.
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KatyAdams Dec 2020
This is a good idea to try - they have mechanical dogs, too. Sometimes it just takes the person's attention and love and turns it towards the animal.
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Alzheimer's disease is a terrible disease. It is a very slow terminal illness. My mom had noticeable symptoms for 10 years; the last five were end-stages including wandering. It was very hard work keeping her going. While mom had a good quality of life as I was her sole life support, it nearly destroyed me. My whole life centered around her care for YEARS and YEARS and YEARS. Even before she had noticeable symptoms she had a lot of forgetfulness and started losing interest in doing things, which was part of the disease. Noticeable was when she forgot how to wash clothes, or do the dishes. Ten years later, she died--ironically NOT from Alzheimer's, but the complications of insulin-dependent diabetes, and ongoing kidney disease. Even with blood sugars kept very well kept her A1C averaged about 6.5 meaning well controlled. Still even without Alzheimer's, she would have died of other natural causes. So I did my part--I kept her alive even to the point I had a feeding tube (last resort so she would not die of dehydration)-- and God killed my mom. Mom did real good with the feeding tube and I thought she would live on and on with it. But that feeding tube itself was a LOT of work to keep it flushed and clean. From the moment I woke up all day long it was mom's care. She was 24/7 care. It was hard and very stressful, but I never regretted it. I miss her terribly. Hey mom lived to be 90, and her death was extremely peaceful without a single drop of narcotics or psychotropic and she was on hospice for over two years (I used them like a walk-in clinic for labs and ordering routine labs and they helped with diapers and supplies!). Mom died with perfect skin too. No sores. Nothing.

I carry on. What else can you do with changes? Go on the roof and crack up?

This is a new phase for you, which you have to learn to adapt to. What can I say? That's life. You are going to have to learn to cope -- friends are your best resource.

Taking care of someone with Alzheimer's disease is very hard work and it is back-breaking. I did it myself but I knew what I was doing. She had so many medical conditions aside from Alzheimer's you are better off keeping him in the nursing home.
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May I ask how much you are paying for MC monthly?
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Tifkenjos Jan 2021
That’s a scary question. We sold our house a couple of years ago, and started renting. I am spending through the proceeds from the sale, and am hoping to get a job myself in the foreseeable future.

Still, not knowing how long this expense will continue is daunting.

I have talked to an elder law attorney about the possibility of qualifying him for financial aid, but have not found a workable solution yet.
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I know this is painful. I remind my wife that she is a valued "employee" of the facility and they need her. Is it true? No. Does it give her a sense of purpose? Yes. Does it make things a little easier? For now, yes. I have heard it said They can't enter your world (reality), you have to try to enter their world.
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dear tifkenjos

Yes, I know how you feel. My LO did exactly the same thing when he first went into MC. There’s no easy answer but it does get better over time. I found that too much communication did not help the situation. I’m assuming he’s in memory care. Take comfort in knowing he is being cared for by a team of professional people. Is he in the facility permanently? Does he have dementia?
I send you my best wishes to you.
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Tifkenjos Jan 2021
thank you. Yes, he has Alzheimer’s dementia. Unless I “chicken out” or run out of funds, he is there permanently. I have been told he is entering the severe stage. Even most of his long-term memories are gone at this point. He does not know family members except me (and has not recognized me a few times).
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My mother did this relentlessly after she and dad moved to AL. He had cardiac issues and was sick but lucid (mostly.) She has dementia, with no executive function or ability to remember anything (not even a comment from 30 seconds ago.)

When they moved to AL, mom thought it was a "nice hotel," and kept packing up perishable groceries (left unrefrigerated for hours or overnight!) Wanted to go "home." She also packed random clothing and personal items. Always different "stuff" each time. Put all that in plastic garbage bags. Dad and we kept telling her she was "home."

After dad passed away, 6 months into the AL residency, she was moved immediately to memory care. She kept packing stuff up to "go home," sporadically, but it tapered off eventually. Once she got comfortable with the routine, the caregivers, the other residents...it seemed that the packing activity ceased. She is now "home."
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It's never 'easy' to move your husband into a Memory Care ALF, let's face it.

It's a difficult transition for both of you, having him living in a Memory Care ALF & you living alone at home. You're both trying to adjust and there's a lot of trial & error involved. Difficult phone calls should be limited; I was calling my mother in MC 2x a day until one day my daughter said, 'Mom, are you crazy or what?' That kind of woke me up to the fact that I was getting ulcers myself from dreading those phone calls and guess what? They weren't doing my mother any good either, truthfully! Who, exactly, is benefitting from these phone calls to your DH?

What I find with my mother in general, is that if there is someone present in the room with her (a caregiver) during a call or a window visit, they're much more pleasant. It's when she has me 'alone' that the griping and complaining and carrying on get to a fevered pitch. Can you arrange to have a CG present during your Factime visits, if it's not happening already? It may help, it may not.

Part of dementia & ALZ is packing up and getting ready to 'go home', for lots of people, and they tend to do that for AGES, even after they've 'acclimated' to their new surroundings. It goes with the territory and with the disease itself. When I worked in a Memory Care AL, we had a resident who packed her bags EVERY single day, put her coat on, and waited in the chairs by the lobby doors (which residents were unable to exit through). She'd sometimes sit there for hours, humming or singing, until a caregiver came by to tell her it was lunch or dinner time. Then she'd leave and repeat the cycle the following day. She was a resident of this MC for several years at the time.

You can tell your husband that he can come home 'when the doctor says it's ok to do so' perhaps in the Spring some time. That puts off the matter for quite a few months, and gives you an 'answer' to his endless question about coming home. Therapeutic fibs & white lies are 100% necessary when dealing with AD and dementia, because simple reasoning with our loved ones NEVER works anymore.

My suggestion to you is to find a routine that works for YOU as well as for HIM. We tend to neglect ourselves when caring for a loved one with dementia, thinking they are the only important people b/c they have a disease, poor things. That's not true. Many, many of US wind up dying BEFORE they do............so please don't be a statistic yourself! In fact, I get lots of texts from my cousin telling me what a 'poor thing' my 94 y/o mother is, when in reality, SHE is the one who is making MY life a torture chamber! Gotta love the armchair critics and those who conveniently 'forget' there is more than ONE person involved with these situations!

Wishing you the best of luck!
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psuskind1 Dec 2020
Your comments were spot on. It’s an adjustment and if you want to survive, sometimes you have to brace yourself for the packing, the tears, and the abusive phone calls.
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Those calls do sound quite difficult. It appears that MANY ALZ are certain they are going "home". So while not unusual, still hard.

I think it's good that you are giving yourself a few days off from the facetimes. Too much stress. I would think about cutting back even more, as suggested above, to give him more time to be there and in the moment instead of waiting for you to call so he can tell you to come get him.

He needs to be where he is and it takes time to adjust.

I like the scapegoat idea too. "I'm sorry honey but the doctor said you are going to need to stay there for awhile."

Or maybe make up some malady for yourself that makes it impossible/unsafe for you to take care of him?
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Tifkenjos Jan 2021
thank you!

Actually, I have health issues myself. I actually moved him to memory care the day before I went into the hospital for surgery. So I have used “me” as an excuse for not being able to bring him home.

He does not recognize or acknowledge that he is unable to stay home by himself - so that creates a problem.

Your thoughts are much appreciated.
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My LO ultimately adjusted quite well to her surroundings but it took longer than a month, in fact about 4-5 months.
She also received an excellent psychiatric evaluation at her AL and added a second calming medication to her previous antidepressant.

It was the worst 4 months FOR ME in all the time I’d taken care of her. For her? Not as bad, I don’t think, although she did have periods of distress.

Hardest thing for me was to remain very level and calm when I was with her and cry after I left. And cry I did.

Can you use a benevolent scapegoat to shift the blame away from yourself ?

Blame his doctor?

For yourself, can you allow yourself to be a little more relaxed about his packing? If it’s not a problem for his caregivers, and he seems to be relatively peaceful doing it, can you think of it as part of his adjustment?

I wonder if an every other day schedule for brief face visits might be helpful too.

He is in a place of safety and structure because he needed more care than he was able to receive at home. It took courage for you to place him. In time, he will enjoy your visits but also be comfortable when you leave him.

It will happen!
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I'm sure that has to be heartbreaking for you to witness, when all you are wanting is for your husband to be safe and well cared for. Perhaps you will need to cut back on your face visits to just twice a week, until he gets settled in more. Then over time when he seems to have adjusted more, you can up the visits if you want. It will keep you both from being upset for days in a row. Wishing you the best.
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