My wife has had dementia for a few years now. She still knows who I am and remembers everyone else. (Once in a while she seems to not realize I am her husband. Just tells me something about myself as though she was telling a third person) For a variety of reasons I sleep in the bedroom right across the hall from her in our house. She has a tendency to stay up all night in the master bathroom. But then she will call me from her cell phone at 5:00 in the morning and be upset. She is scared because she didn't know where I was. She is upset with me asking why I didn't tell her where I was going be. Plus she keeps thinking several other family members live with us (they don't) and says she got scared because "no one" was here. "Where did everyone go?"

If I try to agree with her, it won't make sense because no one is here. But if I try to gently say its just us that each family member is at their own house, she gets mad and thinks I am lying to her.

I want to care for her as long as I can. But I don't want her to be scared. I am wondering what to do .... ?

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It's understandable that you want to explain to her that your family members are in their own houses but your wife is no longer receptive to reason. The illness has taken away her ability to reason. It's very difficult to interact with someone who is unable to reason in any meaningful way.

Fear and anxiety are common in people with dementia. Often they are tortured by it. Perhaps her doctor can prescribe medication for her that will lessen her fear and anxiety. Maybe medication you can give her at bedtime that will allow her to sleep peacefully through the night.

But when it's 5am and your wife is upset that no one is there reassure her that YOU'RE there with her and that everything is alright. Be calm and soothing.

As far as placing your wife in memory care that has to be up to you. There will probably come a day when you feel as if you can't give her the care she needs, that she needs more supervision than you can humanly provide or is a danger to herself at home. It's at this point when many people enter memory care. It's a personal decision based on several factors that are unique to each situation. It might not be a bad idea to tour some places, meet with some administrators, and get some information together. Then if the time comes you'll be prepared.
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I will tell you what the director of my dad's memory care facility told me. She said it is better to move them while they still have some cognitive ability and are able to establish relationships with the staff and other residents. I was lucky to find an excellent facility for my dad, and I am certain he adapted as well as he did because he was able to interact with the staff. The longer you wait, the harder it will be for your wife to communicate and that could make it harder for her to adapt. As others have suggested, your best course of action is probably to visit potential facilities and talk to the directors.
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justlost63 Jul 2018
Wish i had ur director. The one where my husband is didn’t keep me informed of his health they keep telling me he is better I ask what’s wrong all they would tell me he had 2 strokes well on the day they released him they said 24/7 care and he was bipolar psychotic on the day he was released they had all the paper work ready when I got there. Well I took him home retired early to take care of him(was his only caregiver the Va was suppose to pick up my health insurance and help with expenses for me being his care giver) well everything Wes fine for about 2 weeks and lord I don’t know what happen he called police for them to take him away from me they took him to va hospital. He has always been an aggressive person with his family but he took it another step he was aggressive with an nurse the say he has dementia now and he is still aggressive when I come around they say I am his trigger point. I had to make a decision to let him stay but they are telling me I can bring him home I refuses to they are telling him I want come to get him and the medication he is on keeps him like a zombie and every time they cut back on them he is right back being over aggressive. I wouldn’t have retired so early and lost all my health insurance it be a struggle.
Hi DSG19411954,

With her condition, things aren't going to get better or easier to deal with. As to 'when' to move her into memory care, perhaps you're already feeling it's time - otherwise you may not be asking. It's important that you get your own rest, so I agree with your choice to no longer sleep in the same room.

My husband and I were the primary caregivers of his 93 year old mother with advanced Alzheimer's, until she was hospitalized due to a fatal abdominal cavity tumor. From our experience no matter what we did she often feared she was alone, and that nobody was there for her. On our respite days when we had a caregiver scheduled that person was with her the entire time, yet when we returned home she most often had no recollection that anyone had been there with her; and claimed she was all alone. My point is no matter what you do, or where your wife lives, fear is a typical challenge they deal with.

Given the fact you desire to care for her as long as you can, you're an unselfish person - bless you for that! However, it may not be healthy for you to take on that burden long-term. It's emotionally draining. If she were in memory care, she might have the same fears, but the time you will have with her will be better quality as a husband, rather than also as a caregiver.

Perhaps a way to make the transition would be to take your wife to a memory care center and consider introducing her to the facility by using their daycare events. You may be able to take her there for a luncheon etc., and that may help her to become acquainted.
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Please check out Teepa Snow techniques on YouTube. You’ll find many helpful ideas to ease communication with your wife.
Read the book, “Being Mortal” by Atul Gawande.
Recognize that layers of care can really make a difference. If you are trying to do everything on your own, you will have less ability to do anything well as her needs escalate. Consider help.
Your abilities to cope and manage are diminishing as her needs are increasing.
All the standards of exercise, healthy diet, plenty of water and blessed sleep are necessary to keep you up to the task. You say you want to care for her as long as possibly can but also set an intention to come out on the other side, perhaps a wounded warrior but still in the game.
Recently my cousin who cares for her mother (Parkinson’s and dementia) started giving her CBD oil. She reports a huge improvement in her mom’s functionality that was apparent within days.
I attended a memorial service for a dear friend this past week. She was 87 with Alzheimer’s. She lived alone for longer than some would say she should have in her own home. Then her son moved her into a little home on his property where she lived for 2 1/2 years battling UTIs and being encouraged to eat. She missed her home very much. She went on hospice in Feb and died July 10 at home.
i don’t know if being in memory care makes one less afraid. Not sure how you would know.
It may be the medication they are on and the fact that the family is no longer there for the scary bits that make it appear that the demented are less confused or afraid if that’s the case.
You are important too. You must make decisions that work for you as well as your wife. If that leads to a facility come to peace with it. Seek therapy, join support groups.
You will make the right decision when the time comes.

Edit: Seek the assistance of a certified elder attorney to help you with the Medicaid application to protect you, the community spouse.
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drooney Jul 2018
Excellent advice! GREAT suggestions!
This last answer is a good one. I am a (79) year old male caring for my wife with Alzheimer’s. Like you, we sleep in different beds because she needs a hospital type bed, but we are in the same room. Whether napping in a chair during the day or sleeping at night, she often awakens and will say some variation of “where?”. My answer is “It’s
ok, I’m right here and we’re sleeping”. She immediately goes back to sleep. She just needed the reassurance that she wasn’t alone.
Also, someone else has already said this, but your wife will never any longer be able to understand any type of reasoning. You have to step into their world because they can’t step into yours. If she thinks someone else is around you will never convince her otherwise. It is better to never reason or argue—just a simple “Really, well I hope you enjoyed their visit” or whatever fits the circumstances always works. Agree, never disagree, because what you had to say will be forgotten within the next (30) seconds anyway.
I am blessed with help during the day and my wife sleeps through the night other than the occasional “where?” query.
After much research we , our doctor and I settled on Seroquel twice a day. It does not drug her out at all but does keep her on a very even keel psychologically speaking.
Like your wife, mine doesn’t always remember my name but does always know who I am. That brings a smile to her face and mine and my goal is to keep her at home in familiar surroundings as long as possible.
Helpful Answer (6)

Your wife is typical of the people who would be in memory care. You could start checking out facilities in your area. They will come and do an assessment of your wife.

As her dementia progresses it’s going to be really difficult to care for her at home unless you have lots of good help. It just depends on your situation, financial abilities and so on.
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I did 24/7 care for my husband ( 96 yrs 8 mos) and managed to keep him home until the end. No, I had no inside help - but I do have a sister that did my "perishable" shopping for a couple of years while I did online shopping for everything else.

The last 6 months, he didn't remember I was his wife, that we live alone, that we own the house. He believed there were people coming and going all the time. I just reassured him of the facts in as gentle a way as I could manage. It wasn't important to me if he remembered I was his wife - keeping him calm was important.

I used to go out to mow, 30 minutes at a time, until the day he was searching the back of the house looking for me. I decided the lawn just wasn't as important as his well-being. Had he lived longer, I would have just hired the lawn-mowing or let the grass grow.

The last 2 months of his life, I couldn't get him out of the house. And his legs started giving way and he lost his appetite almost completely - his body was shutting down.
He was ambulatory until the last 3 days when he became bedridden. He went peacefully in his own home.

My advice is to follow your heart. If it was you - what would you have wanted your wife to do?
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First...She may be more comfortable with you sleeping in the room with her.
A lot of times when my Husband sounded anxious I would crawl into bed and hold his hand and he would drift right off to sleep. (I had a hospital bed pushed right up to our king size bed and I don't think he ever realized he was in a different bed)
I was VERY lucky in that once my Husband was in bed he did not get out of bed until the morning. At first when he was more ambulatory he would wait until I got out of the bathroom then later when he needed help getting out of bed he had to wait.
He was pretty much no verbal for the last 7 years of his life. I do not know if he knew who I was I know that he trusted me, I think he knew I was his wife, he would kiss me when I left the house and when I came back.
I did have caregivers that came in so I could get out. My Husband was a Veteran and there was a program through the VA that I was able to use that enabled me to get the caregivers.

To keep her at home or to find a facility all depends on the type of person she is and you are. Will she become violent? Will she be compliant? If she becomes violent and it is a danger to you or her you have no choice. If she is not compliant with what you need to do to care for her again you have no choice.

A move to Memory Care is often better Sooner rather than later as she can more easily adapt, learn her new surroundings.
But the most important thing is when is it best for you. I was often told in my Support Groups...when you ask "when it is time" it is time because you would not be entertaining the thought if you were not ready.
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Justginger1 Jul 2018
Thank you for that, when it’s time answer. I was told to look at least 5 different facilities. Get the PRI done and sent it to all 5 facilities. My issue is we will need regular medicaid for placement. We now are on community Medicaid . Don’t know if I can financially stay in our home if medicaid takes his SS and pension. My SS and small pension will not cover expenses. Apt too small to have live in help.
When my friend, Beth, became incontinent and started to wander, I was told she needed 24 hour care. I started with in-home care but it was too expensive. I finally got both Beth and her husband to move to a memory care apartment for better care at a lower price. I am their DPOA, so they had given me complete authority over their finances and medical care decisions. When Beth became resistant to letting someone clean her up after she soiled herself, they told me to take her to a geri-psych ward in a hospital to find an anti-psychotic medication that would calm her down without doping her up. That took 3 1/2 weeks, but afterwards she was compliant and alert and was able to be cared for until she passed about 4 months later. Her brain was just shutting down and when she could no longer swallow, hospice care was being provided for her. She was comfortable and cared for until she stopped breathing.
All this stuff was new to me as I had never had this kind of responsibility before, but I got good guidance from the AL/MC facility to help me understand what was happening and what I needed to do. I am so thankful I found just the right place for my friends. And perhaps it was easier for me because we were just friends without the same emotional attachments a child would have for a parent, or a wife would have for a spouse.
Her husband continues to live in that same apartment on the memory care floor and he is receiving good care. His short term memory is shot, so he needs guidance throughout the day and they pay attention to his needs. He is a well-educated black man and we joke about being "brothers of another color." It's more than a joke, of course. I am gladly filling this role of being his brother through all this. He is physically healthy at age 92 and hopes to reach 100. I am not young either and am trying to take good care of myself to see this through to the end.
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YYou have already gotten some very good advice, but let me add one more thing by way of exampke. My parents, both in their early 90s, lived in Independent Living not too far from me. I knew that they really needed Assisted Living as mom''s dementia progressed and dad's physical stamina declined. But dad was stubborn and did not want to move to AL believing he could care for mom.
Well, at one point they both got sick! He was not able to care for her or even take her to the doctor. Without my help, well...don't want to think about that.
So, he finally agreed to move to AL.
My point for you is not to wait til it is too late and you can't care for your wife. Perhaps you don't need memory care yet, but AL in a facility that offers memory care when it is needed.
Taka care and good luck.
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