My wife has a knack for starting new habits, she's had dementia for 4 or 5 years now. She started one recently where when she doesn't get her way she starts breathing hard as she follows you around. She has another where when it's hot outside I will open some windows and she will eventually have them all closed within the hour. These are annoying but I roll with them.
Her daughter and 25 year old grandson are now living with us, and helping me with her care. My wife used to shop a lot, but that ended when she totaled the car a few years back. I had no idea at that time that her illness was that bad. I knew something was going on but not to what extent. She was intercepting the mail and hiding the letters sent home explaining she shouldn't be driving.
That curbed her taste for wanting to go shopping on a daily basis, but she got that taste back when she started going everywhere her daughter or son went. Then the COVID-19 came along and that shopping time got cut way back. But now it has gotten to the point where every day is a day of arguments.
I wake up to hearing arguing routinely. She has no clue about a virus or the fact it has killed thousands. She wants to go to the store or anywhere and she will get physical, pushing, cursing, and not giving up. She knows what she wants and if we just take her. Someone eventually gives in, we go, or they go, get a couple of items we need and she gets a candy bar. As soon as we get in the house it starts all over again.
I try to get across to her the risks she is putting all of us in. But of course it does not register. If you wake up in our house in a good mood, it gets squelched within minutes. There are no habits in her tool box that are positive. I keep trying to keep her at home, but it's so hard. I mean it's really difficult, but I don't want to give up.
I watched a show on 60 minutes once and they showed a couple where the wife had dementia. They started this when she was first diagnosed and they went back to check on her once a year to show the progression of her illness. Every year you could see the progress and it was extreme. I think they did this for 5 or 6 years and the last year she was barely reacting to their touch, voice, she was not there anymore. During the previous years he was always jovial and hanging in there. But in that last visit you could see a big change in him also, spent. They asked him , if you could do this again would you do anything different and he said yes, I would take her to a home a lot sooner.
He said it was a big mistake for both of them. For his health and for her well being , as he couldn't give her the type of care she could have gotten from trained nurses and a facility that was built for what his wife needed. Am I neglecting my wifes needs and my mind by trying to take care of her myself?

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"Am I neglecting my wifes needs and my mind by trying to take care of her myself?"

I understand your doubt, and feel your pain. It's one of the hardest decisions one has to make in life, I think. The only help I can offer is this: sometimes we put ouserselves in a corner with impossible decisions between black and white while there could be a "grey" solution which could work much better... in this case, I think that your bottom-line need is to have some professional help. This doesn't necessarily have to be a home. As soon as the situation allows this ( for COVID) get some professional help at home, at least for a few hours a day. This has really, really helped me in the past. At all levels.

Wishing you both the very best
Helpful Answer (10)
Beatty May 2020
I just love your suggestion of a 'grey' solution! So many things in life are a progression, rather than a yes or no.
It is time to place her, IMHO. You cannot do this by yourself any longer. You have your daughter and grandson there now to help. How long do you want them to do this? It will become very hard on your daughter and especially the grandson. They should be living their lives building and planning their careers and future. Many times on this forum we read about family relationships becoming strained and downright dysfunctional because of the care needs of a loved one.

The earlier your wife is placed the easier it will be for everyone to adjust to the new living situation. We waited too long with my mom, she had a very hard time, several psych evaluations. Eventually was kicked out because of her behaviors and moved to a much smaller care home. Worked better for mom, care was better, lower caregiver\resident ratio. Homier and cheaper.
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ShellDawn May 2020
My husband spent many many hours taking care of his mother who had dementia. He shared time with 1 sibling taking care of her around the clock for about 7 years with some paid help along the way. Then for 5 years with some paid help he cared for his sister who also ended up with dementia and she was able to stay in her home. Then my mother had a rare type of dementia and we were able to keep her in her home with my dad and help from siblings and some outside paid help eventually. My children (grown adults now) have had some pretty special time with these family members and not one of us would change what we did for them. It has really helped to make them some pretty special people. We have family on both sides that helped and some that would not/could not do it. And thats ok, we are all made different. We made our choice. I just wish I had this site when we were going through it all.
I had a loved one placed two weeks ago. The virus isn’t an issue at his facility. They have a separate unit and staff dedicated to just that unit, along with separate meal service and cleaning. My loved one has done well and the stress to the family has been dramatically decreased.
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My Mom was in her last year with us when I placed her in an AL. She had no problem adjusting. We kept telling her it was her new apartment. She had more freedom there than at my split level house. She could
walk around the facility all day if she wanted. The had couches and chairs all along the hall she could sit and relax. More than once we found her shoes neatly put beside one of the chairs.

I overheard a conversation with 2 aides about a man who had just been brought in by family. All he wanted to do was escape. He was agitated every time I was there. The aide said to the other "They waited too long". I understood what they meant. If the person enters a facility in the early stages, they are more prone to except the facility as "home" in the later stages.
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BlueMoon22, by giving in, your wife is "winning" so she will continue to act out to get her way.... hey it works. Time to stop it from working.

And time to bring out the "therapeutic fibs". This is something your daughter and grandson also need to learn.

Next time your wife wants to go shopping just tell her "the road is being torn up", "the stores are closed, power failure", or whatever you think she would believe. With dementia, she will forgot those fibs, you can keep using them over and over.

Another thing, where is your wife getting the money to buy things?
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Sounds like your wife is often in 'Emerald' stage: on the go, with a purpose, considers herself independant... This must be exhausting for you.

Have you read any info by Teepa Snow? (Dementia expert). She has some good YouTube's on this stage & on redirecting behaviour too.

My Mom loves going to the shops too & she does NOT like changes to routine or being told no. (I don't live there but it's exhausting even visiting!) My folks prepare the shopping list together which takes time but it's a gift to her - she takes a long time over the list & it gives her control & meets her need to be useful. Their list has moved online so lots of scrolling, looking at items, brand, size, flavour etc.

I'm wondering if there are any home tasks you could replace going shopping with? (Or at least stall). Re-sorting the tins in the cupbourd? Looking though the recipe books or store cataogues? I'm thinking of kitchen tasks that 'must' be done before we can go shopping.

It's hard to guess as I don't know her interests, if you find what she likes it will be better eg some people may love picking & arranging flowers but others would hate it.

A daily routine may help too. Now it's time for... no, can't go shopping right now - it's time for... lunch/music/relax time/walk outside/jigsaw puzzle/something! Shopping is XXtime or XXday.

Think about Arwen's suggestion of some home help too. Good wishes.
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BarbBrooklyn May 2020
Just looked up your reference to Emeralds. Teepa Snow's brilliance is amazing!
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At this point in time it is really tough to consider placing her in a facility...because the risk to her in one of those is greater than at home. Unless you have the big bucks to place her in one of the best. The corporate run homes are a disaster. Look on theMedicaid web site.....most of them have many warnings about their poor infection control. Even the so called better ones. And with hospitals send sick patients back to the homes besides!!!

so, your situation is especially tough. It isn’t fair to you or your daughter and grandson to live in this situation, much less having every day ruined by her.

i think the temporary solution (till coronavirus is year?) is to medicate her. Talk to the doctor about this. See if you can find something that will calm her down without turning her into a zombie. Just till there is a vaccine or we reach herd immunity (let’s all pray that isn’t the solution!!!!).
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Frances73 May 2020
Please don’t damn all corporate run facilities. My mother was in a small AL chain, just 5 homes, and got excellent care. She is now in a SNC that is part of a slightly larger group and again, we have no complaints about her care.
My mother has lived with my YB for 22 years now. A decision he deeply regrets. We lost daddy 16 years ago. For a few years, mother was able to take care of herself, but now is incapable of bathing herself, doing any cleaning (won't allow anyone to come in and clean) meals are slapdash affairs--basically, if you don't live with her, you REALLY notice the slide into dementia.

YB won't ever move her to any kind of NH, yet refuses to give her a lot of the basic things--like cleaning service or a 2 day week aide so she can get a shower and have some help with simple meal prep.

She refers to him as her jailer. It used to be a joke, but it's really not. She's lonely, depressed and although she does love her little apartment, it's really, really grimy and needs a good deep clean.

We've had ample opportunities to move her to an ALF with daily activities and excursions--but YB always yells the loudest and so she winds up back home. And he complains endlessly about her.

She would have loved and active ALF with people to talk to and things to do. Now, unless R feels like taking her somewhere, she goes nowhere.

So very sad. That moment when the change could have been made came and went--several times. Nothing to do now but ride it out.
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dogparkmomma May 2020
Even if he is POA, That only means, he needs to act in her interests as she would want. What he is doing to her sounds like neglect. His attachment to her may be attachment to her money. If she is competent, she can request placement and you can help her. He is not owed any consideration for the years he spent with her. I would consult an attorney. Too bad if he yells. This is not fair to her.
Dementia normally reaches a point, eventually, where in-home care becomes impossible. The question is, when do you place your wife in a Memory Care ALF? My suggestion is to go tour some and find one that suits her needs best. Once you place her, she's safe and secure, and you get some semblance of YOUR life back. This is a disease that affects EVERYONE, not just her. People don't seem to realize that and just focus on the 'poor' person who's suffering the disease. What about the spouse who's doing the care giving? What about the children? What about when she becomes incontinent and stays up all night playing in her own feces and ripping off her Depends, if she's even willing to wear them? Are you prepared and willing to deal with THAT level of care? Because that's how dementia progresses, as a rule. Definitely watch the Teepa Snow videos........and you'll get glimpse of your default future and hers. You can try medication, you can try diversion, you can try a myriad of different things right now to talk your wife out of whatever she's insisting upon at the moment ie: shopping. But something else will take its place; some other issue or situation that requires your immediate attention and intervention. That's the nature of the beast with this ugly disease.

So it all comes back to the same decision: do you place her and when? I worked in a Memory Care ALF for 7 months as a front desk receptionist before COVID19 wreaked havoc with all of our lives. I met daily with husbands and wives who had placed their spouse in our care; they'd come visit daily, bringing small gifts and to just spend time with their loved one. They made it work; they had their OWN lives AND were able to feel secure with the knowledge that their spouse was being properly cared for by a 24/7 team of carers. They were also provided with socialization that was not available at home; entertainment and activities specifically designed for them, another perk not many think of. They were bathed and groomed and fed 3 meals and 3 snacks a day. A Memory Care ALF is not the 'prison' or the house of horrors many think it is. In fact, it's a win-win situation for all involved.

Best of luck as you navigate your way through this maze of difficult decisions. Whatever you do, don't let 'guilt' guide you. Do what's right for ALL involved!
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You are a hero for taking care of your wife with dementia. But it's a job for a team of experts as it gets worse. Think about putting her into a memory care facility. The transition may be difficult for her, but you could lose your own quality of life if you don't and she may not be better off for it. With coronavirus, you have to choose a facility that can handle the extra testing and protections needed during the outbreak. Good luck to you!
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