Another dementia thread, sorry

[saraha]

My MIL has been diagnosed with dementia and just came home last week from a week long stay in a facility for becoming violent and unmanageable. Everyone agrees that she is not to be left alone, mostly because the things that made her become violent are still in play (she is hard of hearing which is playing into the idea that everyone is against her, plotting, paranoia) that has not changed, she just has a longer fuse, managing her company manners better.
 

I have no idea how she is treating fil but I overHeard them arguing when he called today to see if someone was available to sit with her while he baled hay. She was talking so mean. On the one hand, I’ve been doing a lot of research and understand the motivation behind the anger, but at the same time it is reality and leaving her alone is not an option. Fil was outside crying when I got there.  She tried to nicely convince me that she didn’t need a babysitter At first, Then I distracted her showing her pictures on my phone. Once we ran out of distractions, that’s when the vitriol came out. Now, I’ve already grieved her, but Fil has not and if she is saying these things to me, I can only imagine what she is saying to him. 
dh thinks it’s time they find someone not family to come in and give him breaks, but fil doesn’t want someone, and I think it’s because he knows she will throw a fit and doesn’t want that. But dh and I know he needs a break. She won’t let him talk on the phone or to anyone one on one so no one can get a straight answer to how things are really going or give him a chance to vent. When they were over here baling yesterday, she was fine as long as she could see him and wanted to skip dinner and go home as soon as they were done, but we convinced her to eat here because there was nothing ready at home. Today they were baling at a place she couldn’t go, thus needing someone to stay and she did not like that.

I guess what I need advice on is how to get fil to accept help and what to do if he finally does and she is uncooperative, or worse, mean to whoever they get.

ugh, thanks 

[mommyoffive]

I am so sorry.  I don't really have any real life experience. 

Is your MIL on any meds that maybe would maybe help with her not becoming violent?  Kind of keep her calm?  

Your FIL does need help.  I feel like it is so touchy with her reactions and not letting him talk to anyone.  He needs to be in a support group of talking to someone to help him process and deal with this too.  

Could you maybe hire someone to come and in and help that wasn't there to help her?  Like you tell her that this person is there to clean or something like that?  Kind of ease into it.

[Jean in Newcastle]

The anger with dementia isn't only from anger at the circumstances.  It's a personality change that can come with the diseased brain.  I do think that having a stranger come in might help - not because it will keep her on company manners (at some point she will not be able to choose to do that) but because a stranger can handle it without taking it personally. 

[Laura Corin]

4 hours ago, Jean in Newcastle said:

I do think that having a stranger come in might help - not because it will keep her on company manners (at some point she will not be able to choose to do that) but because a stranger can handle it without taking it personally. 

Yes. My mother does not have dementia but when she moved into a care home, all the things that she had refused to let family do suddenly became okay for paid helpers to carry out. Partly I think she felt less threatened - the helpers were not 'taking over' - partly the staff were able to gently insist because they were not emotionally involved.

[Carrie12345]

I’m so sorry.

Are there any options to help with her hearing? I know that’s not the primary issue, but you mentioned it as a contributing issue.  My grandmother had vision problems pre-memory issues, and putting her through another surgery during her decline was a VERY difficult and complicated decision for my family members, but it helped a lot with her overall outlook (ugh, what a pun!) while it lasted. 

[Pawz4me]

It has seemed to me that most families dealing with dementia have trouble getting either the patient or the main caregiver--or both--to accept outside help. I'm guessing there are a number of reasons for that. But in every case I've known both the immediate caregiver(s) and the patient have been better off with outside help. Along the lines of what @mommyoffivesaid, I've known people who have eased into it or somehow "tricked" the patient (and main caregiver if needed) into accepting help. One family told the person that the helper was in desperate need of earning some extra money, and that by letting her come they were helping her out. Whatever works.

[Laura Corin]

8 minutes ago, Pawz4me said:

It has seemed to me that most families dealing with dementia have trouble getting either the patient or the main caregiver--or both--to accept outside help. I'm guessing there are a number of reasons for that. But in every case I've known both the immediate caregiver(s) and the patient have been better off with outside help. Along the lines of what @mommyoffivesaid, I've known people who have eased into it or somehow "tricked" the patient (and main caregiver if needed) into accepting help. One family told the person that the helper was in desperate need of earning some extra money, and that by letting her come they were helping her out. Whatever works.

It's difficult, because 'tricking' can feed into paranoia.  This article is pertinent:

https://www.theguardian.com/commentisfree/2018/jul/01/katharine-whitehorn-dementia-alzheimers

[Scarlett]

My FIL died October after  a long battle with Alzheimers. My MIL has 7 kids and several times they had at least 5 of them in a family meeting with her attempting to get her to accept reality and outside help.  It was difficult.  He was a mess.  Mean, violent  etc.  we were afraid he would kill her either outright or from the stress.  She did finally accept a lot of outside help ( money was not an issue which helped) but I would say only an almost adequate amount for the last year.  
 

She was here visiting us a few weeks back and told me she had not told us ( the kids) half of what went on because she knew we would have made her put him in a nursing home.  
 

So all of that to say, all you can do is what you can  do.  You can not ‘make’ FIL do anything in regards to her care.  The best you can do is gentle and kind suggestions and family meetings and reasonings.  
 

Can doctors give her meds to calm her?  MIL also resisted that because she said it made him into a zombie.  We did not care because we wanted her safe!  
 

It is hard.  Hugs to you.  

[Katy]

Frankly I noticed that outside help or a CNA will likely make a patient more relaxed.  The outside help doesn’t have memories of the person before the diagnosis so it’s so much easier to remain emotionally neutral. 

Also, outside help experienced with dementia is likely to know little tricks to get the patient into a good mood.  MIL won’t remember why she’s in a good mood, but she’ll be much more agreeable if someone has slipped her a piece of her favorite candy, wrapped her in her favorite fuzzy blanket, or talked to her about her favorite hobby (or preferably all 3).  Keep in mind it may take several days for even a gifted helper to figure out all of MIL’s triggers (positive snd negative).

[Danae]

10 hours ago, saraha said:

 

I guess what I need advice on is how to get fil to accept help and what to do if he finally does and she is uncooperative, or worse, mean to whoever they get.

ugh, thanks 

She’s going to be uncooperative and mean. You have to accept that. A caregiver who is experienced with people with dementia will expect that, and it will be okay.  A person with pneumonia has trouble breathing, a person with this form of dementia has trouble being polite.  It’s nothing for you or your father in law to be embarrassed about.

[mlktwins]

I was not there to witness any of this, but my dad's sweet, soft-spoken mom became a whole different person with dementia and Alzheimer's.  She was very verbally abusive to my grandfather and to caregivers.  At some point she was beating my grandfather and he had the bruises to show for it.  He finally had to put her in a home.  It was very, very sad.  I actually did not know the story, but I took over my dad's care a few years ago and he has short-term memory issues.  I asked dad's younger brother (10 years younger) about each of his parent's health history and what their cause of death was and I heard the whole story.

I'm very sorry you all are going through this.

 

[saraha]

2 hours ago, Carrie12345 said:

I’m so sorry.

Are there any options to help with her hearing? I know that’s not the primary issue, but you mentioned it as a contributing issue.  My grandmother had vision problems pre-memory issues, and putting her through another surgery during her decline was a VERY difficult and complicated decision for my family members, but it helped a lot with her overall outlook (ugh, what a pun!) while it lasted. 

She is on her fourth set of hearing aids in 2 years, trying different brands, kinds. I'm not sure how many more options she has. I do know that her hearing has been a battle for a long time, never getting it to where it suit her even before her decline. It is definitely a contributing issue, if she doesn't understand what people are saying, she automatically goes to "they are plotting against me" I'm also not sure just how "bad" these hearing aids are because most of the time she seems to hear fine, so I don't know if there is really a problem with them or if there just a problem with them in her reality.

10 hours ago, mommyoffive said:

I am so sorry.  I don't really have any real life experience. 

Is your MIL on any meds that maybe would maybe help with her not becoming violent?  Kind of keep her calm?  

Your FIL does need help.  I feel like it is so touchy with her reactions and not letting him talk to anyone.  He needs to be in a support group of talking to someone to help him process and deal with this too.  

Could you maybe hire someone to come and in and help that wasn't there to help her?  Like you tell her that this person is there to clean or something like that?  Kind of ease into it.

She was on an anti-anxiety medicine before she went for her week "away" and now she is also on Risperdol too. My BIL is the one managing her medications so that is all the info I have about that.

I can see that any sitting with her during the day, if he needs it, is going to probably fall on me as I am the only one without a full time job outside the house. I am comfortable with that right now because her anger and words don't get to me like I think they would dh or his sister. I just am worried about FIL. I can totally see him being like the other caregivers upthread and not letting anyone outside help and just taking the brunt of her anger. He is so sweet to her and loves her dearly, but she also pushes his buttons. I bought him a copy of The 36 hour day (which I have been pouring over since she went away) but he says she won't let him read it. She wants all of his attention on her 24/7. She won't even take naps during the day and she sleeps less than he does, so he can't read it at night.

Tuesday was supposed to be the first night since she has been home for us to go up and clean. Because of the baling up at our house, she stayed with us while they were baling and then ate dinner over here and we skipped cleaning.  I really want to figure out a different way to do this because I don't want any of us in the position we were in when she went to the e r last time. I don't want the kids there while she is sundowning.  I could go do it by myself during the day and tried to do some things yesterday while I was with her, but she didn't want me to. I am going to suggest to FIL that we try to find a time where I can come during the day on the same day during the week and maybe that will work.  She didn't mind when it was the kids doing the bulk of the cleaning, but for reasons of her own, she doesn't want me to do it. Maybe this could be the in for an outside worker. Once upon a time when MIL worked full time they had someone that came in to clean.

Ugh, I don't know, I just feel so helpless.

[Scarlett]

18 minutes ago, saraha said:

She is on her fourth set of hearing aids in 2 years, trying different brands, kinds. I'm not sure how many more options she has. I do know that her hearing has been a battle for a long time, never getting it to where it suit her even before her decline. It is definitely a contributing issue, if she doesn't understand what people are saying, she automatically goes to "they are plotting against me" I'm also not sure just how "bad" these hearing aids are because most of the time she seems to hear fine, so I don't know if there is really a problem with them or if there just a problem with them in her reality.

She was on an anti-anxiety medicine before she went for her week "away" and now she is also on Risperdol too. My BIL is the one managing her medications so that is all the info I have about that.

I can see that any sitting with her during the day, if he needs it, is going to probably fall on me as I am the only one without a full time job outside the house. I am comfortable with that right now because her anger and words don't get to me like I think they would dh or his sister. I just am worried about FIL. I can totally see him being like the other caregivers upthread and not letting anyone outside help and just taking the brunt of her anger. He is so sweet to her and loves her dearly, but she also pushes his buttons. I bought him a copy of The 36 hour day (which I have been pouring over since she went away) but he says she won't let him read it. She wants all of his attention on her 24/7. She won't even take naps during the day and she sleeps less than he does, so he can't read it at night.

Tuesday was supposed to be the first night since she has been home for us to go up and clean. Because of the baling up at our house, she stayed with us while they were baling and then ate dinner over here and we skipped cleaning.  I really want to figure out a different way to do this because I don't want any of us in the position we were in when she went to the e r last time. I don't want the kids there while she is sundowning.  I could go do it by myself during the day and tried to do some things yesterday while I was with her, but she didn't want me to. I am going to suggest to FIL that we try to find a time where I can come during the day on the same day during the week and maybe that will work.  She didn't mind when it was the kids doing the bulk of the cleaning, but for reasons of her own, she doesn't want me to do it. Maybe this could be the in for an outside worker. Once upon a time when MIL worked full time they had someone that came in to clean.

Ugh, I don't know, I just feel so helpless.

I am so sorry.  It is just something everyone has to get through.  She sounds more demanding than my FIL was!  He would at least watch TV and let MIL do a few things around the house.  There was a period when he was at the worst....where he was declining mentally but still mobile.  He would take the car and leave....we had to be VERY stern with MIL that she could not allow that.  One time he took the car and we did not know where he was for several hours.  He got about 2 hours away and a kind soul in McDonalds knew something was 'off' and they called police and thankfully he had a bracelet on to call MIL.  So at 10 at night my SIL is driving MIL to retrieve him. He said he was trying to go 'home'.  We think California, but that is about 2000K miles!

After that she did hide the keys and he did not take that well at all. One day he went to the vehicle and violently opened and slammed all of the doors screaming that he wanted his keys. Eventually that phase passed because he became less and less mobile and once he was bed ridden things were much easier.  His anger subsided too.  The last night when the hospice nurse told MIL it was the end....she called in an elder from their congregation to pray with him.  When MIL walked in the room FIL said, 'there's my baby.'  And those were his final words.  

Its tough.  I am so sorry.  

[fairfarmhand]

2 hours ago, Danae said:

She’s going to be uncooperative and mean. You have to accept that. A caregiver who is experienced with people with dementia will expect that, and it will be okay.  A person with pneumonia has trouble breathing, a person with this form of dementia has trouble being polite.  It’s nothing for you or your father in law to be embarrassed about.

There is a grief for family members knowing that "she's not who she used to be." and that's brutal to stare in the face day after day and not be able to process it. Caregivers have no memories of the sweet woman she used to be (though they acknowledge that those with dementia do have lovely pasts) and are not personally hurt or connected to that other person.

You guys really do need a helper. And it's best to start ASAP because it takes time to find the right one and you don't want to be searching in desperation when FIL is in the hospital with some other sort of illness (because caregivers get sick, very sick when they don't get breaks.) 

Can your dh frame it to his father as "We know you want to keep mom at home as long as possible, so can we get help for you 3 days a week so that you can keep her here as long as you can? Your doing it 24/7 is not going to work long term because you will get sick." So if you can go sit for a day a week and there's a helper 3 days a week, that would be an immense relief. 

Also, my friend whose father has dementia has an adult day care center where he goes each day while they're at work. 

[Scarlett]

19 minutes ago, fairfarmhand said:

There is a grief for family members knowing that "she's not who she used to be." and that's brutal to stare in the face day after day and not be able to process it. Caregivers have no memories of the sweet woman she used to be (though they acknowledge that those with dementia do have lovely pasts) and are not personally hurt or connected to that other person.

You guys really do need a helper. And it's best to start ASAP because it takes time to find the right one and you don't want to be searching in desperation when FIL is in the hospital with some other sort of illness (because caregivers get sick, very sick when they don't get breaks.) 

Can your dh frame it to his father as "We know you want to keep mom at home as long as possible, so can we get help for you 3 days a week so that you can keep her here as long as you can? Your doing it 24/7 is not going to work long term because you will get sick." So if you can go sit for a day a week and there's a helper 3 days a week, that would be an immense relief. 

Also, my friend whose father has dementia has an adult day care center where he goes each day while they're at work. 

Excellent phrasing!

[Katy]

1 hour ago, saraha said:

She is on her fourth set of hearing aids in 2 years, trying different brands, kinds. I'm not sure how many more options she has. I do know that her hearing has been a battle for a long time, never getting it to where it suit her even before her decline. It is definitely a contributing issue, if she doesn't understand what people are saying, she automatically goes to "they are plotting against me" I'm also not sure just how "bad" these hearing aids are because most of the time she seems to hear fine, so I don't know if there is really a problem with them or if there just a problem with them in her reality.

She was on an anti-anxiety medicine before she went for her week "away" and now she is also on Risperdol too. My BIL is the one managing her medications so that is all the info I have about that.

I can see that any sitting with her during the day, if he needs it, is going to probably fall on me as I am the only one without a full time job outside the house. I am comfortable with that right now because her anger and words don't get to me like I think they would dh or his sister. I just am worried about FIL. I can totally see him being like the other caregivers upthread and not letting anyone outside help and just taking the brunt of her anger. He is so sweet to her and loves her dearly, but she also pushes his buttons. I bought him a copy of The 36 hour day (which I have been pouring over since she went away) but he says she won't let him read it. She wants all of his attention on her 24/7. She won't even take naps during the day and she sleeps less than he does, so he can't read it at night.

Tuesday was supposed to be the first night since she has been home for us to go up and clean. Because of the baling up at our house, she stayed with us while they were baling and then ate dinner over here and we skipped cleaning.  I really want to figure out a different way to do this because I don't want any of us in the position we were in when she went to the e r last time. I don't want the kids there while she is sundowning.  I could go do it by myself during the day and tried to do some things yesterday while I was with her, but she didn't want me to. I am going to suggest to FIL that we try to find a time where I can come during the day on the same day during the week and maybe that will work.  She didn't mind when it was the kids doing the bulk of the cleaning, but for reasons of her own, she doesn't want me to do it. Maybe this could be the in for an outside worker. Once upon a time when MIL worked full time they had someone that came in to clean.

Ugh, I don't know, I just feel so helpless.

The 36 Hour Day comes in an audiobook on Audible. If he has a smartphone (or you have an old one to give him), he could download it & use one wireless earphone to listen to it.  

[Spryte]

Echoing everything above.

Also - I have three elders with dementia now, and care for each looks different so this may not apply… My own mother is highly medicated due to mental health issues that preceded dementia onset.  One of her meds is anti-anxiety, and if she’s late with it or misses it … things get dicey.  She’s also on antidepressants and mood stabilizers. None of which are ideal for dementia, but I cannot live with an unmedicated bipolar and (insert multiple diagnoses) dementia patient.  I don’t think your MIL is like my mom, but there could be space for appropriate meds from a doc.  I would want to talk to someone about whether there are options.  There may not be.

MIL recently became mean, and it was hard on FIL.  They are in nursing care together.  Nursing home gives MIL something for anxiety, now, I think it’s lorazepam.  Really helped.  She’s on a few other things as well - antidepressants, for sure.  However, again, these meds may be appropriate for her because she is on “comfort care” which is like hospice.

FIL is just at the start of his dementia, so no idea where that will lead us.

Anyway, yes to all the above, especially helpers, and also … discuss her behavior with her doctor.

[saraha]

46 minutes ago, Katy said:

The 36 Hour Day comes in an audiobook on Audible. If he has a smartphone (or you have an old one to give him), he could download it & use one wireless earphone to listen to it.  

I wish he would do this but he eschews all technology. He has an ancient flip phone that he can only call out on and never answers because he doesn’t notice it ringing 🙄

I know we need a helper, I just don’t know how to convince fil of that. Dh and I were noticing how thin he looks lately. I know they are brought good meals, I cook for them myself two days a week, but he just looks thin.

Edited June 17, 2021 by saraha

[Alicia64]

My dad is your fil. My mom has Alzheimers.

I don't have any advice b/c my dad won't accept help either.

Re: talking on the phone and getting the real scoop. My mom takes two naps a day: one in the morning and one after lunch. Neurological diseases make you really tired.

If your mil is taking daily naps, that's the time to call him.

My mom has Tourette syndrome that I've learned happens w/ Alzheimers. She cusses a lot and is really hard on my dad.

Hang in there.

[saraha]

Oh lord, I am venting this here because dh has an eye appointment today, which if anyone remembers was/is a huge ordeal and he is already keyed up about that. I guess fil wants to finish baling up at his brothers place and is thinking of leaving mil at home by herself because she threw a holy fit yesterday after I left. He was hiding in the barn talking to me and was watching her looking for him. He knows he shouldn’t leave her but he also doesn’t want her throwing a fit.

Because he was literally hiding from her so we could talk, I told him about her behavior yesterday and explained that is why I didn’t trust her there. I also told him that I think he is a smart man and I trust that he only wants what is best for her and that I am around today if he changes his mind. Now I’m praying he changes his mind

[Harriet Vane]

First, let me say I am so sorry for this hard, painful road you are on. I have walked the Alzheimer's path with two much-beloved grandmothers, as well as my darling mother-in-law. I took care of my dear and beloved father-in-law for almost a year (first as an emergency for a few months at the beginning of the pandemic, then he stayed with his daughter for two months, and then he came back to us for several months). Fil has Lewy body dementia, and his slide downward was VERY fast and VERY intense and he did unfortunately experience major personality changes and become violent. I also walked side-by-side with my aunt who had severe dementia from a brain tumor. Fil is still living but the others have all passed on.

I am going to be super-blunt, not out of any desire to be unkind, but because my experience tells me your family will continue to suffer and cannot drift.

The personality changes, paranoia, and anxiety are due to the progression of the disease on the brain. There is no way to reason through this. It's a waiting game until enough of the brain has been ravaged so that the patient becomes less mobile and more docile. This stage can last years. Some patients respond to medication, but many do not. Neither my mil nor fil responded well to medication, especially fil. It only ever just barely took the edge off his mood sometimes. Most of the time he was just angry, agitated, paranoid, and hitting. The only saving grace for us lay in moving out of the way quicker than he could hit. This is not a safe way to live, and it takes a serious toll. 

It is true that FIL needs help and he also needs a plan for the next stages, because those stages will descend upon him without warning. It is terribly hard to try to access resources after a new stage of need hits. Those resources MUST be planned for and in place BEFORE the next stage hits. What you describe is dangerous for both of them, and the plan to take it day by day virtually guarantees quite an upsetting cascade of unhappy events to occur. I have lived this upsetting cascade with each and every one of the dementia patients in my life.

It is also true that accessing outside resources is exhausting and demanding and awful. Quite frankly, there are a ton of rotten eldercare workers out there, because it's a profession that does not require much training and is vastly underpaid. There were many, many days that it felt like more work dealing with the idiot caregivers than it was to deal directly with fil or mil on my own. There were many days that it felt much easier to take a chance on fil hitting me than on trying to motivate the caregiver to do what they were hired to do. My guess is that this is how your fil feels. It is both depressing and overwhelming.

That said, there ARE really good caretakers out there and really good facilities. With all my frustration with incompetent caregivers, we did actually find three who were wonderful. Absolutely the best thing to ever happen to us. We tried to hire two of them on for more hours--one was only available certain hours, and the other was hired privately by a different family, so those doors shut to us. The third wonderful one happened to be our favorite. We showered her with gifts and compliments and we slipped her extra cash here and there to reward her for her immense kindness and competence. 

There is no way around the sad, hard fact that this condition will get much harder before it gets better. There is no way around the sad fact that your situation needs structure and outside help. I would advise the adult children of your loved ones to meet extremely regularly (weekly is best) to assess ongoing needs, to research the specific resources for help in-home and also an nursing home placement for possibly someday. You may not use all the options you find, but knowing what's out there and what it takes to access those resources will only help you. And I would strongly urge you all not to make decisions based on the paranoia (it will be triggered no matter what you do or don't do) but rather, decisions must be made based on the safety and continued health of caregivers.

[Harriet Vane]

Forgot to add a note about hearing loss.

My mil suffered hearing loss and was prescribed hearing aids. It was a tough transition for her and ultimately, after a few years of trying, she was unable to use the hearing aids at all. Her brain literally could not process sounds using the hearing aids. It was increasingly upsetting and stressful for her to try. The catch-22 is that hearing loss exacerbates dementia losses. We tried being super-disciplined about helping her wear her hearing aids, but eventually we were more or less forced to give up as she would not keep them in.

[Storygirl]

I'm sorry. I know it's not easy. At all. I think you are so good hearted to offer to sit with your MIL so often, but I agree that getting help sooner, rather than later, is a better option. If you make yourself endlessly available, you risk being unable to meet your own immediate family's needs, and it makes it easier for FIL to put off the decision to hire help. No matter how much help he brings in, there will always be ways for you to help, too, and I am not saying that you should back away. Just that they need more help than you can reasonably offer, since you are the only non-working adult in the extended family.

Yes to hiring cleaning help. I think that is an easy start, because having the family clean seems to set her off.

Could she perhaps come to your house one day a week? The cleaners could come then, and FIL could schedule necessary things for himself and have some time to do his own needed research without her objecting.

Then hire help for the other days of the week. Does FIL work on the farm full time, or is he able to be in the house with her quite a bit? He will need a break, so I would suggest that if you have her come to your house once a week, that can be his day off -- not a day to do farm work, but a day to do things for himself at home.

I agree that there is little to gain from trying to figure out motivation for her behavior. Discerning triggers, so that you can try to avoid them, yes. But there is not a reasonable explanation for her thoughts or behaviors at this point, other than the disease progression. Sadly, she will not be the same person that she was. Grieving that loss while she is still physically with you is extremely hard; my mom had Alzheimer's for 15 years, so I empathize.

Mom especially hated showering (this is common, so I would expect it to happen for your MIL, if it has not, yet). It was an ordeal to get her to wash, so I only did it about twice a week when she was living with me. During that time, she occasionally went back to her own home to stay with my dad, who hired someone to help her shower, and she was sweet and compliant with the hired aides. There is no guarantee that your MIL will do better with hired help, but it is entirely possible that she will, and it's worth trying.

 

Edited June 17, 2021 by Storygirl

[Storygirl]

We lost both Mom and MIL over this winter, and both had dementia. Mom, as I mentioned before, was an Alzheimer's long hauler, as her mother was, before her (we cared for my grandmother in our home for years when I was a teen). MIL declined over the past five years after a few health issues, and she declined particularly in the last year and a half of her life.

This happened to correspond with the pandemic, so DH and I were not able to help FIL much. We also live hours away. DH's sister did help her parents a lot, and FIL's sister came over once a week, I think, to cook for them and give FIL a break. But, because of the pandemic, they did not hire outside help for a long time. Eventually they did have a nurse's aide come once or twice a week to help her bathe, etc.

But when we were able to visit (outside, for short visits, unfortunately infrequently), we watched FIL decline over that same time. He looked awfully tired. He lost weight. He looked like he was carrying a great burden. I encouraged him to get more help, because he could only help MIL if he remained healthy, and we offered to pay, since we couldn't be there personally -- and it still took him overly long to accept help. By the time he did, he himself was worn to a thread. He couldn't sleep well, because MIL would be up in the night.

Sadly, MIL died at the end of January, and FIL took it hard. But we have seen him a couple of times since then, and he is much healthier himself now. Much healthier. The same thing happened for my dad --when my mom still lived at home, Dad got so worn that people would ask him if he was doing okay. Once Mom came to live with me, and then went into a nursing home, Dad bounced back.

Your extended family seems like a strong unit that cares well for each other. I'm mentioning what happened with my dad and FIL, because the dementia patient very often inadvertently pulls the caretaker down, healthwise. I experienced it myself, when I was mom's primary caretaker for a year. It's highly stressful, even when the loved one is on the compliant side.

Encourage your FIL that he will need to take care of himself, so that he can care for MIL. And that it's very normal for that to require outside help. And that it's better to not wait until he is hanging on by a thread before trying to hire people in. You can say that you are so willing to help, but that your help will be more limited than what MIL needs.

If she would be willing to go to an adult day care situation, and if some are operating in person now in your area, they can be a great option. You might think that she would never go along with that, but sometimes people are surprisingly okay with being there. You won't know, if you don't try. My grandmother attended one for a good while, but my mom didn't. My dad looked into it for Mom, but they charged on a sliding scale based on income, and Dad didn't want to provide his financials. Sometimes people do let things like that become barriers to accepting help.

I don't think, by the way, that your MIL should stay at home when your FIL is off at his appointments. That probably goes without saying. You can give advice, but you may not be able to convince him to do things a certain way. My dad used to leave my mom alone long after I thought it was appropriate, because he still worked, and that's the reason that I brought her into my home for awhile. You may be able to convince him that she needs someone with her, if you point out that she would not be able to handle an emergency by herself (for example, if a toilet overflows or if she leaves a burner on and burns something). Or that she could wander and get lost. Wandering does happen, and there can be tragic results.

It's going to be a hard road. I'm glad that she finally has a diagnosis, though, and that your family is talking about what to do. That's a good first step, compared to denial.

[saraha]

15 minutes ago, Storygirl said:

personally -- and it still took him overly long to accept help. By the time he did, he himself was worn to a thread. He couldn't sleep well, because MIL would be up in the night.

This is exactly what is happening here. He is losing weight and is just not open to getting help. It is heart wrenching to see this mountain of a man go down like this.

15 minutes ago, Storygirl said:

You may be able to convince him that she needs someone with her, if you point out that she would not be able to handle an emergency by herself (for example, if a toilet overflows or if she leaves a burner on and burns something). Or that she could wander and get lost. Wandering does happen, and there can be tragic results.

I said all these things today, but he just wouldn’t go against her. I am afraid it’s going to take something bad happening.  
 

I am debating telling dh he left her alone, because I know that fil is not hearing it right now and that means there is nothing dh can do about it. Right now I am erring on the side of not.

I will be up there in about an hour, it’s my night to bring their dinner.

Edited June 17, 2021 by saraha

[saraha]

She is not willing to do anything but sit/ stand next to him all day. I was surprised she came up to the house and let him bale, but I think it’s because she could watch him the whole time. If it were up to her, they would only leave the house to go to church, take a drive, or go to the beauty shop for her weekly appointment, and always together. So a day program is out.

[Storygirl]

I don't think you gain anything by not keeping your husband informed. So I would tell him your concerns.

It's going to be extremely hard, but your father in law is going to have to come around to accepting that his wife is not capable of making many decisions for herself any more. He will have to do many things that displease her, and accept that the displeasure can't be avoided, but that safety must be assured.

I know that you realize this, and that you can't control your father in law's thoughts. You will just need to gently keep repeating what is true -- MIL is no longer capable of making the right choices in these matters, and she will be upset, not matter what we do.

It's a hard spot to be in. My dad did not make the same choices that I would have made, many times, with my mom, and it was hard.

[Storygirl]

3 minutes ago, saraha said:

She is not willing to do anything but sit/ stand next to him all day. I was surprised she came up to the house and let him bale, but I think it’s because she could watch him the whole time. If it were up to her, they would only leave the house to go to church, take a drive, or go to the beauty shop for her weekly appointment, and always together. So a day program is out.

You probably know, but dementia has phases. She will change. In fact, if she lives long enough with this, she will likely lose her feeling of connection to her husband and not recognize who he is. So the clingy behavior or need to control will not last. Oh, it may last for a good amount of time. But it will change. In some ways, dropping to a lower level of cognitive ability offers some relief from challenges, though new challenges arise.

So what is not possible now may be possible in the time to come.

Hugs

[Harriet Vane]

4 hours ago, Storygirl said:

I don't think you gain anything by not keeping your husband informed. So I would tell him your concerns.

It's going to be extremely hard, but your father in law is going to have to come around to accepting that his wife is not capable of making many decisions for herself any more. He will have to do many things that displease her, and accept that the displeasure can't be avoided, but that safety must be assured.

I know that you realize this, and that you can't control your father in law's thoughts. You will just need to gently keep repeating what is true -- MIL is no longer capable of making the right choices in these matters, and she will be upset, not matter what we do.

It's a hard spot to be in. My dad did not make the same choices that I would have made, many times, with my mom, and it was hard.

Well said.

[City Mouse]

I just want to thank people for sharing. I am seeing some behaviors in my mom that have been described above - anxiety, paranoia, mood swings, demanding/trying to micro manage my dad. She hasn’t had any obvious signs of memory issues, so dementia has not been on my radar until reading this thread.