Wish I knew what to do

nannyritch

I wish I could place my dh. Kids don’t think it’s time. But then again they won’t my even talk about him or what we go thur daily. We are going thru a real rough patch right now even with all the meds he is not sleeping little things sets him off. One minute he wants food next he is saying he is not hungry. He sits a lot on back porch by himself. Tells me to leave him alone. Until last night I had only slept about 8 hours in 4 days. He wakes me up all night. I can’t leave him alone at all. If I try he is worse for days. But yet on good days few and far between he is almost himself again. I have gone from pampered wife to doing everything and I know it sounds like pity party but some days I just can’t stop crying. My husband is gone and replaced by a man I don’t know. It’s hard watching everything say or do so as not to upset him. But how do I live without him here. Married 44 years both of us pushing 70. He is my life. Sorry but at wits end. I took care of his mom for 2 1/2 years with this and it was not this hard. What to do now?

Quilting brings calm

There are other recent posts about this same situation: primary caregiver knows it’s time to place, but the offspring feel caregiver should continue as is. There are several reasons for this: denial. Kids are worried about money, etc.

The consensus here is the caregiver knows when it’s time and the kids don’t get a vote. You will get more eloquent and nuanced replies from others soon. I’m just fed up with kids not understanding how difficult this is.

marier

I agree with Quilting brings calm" comment. You are the one who is in the trenches and doing the work. You know what is best for your DH. However your wellbeing and health should be considered primary. If not ready for placement what about a day program or in home help?

terei

Quit talking to others about this issue + do what you know is right before your own health is in the dumps. Lack of sleep alone can cause major disruption to your system. Just do it

Caro_Lynne

My LO was not sleeping, hence I was not getting much sleep either. I started giving him CBD + THC + 3mg of melatonin gummies (after clearing with his doctor) and they have been a life (or sleep) saver for me. He sleeps through the night and is not out of it the next day.

He does not have any children but I agree with the others, only you know when it's time for him as well as yourself. I am my LO's sole caregiver and will keep him home until I can't.

Jo C.

This is a very difficult situation and I do understand your own concerns about placing him even without the kids input. You would not be abandoning him; you would still be his carer, just in a different sort of way. You can visit and be with him when he is in care to the degree that is right for you - no more being the exhausted over-stressed person, but now a rested loving wife. As it is, he may be more settled in a care facility with routine and structure to his days that may be comforting as well as activity to engage in or just watch and a bit more socialization to his tolerance.

There may be other options. There is also the ability to use short term respite in a care facility. In this way, you can have two or three weeks to recoup your energy and he will have 24 hour care and increased socialization to his tolerance, etc.; as mentioned above.

Another option would be to find a good fit for an Adult Daycare, and if he attends a few days a week or even five days a week in such a setting, it would keep him engaged, socialized and by days end tired and better able to gain sleep. Some of our Members have done this successfully and to the benefit of both spouses.

No matter what; the adult children do not get a final say on admission to care. It is the primary caregiver spouse who has the right to make such a call. Perhaps you could get one or two of the adult children to come to your home for two or three days across a weekend - you would of course leave; suitcase in hand to visit someone or even to check into a nice hotel for a bit of rest for yourself. Once the adult kids have single handedly cared for him on the 24 hour continuum for a couple of days, I am willing to bet that they will not be as negative about placement necessity.

In the meantime, you can begin your search online for care facilities that look acceptable to you and then make an in-person visit to a couple so that you know which facility is the best fit. By doing that, if there is a sudden need for admission to care, you will not be running hither and thither under pressure and time constraints.

Sending best wishes and so hope it works out for you soon.

J.

Denise1847

Have you spoken to his doctor about medication that might help. Talk with the doctor about the suggestion for THC/CBD and melatonin. I have to use THC/CBD for pain at night in order to sleep. It does work and there is no after-effect in the morning.

I am with the others on the children. Have them come for a few days and experience the trauma and they will get it. If not, then you have to take care of yourself.

This issue reminds me of an old post I saw on here. Basically, the caregiver spouse asked the spouse, "what makes your well-being more important than mine?" We are all trying to do the best we can and sometimes you just have to recognize that you can't fix the situation and you have to save yourself.

I am so very sorry that you are struggling. Please keep posting as we are here for you.

harshedbuzz

@nannyritch

I am adult child with some very strong opinions on this topic. They do not get a vote in this. I am an only and was perhaps more engaged in the situation than your kids are; I was 60-ish, not working, with an adult son and husband who supported my involvement with them which may be a different place than where your kids are. I took dad to all his appointments to give mom a break. I called her every day for a vent session. I was at their home most days for a bit. I helped mom find HHAs to get so we could do fun things together. I created my own Plan B to place him if she was unable to provide care after touring a dozen facilities.

FTR, I was the one pushing for placement asap. I recognized that dad was drowning in his dementia and that mom was at risk of being pulled down by the disease as well. I couldn't save dad from dementia, but I sure as hell wasn't going to let it take my mom, too. I kind of had to bully her into it saying that it was her one chance at picking his MCF because I would pick "first available" rather than her first choice if something happened to her. Dad did really well once she placed him; he was more agreeable to care from professionals and mom was able to stand down and just be his doting wife for the first time in about 10 years.

That said, mom was so stressed out from walking on eggshells trying to placate a man with a diseased brain that she neglected some of her own care. She had two medical crises in the weeks after he died. She nearly died in the first one and lost her vision in one eye in the second. The latter has pretty much robbed her of any real independence because she can no longer drive which means my life is not what I'd hoped after dad passed.

HB

Ed1937

My wife passed away last year. I went to the funeral home with 8 of our kids to make decisions on what to get, and how things were to be done. We all sat at a large table, and the funeral director, pointing at me said "She was his wife, and she was your mother. There are decisions to be made", and still pointing at me, he said "All decisions will be made by him". He was speaking from experience.

All decisions should be made by you, not your children. It is even more important for a caregiver to call the shots because they are the ones whose health is jeopardized. It's OK if you ask for input, but the final word is yours. They should not try to convince you otherwise.

I agree that talking to the doctor would be the thing to do.

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M1

Just piling on here, but: the kids no more get a say in this than they did if they wanted to run into the road when they were three. You wouldn't let them make that decision then, no matter how much they protested, and this is no different: it is not their decision. I'd quit discussing it with them if they are going to give you a hard time.

SDianeL

nannyritch: From reading posts and experiencing this terrible disease, I can tell you that no 2 people are the same. My sister & DH both have vascular dementia and are totally different. My sister is calm and doesn't get agitated often. My DH on the other hand has become more agitated and angry and extremely difficult. The last last 2 weeks have been hell. He also has an aversion to food. When I start dinner he screams at me across the room "I'm not hungry!" finally I realized it was the dementia and would say OK. I would fix the meal, put it in front of him and he would eat it. His taste has changed to the point he doesn't like many foods he always liked. Breakfast is down to 2 things. Cereal with banana or waffles. He is having problems finding words and thinks I should be able to read his mind. My DH also takes CBD one gummy at night. They added Memantine for focus but I haven't seen any difference. They just added Risperidone low does at night but that seemed to make him worse in the day when it wore off. We have another appointment in 2 weeks with a Geri Psychiatrist who will establish a medication plan that will help him with his anger. He was also having hallucinations at night almost like sleep walking. The Risperidone seems to help that and helps his sleeping. I have also been crying. I know the time will come when I have to make the decision but I'm dreading it. I agree with other posts that it's YOU that makes the decision, not the kids. YOU do what's best for you while providing him with the best care at a MC facility. If you have a DPOA you have that right. We've been married 38 years and I don't know what I will do when time comes to move him to MC. This disease is terrifying and heartbreaking. Sending hugs.

CStrope

@Caro_Lynne can I ask what specific type of CBD + THC you give him? DH has had many nights where he's extremely restless and won't sleep. I think he gets overtired and can't calm down. He also refuses to nap or take any type of rest during the day.

Caro_Lynne

@CStrope These are the ones I currently give LO; buy from fivecbd.com. Hope this helps. I give to him after giving him evening meds. He's falls asleep within an hour.

loveskitties

It is only natural for you to want your adult children to confirm what you are feeling...that is it time for placement.

You mention they don't want to discuss his behavior or the situation you feel you are in being his caregiver. If you feel you still need their buy-in, perhaps if you have a cell phone you could video some of what you are dealing with 24/7 and email it to them. You could also keep a diary of what is going on, and send it to them. Not saying that either of these things will get them to agree, but it may help you feel more comfortable over riding their objections.

The only one in our family who objected to placement for my dad was my mother...her favorite response was "it's not time yet". Unfortunately it took a medical crisis for my dad to get placement accomplished. Believe me you do not want to wait for that to happen...I had only 48 hrs. to find an acceptable place for my dad or the hospital was going to send him home which was not going to happen.

There is no one who knows the situation better than you. YOUR health and well being are critical to your DH's continuing care...regardless of where he is physically.

While best outcome would be for all the family to agree, you should not wait for a crisis for either you or your DH to find an alternative care situation.

Wishing you peace of heart and mind as you deal with this tough situation.

nannyritch

So emailed and told kids I was looking into a care facility. They now want him tested again and someone to come here to see him. Why can’t they see he will act like everything is fine. Then when they leave the verbal abuse starts in on me. How do I contact and call places with him by my side constantly.

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harshedbuzz

They aren't going to support this. I don't understand why you continue to engage them on this topic. I get that it is really hard when you don't have the consensus and support of family-- especially when there's a chorus of naysayers. My dad had a brother-- he of the "every 6 weeks drive-by visit"-- who called to excoriate me over placing dad "too soon".

They come to this discussion purposefully ignorant of the reality of the situation at best. It doesn't sound as though any of them are willing to provide some respite for you that can make it possible to extend his time at home. I, personally, would call them out on that. At worst, they are putting the "wants" of a preferred parent over the one they consider expendable. Perhaps they resent the cost of care and the impact it will have on some future inheritance and want you to "take one for the team".

Call a home health agency and hire a caregiver to stay with DH while you drop in for tours if you can't make calls from home.

The decision to place your husband in a facility is not really a medical one. It's not for a physician to make. It's not your kids' decision to make until such time as you have dropped dead from exhaustion-- and then my money's on a MCF.

If your kids only see Showtime Dad, it's time to whip him into a frenzy and record it as a kind of reality show. I did this when I thought dad's antipsychotic meds needed to be increased but his geripsych disagreed based on dad's charming demeanor in the office. Thirty seconds of dad threatening me got the job done.

HB

Denise1847

Dear Nanyritch,

Please save yourself. We all have family and friends who can give great advice that they know nothing about, keep their distance and are the first to judge the situation. Be strong and move forward with what you know needs to happen. Don't try to please other people as they are certainly not by your side trying to help you.

nannyritch

Thanks so much. I felt so alone in this. Now after reading so many of your comments and posts I feel better. Moving forward.

Ed1937

Glad to hear you're making the move. It sounds like you are choosing life instead of making others happy. Sorry you didn't get the support you needed.

Gig Harbor

Nannyritch as soon as he starts in on you video it on your phone and send it to them. Each time he does that send them another one. Or call them and let them listen while you are talking to him and he is yelling at you. Next say that you would like them to each take a weekend and arrive Saturday morning and stay until you get back on Sunday night. Don’t ever feel guilt about placing him. You are as important as he is and without help he will take you down too. My husband is doing fine and he has been in memory care for 13 months. Luckily my daughter was very supportive of my plans so it was much easier for me. You are strong and you’ve got this. Show your kids what you are made of!

housefinch

Some people cannot be convinced, no matter what. Different situation, but after we received the severe developmental delay & autism diagnosis for our daughter, my mom kept telling me about a friend whose daughter didn’t talk until 3 and ultimately went to Stanford. Uh—-our daughter won’t live independently ever. My mom’s level of denial was truly stunning and very painful. Some people truly refuse to accept reality and you cannot kill yourself caregiving and doing that emotional work for those people, too! Please save yourself so you can enjoy your future life you have earned.