Is it time to place my husband in a facility?

Barb, I would say that only you know if you can continue to care for your husband. Caring for a person with demensia is challenging and it only continues to get worse. I take care of my mom 24/7. I get out about twice a week for about 4 hours to go to work meetings. The rest of the time I am with her and working from home. Thanks goodness my children bring my grandchildren here. They are my relief, even though I am still with Mom.

Have you thought about sending him to day care more often? Or getting some help in the home? Maybe a professional to help with showering? Are finances something you need to consider?

I have heard others on the chatrooms say that if you are going to move a LO then earlier is easier on them. I don't know as we have decided mom will stay with us to the end. If you do decide to move him, you should feel good about your decision... You are making sure he is cared for.

Barb,
It's time when you say it's time. I understand your anguish and send blessings,
Jamie

If you're questioning it, I'd say now is the time. Don't wear yourself down to the point that your own physical and mental health are compromised. Your husband isn't going to get better and his needs will only increase. I agree that the sooner you get him settled into a facility with 3 shifts of people to care for him the better. Then you can go back to being his wife and visit him. Let the others deal with showering him and making sure he's comfortable with his medications so he's not anxious with hallucinations or delusions. I give you a big virtual hug - you've done so much already for your husband. It takes a really loving spouse to do as much as you've done.

Been there, done that -- twice.

My husband had dementia and the situation was very much as you describe, except he wasn't incontinent until the end. Aricept really helped with the hallucinations. Is your husband on that? My husband took one drug to reduce anxiety and allow him to sleep, and another drug for excessive daytime sleeping.

I never promised to keep him at home until the end. I did promise never to abandon him, and if he developed problems that could be dealt with in a facility I would be there often and I would always be his advocate and see that he was getting good care. We had this conversation several times, during times he was lucid. He would have preferred a promise to keep him home, but I thought I should tell it like it is.

As it turned out, he was able to stay at home the full ten years. He had about 5 weeks of hospice care at the end.

I was almost 20 years younger than my husband. I think that makes a HUGE difference. He attended day care 3 days a week. When he got to the point where he needed more attention than the day program could provide we got a personal care attendant 30 hours a week. That was wonderful! We had a team of great doctors. It also helped that he retained his pleasant demeanor throughout the course of the disease.

The other person in my life with dementia was my mother. When she could no longer live alone, my Sis and BIL took her in. BIL is a total sweetheart and was supportive and helpful. Two people doing the caring makes a huge difference. They didn't need to find an elder-sitter every time they needed groceries. For respite I took her for a long weekend once a month and so did another sister. The third sister stayed with mother one evening a week. So the couple had some scheduled respite. Mom stayed with them 14 months. When her health worsened we moved her into a nursing home. She was there about 2 and a half years, dying at age 96. She was content and she got good care.

Deciding whether and when to place a loved one in a care facility is very stressful! And each situation is unique, so it hard to set guidelines.

I suggest you start looking at care centers so you'll be ready if you decide that is the best course. While he is still at home, I suggest 2 things: Talk to the doctor treating his dementia. Describe these disturbing behaviors and ask if there are medication that might help. The other thing is to have your husband attend day care 5 days a week, and get some help. Even hiring a house cleaner can free you up a little. You need respite!

I placed Dad in Memory Care 3 1/2 months ago. It's a great facility, close to my house. My siblings rarely visit, while I go every day. I CAN care for him at home, and I did for 6 months. But the help that I got --from my own adult children, a granddaughter, some from hubby, and a short stint with adult day care --was a struggle. My children are busy, and his incontinence was unfair for any of them to deal with. I had one sibling who helped out twice for a couple of hours. I question my decision EVERY DAY, because I CAN care for him here. But it took over my life when he was here, and he has declined. When I visit him, I'm sure I made the right decision for me, but I still hate that he has to be there.

As has already been mentioned, it might be worthwhile to look into getting some home caregivers to help you out. It can get expensive, but depending on your finances many states offer programs to pay for all or most of home care to keep individuals out of NHs.

You can also consider hospice. My grandmother was just diagnosed with dementia last year but in May she began showing more severe signs (similar to your husband) in addition to getting ill more often as a result of poor hygiene and reduced food intake, despite my best efforts to assist her. I contacted the hospice I used for my father last year and I have been able to keep her at home until now between their help and the state program (she was in day care for awhile until hospice)...so it's a total of about 24-30 hours of aides a week.

That was enough before, when I was just working and gram could be alone for 30-45 mins or so if I was on my way to/from work and the aide had just left or hadn't yet arrived...and I had cameras set up too...but now it's getting to the point where I am too overwhelmed with her care and I am going back to school on top of working. It is time to place her in a NH.

The decision maker for me: she is not able to accurately tell me what she needs any more, or she gets upset if I try to guess and I am wrong. I don't know if she's hungry or not, or what she feels like eating. I don't know if she's in pain, or if I give her pain medication if the pain has been relieved. She refuses to let me change her dirty briefs and will actually push me away because she can't see (or understand) that they're dirty, but will then wear herself out changing into clean ones three times in 30 minutes. It is simply not safe for me and me alone (besides the paltry 24-30 hours) to take care of her, especially when I'll be exhausted from work and school.

Making that decision is hard on both of you. If it is no longer safe for EITHER of you, it's time. You'll be able to enjoy the time you spend with your husband more when you visit than now when you are trying to run around and do all of the caregiving tasks that are never ending. That's what is important.

Ask yourself if you are financially able to have a nursing home take care of him. All of his income will go to the facility--I mean ALL of it. Unless you have long-term insurance but even those have a maximum CAP and nursing homes cost about $90,000 a year per person per year. Now if he is ALREADY on Medicaid you have it made. Medicaid will pay for his impoundment but you will be responsible for miscellaneous expenses like doctor appointment transport. Taking care of someone with Alzheimer's is a very gut-wrenching experience. Eventually you will have to hand feed him and manage his bowels, that is, if he does not have a bowel movement in 3 days you MUST give him a laxative..and clean him up. And you only have yourself. Usually if they don't go in three days there will be a ton of stool to clean up.  In fact the center of your life will be managing his or her bowels and is a major source of stress.  It can take many hours to induce a bowel movement and every waking moment you are stressed waiting for the "blow out" -- try this every other day or every 3 days.    Men it's not as bad but for a woman this is ultra horrible since feces goes up the vaginal area and it must be well cleaned to prevent urinary tract infection. Since you say he's going to daycare--it sounds like he's already on Medicaid. If not, it sounds like you have some money tucked away which the nursing home will seize. Also if the estate is in HIS name and not yours Medicaid may try to recover cost of care INCLUDING daycare, on his passing since everything goes to probate.  It's called the Medicaid Estate Recovery program. So hopefully you are co-owner on the house deed so the home need not go into probate. Or if you live in low-income housing again you have it made.  https://www.eldercaredirectory.org/medicaid-estate-recovery.htm 

Barb -- I say go with the advice of those who urge you to place your husband in a nursing home now. Because my husband was under home hospice care, I was relieved of having to make a decision about whether to place him in a nursing home. When his hospice team saw the toll being on call 24/7 was taking on me, they made arrangments for him to be placed in a nursing home, and just asked me to sign the papers. Their decision was also based on his frequent falls. It was only after the stress of hands-on caregiving was taken from me, that I realized what a toll it was taking on my mind and body.

It's a very difficult decision to make. My mother has dementia and caring for her at home became very difficult. The anguish I went through before I made that decision. It was not an easy one but one that I had to make. It's been a year now that my mom is in a nursing home. I visit three times a week. Mom is well taken care of but I still feel the hurt when I say goodbye. Only you can know when it will be the time to place your loved on in a nursing home.

Barb,
It sounds to me that you already know the answer, that you know his needs are too great for you to manage anymore and he should be in an extended care facility. There comes a point in dementia or any degenerative disease where the act of greatest love is to admit that the disease has progressed too far for your own 24/7 loving care. That is where you are now, and to keep him home could even be construed as neglect since he is staying in his urine-soaked clothes, not receiving adequate fluids and not receiving his meds on time. If he is incontinent he should be in paper pull-up underwear (such as Depends). If he refuses this he should be in a facility so multiple people can reinforce these issues and not you. It is an act of love at this point in his disease to put him in a facility. Also, the physical deterioration aspect of dementia can progress very slowly compared to the mental aspect and he could stay at this level for many months or longer. That is too much care for one person to do. He needs a staff and you need a break. You can visit him daily at the dementia unit in a facility and this arrangement would be better for both of you. Reni Winter-Evans, MSW (Dec. 2017), CNA, HHA

Barb1990
You alone can not continue to care for your Husband.
You do have options.
You can get help. Hire a caregiver privately or through an agency. Arrange for 6 to 8 hours at least 4 days a week.
If you are paying for Day Care some of the cost will be offset by reducing the number of days at the Day Care or continue the Day Care and have the caregiver still come 4 days and that will be the whole week covered.
Caregivers not only care for the person they are hired to care for but they will do light housecleaning, laundry and meals for the person they care for. They will assist with showering as well.

Is your Husband a Veteran? If so there are programs that will help pay for caregivers or there are programs through the VA that will provide a caregiver for a specific number of days per year, you select the days you want someone.
(I alternated between the VA caregiver and Day Care while my Husband was still able to attend Day Care.)
There is another program through the VA called VIP and that provided a budget and from that budget I had to find and hire a caregiver. I was able to get a caregiver for a longer time than through the other VA program but it did mean I had to find caregivers, do paperwork but once I got a caregiver it was easy. File the weekly time sheet and an agency took care of paying them.

Last resort would be placing him.
If he is a Veteran and if he falls into a category where he has "service connected disability" he may qualify for a VA facility at no cost. If not then the cost of a facility can vary depending on the care that he needs, some will charge you for each thing that they have to do so as your Husband declines the cost will increase. Some have a flat fee.

Not an easy decision.
You need to do what is right for YOU.
He will continue to decline and require more care. You can not do that alone.
And if you have not done so yet I strongly suggest that you have a discussion with an Elder Law Attorney.
Get a P.O.L.S.T. in place. It is like a DNR but much more detailed.
(stands for Physicians Order for Life Sustaining Treatment.)
Be strong this is a long road you are on.

Everyone assumes you can put him somewhere. My problem is my husband never would give anyone his post. He was too arrogant to think anything could possibly ever cause him to need it. He still thinks he is ok even though he can't remember what day it is if he has showered or eaten.

My mother used to think her sister was downstairs visiting when she wasn't there. And they insist their reality is real. It's very hard. Maybe you should think about putting him in a home, it may not be as bad as you think.

Barb,
I agree with everyone else. It sounds like it is time for a change of some sort. I wonder about the day service. They are afraid he will start to wonder? Sounds like dementias aren't their specialty. So, I suggest you 1) look into other day programs, if there are others, 2) look into some in home support - especially with the bathing, 3) look into local memory care units. Even if you decide not to place him in a memory care unit, do try to increase adult day services and/or hire someone to assist in the home, even if it is just with bathing. This is not a journey for sissies. (Hug)

I was in your shoes back in May when my husband fell and broke his hip. He was taken to the hospital, operated on, and on the third day needed to be discharged to a NH for rehab. His 21 days in rehab produced hardly any results due ,most likely, to his dementia/Alz. I had no money to pay for the NH so I contacted an Elder Law Attorney, who immediately filed for Medicaid on behalf of my husband. So he was transferred to the long term care unit in that same NH, and has been on Medicaid Waiting since. It's been a long few months, gathering all kinds of paperwork for the past 5 year look back period. He wants to come home, but I was at the point BEFORE he broke his hip of deciding how I would ever be able to place him somewhere. I prayed like crazy for God to take the decision out of my hands and he did. I never promised him I wouldn't put him in a NH, but would say to him "I'll take care of you here as long as I can", and he was happy with that. He misses me terribly but I visit every day for 3-4 hours. Sometimes I split the time up two times a day. It's never enough for him, but since he can't walk yet, or take care of himself, I have no choice. He's 82 years old, and I'm 76. I could never take as good of care of him as the staff is doing at the NH. They love him.
It's a very hard decision to have to make. Don't let yourself get too tired and stressed out or your health will suffer. I was already at the point back in May where I was crying at the drop of a hat, and that wasn't like me at all. Caregiving, at some point, needs to be left to the professionals. I'm sorry you are going through this. I understand completely. Sending you a big hug and will say a prayer that you will be guided to the right place for your loved one.

I'm so sorry to read this. My parents moved in with me about 2 years ago after my dad's dementia had progressed and he was having some personality issues. My mom was able to largely care for him at my home with me supplementing and him going to Day Care twice a week. But she was getting more and more overwhelmed with his increasing needs, incontinence, etc.  He was enrolled in the PACE program (please look into it, it was a tremendous help). PACE provided morning aides to help him get ready for day care, transportation and all of his medical care. As his dementia progressed, they increased the amount of support they provided - medical devices, life call monitoring, aides twice a day and Day care 5 days a week. That allowed us to keep him home longer than I ever expected. He started having a lot of behavioral issues and hallucinations in January and to stabilize his meds, he was admitted to the hospital in Feb. After discharge, he went to a nursing home for rehab and stayed there for 3 weeks before he acquired pneumonia and flu. He went back to the hospital for about 2 weeks and was discharged to hospice care in a nursing home before he passed on April 2. The advancement of dementia is really quite something and you have to have so many levels of support in place. I hope you can see if you have a PACE program in your area (just google PACE or Program for All inclusive Care of the Elderly. It made a huge difference for us and allowed my dad to stay at home for most of his life with dementia. Before his hospital stay, we were looking into nursing homes because it was a lot to manage given mobility issues and the configuration of our house.  There can be long wait lists (at least in my area, so start looking now) He passed at age 93.  

I've said many times that I will know when it's time. When I can no longer do it on my own. I hope this is true. And I hope it for you. This is a very difficult decision but know you are making it out of love and concern for what's best for both of you and you will know it's right.

Just a story...my father-in-law wandered off (my mother- in- law just left for a few minutes to use the bathroom). He was NOT found until the next day under a bridge. For his own safety and your own health I would say yes.

Barb I have dealt with putting both parents in homes which was difficult but there were 5 siblings to help. The past two years I've dealt with caring for my husband, who has a very difficult type of dementia more behavioral issues than memory issues. I started with bringing in a caregiver two days a week for 4 hours. He always was on good behavior with caregivers but he was different when it was me. I dealt with this and kept him home. I learned that making the decision to place your husband in a facility it so much more emotional and difficult than placing my parents. However two months ago I finally realized I had to make the decision because he seemed more relaxed and happy around his part time caregiver than with me, for whatever reason. So I found a memory care that felt right to me. He has adjusted better than I thought. Which makes me think he was worse than I thought. It's been an emotional roller coaster for me. You will go through guilt and grieving. I would advise a support group to help you decide when the time is right and continue to go after you have placed him. Good luck, RA

This has been a helpful post as I am wondering the same thing. You do have to take into consideration a safety net if you should get sick or injured.

Placing my mother in a wonderful assisted living/memory care facility was a blessing in disguise for me this year. I had to have some extensive abdominal surgery 5 months after she was moved, and I can't imagine how I would have managed if she had still be living with me. So I agree with Invisible, even if you don't place him now, I hope you (and everyone else) has a plan of action if heaven forbid something happens to you.

It sounds like the time to place him in a good memory care unit. The caregivers will be able to persuade him to get washed up. You will find a way to say goodbye. My mom is in memory care and I give her a kiss and say I've got to go get groceries. She asks where her late husband is, and we tell her he is at a poker tournament. These answers satisfy her and then she forgets. Its so important to go along with the stories and soothe the anxieties, because they are very real to the alzheimer's person. A lot of areas have "A Place for Mom," which is a free service to help you find the right place. (Its for men too) They can take you on a tour, or just answer your questions. I am sorry for the losses you are experiencing. It is a heartbreaking disease. Take care of yourself in mind, body & spirit. {{{HUGS}}}

Have his primary care physician write a script for nursing & Phys therapy so he can get home health aide to help you at home. Don't do 24/7 please as it will kill you. Even if you have to pay private to have him washed & dressed.

No Nursing Home, no matter how rich or poor is a holiday inn. Try to keep home with help.

Sounds very similar to my husband. He had delusions and hallucinations of me having an affair and threatened to harm me and his imaginary person if he saw us together again. I became afraid and he was then placed in a facility.

Ricky6, I'm not sure why you're against nursing homes or perhaps, AL facilities, but for many people who are worn out from caregiving or are unable to do it any longer, they can be godsends. I agree not all are good places, in fact some are miserable. I think with due diligence a good and safe place can be found for those whose caregivers are no longer able to meet their LO's needs. Blessings to you. Lindaz.

Barb, since my mom is not that far along yet, thank God, I was pretty shocked at what you have to handle... Because it probably happened gradually, you may not really think it is so awful for you to have to live like this, but it is, and past time for you to be relieved of duty, isn't it?

Ricky6, I have to disagree, my mother is in a fabulous assisted living/memory care facility, she has a one bedroom apartment with her own living room, kitchenette, 7x7 walk in closet with built in's and a huge accessible bathroom. The place is lovely and clean and the staff is kind and they take good care of the residents. So not all facilities are bad ones. I hope I can afford to live in a place that nice when my time comes.

All of the above answers helped me TREMENDOUSLY!! I have a much more realistic understanding of my husband's prognosis and the options available to me. Thank you!

They don't know where they are living, but they 'want to go home'. They fill up their Depends and shuffle between the recliner and the toilet. Their lives, as they knew them, in their houses are OVER. It is time to put them in a nursing home, for your own health and sanity. You can go visit, you can sit there with them 8 hours a day if you want, but keeping them in your house, or their own houses, is off the table. Sad. That's how it goes, if you live long enough! I got my mother into a nursing home when it was time, and she was as happy there as anywhere else. Put her into a Trump palace with a gold toilet seat and 24/7 personal care, keep her at home with a big jolly family all vying to take turns at home care, or a nursing home: she would have been exactly the same: Incontinent, dementia, hallucinations, and finally passing away from the disease. YOU are the one who is suffering the most.