Is it time to place my husband in a facility?

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.

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.

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!

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

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.

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.

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,
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

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.