My wife is 64, was diagnosed 5yrs ago but showed some symptons earlier. She may be in stage 6 but anti-psychotic and anti-depressant have stabilized things to a large extent. Still, there's a lot of confusion about most everything, and she needs help with most everything. She's functioning fairly well in a day-care situation. Still, I'm working and my daughters have young children and are limited in how much they can help.
I need to work another two years, but I'm getting fatigued at this point. Besides the need to be with her constantly and to keep up with daily household needs, she has fallen several times (and can't get up, having no instincts and no ability to follow instructions) and now gets up in the night and just wanders, can't find the bathroom, doesn't know what to do when shown, can't figure out or follow instructions to get back in bed... So I'm getting weary, though I work at it and in general am a patient person.

My daughters and I are feeling a bit desperate and are looking into nursing homes. I know this is necessary whatever the immediate future holds, but this is still a guilt-producing exercise! Could I handle this for several more years if I were more patient or would more willingly give up professional and personal activities to do so? Where is the line between "taking care of yourself," as the mantra goes, and sheer selfishness? Do I crave the nursing home because it would make MY life easier or because it would be better for HER?
The standard lines seem to be, "Well, everybody's different and only YOU can make that decision," or, "Well, you'll just KNOW when it's time." The first statement is obvious; the second doesn't seem to work for me at this point.
I'm mainly just venting here, but I would like to hear what others' experience has been. I think this decision is a little more difficult in our case because neither of us is that old (64 and 68), both in relatively good health.
Thanks for your response.

It's da## hard to make that call. I imagine much more so with a spouse. I had to go down this road with my, at the time, 85 yr. old Mother. One thing's for sure, you'll need more in-home help. You can try that for awhile to help ease the pressure of keeping up. Just know that things will progress further (you probably already do) and will require another adjustment.
We kept Mom at home for as long as she was safe and her quality of life was decent. Eventually, wandering happened, more confusion happened and she didn't recognize her own home anymore. That helped with the decision. Luckily for me, when she was having a clear moment, she told me it was time and that no one should have to make that decision for someone else. Quite a gift I must say. She saw I was literally killing myself trying to make sure she was taken care of. She knew, to some degree, what was happening. Some days more than others. She didn't want to be that kind of a burden to us. Not that I thought it was a burden, she is my Mother after all. But it was her wish to stop this burden. When we got to the NH, (really bad day) she actually said she thought we got her there just in time. She knew. She doesn't now for the most part and that's blessing too.
So what I'm saying is if you think about what your wife would really want, that may help with your decision too. Would she expect you to ruin your health for her?
For us, it was quality of life and safety. When we couldn't maintain those two, it was time. And oh by the way, it's good to have a plan ahead of time as there are often waiting lists for several months. Doesn't hurt to have your name on the list just in case. You can always 'take a pass' if they call and you're not ready or have changed your mind for some reason. Just know that the requirements of time and care will increase in the future. Love is worth the stress to a point. Your life has value too. And you can't take care of her if you're run down.
I hope this is of some value for you - it is what happened in just one case. I really didn't even realize how bad of shape I was until after I placed my Mom. It's hard to see when your in the middle of it you know? I bet your daughter's have a thought or two about that as well.
Take care -

The fact that you are asking the question tells me that you are at the point of placement. Not necessarily a NH, but some sort of care for persons with dementia. In Chicago you should have quite a few options. Contact your local Alzheimer's Association for help.

Caregivers and Family members must look out for both their physical/mental health and financial health. You must contact your lawyer or elder lawyer to make sure that your financial affairs are in order. Your wife could live for many years and you want to make sure that you have adequate post retirement income to care for you. It is not selfish to work another two years, you have to for your financial health.

Good luck and come back often.

I wouldn't think about this in the abstract--but rather visit all NH dementia units within a comfortable drive from your house.
You might ask the local alz chapter if there are any they recommend.

There's such a range. Some are thoughtfully designed and would be safe and helpful places for your wife; others are not.

Jim Broede has many posts about his experience having his wife in a NH-- His dedication to her but also his need to sleep and care for himself.

There comes a point when taking care of a LO with dementia sucks the life out of you. I know I am not a qualified caregiver, and most of us on here are not. It sounds like your wife needs more care and placing her is not doing it to her, or for your convenience, but you are doing it FOR her! What happens if she gets really hurt at home? Placing her, and it doesn't have to be a nursing home (there are dementia only ALF's and senior houses) does not mean that you are abandoning her. If you do make the decision to place her, make sure it is close to your home so you can visit regularly.

I am talking from experience with my mother, not a spouse. I know a spouse is a very different thing, probably much harder. This is one of the hardest decisions in life that we have to make. I wish you the best of luck.

One more thing before I go, please call the Alzheimer's Association. They give fantastic advice and are a tremendous help, especially with difficult decisions.

I am 62 and my husband is 64, still functioning pretty well with AD. Yet, I am starting to get tied down and have no idea how long this will all last or if there will be anything left of me should I survive him. I know I will face the same decision you are facing right now. My thoughts at the moment are to ask what I would want if the roles were reversed. I would say, "Find a decent place, call it my home, and come visit when you can."

I am not in your shoes either, its my mom. But, I have seen what has happened to my dad with years of caregiving.
Can you look into an interim solution before you make the nh decision- daycare, in home care, housecleaning, yard person? It might ease up your burdens a little bit. You do need a bit of time for yourself. My parents are both retired, I can't imagine my dad working and doing the care he has. It will only get worse, not better.
Good Luck to you,
I do agree, that safety has to be the primary concern.

My mom has done very well in the NH. We have been very pleasantly surprised by how well. Before the NH, she was in a dementia-only ALF, before that a small AFC family home, and before that a senior apartment with on-site home care aides. I only had her with me a few weeks and she was sleeping through the night at the time, so I can only imagine how hard it is to work and have a LO who is up at all hours.

I don't know exactly how your wife is doing, but have a fairly good idea based on your brief description. I would think she might do well in a dementia-only ALF. There were several residents there that seemed to be younger and quite well physically. They had activities of all types for people. My mom used to enjoy folding laundry (mostly washcloths). It occupied her and made her feel useful. There were other simple things that she seemed to enjoy. And the aides were specially trained to handle dementia patients. If your wife doesn't have physical problems that require skilled nursing, an ALF might work if you can afford it.

If money is an issue, you may have to look at a NH and Medicaid support. Not all NH's are bad. Many people do very well in them. If your wife is wandering, you will need to find one that has a dementia unit to keep her safe.

I have found that I am much more relaxed when I visit my mother and I can be the daughter again, instead of the primary caregiver. So maybe placement is something you really need to start researching. The fact that you are here and asking the question indicates that you need help.

You have several options. I hope you look into all of them. Please know that you are welcome and have friends here.

HowNow, you have already been given some wonderful advice. Unfortunately, once the falls start, they are not likely to stop. And do not be fooled into thinking that the right decision is going to be an easy one. It is much more difficult when the heart and head cannot agree. If you had a dear friend in your situation, what would you say to them?

If you were a selfish person, you would not be so concerned about BEING a selfish person. Having spent the past many years caring for my mother (which I know is not the same as a spouse), and having placed her in a nursing home with a dementia unit on July 31, my husband and I have had many discussions as to our individual wishes if it happens to one of us. If your wife could verbalize to you now, I suspect she would say to you that you cannot continue to do what you are doing. If you can get in-home assistance, wonderful. But obviously, you need assistance at night, not just the daytime. You must explore your options. How can you possibly take care of your wife if you are dragging yourself to an unhealthy state? And if you do not have a plan in place, what will happen to your wife, if, Heaven forbid, you become ill or injured? Your daughters appear to see clearly what is happening and support your decisions. Work together on this.

And by all means, see an attorney who is certified in elder law to help you through the legal maze.

Best of luck in finding peace in whatever you decide. Please let us hear from you.

I would strongly suggest you start checking out the ALF facilities in your area. There is a big difference in what each offers, and depending on her abilities, she will have different needs than others. My dad was almost blind and deaf in addition to his AD so finding a place with lots of activities was not important for him - he wouldn't have participated anyway. We opted for a small 12-person facility that had amazing care and lovely residents. He got great care here - not one resident got sick all last winter! But I will tell you it was still a horrible thing to have to do. It was the right thing, but it was just horrible. My mom had been able to keep him at home for about 9 years with the disease, but the last 6 months he didn't know her and things just progressed. He ended up being in the ALF for 6 months before he died. I know it was gutwrenching for my mother to place him and to visit him.

So there is no easy way out with this disease - not if you love the person. It is just a different form of terrible. It is also a necessity as this disease progresses - to keep them safe, and to take care of you so you can continue to be an advocate for your LO.

Make sure your daughters are involved in the decisions, too. We were very fortunate in that my mother, sister and I were all on the same page with what needed to be done and could support each other through it all. It seemed when one of us was having a horrible day, the others could pick us back up.

Good luck with your search and your decisions.

This decision is right up there with the "hardest things to do" list. I feel your pain. I just placed my mother a month and a half ago because I myself was exhausted, trying to work and take care of her 24/7.

In this short amount of time, I am amazed at how well she has adjusted and is involved in the daily activities at the NH. Start visiting NHs in your area that are close to either your work or your home (whichever you will be visiting directly from). Being in such a large city, you are likely to find a couple of really great places.

My thoughts are with you as you go through these steps. It is so hard, but you do have to make sure you are still able to work.

Thanks, everybody. Some of us have a tendency to keep things to ourselves, then complain of feeling alone! Your comments have helped me a great deal and reminded me of the value of shared experience. Blessings to all.

HowNow