Expert: Mary Gordon - 2/29/2008

Question
My father-in-law came to live with my husband and me about a
year ago.  He is in the mid to late 5th stage of the disease. He moved in with us after he suffered from a stroke, which was kind of a blessing, because it was a way to get him from his home out of state.  We were concerned for his safety.  Thankfully, he fully recovered from the stroke, but of course the Alzheimer's is still there.  We have two teenage sons and I am a stay at home mom.  Before my father-in-law came to live with us, I was glad that I would finally get to start some new things in my life after staying home with a family (jobs, volunteer work, hobbies, etc.).  Instead I have found myself being the buddy to my father-in-law.  We have occasional caregivers come to help, but I still resent losing my freedom.  Everything has to be planned and I still spend the majority of my time with my father-in-law having the same conversations and answering the same questions over and over.  I worry about him not being stimulated anymore because I am just burned out.  When he first came here I was  enthusiastic and spent alot of time entertaining him.  My two sons will no longer eat anything that is not frozen and microwaved and will only use plastic spoons because of his hygiene.  He bathes himself, but doesn't wash his hands, insists on putting dishes away that he "rinses" with water, etc. He takes out his false teeth and spits in the kitchen sink when we are not looking. This has made it hard for the boys.  He constantly feeds our dog part of his meals (when we are not looking).  He goes through the refrigerator trying to find food for the dog and gives him things like Oreo cookies.  The poor dog has gained so much weight.
All of this said, he is a sweet man with a great sense of humor and really trying to please everyone.  Of course, with Alzheimer's disease there are alot of wacky things that he does and says.  I care a great deal for him, but I realize he could be like this for a long time.  Is that when I get my own life?  I'm really not a selfish person, I tend to be the one that pleases everyone all of the time and I am kind and loving.  But even I have my limits.  I have a sister-in-law who lives out of town, but my husband wants his father here, since my sister-in-law is single and works full time.  
My sister-in-law loves her father dearly and does not want him to be put in a home.  My husband thinks it is too early to put him in a home.  I think he thinks it would be easier to do when his dad is unable to understand what we are doing. His dad thinks he is going back home and asks daily when he gets to go home.  It doesn't really matter how you answer him because he is determined to go back there.  His home is just sitting, electricity, cable, phone, etc. still hooked up.
You can see where I am going with this.  I am tired and want my home back, but I am dealing with an in-law, not my own parent.  I know how hard it is for my husband and sister, but I am the one spending all of the time with him.  I feel guilty suggesting this to them.  If it were my parent, I think I could make a decision for them.  Is now a good time to put him in assisted living or should I just grin and bear it?
Thanks for your help!

Answer
Hi Kimberly,

I can really empathize with you. It is so tough when someone you respect and love starts to need more help that you can provide. I'm going to blether on for a while, so take what ideas might be useful, and leave the rest.

First off, put guilt away. Any promises anyone may have made to themselves or to him about his care were made when circumstances were very different. He is not the same person he was, he needs different supports than he needed earlier in the illness, the things that will be best for him may not be the things that he would have preferred before he developed dementia. And at this point, things will start to get more difficult more rapidly. If you are having trouble coping now, it is not going to get easier. This is one illness where you wonder how things could get any worse - and then they do. He will need support and supervision 24/7. He won't be able to be left alone for one second. He will need help with every aspect of his personal hygiene, with dressing, with eating - with everything. Toiletting issues will start before too long. He may mix up his nights and days and keep everyone awake. His care will become heavier and heavier and more and more relentless. I know that sounds grim, but that is the reality. And it can be a long, slow wind down hill.

You have done a wonderful job - but your husband needs to consider you in this equation. No matter how wonderful his father may have been to him, when a man marries, his first duty is to his marriage and children. If you are getting worn down and stressed, every part of your family life suffers. And if you become ill, you can't look after anyone, let alone be a caregiver for your father in law. The priorities have to be looking after yourself, your marriage, and your children.

Your father in law will never go home again - so your husband and his sister should deal with that issue, get it sold or tenanted, and put the money to use for their father's care. That the house is sitting empty tells me a lot about how much trouble they are having accepting what has happened.

My mother in law used to ask to go home as well. We were really amazed one day, when she was asked more questions about "home". It turned out, her mind had erased her marriage and memories of her marital home. Where she wanted to go was her childhood home, sold out of the family some 50 years before. She thought her parents and her sisters were there waiting for her. I heard a really good explanation about the desire to "go home", since so many people with dementia will talk repeatedly about the subject. What they really want is not to go to a specific place. What they want is to return to a time in their lives when things made sense, where they understood their place in the world, where their lives had purpose and meaning, and they felt safe and secure. That makes perfect sense - since by mid to later dementia no matter where they are, everything is a swirling jumble. I've often thought it must be like being very drunk at a big party, where nothing looks familiar and you aren't really sure what's going on or who all the people around you are.  I'll bet you if he did go to his old house, it might not look familiar any more. As a product of the brain damage, there is a phenomena called agnosia - they lose their ability to recognize even familiar things (places, people, things). Its one of the reasons they start to get lost even in familiar places. Sometimes things look familiar but just slightly wierd - leading them to think their homes or loved ones have been stolen and replaced with some sort of diabolical copy - which would be funny in a black way if it wasn't so sad.

You need to really talk to your husband about this. It can't go on with you carrying all this load. Its not fair to you, and its not fair to his father. The real job of the family is to love the person, to look out for them, to make sure they are properly cared for, that they are treated with dignity, that they have as much stimulation and the best quality of life achievable. That does not mean the caregiving has to be done by family members, or in the family home. Your husband has to consider that what is best for his father will be what is best for the family overall - since he cannot allow the caregiving to mean that his marriage suffers, that  you are overloaded, that your children have their needs put aside, that everyone is unhappy. This doesn't mean he will be thrilled with the choices he may have to make - but putting his father before everything else is not a viable choice. He has other people who need him to consider them in the equation.

There are a couple of options that may bridge you over to his placement in assisted living. First off, if the funds tied up in his house were freed up, you could hire some help. If you were able to get a housekeeper to take off some of the domestic load or a "sitter" for him even a couple of days a week, it would free you up to have some time to yourself, so you could get things done, perhaps meet some friends or pursue your other interests.

There are also adult daycares - and these can be WONDERFUL programs. They are very stimulating for the person attending - he's out, enjoying some socializing and activities that would be very difficult to provide in a home setting. The best part is, he's out from underfoot for the day, and you get a little time off. Once again, if you could get him into one of those programs 5 days a week, you'd certainly feel much less stressed and wouldn't feel you had to continually entertain and occupy him.  Talk to your local Alzheimer's Association and any seniors organizations to find out what might be available. They have become a very popular option.

Another alternative is for your husband's sister to take him on the weekends, or from after work to the next morning.  This could be combined with adult daycare (i.e. she picks him up end of day, keeps him overnight, and takes him to the daycare in the morning). I think this is only fair. Being single doesn't mean she should be off the hook for helping to care for him. It might be interesting to see how much more empathy she has for your situation if she had him say, two full days a week and overnight three or four. She might be changing her tune about his placement in short order.

It IS time to start seriously shop for assisted living. You have to look at what is available in your area, and visit a few places, talk to their directors of care, figure out costs and options. The good places often have very long waiting lists, so if you wait until things are absolutely in crisis, you will be in trouble - and you will end up accepting placement in a facility that is less than ideal. If you find a good place, get his name on the list, even if you don't think he needs it yet - in six months, when his name comes up, things could be very different. You also have to find a place with progressive care - he is going to get worse and worse, and eventually lose his ability to walk - so try to find a place that can handle him throughout the full spectrum of decline. There would be nothing worse than getting him into a place and discovering in short order they won't keep him if he develops behavior problems, starts to wander, or becomes incontinent. A dedicated, secure dementia unit really is a must, and its best if they have a nursing home attached, so they can keep him when he needs heavy physical care (incontinent and non-ambulatory). This is one disease where it really pays to be a pessimist. You plan for worst case, and then you are ready for anything - and then if his decline is slower than feared, you can be pleasantly surprised you don't need to put your plan in action for a while.   

I've heard time and again how much people fear how their loved one will react about assisted living. My personal experience, and the experience of most people I know is very different. They adapt, and usually much quicker and better than we imagine. They often thrive in assisted living - since everything about the place is so often built around their specialized needs. Your father in law will do just fine. Its really your husband and his sister who will have pangs.  My mother in law was an intensely private, cultured, shy woman. We just dreaded her going to assisted living - and surprise, surprise, she was fine entirely - probably because everywhere was equally confusing for her. She made friends. She participated in activities. I can't tell you how relieved we all were to be able to stop worrying about her all the time. You don't always know how much stress you are under until its over.

However, part of being a grown up means being a flinty eyed realist, with no rose colored glasses. Its getting to the point where you can't cope, where you are coming to resent carrying the whole burden. He has to start looking at other options, and shopping for longer term care - and until a suitable placement is found, he needs to ante up with some of his father's funds - the rainy day your father in law saved for is here now - and pay for some home help or daycare to get some of the load off of you.

A good book you might want to look into is called the 36 Hour Day, by Mace and Rabin, published by Warner. Its in soft back, its inexpensive, and most larger bookstores will carry it (and its available on line). If you only buy one book on Alzheimer's and caregiving, this is the one to invest a few dollars in. Its full of helpful tips and insights.

You are not alone. You are not a bad person, or a selfish person. You are doing the very best you can - and its getting to be too much. Stop kicking yourself for not being super human. Everyone has to be realistic about how much they can take - to do otherwise is really self destructive. The best gift you can give your father in law is a healthy, happy family who are GLAD to see him, who can enrich his life, and bring him pleasure. The day when the best option was care in your home is coming to an end, and while that is sad, it is sad because he is going down hill, not because of anything you did or didn't do.

I'll be thinking of you. Start having a serious talk with your spouse, and then call a family conference with the sister.  They have to understand you are like a piece of wood in one of those stress testing machines - things are building up, and its time to change tactics before something snaps.

Hang in.

Mary Gordon
Toronto