Expert: Mary Gordon - 7/8/2008

Question
My father-in-law has had dementia & parkinson's for about 20 years. He's now 83. The past year he has broken both hips (1 year apart). He can't walk anymore, has trouble feeding himself, can't communicate 90% of the time. He's incontinant and sleeps all the time. My husband & I have taken care of him for 6 years in our home and can't physically do it anymore. Should he go into a nursing home or hospice? We're just so confused about what to do.

Answer
Debbie, there is only one thing only you and your husband can do like no one else, and that is to love him, and look out for his best interests. That does not mean that you need to be the ones changing his sheets, or holding the cup to his lips, or trying to wrangle him onto a bath chair. Anyone with a strong back and a willing heart can do the physical care part.

You have looked after him during the time he may have still known it was his son and daughter in law who were caring for him, and when it may have still mattered to him. Right now, it is unlikely he really has any idea where he is or who he is with. You don't want to get to the point where you resent him. If you wear yourself down, and either of you comes unglued from the stress and effort of full time caregiving, that does nothing positive for him.

If I were you, I'd shop for a good care facility close by, place him in care and go back to doing your real job - brighten his days a bit, in whatever small ways he can still appreciate, keep an eye out that he is well cared for, treated with respect, and kept comfortable and free from pain or upset.

Don't feel guilty. My mother in law survived a full two years beyond the point your father in law is at, and despite good care, it just got worse and worse in terms of how hard it was to watch - she became more and more like an empty shell as she lived on and on.

Emotionally and physically, I know I just couldn't have coped and still managed to be a wife, mother, friend, neighbor, and job holder. I know you must have many people who love you and need your time and attention. Caregiving sneaks up on you and becomes 24/7 - it just consumes your entire life. You have had the courage to admit things are getting to be too much. Its like running a marathon you thought would be a 5K and it turned out to be a 200K. At some point, with the end still not in sight, it is a healthy thing to know your own limits.

Much as your husband loves his father, I know in his heart he knows his father's greatest fear was probably to become a burden to his children. You and your husband have done a wonderful thing. Give yourself permission to look after yourselves. You deserve some happiness, and some time to enjoy your own lives, and look after the other people who need you.

You can always move him back home, or to another facility if the one you find is not meeting his needs or yours. At least look at it as a respite break, while you see how things go.

You don't mention where you live. The rules for qualifying for hospice care vary from place to place. Generally, in the US, the person has to be somewhat further along than your father in law - i.e. they often require that the person has been losing weight, had a couple of infections, and become bedridden to the point where they can't hold up their heads - generally when the expected lifespan of the person is less than 6 months. You will have to do some research on what the rules are where you are.

Palliative care is an option, even in some nursing homes. This is what we opted for with my mother in law. We had a DNR order on her. We also would not have treated any life threatening health issues like cancer or pneumonia beyond pain killers (i.e. no oxygen, no tubes, no artificial feeding, no antibiotics, no midnight trips to the hospital, no invasive diagnostic procedures or treatments etc. ). We wanted her kept out of pain and comfortable and peaceful, but we did not want anything done to extend her life artificially when she reached the point where she had no quality of life at all. The care facility we chose had a conference with us and her doctor, and we laid out our preferences (and hers, as per a living will), and they were prepared to honor them. She actually died from end stage AD - she stopped eating and drinking in the weeks before her death despite every effort to get her to take in some nourishment or liquids.

I'm not sure your father in law is quite at the point where you are ready for palliative care. Certainly you should find out the rules, and have a good talk with his doctor and with the hospice coordinator to find out what your options are. If he qualifies, it is an option, and a very compassionate and supportive one. If not, you should find a care facility you feel comfortable with, and ask about palliative care options as his illness progresses.     

Hang in there. This is the worst part - once the decision is made and you find the right facility, and get him moved, you will start to feel much better. In fact, I'm willing to bet you will look back at this point and wonder how you managed so long.

This is such a heart breaking illness. You have been a wonderful daughter in law.

Mary G.