Expert: Mary Gordon - 6/14/2007

Question
Hi my mother has dementia she is does not want to eat anymore and i have to tell her to drink i have terrible trouble washing her because in the morning she cant sit up and it take me ages to sit her up then i have to try to get her on her feet everyday its proving more difficult she is incontinence urine and bowel it is breaking my heart but i don't think i can cope with much more what can i do if i cant get her up to change her incontinence pads and to wash her is she at the last stage of dementia she has had to urine infection but that was when she could get up and also is now getting bed sores.
Every day i make breakfast dinner and tea but she just plays with it making it in to a pile also she has to keep folding everything up in to parcels things like apron tissues the bed clothes i am getting so tired now and i now she is too do you think there is much more to her suffering

Answer
Hi Jan - its impossible to tell. My mother in law, for example, lived two years after she stopped walking. She was incontinent, couldn't do anything for herself, couldn't speak, didn't know us, was hand fed, and spent her days propped in a chair or in bed. I won't lie to you - it was brutal, and she lived on long after prayers were made for God to take her home.  

I know what you are feeling - you wonder how much worse it can get, and it just keeps getting more difficult - and you wonder how much longer it can go on, and it seems to have no end.  She may live for years.

Right now, the crisis is not her - it's you. You can't go on like this. Your job is to love her and look out for her, but that doesn't mean you have to look after her yourself. If you burn out, if you become unable to carry on because of physical collapse or emotional stress leading to illness - no one wins. She needs you in one piece - and you have to give yourself a break. Give yourself permission to contemplate other alternatives. Are there family members, church members, neighbours, or other volunteers who can pitch in. Can you hire some help? Are there government programs that could supply a some assistance, like a visiting homemaker or nurse? Could you try a temporary respite placement to give yourself a break (i.e. so you can have a holiday)?  

Heart and soul, I think its time to seriously look at the option of longer term placement. You can't continue - and I know your mother wouldn't have wanted this to have such a toll on you.

Nursing homes have staff who come in fresh in the morning, put in their shift and then get to go home. They can still have social lives and hobbies and healthy families. They get to go on vacation and not feel guilty for wanting some time off. Nursing home staff also have an advantage in that they have no history with the person, so are not consumed with grief and guilt - they can take the person as they are, and not feel so much pain about the situation. Nursing homes also have specialized equipment to make it easier to manage a person with limited mobility - they have hoists, and "drive in" showers, and grab bars, and a commercial laundry. They have access to special mattresses that can help with bedsores. They also have the patience to hand feed - it's hard not to feel frustrated and fed up with someone when you know and love - but they don't carry that weight.  

You are starting to resent the burden - I can hear your exhaustion. Your job is not to do all this yourself - so don't feel guilty. You need to unload some of this, before you make yourself ill.  You've got to find another way - so start with your local Alzheimer's support association, or health visitor or social worker and start looking at options in your area.

I'm so, so sorry you are going through this. You didn't deserve this, and I know you have done the very best you can - you've given and given and given, and now you need some help. Your mother's heart would be broken if she knew the state you were in - whatever promises you made to her, or to yourself - its time to let go of some of this and let others step in. Then you can go back to being her daughter, holding her hand, looking out for her and seeing that she's treated with dignity, doing what you can to improve her quality of life - but not struggling with all the heavy physical work yourself.

You've been a wonderful daughter - now let yourself do the right thing. Your mother needs you healthy and rested.

Thinking of you

Mary G.