Expert: Mary Gordon - 11/22/2010

Question
My mother is 59 and in the final stage of alzheimers.  This week she took a bad fall at the nursing home and has a nice head laceration.  She will now be in a wheelchair constantly.  My concern is that when the incident happened or when the nurse is cleaning the wound, she shows no signs of pain, which the nurse says is not normal for this size of wound.  I'm told that normally even if the patient does not speek anymore that they still show facial expressions...it is not the case with my mother.  If she cannot not tell us when she's in pain and she cannot show us when she's in pain, how will we be able to help her?  

I'm an only child and a single mother of 4 (all between the ages of 11 and 16).  Sometimes I find it very difficult to keep the balance and I feel guilty for not going to see her as often as I should.  The decline is so fast that if I only go and visit once a week there always seems to be a drastic change in her.  How does a person keep a healthy balance with this horrid disease?

Answer
Hi Chantal

I know this is heart breaking, but there's really nothing you can do about it except for love her and look out for her - which is what you are doing. She has a devastating neurological disease. It's crummy, it's unfair, neither of you deserve this - but it is what it is, and it is not your fault. Nor can you do anything more to help her than what you are doing.

The nurse is not correct in saying that facial expressions remain intact. It is true that sometimes the person will express pain by being agitated, grimacing, or moaning. However, not even that is always the case, which makes it very hard to know what the person is experiencing. You've seen it yourself if your mother is in a care facility - many people in later AD have expressionless faces - even when they are yelling and seem upset, their face can be like a mask - blank eyes and all.  You can't go by the look on their face to tell if they are in pain - or feeling any other sensation or emotion.

I recall my mother in law taking a fall in mid AD and having terrible bruises on her hand and arm, and it looked as though it should have been very painful - but it didn't seem to bother her at all - she seemed completely unaware of her injury. Either she couldn't feel pain normally due to brain damage, or if she felt something, she didn't know what it was.  In some ways that was a good thing, since like you, what was important to us was that she be comfortable and free of distress. She was eating and sleeping as normal (by that I mean "normal" for the stage of her disease), so we had to assume it really wasn't paining her.  

All you can do is what you are doing. Watch her closely and deal with external signs and symptoms as clues to what she may feel - for example, if her sleeping patterns are disturbed, or she is unusually agitated, hunched over or making unusual noises - those might be signs she's hurting and needs some pain relief.

I do understand how helpless you feel. My husband was also an only child, and we had three children during the time my mother in law was declining. When she died, we had an 8 year old, and 5 year old and 1 year old. It was very difficult to balance everyone's needs - but the children had to come first. Your first duty is always to your children - and you and I both know that that is what your mother would tell you if she was well enough to recognize her circumstances. There is so little you can do for your poor mother, and she is not really aware of where she is or who she is with. Her life has become a big swirl, with no past and no future, and it is very unlikely that she realizes what has happened to her. The merciful thing is she can't torture herself with fears or regrets. She's like a baby, just living in the now.

By later AD, when my mother in law could still talk, we found most of the time she'd retreated  in time to her younger days. She started signing her maiden name, had forgotten she'd been married, wanted to go home to her parents house where she thought her parents and sisters were living. I don't think she had any idea she was an older lady - and given that, it isn't surprising she got hazy about who we were. If you don't really remember getting married and having children, your son might be hard to place! On a good day, she thought her son might be her husband and I turned into her sister. At least she seemed to know we were some sort of familiar looking relatives.

We could have been there daily and she wouldn't have known we had been there. In the earlier stages she was in a rehab facility one for a while after a hip break. We lived close by and we were there every single day, sometimes more than once, and I often brought our oldest who was a toddler - but she would complain we'd never come to see her. We'd see a card or flowers and know another friend or family member had come to see her, and she'd have no recollection they'd been there at all.

You are doing what you can to make sure she is well looked after. Don't beat yourself up. This disease is a horrible marathon for a family - it's slow, cruel and grueling and so draining emotionally. You have to pace yourself since your children need you most, and everything possible is already being done for your poor mother. Look after yourself - no one is helped if you wear yourself out with stress and worry. You've got a huge load on you.   

I wish I had some better words to help you with this. Hang in there.

Mary