Living with a person who has dementia

Talking with a group of carers of people living with dementia today. Ordinary people faced with a journey of up to a decade of struggle with difficulty that they did not volunteer for or expect. Most taken by those facing support of a spouse with early onset dementia – young ones at home, Dad behaving oddly, workmates noticing, finally his golfing partner and doctor coaxes him to come for an assessment. Now they have a name for the oddness and can sort out what the next decade or more will hold. Plans for retirement and dreams of an old age together are ashes in her mind.

They want to know how to deal with the lack of motivation, the refusal to shower, the odd eating habits that are so new and confusing for the children. They are teenagers and don’t understand why Dad is embarrassing them more than usual. he seems oblivious. He is unaware that his behaviour has caused a seismic event in the lives of his wife and children. And he cannot help them for the first time in his life when they need him the most.

She is relieved when I say its OK to let him sit if that is what he wants. Make sure he has a balance of exercise and rest but don’t impose activity on him when all he wants to do is sit. His amotivation is causing him to sit and be difficult to get going,resistant to her urgings to talk, to walk, to go out together. She knows it would be good form him but her efforts are exhausting her. Now she can let him sit if that is what he wants to do. Its a matter of balance and not imposing her ideas of what he should be doing when all it does is create distress for her and resistance in him.

Another has a husband how goes to the post box and the back gate several times a day. Is he unsafe? Is she worried about him? Not now but it used to make her mad angry with him. Now its OK.

One won’t have a shower. Is he incontinent? or does he smell? or is his skin breaking down? If not then consider not pushing him to have a daily shower. Maybe change his clothes each day and check his skin if possible as you go. But don’t push the issue. Pick your battles. The goal is hygiene, so think about a way to achieve that . Maybe a basin wash or one of the newer chemical solutions that mean he doesn’t have to have water on his skin if that is what he doesn’t like.

If the issue is physical safety then you need to act. ie. If the person is walking into traffic or about to use a knife or machinery unsafely you have to intervene. But if it is not that urgent, be strategic and pull back, let the moment pass and think coolly about it. Perhaps talk to someone else about it. And then respond.

I hope some of this helps. Most of this comes from their collective wisdom.

If oyu have ideas yourself please share them here.