My husband has dementia and I feel abandoned by my family. The Guardian.

By Annalisa Barbieri, October 23, 2015

Dear Annalisa

My husband was diagnosed with dementia three years ago. He is now in respite care, which will turn to permanent care as I am exhausted.

We have a large family spread throughout the country. We stay in touch constantly and we regularly see the children who live locally. The men have helped me in a caring capacity, mainly “babysitting”. This past year, contact with my local daughter has consisted mainly of me visiting her and her family with my husband, until his poor mobility made it hard and he went into respite.

Until a year ago, my daughter visited regularly with her children – then these visits, except for high days and holidays, stopped. It started when she had an operation and couldn’t drive and now she doesn’t have a car. As we live in different areas, bus travel is complicated and she is now heavily pregnant. As one trip a week to see her has been hard for me, even an occasional visit from her would have made our awful situation a little more bearable. I still visit each week as we are close. I don’t want to be a needy mum, but I am. I don’t want to burden her.

Her second husband is close to his parents, but though he is polite to me he offers no help. In fact, I feel closer to his parents than I do to him. My grandson (from my daughter’s first marriage) has been in trouble recently. I am being supportive to him and hope that the situation will improve soon.

I have organised counselling for myself and I should be able to discuss my feelings.

Will I be able to restore the relationship with my daughter without being needy? I feel that my home is a sad, empty shell at times.

My daughter visits my husband in the care home, which is good, but last week I asked her to pop in when she was visiting her friend nearby and she did, but I had to ask. I need some clarity in my life – please advise me.

You are going through a really hard time and I feel for you. You have a large and what sounds like a loving family and it must feel as if everything is changing and, significantly, that all the roles are changing. This is extremely destabilising. The juxtaposition of how your household used to be and how it is now must be very poignant. I’m glad you are getting counselling – that is wise and will really support you. I’ll also put some links at the bottom, which you may find useful.

It’s not unusual when parents get frail or ill for the adult children to almost pull away, out of fear

You say you don’t want to be needy, but it’s all right to be needy at times. I think your daughter is probably needy too, but in a different way. It’s not unusual when parents get older and frail or ill for the adult children to almost pull away out of fear. It’s hard for children to think of their parents as anything other than capable and well. Adult children can actually start demanding even more of their parents in an attempt to convince themselves that Mum/Dad are still there for them and still able to look after the child that still exists in all of us where our parents are concerned.

In other words, you are coping with a lot, but so is your daughter and it may be useful for you to see things from her point of view because it may help you deal with the tremendous amount you have going on, too.

In addition, your daughter is also now an adult with adult responsibilities. She has probably had the baby since you wrote, so she has an extra child to take care of, a teenager who has been in trouble, no car, a father with dementia and a mother who needs (understandably) emotional support.

I’m not sure if she is your only daughter – you don’t say, but refer to her as your local daughter, which might indicate she has a sister. Could you spread the load you’d like her to bear, between your other children, even if they are sons? Sons can cope with more than babysitting.

Where does your daughter fit into the family – is she the youngest or the oldest and does she signify anything in particular for you? I wonder if you are able to hone in on what – in regard to your daughter – you are afraid of? Could you tell her how you feel?

I also wonder if you could do the opposite of what you feel you need – instead of asking her for help, can you offer to help her (I’m not saying you don’t, already) with the new baby, say?

You won’t always feel like this. There will be times when the roles change again and you will get a new normal. But when we go through big life “force fields” it can take a long time to find our feet again in our new landscape.

alzheimers.org.uk, carersuk.org

This article first appeared in The Guardian Family section on 23 October 2015.