Dementia care: How to get support from friends and family

This is an edited extract from A Carer’s Guide: Helping you care for someone with Alzheimer’s or other dementias by Rosette Teitel and Sharon Wall is reproduced with the permission of Finch Publishing.

The entertainment media have given us an idealised version of family life. In reality, things don’t work out as easily as they do on TV and in movies.

If unresolved issues create unpleasant undercurrents at gatherings such as Christmas, they really come to the surface during a family crisis.

Having a family member stricken with dementia, be it Alzheimer’s or another type, certainly qualifies as a crisis.

Family

One appreciates the concern and assistance of distant family members, but one expects the support of children or siblings. Grown children may be adults, but in their hearts they are still a parent’s baby. That is partly why it can be difficult for healthy spouse carers to get adequate help from the child of a person with dementia.

One would think that a child who loves his stricken parent would want to do as much as possible for her. If the loving carer is overwhelmed, shouldn’t a child want to shoulder some of the burden? The answers are far too often in the negative. Old sibling rivalry and just plain fear take over. No matter how concerned a child may be, she often has trouble dealing with seeing a parent deteriorate mentally.

That leaves the carer to handle the daily mini-crises that arise once a person’s dementia has reached a more advanced stage.

The greatest frustration was being unable to comprehend how an apparently loving child could turn her back on you at a time of such obvious need. Some children called once a week and kept the conversation short and superficial; others didn’t call at all. This is not to say that there aren’t children who come running to help.

What about the impaired person’s siblings? If they can, they will be more likely to respond. However, their own health and location may make direct assistance impossible. Although they may phone fairly frequently and share some of the carer’s feelings, they too may be more threatened by the illness than moved to come to the rescue. Their overriding concern, consciously or unconsciously, is whether or not they will be stricken next.

Not everyone can deal with the mental deterioration of a stranger, let alone that of a beloved family member. The carer therefore has to work hard at being understanding at the very time when he or she desperately needs understanding.

Friends

Not everyone has siblings available. The next step is turning to friends. Even longtime friends also cannot always deal with the situation. It can come as a shock when good friends just turn their backs. They also feel threatened and upset, but they don’t have family obligations to push them to be helpful. However, since friends are chosen and cultivated rather than born, their lack of support is equally devastating. They just may not want to deal with the limitations of a handicapped person in their midst. They would therefore prefer not to go out with you any more, or even visit.

Since people are uncomfortable with a person with dementia, they become uncomfortable with the carer too. It’s a matter of ignorance. They don’t know what to do with this person who is no longer the one they knew. Instead of asking questions so that they can deal with it, they ignore the situation, which is painful for everyone. The truth is that those who have not been touched by a dementing illness really don’t know what to say, or even whether they should say anything. They certainly don’t know what to do.

There are, of course, friends who are able to deal with the situation and who come through more than you dreamed possible. Those are the people to cherish, both during the nightmare and after it is over. However, this does not mean that you completely eliminate from your life those who just couldn’t be available for you. Forgiveness is therapeutic. If you reach out to those who don’t know how to reach out to you, you may get some heartwarming results.

To see more details on this book or to order, visit: Finch Publishing