Losing loved ones to dementia

So someone important to you has dementia. The person who you love is taking a backward step in the closeness the two of you used to love. The person with dementia (let’s call her Eileen) is scared because her life is changing before her very own eyes. She can’t stop it. Eileen no longer has the comfort of being in full control of her own needs and wants.

And what about you? You’re feeling pushed out of that all-important loving relationship. You’re trying to keep it how it has always been but it’s becoming more difficult every day. That close relationship is becoming a patient-carer duty, instead of a chinwag of daily events and thoughts.

Eileen seems to have regressed to being an eight–year–old. She feels safer there. In that ‘real to her’ world, her mother and father, as well as her siblings, are still with her. For her, those happenings are as clear to her as they were back then.

You’re struggling to get your head around this. Maybe your relationship with Eileen wasn’t around when she was eight. As husband or friend, she doesn’t recognise you; you came into her life later and eight-year-old Eileen has pushed all of her later years to one side.

Eileen is confused and you are gutted with pain.

What do you do? Do you correct Eileen’s ‘mistakes’ to bring her back into your world of today, or do you move into her reality of life back then?

Communication will be so difficult, as Eileen will have only the communication vocabulary and tools available to her at the age of eight.

Your life will gradually change and not necessarily for the better. You might change things in your diary to be there for Eileen. You may go part-time at work to find time to honour your loved one. Time for friends may slide away and you may then bear a grudge for what (to you) is expected of you. Family members may have differences of opinion on Eileen’s future and offer little support to the evolving picture.

Should Eileen lose her home and go into a care environment? You’re now going to judge yourself (how could you allow this to happen to her?). For some (and maybe for you), there’s a sense of relief when Eileen moves into care. With a clear and ‘non-judgemental (of yourself)’ mind, you’d be able to weigh up that this is the safest place for Eileen.

Imagine. 24 hour care. Your life can rebuild itself and any grudges you felt will crawl back to where they came from.

But what about you during this period of anxiety? You’re not the only one, y’know. Many others are going through the same self-debilitating torment and beating themselves up, while they try to work through this major life-changing event.

As a facilitator of such groups, I know that getting together with ‘people in the same boat’ can help you come to peace with yourself. It allows group members to get things off their chest. It also allows members of such a group to exchange useful information about anything whatsoever, ranging from special aids to daily life, games to support memory and to benefits and services available.

Knowing you’re not unique in your self-critical thoughts brings about a feeling of calm and allows you to accept that you are indeed fulfilling your feeling of love towards that oh-so-important person in your life.

Well done you.