When a loved one has dementia, you assume the role of caregiver relatively gradually. In contrast, one generally stops being a caregiver suddenly. For more than a decade, my husband’s illness had been omnipresent – impacting every aspect of my life. When it was over, I felt a strange void in my life. Lately I have talked to several people who are struggling to adjust to life after their caregiving role is over. I can’t presume to give advice to anyone about their “life after”– but here a few things that I have learned over the past 3 and half years:
- The primary emotion I felt when it was over was relief rather than grief. And I decided not to feel guilty about that.
- I have had to wean myself from being a caregiver: I decided to help a friend who was recovering from major surgery and was going to need some prolonged – but gradually decreasing – help. I found great satisfaction in helping someone regain their independence. Becoming unnecessary as a caregiver was a healthy exercise for me. I have to find an identity other than being a caregiver.
- I am reconnecting with friends: As a loved one’s dementia progresses, you see fewer people and go fewer places until one day you find yourself completely isolated from the rest of the world. I’m gradually re-creating my circle of friends. I can’t allow my children to be my primary social outlet. I am also getting used to the fact that most of the people around me are married.
- I must maintain an attitude of thankfulness: In particular, I can’t allow myself to envy the couples around me. Every time I see a couple, I ask God to give them a long, healthy, and joyful life together.
- I have had to relearn the art of conversation: Towards the end of my husband’s journey with dementia, my conversational style resembled that of a trained parrot – repeating the same short phrases over and over. It took a while for me to remember how to engage in a dialogue.
- I’m developing amnesia for the unhappy parts of the past: Most of the bad stuff already feels like a bad dream that happened to someone else. I choose to think about the good things.
- I am learning to accept the fact that some loneliness goes with the territory. Dementia caregiving is lonely, because you lose your partner’s companionship long before the end. However, when you are busy caregiving, you are too busy and exhausted to think about being lonely. For two years afterwards, I was busy moving and digging out of the financial chaos. Three and a half years later, I’ve finally settled into the new normal. Yes, sometimes it’s lonely. I need to accept that.
- I need to remember to just “Do the next thing.” To quote my very wise Mother, “Do not just sit there.” I started with making long-delayed doctors’ appointments for myself and I went to the dentist.
- I must aggressively fight the “battlefield of the mind.” Our thoughts control our feelings – not the other way around. I have to be careful what I let myself think about. I don’t expose myself to music, books or movies that inspire melancholy or lonely thoughts. Given the content of most of today’s entertainment, that means I almost never watch TV and about the only movies I watch are classic oldies. I do listen to a lot of wholesome audiobooks and I keep a great book by my bed.
- I must decide to be happy today – and not to think too much about the future. The future will take care of itself.