There will be bad days! Maybe sleepless nights! Maybe feelings of abandonment or isolation! Whatever the cause, you can expect a bad day to come along and you need to handle those times as well as the good or the “not so bad” days.
I know that being a caregiver brings many days when you simply don’t know what to do or how to handle situations that can, and definitely will, arise. And, for those of you who may have now moved out of an active care giver role, you can still expect to have difficult days or nights.
When I had to place my husband in a care facility I realized that removing him from our home didn’t remove my worry or my need to still be a caregiver! Not at all…..now there was the additional worry about his wellbeing since I was not with him all the time and therefore didn’t KNOW what was happening with him. Was he comfortable? Was he hungry? Was he safe? Was he happy? Was he lonely or frightened?
And I worried about whether his physical needs were being taken care of….was he changed when he had an accident? Did someone help him with the toilet? Were his clothes changed regularly? And I wondered…did he get his meds when he was supposed to? There was suddenly another whole new layer of worries for me.
One of the things the facility professionals told me was that now I could be a wife again and not a caregiver. Well that sounded nice but I knew in my heart that I would always be both a wife and a caregiver; I would always function in one role or the other as the situation warranted. I realized that now I was also his advocate and would function in that role consistently.
It was my duty to ensure that he was treated with care and respect; that he was kept clean and well fed; that his health was monitored and that he was encouraged to participate in social activities that might possible stimulate his brain and push away the terrors associated with Alzheimer’s disease or with any form of dementia.
So, back to coping with bad days……No one solution will work for everyone. You’ll need to find what works best for you. But I will share some of my techniques.
When I can’t sleep I frequently play Gin or Euchre on my I-pad for however long it takes me to feel sleepy. I also play word games and do jigsaw puzzles. I don’t read because that stimulates my mind and puts images in my head that can create even more reasons to stay awake.
If I am haunted by sad memories and my feelings are raw, I sometimes write those feelings down in my journal. It helps just to verbalize and get those thoughts and feelings out; just writing it down often soothes my soul.
I have found that writing a letter to my husband helps me to cope with what is often an overwhelming feeling of sadness. I can pour out my feelings and my heart’s wishes and I can share my grief with him in that letter.
I’d like to share with you the first letter I wrote to him:
Tuesday, October 8, 2019
Dear Al: You’ve been gone for about 5 and 1/2 months and I miss you even more. I just never considered that I’d live along again! I guess I just thought we’d both live to be really old and then, when one of us died, the other would be OK on their own for whatever time they had left. Really I guess I thought we’d be so old then that it wouldn’t matter. Crazy, huh?
I go to the cemetery at least 2 times a week – I sit on the bench, often lay my head on your monument and I talk to you. I sometimes cry. It seems to comfort me, just being there.
Some days I hear a song that I remember dancing to and I just close my eyes and sway with the music. I wish for those moments again. Sometimes I remember how your body felt so close to mine and I can almost feel your breath on my face or my ear. I feel your warm hand holding mine and also remember how you’d squeeze my hand when the music stopped and how your hand felt on my back as we walked back to our table. We felt so much love flow between us.
There are so many memories that I treasure but there are also regrets for the time I may not have spent with you because I went to Stock Club, Book Club, etc. I wish I could have those hours back!
I loved you the first time I saw you and I loved your even more the last time I saw your face. You were the love of my life. I know you loved me too. We were so good together whether working, playing of just sitting quietly. I miss your wit, your big laugh, your smile, your silliness and your conversations.
Love always, Jenny
Care Giving - Risks & Rewards 