I thought I would share with you private notes that are circulated between some of us who are CBD sufferers and their caregivers / spouses / families.
It will hopefully give you a better insight into the world of those of us who battle CBD everyday!
I have removed names for obvious reasons!
My husband seems to want to go to bed earlier and earlier. I try to keep him up to about 8:00 p.m. at least and he sleeps until about 6:00 a.m. If he stays up much later then he seems to get agitated and then it’s difficult for me to do all the get to bed routine and transfer him safely. We had a very difficult evening earlier this week because he was angry that I had pushed him in trying to keep him safe…..similar to what V described. So he agreed that I can get someone in several times a week in the evening to do the routine to get him to bed. Tonite is our second time. With whatever time we still have together as a couple, I would like to have a good relationship and be more of a wife than just a caregiver. I love when I can get him to laugh or smile or see a little twinkle in his eyes. Doesn’t happen often enough. C’s issues are more movement related, diminished speech capabilities and now swallowing issues. Cognitive is slower but not terrible. He just can’t get out the words he wants to say. We all know what a thief this disease is for our loved ones and all of us as well. My husband is ready to have it over and there are days thaT I feel the same way……but then I get real sad. Janet Edmunson recently did a webinar on Anticipatory Grief……and that’s where I am and probably many of you are as well. Perhaps Janet or Robin could provide a link for the webinar for any of you interested.
My husband stopped using his ipad about 4 months ago. He doesn’t have the control of his left hand very much anymore and the right hand is “alien” and of no use. He can still get some words out, better in the morning and clearer during the night!