I recently heard a talk about prolonged stages of grief for caretakers of Dementia. Every day you see a loved one lose a little bit and every day another part of you slips away. Right now I can recite Kubler-Ross by heart –Denial, Bargaining, Anger, Depression, Acceptance. I foolishly thought this would be like dealing with death of my parents or sister. It is not.
I think what stops this is the daily contact and gradual deterioration. I keep expecting it to stabilize or even get better and it doesn’t. I initially thought this was just a part of aging like forgetting words or where you placed something. I would make excuses or jokes about it. Physical problems like walking slower I thought just needed encouragement to move quicker. I would listen to my sons about her problems maneuvering on stairs and danger of falling. They began suggesting a move into senior centers in December/January. We even visited one with them and had lunch there. I kept saying we could stay in our home, and we could manage this. Over the last nine months I have had to change. I agreed to visit other senior centers. I would always find excuses like cost or loss of freedom or problems with moving from townhouse to a one- or two-bedroom apartment. We finally put a deposit on a nice apartment with independent living. We even went out and began measuring what to bring.
Then reality struck again. My wife began having increasing problems with memory and physical activities. Her primary care physician now classified her as severe and said independent living, or assisted living would not be enough. We had our deposit returned and she is now on a wait list for a memory care placement.
If I have time, I begin to think about myself. I think I worked thru Denial and Bargaining, but right now I am on the elevator between Depression and Anger. I get really irritated at something my wife does. I raise my voice and then feel overwhelming Depression until the Anger surfaces again. I will wake up at night and feel guilty about placing her in memory care. Friends and family all want to know how I am doing. I always say fine, and that my focus is my wife.
What is really hard to accept is that the girl I married is gone .She doesn’t remember much of the past. I will bring up something and it’s obvious she doesn’t recall it. She has trouble remembering her sons names and really can’t remember her grandchildren. She recognizes them if when sees them, but still has trouble with their names. I know this is the process of the disease and I know it will continue to get worse. What is hard is trying to remain positive with her. She doesn’t smile much any more. I used to say that she made me laugh at least once every day. Now she doesn’t laugh at anything I say and prefers to sleep rather than talk to me.
I keep remembering that this is the girl I met fifty-four years ago and have been married to for fifty-two years. We had a good life and went thru raising two sons, watching loved ones die, having grandchildren, going on wonderful vacations and all of the other events of a long marriage. We have both had reasonably good health and no real external crises in our lives. I know I need to keep focusing on positives, but the reality is that I really wasn’t prepared for this. I don’t know if anyone could be.
I think Kubler Ross’s stage of Acceptance is just a myth for me right now. This may be due to our current life being so fluid and unpredictable. I know that after my parents death the grief passed after awhile. My grandmother from Ireland never let the death of her husband pass. She wanted to go to the cemetery weekly and would say two rosaries a day for him. This might have been because he died suddenly and she didn’t have a chance to say goodbye. I keep thinking that I am saying goodbye every day and then get up and start another day. I treasure the good days but they are getting harder to find. Maybe today will be different.