“Hi. Love reading your blog. Thank you for all the great tips. You are sharing your experiences as a caregiver and in doing so you are helping us too. So much of what you write is just what I am going through. I learn a lot from you and it makes me realize I am not alone at this very difficult time.”
“Thank you. Yes, the road is long and difficult. It can be hard to find anything that brings joy especially on those trying days when nothing seems to go as you would wish.”
A group of caregivers were sharing experiences and tips about what worked for them in a variety of situations as they cared for a loved one. I was eager to hear of the solutions which were very creative. Topics ranged from encouraging your loved one to bathe with everyone wondering why most dementia patients seemed to be afraid of water, to that often discussed ‘shadowing’. We also discussed the missteps that tripped us up every now and then.
My story was in regard to my Bert talking to the photograph of his mother every night. One night he came from the room and said: “I love you, Mama.” I laughed and said: “I am not your Mama. I am your wife.” It took me an hour or more to calm him and to convince him that I was not rejecting him. My Bert looked at me with tears and said: “I know you are my wife, but you are my Mama too. You look after me.”
Apparently, that confusion in relationships was not specific to me. There were fathers who were jealous of sons who hugged their mothers; A father who decided his daughter was his sister and/ or wife; A husband who thought his wife was his personal support helper and the helper his wife. Come to think of it that is not too far off the mark. They were both caring for him.
One spoke about the mistake she made when she decided to have her mother go to the Adult Day Programme for a second day in the week. Oh, that got a very animated response. We all had had experiences of introducing a programme to our loved one. Nothing was wrong with the programme just that you are not there. Her mistake was to prepare her mother for the new routine by telling her she would be going to her special club now for two days not one. That she would have an extra day to be with friends, do some fun stuff and have a great time with the other club members.
Sounds good, except her mother only caught on to ‘extra day’. Mother was livid. Why was she being ‘sent away’ for an extra day? Did her daughter not want her around? Was she such a bother? The group got a most graphic recounting of the battle which was made worse when on arriving at the programme, mother asked her if this was the ‘extra day’ and was told that it was.
I interrupted the narrative to ask: “Why did you tell her it was an extra day in the first place?” She laughed and answered: “I had not yet read your ‘Therapeutic Lying’ post nor become adept at it. It was early in the game for me.”
I understood, totally. I too, knew nothing about Alzheimer’s disease but I learned with experience. It took me a while but I found out that sometimes the best way to protect and care for my Bert was by the sin of omission. When I added a second ‘club’ day, I said nothing about it. We just went on our usual day and two days later we went to his ‘club’ again. It helped that Bert was at the stage where days, dates, time were inconsequential. I did need to reassure him that I would be there to pick him up and we would go home together. After nearly two years in a Day Programme, I must promise him that I will come for him at 4 p.m. and then we seal that bargain with four little kisses. When I pick him up his smile could light a small town.
If my experience can help any other caregiver in some small way, I will consider that a special reward.
The Meander: Our loved ones trust us implicitly. We are their everything, literally. We agonize and experience stress when we know our behaviour is not quite what it should be. That is the real world. The answer for the caregiver is to remember that we have to live for two, act for two, do what is best for two. All our loved ones want is to feel safe, protected, and loved.