It was my local chapter of the Alzheimer’s Society Canada that first introduced me to day programmes. The brochure was just another among the many I received. No need to digest it yet. The Adult Day Programme was for ‘later’ when my Bert was much further along in Alzheimer’s world. It never occurred to me that I might need it as much as he did.
Carers are like that. We rarely remember to think of ourselves. Day Programmes were for the loved ones and for ‘down the road’. Let’s leave that until they really need it. At least, I thought so until the day I actually decided to count how many times in one hour I had the following conversation:
“Do you know what? Guess what?” I smile because I know what is coming but I have to answer: “What?” A laugh and: “I love you.” I answer: “I love you too.”
That conversation occurred fifteen times in one hour. I was tired, fed up and the next time the question came, in frustration, I replied: “Ask me that one more time and my answer will be that I hate you!” I was shocked. In consternation I called my counsellor and blurted: “Have you heard of anyone being upset at being told that they are loved?”
I felt so very guilty. Even the caregiver’s mantra: “It is not my loved one, it is the disease,” did not work. This was my Bert really telling me that he loved me. It was the disease that resulted in the incessant repetition. He really did not remember that he had asked me the question five minutes before. Coupled with this was the intense ‘shadowing’. I felt claustrophobic. HELP!
Yes, I needed some respite. So I went through the detailed process and registered at the local Day Programme. The wait list was nine to 18 months! Could I survive? I did, and it was worth the wait. Yet, when my sanity saving call came I panicked. What will Bert do without me for six or seven hours in a day?
This is my paean to the providers and staff of adult day programmes everywhere. My greatest appreciation is that day programmes are for both patient and caregiver. Two days per week from 9 a.m. to 4 p.m. my Bert is in a non-judgemental environment of acceptance where he is both mentally and physically stimulated. He is socially engaged in programmes designed specifically for adults with dementia.
Bert is with professional staff and volunteers of the highest calibre who care with love. He receives a hot, well balanced lunch and snacks. The staff will tailor the activities to suit the capabilities of the group and at times to the individual. Music, art, Tai chi, games, crafts and relaxation time, one on one conversation and hugs are all on the agenda. It is a cheerful atmosphere, each one called by name and greeted with genuine warmth.
For the caregiver, in addition to the benefits for your loved ones are the benefits for YOU. As a caregiver I can get to medical appointments, do chores, go to the hairdressers, shop, have a coffee with friends, play Mah jong, read, keep in touch with friends via telephone or email and go the bathroom without worry and without my shadow. I can breathe. What a luxury to have a little time for self.
Was it easy? Not at all. Dementia and separation anxiety go hand in hand. There were many mornings I sat in my car and wept. “Why are you leaving me here? Are you coming to pick me up? What time? I want to be with you, I miss you. Why can’t I stay home?”
Now I do not have to fight world war three to get my Bert ready for his ‘club’. On delivery he gets four kisses that say he will see me at 4 o’clock. The greeting staff member may count along. Some days he is laughing when I pick him up. Some days the anxiety is there. He loves his club but he loves me more. He is so happy when he sees me. Thanks to the day programme I am happy to see him too.
The Meander: Many times you will get the question: “How do you do it?” Best answer: “With a lot of help”. Getting your loved one into an Adult Day Programme is among the best help you can get. A good adult day programme is an environment of acceptance providing care and support for both patient and carers. For a little while you can get away from living in Alzheimer’s world.
“You know what?” “Guess what?” Yes, still it comes, but I no longer count!