I try to count my blessings every day — all the wonderful things we have that make our life easy. Good medicare, and good doctors, wonderful help with caregiving, a nice house, good friends and all the food we feel like eating. This beautiful valley to live in. So many things to be thankful for.
But at the same time, this morning i am obsessed with everything I have given up to this disease, and it is not a small list. Start with our home, our huge market garden, my island community with all its warts and flowers, vast chunks of my lifework (career) gone, the travelling I so enjoyed, both with my partner and, even more, alone. Many of my friendships left stagnant and untended. Most of the stuff we did together for recreation like fishing, exploring, hiking, camping — no, actually all of it now that a 5 block walk has become to him , “Five miles.” My solitude which nourished my soul. Even my privacy. The ability to go for a short walk or take a long shower, or run off to a friend’s house for a quick coffee and a gossip. Sacrificed. All sacrificed for this disease.
Sacrificed while my 80-year-old life partner asks, again, for me to show him how to read a clock. Again and again.
With no end in sight. No relief. No cure. Again and again and again.
Multiply this cost by the millions and millions of families afflicted by this disease. Unimaginable.
Well, the caregiver has come, so now I think I WILL go out for a walk. One small thing that might make a big difference.
I feel a bit daft. Here I have been muttering around about the need for more training for dementia care and I just found this site which offers all kinds of resources and specializes in training aides at Long term care institutions. There is a whack of stuff there that we can use as home caregivers or to help train our people who are helping us, whether paid or family-and-friends. They have an extensive library http://www.crisisprevention.com/Resources/Article-Library/Dementia-Care-Specialists-Articles and also a lovely little e-book on communication tips, which I think is a good first step.
On top of this new discovery, I have also found out that the BC government has a registry site for care workers, the British Columbia Care Aide and Community Health Worker Registry, (http://www.cachwr.bc.ca/Home.aspx)
which requires employers to report abuses, and to hire only registered health care workers. Who knew!
Wanted Caregiver/Companion: for 80-year-old man living at home with mixed dementia. Likes music and outings but not crowds (or jazz!) Usually gentle, polite, appreciative, nostalgic and repetitive. Requirements: experience with Alzheimer’s or other dementias, including completion of some workshops from the Alz Society or equivalent; experience as personal care aide; driver’s license; references; background check; sense of humour, imagination, and patience. Part-time, including weekends and mornings, light cooking, light housekeeping, flexible hours. Phone 250-339-6117 or email email@example.com
We had a meltdown last week, complete with the usual “You took my driver’s license” and threats to drive anyway etc. It quickly dissolved after a while in mutters of “Well, I don’t know what to do, I love you [anyway!]”
Since, I have been wondering if it makes sense to try to analyse the “cause and effect,” or if these meltdowns are just going to brew out of nowhere and catch one unaware anyway no matter how careful one is with the environment.
In this case, I think the factors were:
1) I actually took a day off to go to a very interesting meeting with a friend, and came home refreshed and happy about the possibility of returning to some of my old activities. My spouse had enjoyed the day with his caregiver, but was muttering about the “zoo” at the pool where they had gone to pick up her child. (He just cannot handle any kind of noisy complicated scene at all.)
2) The next morning we had gone for a drive and done several errands, even though he was so “tired” he just waited in the car, and he had come home exhausted.
3) I had walked in the house, and instead of tending to his needs, had immediately gone into some excited catching up with a work colleague, ignoring him as his repetitious questions got more and more urgent.
Result? Meltdown. Preventable? Maybe, It could be that his sensitivity to upset and commotion is getting higher and higher as the disease worsens.