My loved one has Alzheimer's, and as one of many caregivers, I can say that caring for my loved one has been a journey of plains and plateaus. During the "plains" life goes along without big issues, but then we hit a plateau when we have to revisit care as we know it, and revise.
One such rise in care a few years ago was during a walk. Up until that moment, my loved one could walk quite a distance, but then on that day and that particular walk, his legs simply didn't work as well. That spelled a change in the kinds of walks we took and the kinds of supports we provided during those walks.
Just this week there was another rise in care exposed. My loved one is unable to report aches and pains that are significant. That means caregivers have to be more observant in order to notice significant care needs. So now as part of the care routine, we'll add an overall check to see if there's any new physical or psychological need revealed, and then if a new need does arise, we'll respond with the needed care which might be a visit to the doctor, new medications, or other care treatments.
As I think about the journey overall, I am also thinking about the positivity required as it is troubling to see a loved one face such a debilitating disease. The key is to focus on what you can do rather than what you can't do. For example during the early stages of the disease, we took lots and lots of wonderful walks in beautiful places. During those walks we had nice talks. Later, the walks were replaced with wonderful, adventurous drives where we talked about the landscape and history related to the land. There have been the lunches and at home too that brought a smile to my loved one's face. Providing the warmth of a home and family brings happiness too.
Now as the disease continues, I find that acts such as a hug, tucking my loved one in before sleep, providing limited choices, and sharing in a good film or show are very positive. Of course there's the unreasonable guilt that you can't remedy the illness or provide all care--we're only human, and there are limitations to what you can do. There's also the challenge of coordinating care with many who may define optimal care in different ways. Compromise and sensitivity are required as there's no one way to care for a person with dementia or Alzheimer's. So as the journey continues, I want to remind my self to do what I can, be reasonable about my expectations for self and others, compromise, and be observant. Onward.
