My friend Kate, whom you have met previously a number of times, recently posted a look at the difficulties of living with Dementia as well as the good parts:
CLICK HERE FOR KATE'S BLOG. (Opens in a new window)
This is my reply to her post:
Thanks, Kate. The metaphors of a "Gravitron" and a "Dementor" are painful but well placed. Richard Taylor's list really causes those of us who are "Non-Dementia-ed" to be more understanding, patient, accepting, supportive, etc and it also makes us more loving if only because of being able to better understand what the "Dementia-ed" are going through.
You say for you "I think it boils down to a few constantly recurring feelings – confusion – frustration – humiliation – embarrassment – loneliness – isolation – anger or irritation (which can lead to denial) – a deep sadness – and last but not least, worry, because I am constantly faced with an ever-changing playing field, never knowing what function is going to become impaired or lost tomorrow."
I know all of those and experienced them with Gregory, we both felt most of them, and I respect that these are your feelings, but if I may please say ... humiliation and embarrassment should not be allowed on your list! The changes that cause them are not your fault, not in your control, and I would guess that allowing people to see your "padding" helps them to love you all the more!
For example, I know how "humiliated and embarrassed" Gregory could have been at having to pee and shit himself when he could no longer get to the bathroom on time, even with help; but there was no cause because for him to feel bad as it just was, so we cleaned up, and kept on keeping on. Anyone who would have made him feel "less than" would have INSTANTLY been excluded from our life!
Other items in your list can be softened with loving, caring people in your life; like confusion and frustration easy by leaning on a friend to help or on one's "BUB." Loneliness doesn't have to take the front when those you love continue to be there for you no matter what. (Literally FUCK the others!) Sadness, yes ... but also lots of joy and gifts! Anger and irritation can help get difficult emotions under control rather than leading to denial. Accepting the changes and calling them out for what they are, increases acceptance. Who in their "right mind" would not be angry!
Finally, worry! Ah yes, WORRY! The great destroyer of happiness and sleep! The sage advice must be remembered, "Do not worry over those things you cannot change." A waste of time! So true. But I also found that "working at not worrying" was also a waste of time and in effect was a different form of worrying! Between the time we received Gregory's diagnosis and his death, there were so many things we worred about and or "worked at not worrying about" THAT NEVER EVEN CAME CLOSE TO HAPPENING! As we saw the first few worries skipped over, we began to accept most changes more easily.
For me as lead part of the caregiver team, the list of difficulties would probably boil down to one; the feeling of helplessness at making everything OK for Gregory (and for you for that matter, or anyone with Dementia!) When Gregory was happy and content, so was I. When he was overwhelmed emotionally, so was I. As he changed, so did I and this way both of us felt that all was OK. And it was. If I had to tally the difficulties, hard times, sorrow, sadness, and tears from the gifts, the gifts, joy, happines, and laughter would win out!
As I see it, you have met, my dear dear wonderful Kate, your mission multi-fold times with the so many people your life has touched and which your brave words of wisdom read by so many have helped. And your success must it not be tens of thousands and maybe more!