Thanks for the invitation. I look forward to giving this a try. I enjoyed reading each of your introductions. Caregiving is a challenging story to be a part of and you have my support and appreciation. So here's my situation:
I am 68 and my husband is 74. We are caregivers for my Mom who is 97 and has been with us since just after her 90th birthday. She is entering what appears to be late stage dementia (not Alzheimer's - probably fronto-temporal or possibly Lewy's Body Dementia (LBD). She seems to be reasonably happy and very healthy except for the increasing pace of the cognitive decline. My husband and I are blessed with good health and a home that accommodates her easily. Up to now, the biggest frustration has been accepting that incontinence is requiring more and more attention. I get up most nights when I hear her heading for the bathroom because if I don't, she will forget to change Depends, which means beginning her day and mine with a major clean-up operation while she wonders who made such a mess. I can usually find my humor and good nature, but have been known to snap at her when I get really tired after several nights of interrupted sleep. She is a sweetie, so I always feel incredible guilt after that. The other huge challenge is how to connect with her. When she was first with us, she continued to knit, even though she could no longer follow a pattern but could only knit "squares" (which sometimes weren't square, of course). She has always been quite intelligent, both mentally and emotionally, so she noticed the discrepancy and it was very frustrating to her and she finally quit. Then for awhile we would play Rummy together, with her own set of rules, designed to ensure that she won. That worked until it didn't and she no longer wants to play cards. For awhile she would also play Scrabble, as she has always been able to beat all four of her bright daughters at this, but she began to forget the rules and forget what she was doing and need help with words -- all of which we were willing to give -- but she has declined to play for the past 2 years. For awhile she would sit and sing hymns with me. That will still occasionally work, but she wears out very quickly. She seems to have given up on crossword puzzles and word search puzzles in the last few months. She still occasionally plays Solitaire. When I read to her, she falls asleep in her chair within minutes. When the TV is on, she dozes intermittently. Food is always interesting, but of course there are limits to how much I can use this as entertainment. This gives you a picture of Mom's life. It is painful to watch her daily decline. She was an outstanding surgery nurse for years and a really amazing single Mom after my Dad's death when I was 14. I so want to make her last years all they can be, but I get pretty frustrated with defeated attempts to engage her with Alzheimer's store jigsaw puzzles, adult coloring books, etc. She says she doesn't need to be entertained, and she refuses all invitations to go out unless I insist that she go to the hairdresser or nail salon. All her grandchildren and great grandchildren live in other states, so there's limited opportunity for her to enjoy them.
As for me, I have had a very rewarding career as a public speaker, consultant, and trainer in corporate America - mostly focused on teaching people how to better manage the people side of having an effective and engaging company. I had no intention of retiring -- but here I am. I miss my work very much and can still figure out how to do a few short-term projects and engagements, particularly if they are local. I worry that if Mom lives another 10 years (or even 5), I will have become completely outdated. My husband and I were hit hard by the 2008 recession and between that and its impact on the small business we had started, we lost most of our savings, so I do still need to bring in revenue and am increasingly worried about how much I will have the ongoing ability to do that. We are renting a room to a no-goodnik brother-in-law, but that is not going to be tenable for very long. He lies and steals while smiling and looking us in the eye. Not okay for very long. So it won't surprise you to learn that my blood pressure has risen and I'm exhausted an awful lot of the time. We are hoping to get VA Aid and Assistance which will provide 11 hours per week of respite care. That will help, yet honestly, it seems like such a little dent in the overwhelm.
My husband and I do still find time to go out to dinner or to a concert from time to time, but our tether is fairly short. My local sister covers a night or two so I can fly to California every few months to see my newest granddaughter (who is almost 7 months old and whom I now haven't seen for 3 of those months). I have a sister who helps as she can, but she owns her own business and has all the stress of that. So anyway, thanks for listening. I rarely talk this much about my situation and if nothing else, this has given me an opportunity to look more objectively at things and see that (1) I have a lot to be grateful for; and (2) there's a reason I'm tired. I try not to let all these other stressors take away from my relationship with Mom, but she can still tell when I'm stressed and then instead of just asking for any help she needs, tries to "not be any trouble" which is the last thing I want because my mind-reading skills are not well-developed. I don't know if I'm actually asking for help as much as just saying "thank you" for providing a place where I can perhaps be understood without being labeled a complainer or a martyr.