I have so much to be thankful for…
…it is hard to know where to even begin.
- First and foremost I had a great life with Kathy. It was “a good run” as they say. She got to spend the rest of her days on her terms, in her house and left with a smile on her face. And I feel like I am still living with her in a way.
- I am grateful for the friends and family and clients that have supported me while I supported Kathy. It really meant and means a lot to me even if I forget to personally thank you for your kindness or good wishes. I have learned a lot from all of you about grace. I have also learned of others that have gone through similar stuff. It is never exactly the same thing; or the same disease; or the same event. But we are all joined together by the universal “S**t Happens” scenario. We are the world. Also, the fundraiser “Remembering Kathy Lehndorff” is progressing well. I try not to check it every day, but we have passed the halfway point. I think we were at 65% this morning. The Wilbraham-Hampden Times is doing an article about the fundraiser to help get the word out. I had a good visit from Tyler the editor at the paper. Besides talking about Kathy we had a long discussion about Hampden. It was interesting.
- I am thankful for music also. A friend wrote on my Facebook page. “Without music I would slit my wrists.” I wouldn’t go that far. I would still be something a little odd I am sure.
- I am thankful for Marty my basset hound. I am thankful for Marty my basset hound. I am thankful for Marty my basset hound. (Sorry, I had a frustrating day wrangling him into the car today. It is like trying to turn a battleship.) But I am thankful for Marty my basset hound.
I’ll probably think of other things. I do have little periods of sadness, but they are scattered through the day and week. I think it is good to have a few. The support groups I have gone to have been really helpful. It isn’t so much that there is a specific problem or question I have, but listening to everyone else’s problems connects us. A feeling of “Me, too.” Sometimes the best part of it is laughing at the crap that happens. Or telling a story about something that would probably gross out someone else. Stories about Depends, poop and wearing pajamas at inappropriate events. You have to be able to laugh at life to survive it. And even when Kathy was still with me, I would come away thinking, “Boy, I’m glad I don’t have that problem with Kathy.” Hopefully, they felt the same way about my problems. I go to two support groups. There is a group of caregivers of people with dementia that meets at a local library and a Huntington’s Disease caregivers group in Farmington CT. I admire all of them, really.
In the dementia group, there are a few different forms of dementia. I am the only male and naturally the only HD Caregiver because it is so rare. It is easy to call everything Alzheimer’s Disease because that is what everyone has heard of. But everyone is different and at a different stage. One woman just got her husband placed at the Holyoke Soldier’s Home a few weeks ago. In addition to having dementia, he has diabetes. He has had both of his feet amputated and keeps falling with his prosthetics. So it was really hard for her and her son to move him and basically do what I was doing. At the meeting, she was feeling guilty. She was going to bring him home for Thanksgiving. But the group advisor told her not to keep him overnight. He needs to get used to the facility being home. Another woman takes care of her husband and her daughter. The daughter has early onset Alzheimer’s. Another’s husband shows up naked for dinner occasionally.
Another woman was wondering about time. “Is there any way to know how long it will go on.” “Can they tell me how long they expect him to live?” I was able to tell her that even if you have a hospice nurse coming several times a week like Kathy did, they can’t tell. I said that even when Shannon said Kathy was “declining” Kathy rebounded that afternoon and kept going strong. The director of the group said that since he is in his 80s other things will probably come into play anyway. You really have to walk with it day by day.
I have talked about my HD Caregivers group at UConn before. They have moved the clinic and group into a new beautiful building on the health center campus. One of this blog’s followers suggested having an art event there and now that looks like a good possibility. I finally got to start going to a meeting a few weeks ago. I knew most of the folks from before and, fortunately, most were in a good place.
One woman was really happy. She had a new boyfriend. Her husband and daughter had both passed away some years ago from HD and she was taking care of both of her adult HD sons. The boyfriend sounds like he is trying to help out as much as he can. If anyone deserves a break, it’s her. Another woman’s two daughters are in a nursing home but at somewhat different stages. Then there is a guy that was just rejoining the group after cancer treatments. He is starting to take care of his wife at home (early stages). But he had such a great attitude, it was inspiring. So, you can probably see what I mean about feeling lucky.
The good luck giveth and the bad luck taketh.
I thought I would share my Thanksgiving plans. I am going to visit my cousins and my aunt in Connecticut. If I can get Marty into the car he will go too. I made two chocolate pecanish pies and some cranberry biscotti. I also have some treats left over from one of the support groups.
