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Caring for Difficult Carees

Absent, AWOL and At A Loss


I’ve been absent lately, I know. The past six months or so have been some of the most difficult in my life. So many times I’ve wanted to blog, but whenever I would sit down in front of the keyboard, the words would just not come. There’s so much to say, so many emotions, so many worries, so many questions. But they’re stuck in me like cement. When I tried to construct a thought, let ... Read More »

Sink or Swim


I’ve been away from the site for awhile. My mom has had some ups and downs over the past couple of months, including a recent hospital stay, which just about did us both in. I’m having a hard time bouncing back from that. And her resistance to my help has worn me down in new ways. Oppression, depression, suppression and definitely no room for expression. It wears on you. It makes it hard to think. Hard ... Read More »



Mary died early Tuesday morning, before I awoke. It was obvious when I went to check on her that she had just died within an hour or so. This means she spent the last 48 hours of her life fighting for breath, her eyes wide with what I and the daughters interpreted as terror. While we are relieved that she died and is no longer suffering as she has for the past several years, I ... Read More »

The End


After my break from caregiving when I had my open-heart surgery, I spent two weeks with Mary, whose oldest daughter was here to help with the lifting thing. Then I took care of Mary for a couple of weeks before the daughter came back to relieve me for my regularly-scheduled vaca in CA to see my sister. What I was dealing with with Mary was end-stage stuff (the loss of some communication skills, increased frailty, ... Read More »



I thought I’d have a good block of time to finally write a post, but I can’t get more than a few minutes at a time away from Mary, so this will be written in little pieces and may be a bit disjointed. With the amount of medication I gave her yesterday, I thought I’d have a totally somnolent Mary all day. But no. She has basically been sundowning for a couple of weeks straight, ... Read More »

Back from the Brink


I’ve been “away” for awhile. But now I’m back. I was on the brink. Beyond burnout. Funny how when you’re at that place it seems both scary and interesting at the same time. Like you’re standing at the edge of a cliff looking over. It’s frightening to know you’re that close to the edge… but you still can’t help looking down. Stress from work plus stress from caregiving equals no relief in sight. I work ... Read More »

The Sound of My Voice


I do not have a mellifluous voice. Anyone who has heard me speaking with Denise knows that. The kindest thing that anyone has ever said about it was that it is, uh, “different.” So I often think about how it must grate on Mary’s ears throughout the day as I must, of necessity, direct her in her ADLs. The only thing she can do by herself at this point is make a cup of tea ... Read More »

Every Day’s the Same, Every Day is Different


I’m Kristin, and I am the caregiver for Mary, the mother of friends of mine. She just turned 86, has what we were told was Lewy Body Dementia, but we’re not sure at this point, as some of her LBD-associated symptoms have disappeared. I am taking care of her because her children do not like her very much, having put up with her abusiveness for years. For that matter, I don’t like her very much, ... Read More »

The Visit


As you know if you’ve read Denise’s latest blog entry, she and Bette visited me last Sunday. Now, I don’t get a lot of visitors; in fact, I have not had one since I moved in here in March 2010, except for Mary’s daughters on their brief weekly visits. So I was very excited to have these two, especially, pay me a visit. What I had anticipated as a warm and fun visit turned into ... Read More »

What I Learned on My Summer Vacation


On June 21, Mary’s oldest daughter visited from Oregon to take care of Mary while I “vacationed” by taking care of the youngest daughter’s farm while she was working at a music festival for several days. I have done this several times in the past - ”past” meaning when I was a bit younger and less decrepit. But I recovered, and on the 27th, Mary went for her vacation to a local assisted-living facility, while the daughters and I spent a ... Read More »

The Cold-Plate Supper


Sometimes Lewy Body can be funny and interesting. Mary has the version of REM sleep disorder  in which the caree acts out the dream after waking, rather than during REM. Today I returned home at 3:30 after an hour’s visit with a neighbor. Mary was resting on the couch, but had obviously been very busy. She told me that she had just returned from the store (she hasn’t driven in 2 years) with some macaroni ... Read More »

Mary’s B-A-A-C-K!


If there is anything worse than spending 24/7 with Mary, the cantankerous, ungrateful, angry person I caretake, it is doing so without a computer for 2-3 months to connect me to the outside world of the compos mentis. I am finally up and running and am most grateful. I have tried to keep up with others’ daily blogs on the library’s computers,  and have been moved by the stories. I do realize that my situation is easier ... Read More »

THANK YOU!!!!!!!!


First of all thanks to EVERYONE who contributed to the caregifting project for this month (me). I have bought a pair of shoes that came complete with soles, and my back and knees are thanking you. I also made an appointment for the dentist to take care of the dental pain. The rest of the money, at this point, I am setting aside to pay for respite help. I have decided to train one person ... Read More »

How Long, O Lord?


Well, okay, my question is not the same as that of Habakkuk, who was in pretty dire straits waiting for his text message from God.  What has struck me this week, though, as I have read all the the stories of bloggers here, and have looked at the Lewy Body Association website, is that I might be in for a really long haul here. Some of  folks have been caregiving for 10+ years! Here I ... Read More »

Meet Mary


(Editor’s Note: Today we welcome a new blogger, Kristin. Here’s her story…) I am a retired social worker who is caregiving an 85-year-old woman with dementia in return for assistance I received years ago from one of this woman’s daughters, who helped me through an extraordinarily difficult year 23 years ago. I vowed then to repay her goodness when the opportunity presented itself. When her mother, Mary, began showing signs of dementia and it was ... Read More »