Decompressing after a tough visit

I'm so sorry @TrumpetSwan , I know exactly how you feel — I've done everything you described a million times, right down to the residents who tried to follow me out the front door. It's etched in my brain forever. The only difference is that I was caring for my younger sister, not my mom. But all the rest …

Now I'm a year into stage 8 and some of that has dimmed for me, but only some of it. I can remember doing a lot of self-care, and like you, it was enough to take the edge off, but that was about it. I was always worrying, working with memory care staff, her doctors - and like you said, dealing with the never ending cascade of problems that morph into new problems.

Truthfully, I never found anything that did anything more than take the edge off. The way I managed my feelings, and what did me the most good (I say with 20/20 hindsight), was talking to my therapist once a month and writing about Peggy's disease. I didn't keep a journal, per se, but it was close to that. Writing everything down was a way that meant I didn't have to keep it all in my brain. Oddly that was kind of freeing, at least in the moment.

Finding a little respite a few times a week (even if only for an hour) also helped a lot. I'd do my best to go to the gym for an hour three times a week. I'd use the machines so I'd have to concentrate so that I wouldn't injure myself. Throwing myself into that for an hour meant I wasn't thinking about dementia for that hour. Is there an activity that can be all-consuming for you in that way?

I wish I had something more helpful to add, but this disease is just relentless and horrible.

Oh, yes, I know. All too well. What a horrible disease. I sort of manage my own feelings by (1) visiting often enough that I am rarely surprised. (Witnessing the situation firsthand is maybe a bit desensitizing, or at least I have to deal with the realities rather than my own dread). (2) I talk to a friend whose dad died last year from this disease; she has been a few steps ahead of me on this path and is very understanding. She confirms for me that what I think and feel are common to a lot of caregivers. This makes me feel more ordinary, which is a welcome feeling. (3) I also talk to myself: what seems to give me the most comfort is reminding myself that nothing that is happening now can ever change the fact of my PWD’s past—the strength and ebullience, the skill and compassion for others. All those qualities were real, and those truths about the past are all still true. Our present moment is certainly real too—and viscerally so—but there will come a time when the horrors of this moment will recede to become only one part of the journey. I tell myself that I am controlling those things I can control, and that this disease is not in my control. (4) I also take a deep breath and exhale slowly—as you mention!

As for the locked door: My PWD has been in two facilities with locked doors. The first one drove me to distraction: I could only visit during the hours when there was someone at the front desk. That person had to call back to the MC unit and ask them to unlock the door. More than half the time it took two or three calls to get that to happen. When I was ready to leave, I had to find a staff member and wait to be let out. This was maddening. In the current facility, family are given the numeric codes to the doors. So I can get all the way in to see my PWD without staff assistance. It’s hard to explain how much this access (and trust) helps me. But I have to admit that in neither case has the locked door bothered my PWD.

TrumpetSwan, it might help to remember that your mother is not so much trapped behind locked doors as protected by locked doors. My wife sleeps behind locked doors, so she doesn't wander looking for me and find herself freezing in a cow pasture. She and your mother are protected by being confined. They aren't cold or hungry, and they aren't in danger as they would be without the locked doors.

I know your feeling of loss. I didn't like it when my mother was in NH, and I don't like it that my wife is in MC. But it helps me to look for the bright (or at least less gloomy) side of the situation.

nobody knows unless they’ve been there. I cried on the way home and cursed this dreadful disease. I remembered the moments when he said I love you too. The disease never took away our love. My DH hadn’t spoken in weeks. One day I patted his arm and said I love you honey. He turned to me, looked me in the eyes and said “I love you too Babe” It was like wires in his brain connected for a moment. I will cherish those words forever. Our loved ones may not be able to communicate but I believe they know they love us and we love them. This forum helped me more than anything. I still come here to try to help others. Someone here posted about “Thought Stopping” and I’ve been practicing that since my husband passed. I work puzzles, talk to friends and family, and do things to honor my loved one. Hugs. 💜