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Decompressing after a tough visit

I guess all we can do is take a deep breath and exhale, right? I visited my mom yesterday.

She is in Memory Care. I put my game face on. I went through the locked doors she now lives behind. I walk through the community to my mom's apartment, and as I do I smile and wave at other residents I have come to know and say their names as I greet them. Many are in wheel chairs shuffling their feet along the floor like my mother now does. Some have walkers, or others just sit asleep in wheelchairs in front a television showing classic movies in the community "family room". That in itself is just sort of grim.

I got to my mom's apartment and she was sleeping in bed under a ball of blankets. Her television was blaring loudly. Her room is so small compared to the house she had with my dad and is decorated by only a small subset of furniture from their house. It reminds me of my first college apartment that was minimally appointed. At that time in life however, we are still building. Now, what she has is just a reminder of all that she lost.

I brought some socks for her which I placed in a small dresser. She was awakened by the noise, but sat up and remembered me and said hello. I sat on the bed with her, and we chatted, and I held her hand. I noticed her long nails and chipped polish, so I said I would set up an appointment for a manicure at the salon down the hall.

She asked if my dad had died, and I replied that yes, he had, but she did not need to worry because she was safe there and had many people around to support her. It is hard to keep answering that question.

Then she told me she had just wet her pants. I got the attention of a staff member to help her get changed, and noticed the bedding was soaked. So the caregiver took the sheets off the bed to be washed and took my mom into the bathroom to appropriately clean her hind end. I put new sheets on her bed.

I waited for mom to come back out of the bathroom, but when she did she just wanted to go back to bed and said she was very tired. I told her to go to sleep, and I would come back again soon. The caregiver helped her out of her wheelchair and back to into bed. I tucked the blankets up to her chin, and my mom closed her eyes. We exchanged "I love you". She looked pale, thin and barely recognizable from the vibrant, sassy woman she used to be. To me, she looked barely alive.

I walked back out of the community to the locked doors. When they opened, a resident there swiftly walked up behind me in an attempt to leave. The staff there ran over to her and distracted her away from the door. I stood outside the door as it closed slowly behind me and felt so sad that my mom was 'trapped' in there.

The feelings of despair, sadness and irreparable loss just does not go away. I do a lot of self care. To me, there is no therapist or support group that can take away the reality. It is a new adjustment to a new life that keeps shifting and taking new shape for as long as this journey is going to last for her.

Appreciate any feedback on how you manage your own feelings, etc. Thank you.

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Comments

  • SusanB-dil
    SusanB-dil Member Posts: 1,402
    1000 Comments 250 Likes 100 Care Reactions Third Anniversary
    Member

    ((Hugs)) I know, it is all a sad, horrid disease!! I sort of cope by knowing mom doesn't care any longer. There's really no more empathy, nor care of what the surroundings look like, or what she can and cannot do any more.

    From past posts, you know we were never close. But still… she is still my mom, and raised us, and our moms and our LOs certainly didn't deserve 'this'.

  • GothicGremlin
    GothicGremlin Member Posts: 1,016
    Sixth Anniversary 250 Likes 250 Care Reactions 500 Comments
    Member

    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.

  • Carl46
    Carl46 Member Posts: 759
    250 Care Reactions 500 Comments 250 Likes 100 Insightfuls Reactions
    Member

    I remind myself that she's better off there than with me and go for a walk in the sunshine. Sometimes I hum the old Johnny Cash song that goes "I don't like it, but I guess things happen that way."

    It helps a little.

  • ARIL
    ARIL Member Posts: 43
    10 Comments 5 Likes 5 Insightfuls Reactions 5 Care Reactions
    Member
    edited May 3

    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.

  • Arrowhead
    Arrowhead Member Posts: 419
    Fourth Anniversary 100 Comments 25 Insightfuls Reactions 25 Likes
    Member

    We started dating in 1972 at the age of 17; married in 1976; diagnosed in 2016; in memory care for 18 months; now on hospice. The door is only locked at night; an elevator takes me to her; a code is needed to leave. I talk to her, she tries to talk back but just makes whispered sounds. Sometimes she touches me, sometimes she smiles, mostly no expression; sometimes she stares without blinking for 15 to 30 seconds. I get feelings of loneliness, sadness, depression, and sometimes anger. I’m retired and she’s only 3 miles away, so I visit for about an hour every day. There is nothing that can take away the reality; only new adjustments to a horrid life that keeps shifting and taking new shape for as long as this journey is going to last for both of us. How do I deal with it? To tell the truth, I don’t know; I just do.

  • forbarbara
    forbarbara Member Posts: 200
    100 Care Reactions 100 Likes 100 Comments First Anniversary
    Member

    This. This forum was a lifeline for me. And six months into Stage 8, it still is.

    Many times I’d take the long way home on back country roads and cry it out in the car. And like you, TrumpetSwan, I made a point of getting to know MIL’s community at the MC - names, sometimes just faces - and greet them with a smile and in some cases a little squeeze on a hand or shoulder. I can’t explain why that helped me but it did.

    Stay strong.

  • TrumpetSwan
    TrumpetSwan Member Posts: 79
    25 Care Reactions 10 Comments First Anniversary 5 Likes
    Member

    Susan, Gothic, Carl, Aril, Arrow, Barbara - Thank you. Blessings to all.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more