I Can Enjoy Myself Without Having to Remember Much

Jami Boyle

That was a particularly moving comment from a previous commenter on my remarks. I thank Iris for those words and all the others that have come from wise folk. Thank you. There is so much to learn…and, particularly, to understand. Here’s a insight…

After listening to Teepa Snow and Care Blazer’s, it occurred to me that there is so much attention paid to later stages of memory loss and their care partners But scant to the earlier stages. It’s very easy to dip into deep loss but not early loss And there’s lots of warnings about the forthcoming losses but little about the earlier minutia.

Okay, perhaps it’s me in my ignorance but there is something missing for an expression of this stage, if you want to call it that. All I can hear in my ear is my friend saying, “Why would you go to AA for wanting to address your drinking? That’s like getting Chemo-therapy for the flu.” She knows me

Here I am again, hunting, searching, begging for answers and relief and coming face-to-face with really disabled souls. I went to a group setting last week and was invited to join the group . “No thanks I said. I’ll watch.” I did not want going to play bouncy ball with very advanced dementia participants. That would not help me it would hinder me. I don’t think it’s completely denial.

Can anyone help me articulate this?

What a freaking journey to be on. S

gampiano

Hi Jami,

When I read your posts i can identify with so many of the same feelings/ issues. My DH Is probably somewhere between stage 5 and 6, depending on the day, so probably further along than yours at this point. Ive done, and continue to do a lot or reading, and am constantly trying to adapt to ever changing circusmtances with my "creative ideas". Some of them actually work, and then I realize that these fixes are only temporary.

Kudos to you for trying different and various approaches. You were uncomfortable in that group, but you gave it a shot. I gave day program a few months and realized that my husband just hated being there, and it stressed me out too, so we don't go any more. Some people love it, and I wish that my DH had been more cooperative. You seem like a take charge person and a problem solver. Those are valuable traits, and necessary, but with this disease there are very few solutions, only adaptations. I have had a hard time accepting this myself.

Am I taking good care of my spouse? Yes, but Ive also shifted my priorities list to my well being, This means getting out of the house without him, and continuing to work at my profession at least part time.

So, I sent a giant group text to a bunch of friends asking for caregiving recommendations and got 2 responses. I'm meeting with someone tomorrow, hoping that she will watch over DH while i am i my studio working from home. It's a first step. Next, finding a "sitter" so that i can go out , and i don't care if am alone or with friends.

What do you like to do for yourself? What would you do if you had the time to spend on just you?

Self preservation is the key, and , in my case, it accompanies acceptance and surrender. (still hard for us fighters to practice)

Sending kinship,

Maureen

Iris L.

The following is a venting complaint:

In the earlier years this message board had active Chat Rooms, every night for several hours. They were useful for companionship for a few moments in the evenings, especially for those who could not easily get out of the house to attend an IRL support group. I relieved quite a lot of loneliness in the Chat Rooms. But this new iteration discarded the Chat Rooms altogether. There needs to be something for housebound members.

Iris

Jami Boyle

Dear Maureen and Iris,

Receiving a “Dear Jami” and a tender closing using the word kinship was like a soul balm. And this may reflect Iris’s complaint about a missing support, Chat Room.

I’ve been using my phone to type my comments but I believe I’ll be using my computer soon, which will help me express my words more easily. When I allow the darkness to over take me I inevitably have some melt down about technology, or the insanity of our medical industry. Also, I’ma letter writer (250, plus annually) so getting my face out of this tiny screen could only benefit me.

As I’ve shared, I am starting to look to this place, more, for guidance. When I move to the computer to CMN perhaps I can start a file with all your suggestions, etc. My mind is very busy. For one week I’ve been doing a guided meditation on surrender. This is my needed pathway, spiritual. The ground has fallen away and I/we are suspended in mid-air. When I’m not panicky I can see how I am hoping someone or something will rescue us…AKA make all this go away. I know this is your story too.

Thank you for reading, offering ideas and mostly for your compassion and attempts to conjure some intimacy despite using electronics.

Now it’s Time to ride an electric bike (how’s that for electronics), one we’ve borrowed and now will purchase. This bike has been a great blessing. So are you. Jami

SDianeL

My DH is in Stage 5, going into Late Stage 5 Dementia. I know exactly what you're saying. I got caregiver support from the VA. 720 hours of respite care, but it's only for 4 hours at the time once a week or if she's available, twice a week. I used it to get all my doctors' appointment done. I also visit my sister who also has dementia. But beyond that? Zero. Zip. Nada. My friends have all moved away or live in another city, My family all works and have their own lives. Which is the way I want it. Taking him with me is not an option. We haven't been out to dinner in 2 years. It overwhelms him. He loudly says "I'm not hungry" and the menu overwhelms him. My daughter offered to help but she works 12 hour days 6 days a week so I don't want to ask her to help. She took half a day off and we celebrated my birthday. Just the 2 of us. It was wonderful. His daughter lives in another state and is disabled so she can't help. Day care is out of the question. He would hate it and he's angry & agitated stage right now. Risperidone isn't helping on a low dose. He has very bad knees and can't walk very far so going for a walk is out of the question. If I want to go visit my son & his family in another state, my only option is to have him placed in a nursing home (f they have room) That's not an option (yet). What has helped me is this forum and the book "The 36 Hour Day" because as new behaviors happen I can refer to the book to see what to do. The VA provided caregiver training which also helped. ALZ has some too here: https://www.alz.org/help-support/resources/care-education-resources

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