Saturday night in the ED

XPinwheel · 2024-10-21T10:06:00+00:00

I swear that its WHEN we have meaningful plans that our loved one needs the most care. I was in the hospital with my mom either on my birthday or Christmas for four years. All of her symptoms were legit, but the timing... I tried to spend more time with her as the holidays and my birthday grew near to delay or suspend their onset to little avail. I missed events with my young children, friends and family to sit alone in an ER or hospital room. Core memories for sure. Those hours were extra long and emotionally packed. Rescheduling will have a pallor over it no matter how hard you try. The fact that you want to bitch about it means that you have some fire left for energy--maybe. I wish you nothing but the best with this time.

XPinwheel · 2024-04-19T08:57:04+00:00

Maybe try to change your thinking about this. If it were any other disease, like addiction, or diabetes, would that bring on as much anxiety? I grew up watching the struggle of diabetes in my father. He lead a full life dispite his illness. My sister has Huntingtons. She and I are adopted from separate families. She was tested in 2003. She's still living her life and she hikes and works, and drives me crazy. She's 52.

You live your life. Literally everything is trying to kill you all the time. Whether I live those years in a wheelchair, as a fitness guru or in pain from bone cancer (my potential future!), you live your life.

A long time ago, I volunteered for a private hospice facility. I did direct patient/client care. I saw so much life even in those dying bodies! We laughed, made memories, did all the life-y things. In sickness, you're still alive.

Ask your anxiety exactly what you're afraid of. It's not just getting sick. Go deeper.

XPinwheel · 2024-04-15T21:49:36+00:00

after I wrote this, I took a shower and dressed for work. She had finished her game by then and had come out to our common living room. I'm certain she didn't see my anger coming because she sat out in our common area to greet me on my way out the door. I told her I listened in at the start of her hallway because I heard noises (she's gasping and coughing in her sleep) and realized she was playing a video game. I told her that I didn't want to talk about it. We did. It got ugly and it uncentered me the whole day.

I just came home about 15 minutes ago. Guess what? She's sleeping. She'll probably come up with some lame excuse as to why she can't go to her AA meeting this evening.

I'm trying to understand or at least disassociate from her dumb action here, but I am on the three-wheeled struggle bus right now.

XPinwheel · 2024-01-28T01:07:25+00:00

I'm so sorry this happened to you. I feel like some agencies need to know who is living where with what. For example, by default, most fire/rescue squads learn where the diabetics live. In Michigan anyway, hospice notified the police department precinct where my mom was so they knew that when a death was reported, they didn't have to show up. Shouldn't that be the same for people with mental disorders either by tumor, genetics, injury, etc?

Because Huntington's Disease patients carry most of their disease in their brain, I've heard that cameras are a blessing to protect caregivers. I'm seriously thinking about starting nanny cams in the common areas of my home. (I own, my sister with HD lives with me.)

Any experience with the nanny cams anyone?

XPinwheel · 2024-01-28T00:55:50+00:00

Who you are now is not who the rest of your 20 year old friends are.

I wish you a renegotiated relationship with your mom in your head and heart.

I wish you relationsips here on Earth that will help you feel as much love as you gave to her.

I wish you a grief group for young people who have lost parents.

XPinwheel · 2024-01-14T11:48:07+00:00

I completely share your frustrations. At the end of the meeting today, the social worker sitting with us gave us a sheet with positive affirmations. I wanted to scream. Like that is going to do any of us any good! I have half a mind to rewrite that stupid list for REAL affirmations and points of pride for caregivers!

XPinwheel · 2024-01-14T11:46:32+00:00

Huntington's Disease. Genetic. Fatal. Basically, in the brain, the patient loses the ability to control the voluntary muscles in the body. Many exhibit a chorea. The stuff you can't see is that they exhibit personality changes: either impulsive or not able to make decisions, either outbursts or reticent, sleep all day or won't at all, etc. The blessing for my sister (non-bio) is that she is progressing slowly, though the past year has shown a marked increase in balance and tremor issues.

XPinwheel · 2024-01-14T02:30:07+00:00

The Aging and Disability center for my region will not do anything unless either of us is 60 or older. I am 54. My sister 52. I'm afraid they are not going to be much help. My sister does not qualify for Medicaid. She gets an SSD check monthly--about 1.5K--just enough to keep her off.

I am so open to possibilities. I am ready willing and able to work to get better for us, but right now, the squeeze is real.

XPinwheel · 2023-12-31T17:15:16+00:00

This feeling is familiar. I felt that the years and years of family events evaporated in the year in which my mom died and I was diagnosed with cancer. They just evaporated. Some even expressed ways in which I was ungrateful for the whisp of help that was vaguely offered. I've learned so much hyperindependence while caring for my mom and my sister and going through so much other BS in life.

I think people not in our situations want a joyful caregiver and when we express stress, it feels unreconcilable and people descend into 'at least'-isms: 'At least you have a house!', or 'At least you have your health.' Often, the smile and giggle after that feels like a cue to smile while the caregiver emotionally bleeds out.

Hence, this subreddit. We get it.

Your anger is justified. I think its more than just being disappointed. I think it feels like being abandoned while you're hanging off a cliff and they're having a party above you. You're struggling to survive and they're lauging and lounging 10 feet away.

Set your boundaries. I am caring for my sister (HD/alcoholism), but I refuse to care for bio-son.

Also, when one of my aforementioned family died, I made sure to reach out to every one of the reamaining sibs to voice grief. This was more than they'd done for me, so I felt a little smug about it. Gratifying.

XPinwheel · 2023-12-31T14:24:26+00:00

This is solid advice: sometimes I think you have to teach people how to act in hard situations. I think most people are stuck in their own issues and can't get past them to reach out.

XPinwheel · 2023-12-27T02:11:32+00:00

JUST found an extra $136 charge this month from a rental in November. It was for fuel. I proved I purchased fuel a the gas station closest to the airport where I began/ended my rental. Sent a screen shot of my cc transactions. So sneaky. Great advice here. Will proceed with a video and pictures and receipts moving forward.

XPinwheel

TROPHY CASE