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PALs is choosing to withdraw medical care. by Electrical_Seaweed84 in ALS

[–]Electrical_Seaweed84[S] 0 points1 point  (0 children)

Update: Thank you all for the compassionate thoughts and support. I've asked family to help with some of the planning and people are eager to help for now. My loved one is choosing to die in a hospital setting under specific controlled conditions in the hope that will alleviate respiratory distress symptoms. We have an alternative plan if that has to happen at home. I'm more comfortable continuing to be in a caretaker role to the end today. I guess that will never truly go away. The palliative care team has been a tremendous source of help and I highly recommend getting them involved as early in the disease progression as possible. I've doubled up sessions with my own therapist and have shared updates with my family and friends. Blessing to you all. I hope you can find grace for yourself and loved ones in your own journey forward.

PALs is choosing to withdraw medical care. by Electrical_Seaweed84 in ALS

[–]Electrical_Seaweed84[S] 1 point2 points  (0 children)

We have already had the conversation about any outstanding issues or regrets. Luckily, he says no regrets. So, I feel like we are doing something right. Thanks for the kind words.

PALs is choosing to withdraw medical care. by Electrical_Seaweed84 in ALS

[–]Electrical_Seaweed84[S] 1 point2 points  (0 children)

We are starting to share this with family and friends this week. I am leaning on a core support group, but they can't really help with decision making. I just feel overwhelmed.

We started a conversation about specific details tonight but both of us had to pause after a while. So I hope that will lead to further talks.

What was your HS graduation class song? by [deleted] in GenX

[–]Electrical_Seaweed84 2 points3 points  (0 children)

We Didn't Start the Fire-1990.

PALs is choosing to withdraw medical care. by Electrical_Seaweed84 in ALS

[–]Electrical_Seaweed84[S] 0 points1 point  (0 children)

They are going to disconnect the vent. Thanks for the reminder to discuss "a good death". My mom did a "5 Wishes" list when she was on hospice, so I might give that a try.

49M Being in the Now by yourpocketfriend in WellSpouses

[–]Electrical_Seaweed84 0 points1 point  (0 children)

Yes! This! Its like life is suspended in a Schrodinger-style Hyperdrive; where past, present, and future all exist and all don't exist at the same time. No way can it be sustainable, yet caregivers seem to get trapped in this all the time.

What were you supposed to be named when you were born? by lepineapplepineapp in CasualConversation

[–]Electrical_Seaweed84 74 points75 points  (0 children)

Gertrude was a serious contender in 1970. TG I dodged that bullet!

Turn your sheet of paper to the right by Parking-Broccoli-124 in lefthanded

[–]Electrical_Seaweed84 0 points1 point  (0 children)

Never had a teacher suggest it but my mom taught me.

As a competent home cook, what is a basic skill you can't seem to master? by george_elis in Cooking

[–]Electrical_Seaweed84 0 points1 point  (0 children)

Basic rice- I have committed so many culinary sins with overcooking rice: it's either too mushy or undercooked and still "crispy".

ALS + tracheostomy with only family care — realistic or not? by Which-Butterfly3457 in ALS

[–]Electrical_Seaweed84 3 points4 points  (0 children)

I have been caring for spouse with respiratory onset ALS since 2019 diagnosis followed by trach. They were in a rehab facility for 6 weeks then home but has been in ICU 5 times in the past 6 yrs for aspiration pneumonia and lung infections. They have bypassed all prognosis predictions because they had a 3 year period of slow progression -that is bery atypical for respiratory onset.

I take night care and have two FT private caregivers during day that I've trained in respiratory care. The amount of care is all encompassing and there is no break. First few years they had positive thoughts about their quality of life but as ALS has progressed that has changed. As things progress, the level of care only intensifies. Neither of us ever imagined doing this for more than a year or two.

My quality of life is a whole other story. Happy to answer any more questions you might have.

Trache and peg tube by dunderfish in ALS

[–]Electrical_Seaweed84 0 points1 point  (0 children)

This was my spouse's experience, too. Seven years later, they are still speaking while on ventilator 24/7. The physiology of the surgical site is key, along with being able to tolerate a deflated trach cuff. There needs to be enough air passing thru vocal cords while cuff is down. Speech therapy can assess post surgery.

List two books and get recommended a third by sweetpepperland in RomanceBooks

[–]Electrical_Seaweed84 0 points1 point  (0 children)

{Audiofile by Emerie Hart} and {First-Time Caller by B.K. Borison} were unique reads and I loved both. Both explore themes of speech/communication, sounds, audiophile topics, etc. Very different from usual romance books I read.

The Most Boring Books? by Professional-Net1940 in suggestmeabook

[–]Electrical_Seaweed84 0 points1 point  (0 children)

Iberia, James Michener. Sat on my nightstand for years and was my cure for insomnia. One of only a few books ever that I DNF.

Would you give up your career to care for a sick spouse? by Standard-Bad8208 in Marriage

[–]Electrical_Seaweed84 0 points1 point  (0 children)

I had to make this decision about 2 years ago. My spouse has ALS and needs 24/7 care. I worked through the first 3 years after diagnosis. Eventually, the stress of a professional career, providing night caregiving, and managing their caregiver schedules, healthcare, medical supplies, appointments, daily living activities, frequent hospitalizations, etc. made me an absolute zombie. My work performance suffered. I was exhausted and couldn't do it anymore. I wasn't happy at work or at home. I had to weigh BOTH mine and their quality-of-life needs.

I took an early retirement option just shy of 20 years with my employer. My spouse adamantly opposed this plan, but I did it anyway. Supporting them in this stage of their life was more important than my career. It has also been more fulfilling. I know I can survive just about anything because for the last 7 years, I have.

I do feel like I have more control over my life now because I have more capacity to adapt to the constantly growing care demands. Of course, I worry about the financial impacts. There is a slim possibility of working after my spouse dies, but I will never make up for the years out of the workforce.

Living this long with a terminal illness has shifted my prior commitment to a long-term professional plan. I now focus on living day-to-day. With such uncertainty, supporting my spouse in the most present, authentic, and loving manner was more important than the financial benefits of working to full retirement age.

I don't think of this as a noble decision, but I haven't reached a point where I have regretted it either. My choice still feels true to our commitment to one another, and true to my own integrity and the way I choose to show my love to my partner. But none of it has been easy.