Longtime caregiver looking for support and coping tips

This is so helpful. Telling my friends and family that this is something they could do when they ask “What can I do to help?”

I recently had someone tell me that their father qualified for hospice as his sudden unexplained weight loss triggered it along with dying of old age. I always understood you had to have a disease with only 6 months left to live in order to qualify.
Bill recently lost 20 pounds within a 3 week period. Has been in the hospital twice within the past two months, along with another fall requiring 911 help. At the moment he is receiving HH care. Which, frankly, doesn't give much help and none for caregivers.
Son-in-law was on hospice at home - which meant when he died they didn't need to do an autopsy. Also daughter got help. She doesn't think hospice would be of benefit to Bill. I'm not so sure.
The other morning she thought Bill had died in his sleep as he looked exactly like Tom when he died. Could hardly tell he was breathing (obviously he was).
I also understand that the 6 months can be rolled into another 6 months, etc.
Any insights into home hospice care? Thank you.

Hi, @billchitwood From what I understand the option of hospice care can very greatly by state, insurance coverage, company, etc. In our case we had to have a prescription for hospice from my wife's physician before any of the hospice organizations would visit with us about using their services.

My wife's choice of home, rather than inpatient, hospice was a great one for her. Great care, super services, and solid folks. None of the hospice organizations here offer any type of care for the caregiver, but again that could be just what was in our town, etc.

My wife ended up in home hospice for just over 14 months.

Strength, Courage, & Peace

My sister had home health first to help with her husband. That home health nurse kept saying hospice was not needed. Her husband fell when home health was there. He couldn’t get up. Nurse did not help my sister.
My sister was so angry she changed to a different home health company. They immediately recommended hospice care in a center. He was in end stage oral pharyngeal cancer.
Another friend’s husband had dementia. He could not go into a hospice center until he met certain criteria-it was about his ability to eat, swallow, walk, etc. That was a physician’s call, but they rely on nursing to report. Both people had evaluations months before they went into hospice.
I suggest you get ahold of a few hospice places to get information from them. It is different with each patient, each state, each company. And there was a waiting list.
Wishing you strength to be your own advocate and get what you both need.

You have had and still have a lot on your plate. I cared for my husband for three years and it was hard but I wouldn't of had it any other way. What I made sure of was keeping fit and that entailed swimming in my case. Doing 50 laps or whatever was beneficial. Any kind of sport you enjoy should help you. Presumably you can leave for wife. I had paid carers in for my time at the pool but he needed 24/7 care. I hope you have found this helpful.

To see the feelings and challenges of the caregiver role in written word is like a lifeboat to me. I am a "fairly new" caregiver for my husband who had a bone marrow transplant in July 2022. We are home now after our 100 days of living nearby the hospital. While his physical prognosis seems to be ok at this time, his mental capacity has markedly declined. I have mentioned this to the providers who will schedule a brain scan and possible neurology appt in the near future. We also run a small business together and have had to "oversee" each interaction he has with customers to assure that we can serve them properly. He becomes confused easily and frustrated with not being able to find words or maintain a consistent thought pattern. I feel alone as I can't expect him to help me climb this mountain of daily responsibilities. It is overwhelming. I do try to take time for myself but have to carefully schedule that in when I know I can leave for short periods of time. Like you, I do not confide this to friends because I don't want to complain and feel like I'm failing. I also don't want to hear about having to take care of myself. I know that! I'm trying.
It takes a lot of energy to kindly circumvent his trips to the store (spending money on things we don't need). We are still trying to find where in town he has lost his set of house, etc keys. I have to constantly remind him to wear a mask in public and when customers come in our store or when we are out in public (crucial for a bone marrow transplant patient) and to take his meds, even though I've organized them in a pill caddy daily, the same way, every day. I am exhausted and empty. I do ascribe to, "one day at a time", which is the best I can do.
Thank you for listening.

Hello, @lag630 You raise such important feelings in your post! I was my wife's caregiver for over fourteen years and experienced so much of what you are struggling with now. I know everyone's journey as a caregiver is unique but I'd like to offer my thoughts to try and help a bit if I can.

First, it is not 'complaining' or 'failing' when you reach out to find someone to talk to about the demands of caregiving, even though many folks will see it that way. I had to grow extra-thick skin on this issue. I had a close family member who maintained each time I honestly answered him when he asked 'how are you doing?' I was 'just looking for sympathy'. Grr! That said, I did find two friends of old who understood my need to vent periodically about the demands.

I also understand your feelings of being overwhelmed. Days are not built for caregivers to get everything done in that they need to do. So many things had to fall by the wayside in my life as caregiving took precedence. No one can do all that we find on our plates as caregivers. Perfection was just not an option as I came to love living with a constant pile of laundry to do, never looked at an iron, felt comfortable with dirty dishes in our sink, and dust bunnies became our new pets! As I like to say 'Wonder Woman and Superman are found only in the comics and no caregiver can be a superhero.' We can only try our best and look for what help we can find and afford.

My wife had compulsions too. She was constantly thinking we needed and buying tin foil, paper towels, and coffee. For me, I had to choose my battles on things like this or we'd have been fighting all the time. I am still using up leftover tin foil to this day! Hard, hard, hard to control!

I can only add one of my favorite sayings as a caregiver "Courage does not always roar. Often times it is the quiet voice at the end of the day that can only manage to whisper "I will try again tomorrow."

If I may ask, are the mental challenges new?

I hope the sun is shining on you today!
Strength, Courage, & Peace

@IndianaScott

WELL SAID!!

Jake

Hello Scott,
Thank you for your insight. I really appreciate it. After reading your reply, I found myself relaxing just a bit and am trying not to worry so much. The mental challenges became apparent after initial diagnosis in early 2021. We had some hurdles to jump before the transplant and I attributed his mental challenges to having to face so much uncharted territory and possible medication side effects. Post transplant. I and others have noticed that his mental acuity has declined as we move forward. At first we thought "chemo brain", but that ship has sailed. I would like to get a solid diagnosis so that we can try to either slow or stop the decline or face it head on. As I've learned from a previous comment on this platform, this is your life now, not what you had thought it would be, make the best of it.
Thank you.

Good morning, @lag630 I am pleased you found some help in my post. I agree with you that the waiting can sometimes be worse than the knowing. At least once we know we can create our 'attack plan'.

As far as the future goes, you are right that while we may have each had visions of what we'd hoped our life would be like, nothing is promised in that area. I certainly never foresaw being a widower. All we can do is try our best to support our new lives as best we can. I often remind myself of the old saying 'the only thing certain is change'.

I will hope you do get a definitive diagnosis that helps you both! Do you have future doctors visits planned?

Strength, Courage, & Peace