Parents caring for the parent support thread (Part 2)

It was great when everything was going smoothly. Very nerve wracking when something went wrong and you couldn’t use an emergency call button or run into the hall for a nurse.

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@momofboilr1 how long did it take to access help? I can understand that could be nerve-wracking!

It seemed to take quite awhile in the hospital!

I remember my mother going to the hospital for severe dehydration. The IV pole was right next to her bed. It took two hours to get a nurse to put a bag on it. The nurses are so busy.

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When my dad was in the hospital I stayed there every minute I could. I did a tremendous amount there because nurses did not respond as quickly as I certainly would have liked. Anything I didn’t know how to do I watched them do and learned what I could. He literally got no sleep because someone was always needing blood, vitals, dietary asking for menus, the janitor. Always something. I started kicking people out so he could close his eyes for 30 min at a time. The doctor even left orders to NOT disturb him at night. They ignored it. IV alarms went off continuously-fortunately I learned how to fix them.

When we got him home he slept for a week straight. Simply refused home health/physical therapy because he wasn’t ready for anything. But they cancel home health/physical therapy if you refuse at the beginning–so we’d have them show up and say “sorry”–we’d have the PT people show us exercises to teach him. In a few weeks he felt strong enough and then it was all good, but nerve wracking for my sister and I who were taking care of him. We were lucky though–he lived next door to a nurse and doctor and I have a medical background so felt pretty confident about how to recognize problems. That was ready support.

So we did it–but physically and emotionally exhausting for us (but definitely better for my dad). But I don’t think most home caregivers at the start consider the 24/7 “on call” aspect and that’s very hard to describe how draining that can be.

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We had my mother transported to our house by Hospice during early Covid. I had been visiting her a few times a day, but I could no longer shift her up the bed by myself. (Due to Covid risks, we had kept my husband away from her building and sent sis back home.) She had LTC insurance and suggested a facility, but we were fearful of never seeing her again due to Covid rules. It turned out her stay was only a week, but even with a caregiver visit it was stressful. We had moved the downstairs guestroom bed into the living room to make room for hospital bed, and I slept there outside her door at night (worked from home during day). Was really glad to be able to help, but honestly even for just a week it was pretty stressful even though my husband was retired and was able to help too.

Hint: My sister suggested a wifi/video camera in the room, and that was actually pretty helpful. My husband and sister (in another state) and I could monitor without disturbing.

2-3 hours. It’s a long wait when you don’t know what you are doing. I believe my mom called 911 once

This is like self-checkout at stores as a solve for not hiring — regular people are not trained as caregivers, and putting them in the position of doing so is hardly a solution to a nursing shortage across the country and a wider general healthcare system malfunction.

My Mom continually had to assess whether Dad was suffocating, panicking, or just fussing. Even when they both had covid, the ER said go home and “do the best you can”. Visiting nurses could come twice a week but only for “nursing”,i.e. blood draws or actual things insurance thought a professional should do. The other 5 days and all night, it was just her. There were no private duty nurses , nothing available. When he entered hospice last month, the intake RN was dripping with judgement about our collective inability to care for him at home until he dies. He has multiple malfunctioning systems cascading into irreversible failure and she thought that us living in their rural home (with only dial up and spotty cell service , nearest hospital of note is 2 hrs away by ambulance) was gonna fix that?

We’re the “greatest” country in the world and this is the best we can do?

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Wish me luck: I meet tomorrow with a therapist to talk about sibling issues surrounding my mom’s care and the divisions it has revealed.

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That is a great description!

Ugh. That is awful.

That’s probably best but we bought a baby monitor which was cheap and SO helpful.

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My mom needed her bottom cleaned and irrigated 9x/day, her fistula inspected and bandaged each of those 9x and more. There was no way we were willing or able to provide such care around the clock and still be her children who love her. It took 3 trained staff or more for each of those times she had her bottom changed. It was grueling, no Q about it. No one suggested we should have taken her home and done it ourselves.

Fortunately we were able to get her some sublingual morphine to help with the terrible terminal cancer pain. That also had to be regularly administered. It’s unreasonable and wildly unrealistic to expect families to be able to handle such care, especially with many caring for their own kids, own health issues, working full time, etc.

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I am so sorry that the intake nurse was so insensitive. She should not be doing that job.

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@Youdont_tday good luck! I think a lot of us can relate. I hope the therapist is helpful and good move on your part to schedule the appointment. You deserve support!

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This 100%!! I did have my father die at home and it was NOT a good experience for me and probably him. I was basically alone, and needed to make judgement calls on how much morphine to give etc, and I don’t feel I made the right calls.

Also, one of my sons needed a PICC line and I vividly remember the nurse not being able to get to us because of snowstorms. There definitely isn’t help available when you need it in rural areas (Rural areas within 90 miles of NYC).

I am completely opposed to the home hospitalizations unless a nurse can come within a short amount of time. There is no way this works without a huge burden of care being pushed onto families.

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In our family, several family members are MDs but my sister who has NO medical training ended up giving my dad his IV antibiotics for weeks because the others were too busy with their careers. It is a heavy burden and unfair to place it on the family—we would have had to pay a lot that was unreimbursed if no family member was willing and able to do it!

And that’s the problem - some families don’t have any other choice.

I can’t imagine how we would have managed if my parents couldn’t have afforded private caregivers and in facility memory care.

My uncle, who just passed away at 89, was one of those people. With just a tiny pension, no savings, the “choices” were few. My cousin was visiting when the covid lockdowns happened, and ended up spending 3 years there to take care of his Dad with a patchwork of insufficient social services, coverage, and a lot of emergency room visits. Cousin gave up his job and started freelancing to make ends meet. People lauded him for his caregiving but he has said privately that it was never a choice he wanted to make but you can’t just abandon a parent. Has also said that with proper care, his Dad would have lived a bit longer and definitely more comfortably.

I LOVED the therapist. Thanks everyone for your support.

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So glad the therapist visit was productive. Was it just for you? Or did it also include your mom and/or sibs?

HAHAHAHAHAHAHAHAHAHAHA :rofl: :rofl: :rofl:

No disrespect meant to you, @Colorado_mom, but I remember asking my mom whether our family could attend therapy when I was a teen and her laughing at me, so, no, my family is not in therapy with me.

I’m so glad you found it useful! I’ve thought for a long time that I should pursue some form of therapy to deal with the feelings brought out from uninvolved and disinterested siblings regarding my mom and her care (and then later, her funeral). I didn’t even have to deal with conflicting ideas about her care, so can only imagine how frustrating that would be.

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