2nd guessing decisions while caregiving

Anonymousjpl123

Hi everyone happy Sunday. I have had a whirlwind and just need to vent. Any thoughts/ideas welcome.

1) Mom is cleared for shunt surgery Thursday (two x almost not cleared last week: A1c was high, which through new medication and diet we miraculously lowered enough in 2 months; cardiologist had concerns re hypertension). Doctors worked together and decided it’s a go. Good health care, but stressful and lots of doctor appts for mom. Mom forgot her best friend on the phone for the first time; meltdown with me and staff one evening; overall more disoriented.

2) At my first MC family group, I learned another adult daughter’s mom (resident) also has NPH and dementia. She’s taking a much more “hands off” approach focused on comfort and safety. Felt surgery would be too risky and disorienting, shunt requires maintenance, etc. It made me realize there are no right answers.

3) Overall, since her breakdown in august, my mom HAS gotten worse. But was it the move to MC? Preparing for surgery? Would have happened anyway even if she stayed in AL?

So much second guessing. It is an enormous responsibility to make decisions for another person. When she first moved to MC, some people (acquaintances and staff at AL who didn’t know her situation) questioned the move. I didn’t at the time. It’s easy to blame the move to MC but my logical mind knows better.

I also work full time, so I am tired and stressed on top of it. I know I’m a broken record. It’s just so exhausting.

M1

Hard not to second guess yourself i know, but you've got a plan and I would stick with it. NPH shunts generally don't require much maintenance. If you don't proceed, you're going to always wonder whether it would have benefited her.

From what you've written, your mom needed MC regardless. Don't second guess that.

I try to remind myself frequently that my partner is at the end of her natural lifespan and has a terminal illness that is generally untreatable and out of my hands. We all make the best decisions we can. I chose to treat her recently intervening illness, but there will be another down the road. It's all hard.

Let us know how it goes this week.

Anonymousjpl123

@M1 thanks as always. I am sticking with the plan, for exactly the reason you said. I’m just now realizing I’m in that same reality - mom’s at the end of her natural lifespan with a terminal illness, in her case progressing quite rapidly at the moment.

I can do two things: 1) make sure she is safe, connected, and cared for, and 2) see if there are treatments that can help. I am only just beginning to see what you see with your partner: we treat what we can, knowing we are on this journey.

This seems to be one of those things that only people coping with it really “get.” My dearest lifelong friends (who I love) miss the mark more often than not lately when I vent, through no fault of theirs. As you say, it’s all hard right now and that’s ok.

I hope you and your partner have a good week. Thanks.

Mint

Jpl you are right there is no right or wrong. Decisions that we make are based on a lot of things, including our past experiences or lack of them. Be kind to yourself.

jfkoc

How can one not second guess. We so want to do the very best but is there a best? Maybe there is just "I think this is better".

Please keep us updated...

[Deleted User]

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Anonymousjpl123

@Victoria2020 we were “lucky” in the sense that the vast majority of neurologists and neurosurgeons who have seen her in the past year all agreed on NPH. The bigger issue was getting her to the appointments since she saw nothing wrong with herself. Part of me wishes I could have just let her think everything was ok, but I had to see if the lumbar puncture would help.

It did. Not noticeably with her memory but she was a LOT better with walking - balance, gait, ease - and her sense of well being. She said she felt better after the procedure. Right now she can walk about 2-4 blocks before getting tired. If this can help her stay more mobile for longer that seems worth it. I do hope it helps other symptoms - incontinence, thinking - but even if not I would love her to feel more comfortable walking again. She did after the lumbar puncture.

Also, I just think knowing her and myself I will feel worse if I didn’t do everything I could to give her the best possible quality of life. She will deteriorate either way; this seems like a risk worth taking for her to feel better.

Wow, look at me sounding clear! Thank you @Victoria2020 for asking good questions.

Anonymousjpl123

After days of contemplation, an hour on the phone with the Alz Association hotline, and a good talk with my mom (which I’m sure she’ll forget) about the pros and cons of surgery, we’re moving forward. I’m so grateful for this space. I will keep you all posted. Keep mom and I in your prayers tomorrow! Thank you!

JeriLynn66

@Anonymousjpl123 Prayers right now for your Mama and for you. Let us know her progress when you can . Try to get good rest tonight.

harshedbuzz

@Anonymousjpl123

I hope things go well for you and mom today.

HB

Anonymousjpl123

@harshedbuzz @JeriLynn66 thank you so much for the well wishes. In the end, she wouldn’t go. This time no amount of bribes, fiblets, or heart to hearts from me or the staff would do it. She was adamant: I don’t want the surgery. I explained that it would help with mobility, and that she would probably be using a walker soon without it. I explained it could help with incontinence, balance, and just “make her feel better and clearer,” my euphemism for her dementia, but since she’s in denial about both of these things that was pointless. Finally, I said not having the surgery would mean definitely staying where she is and she was fine with that. Staff, her grandchild, this time none of us could get it done. She said she wanted to age, she wanted to do it organically, and she doesn’t want the shunt.

So here I am. At least I can feel good having created all the options.

It is true that I have been the one pushing for it. I cannot force her to do it. I just need to let it all be ok. I’m exhausted. Thanks to everyone who has followed this exhausting saga. I hope it helps someone.

Marta

You’ll never regret having tried. Rest a bit now.

harshedbuzz

@Anonymousjpl123

You truly went above and beyond.

HB

JeriLynn66

Rest your heart and your mind. You fought for a diagnosis, for treatments, to get Mom physically able to undergo surgery.. you’ve done ALL that could’ve possibly been done. Now there will be no regret.. Rest. Big hugs to you ❤️

M1

Oh well, right? I completely understand when there's nothing you can do.

Anonymousjpl123

@M1 it’s horrible, but I am still SO glad I pushed to get the diagnosis and the surgery scheduled. No matter what that benefits all involved.

Quilting brings calm

You did what you could. There’s just no way to get them to budge if they don’t want to cooperate. As I tell people- I can’t wrestle him to the ground or drag him to the car- both of those would be elder abuse. It’s possible that she doesn’t want anything that will prolong things.

My Mom cooperates as best she can in her confused state. My step-dad does not. I had to reschedule his initial neurologist appointment because he refused to go. It’s now for next week and he didn’t balk when I mentioned it the other day - but I don’t think he remembers what it’s for. I expect he will refuse to go the day off. Even though he’s already had the neuropsych testing.

Anonymousjpl123

Totally. I now join this sad group of people who’s loved ones didn’t want the shunt surgery. No, you cannot force people to get it against their wishes.

I now have to avoid the NPH support groups because caregivers of those without shunts seem like they are going through hell, with downward spirals often fast (3 to 5 years), in home care and memory care, and it’s depressing. Maybe she’ll agree to the shunt eventually and they will do the surgery, maybe not.

Im ok just in a new place with it all. Just realized how self pitying and bitter I sound. There’s a lot to be grateful for. Thank you everyone for the kind responses!