Parents Caring for Parents Support Thread (Part 2)

The whole problem is not just that one spot with the perforated ulcer, but the entire condition of that GI tract system. IDK if they totally were against operating and possibly what they would find, as well as surgery with her age. I have been surprised by some surgeries with individuals over 90, and if it was factors related to recovery from the ankle that had the perforated ulcer or if her system had become ‘fragile’ and not recoverable.

The decline, the shock of it all, the lack of options when one has a clear mind is heartbreaking.

Whatever adjustments she can personally make to have her care needs met when she does have people in the room – she wants to eat in the dining room, but they brought lunch to her room. When they distribute the meal trays, they don’t have two people to get her situated – she has to have been ready and then with the plan to have all meals in the dining room. At this point, she is barely eating and has little strength, so the meal tray was brought to her. That also coincides with the goal to have her gain enough strength for her to stand in order to transfer - a one assist maneuver.

Hard to know what pain level she is having with the ulcer, as well as pain with eating/drinking or she has adjusted to eating very little for perhaps a variety of reasons.

The information about a Hospice that offers PT and OT - perhaps another Hospice can get hired that will offer these services. That is a light of hope in this situation IMHO.

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Mom was in hospice for only 30 hours before she passed. The nursing staff was fantastic, what they do truly is a calling.

The security staff OTOH, were soulless. This was early 2023, few COVID restrictions were still in place society-wise, yet security would only allow 4 people into a patients room. There were 6 of us, 3 of her kids plus spouses.

We had to sneak into her room to be with her in her final hours. Once they yelled at one couple and they had to wait not in the lobby, mind you, but OUTSIDE, in New England February weather!!

Rules be damned, we were all there when Mom passed, despite the best efforts of people with a uniform and badge, but no heart.

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My daughter is visiting MIL today, so I might get more useful information. I guess because we are a more medical family that we think differently than the others. I had a wonderful experience with the hospice company I used for my dad and my husband and would have liked for my MIL to have used them. The PCH she is in has a hospice they used and recommended them as they “are here everyday.” I have told my SIL several times if they are not happy with this one, they can change. We will see if this one improves. Maybe the difference in not the company, but being in a facility, vs. my dad and husband being home, but I still think they dropped the ball at the start.

My FIL was in a hospice facility 15 years ago that was wonderful, but unfortunately it has closed. The closest, decent hospice facility was too far, and MIL did not want to go there as it was too far for the family to visit. :woman_shrugging:

As far as PT, hopefully she will be ok with what hospice is ordering, IF they actually order it.

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I’ve mentioned before that H was supposed to be the one who handled my in laws’ financial affairs, but MIL changed it to SIL after FIL died. Big mistake, but it’s her money. SIL is clueless & lets her H do everything. He’s not much better. He threw away important documents (“There was nothing important “), he didn’t dig into MIL’s affairs properly (resulting in an annuity he “didn’t know about “), etc.

He has been saying that MIL’s long term care money will last until she’s 102 - spring of 2029. Today, I found a statement from the LTC monthly statement that indicated how much money she had left on the contract. It was from 3/2022, but I can subtract … and she actually has a little less than a year left. That is an important detail to know when determining how to manage MIL’s remaining assets. It’s frustrating to have to cede control to people who don’t know what they’re doing - but think they do. (I am a control freak, so it’s especially difficult for me!)

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A good reminder to make a list of papers/documents that heirs will need for estate purposes. Sometimes you didn’t know it was important until somebody asks for it.

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To keep this on topic, I will add to keep the paperwork on capital improvements, surveys, etc. to the house! It may not matter if it passes to survivors and one gets the stepped-up basis, but it DOES matter if the parents need it sold sooner to pay for care.

Had previous leadership at our synagogue toss blueprints and other historical documents because “they’re old and we don’t need them.” When the congregation is selling the building and the current president is responsible for assembling documents for the buyer, you DO!

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I have a file with receipts from all of the home improvements we have done in our house. My H commented that there’s no way we would get more than $500,000 more than we paid for our house (we’ll downsize before the value increases that much). I reminded him that if one of us dies before the house is sold, the other only gets a $250,000 capital gains exemption … and we would definitely get >$250,000 more than we paid for it. That’s something to keep in mind when assisting our parents as they age.

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We’ve been in our original house 28 years and the house value has more than tripled. We are getting close to a 500k increase (thanks, DC housing market; the house is worth a third of the price where my sibs and dad live) and we don’t plan to sell any time soon. I have a big file of improvements and a spreadsheet. Better safe than sorry!

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Mom fell this morning and was sent to the ER. They did CT and xrays, nothing is broken, so they just sent her back to AL. Local is there and says she seems okay. Has a huge bruise on her forehead and her platelet count dropped 150 pts but the Dr said he had no theory on why so back she goes, just “watch for signs of a concussion” like being sleepy or disoriented :face_with_raised_eyebrow:

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I don’t generally post on this thread, so I’m sorry if I’m just coming on to unload, but…I need to unload. Please bear with me.

It has been an exceptionally rough few months with both of my parents. My mom as hospitalized on Christmas Day, with multi-system organ failure (won’t get into it, but I had to call the EMT against their wishes when I could see that he couldn’t breathe…my dad, in particular, was salty about our planned brunch being ruined :face_with_spiral_eyes: ). After a few touch and go days, it was determined that the root cause was acute kidney failure (cause unknown). She has somehow made a miraculous recovery and came home in mid-February and is doing quite well.

While all of this was going on and I was spending every day with my dad, the “forgetfulness” that my father had been exhibiting for at least a year–but that was always downplayed by both of them–became painfully obviously a sign of a serious neurological problem (difficulty with EF, irrational thoughts, anger, vision problems). Long story short (and 3 car accidents later), it turns out he has a very large meningioma. He is scheduled for a craniotomy on 4/22. He is 85 and there is a 15-20% chance he will not survive the surgery. In the meantime, he is on steroids to reduce the pressure and he is completely manic and well, unhinged. The littlest thing will set him off and the anger is so outsized.

He insisted on going to the No Kings rally last week, and took a fall, necessitating an ER visit (thankfully, no serious injury). A week later (last Saturday) he started complaining his foot hurt, saying me must have injured it when he fell (which made no sense). By Sunday his lower leg was red, swollen, hot…but he refused to go the ER. Maybe I’m a terrible daughter, but I just decided not to fight him on it.

Anyway, so now he is hospitalized receiving IV abx for cellulitis. Hard to know how or if this will impact his planned surgery in a couple of weeks. My poor mother is so wiped out. Is it awful of me to just want this to end, even if that means he dies? :disappointed_face:

If you made it this far, thank you. My D20 has been on me to find a therapist to work through this time in my life, but having not started one yet, this thread is the next best thing I’ve got.

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Sending big virtual hugs your way. Vent any time you need. It’s so incredibly hard dealing with aging parents and trying to balance their wants and what makes more logical sense.

You are NOT a terrible daughter. We all have/had to pick our battles.

More hugs!

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What an awful lot to deal with. The irrational anger and personality change sounds so traumatizing. Try to find 5 minutes peace (an RN once told me “go cry in the shower where noone can hear you”)

I don’t think you are terrible for wanting resolution in whatever form that may take. It would be hard to watch or wish for suffering that seems without end. Hugs to you. Thanks for letting us know, in this safe space.

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This is right where you need to be! I started therapy after my dad died and my mom started going downhill, and it was so helpful.

I always said I’m ready for them to go but not ready for them to be gone. Ambivalence about this stage is perfectly normal.

I agree with you that you have to pick your battles. You can’t fight them on every single thing. For me, save battles for the big things. From what I’ve read, that would be not letting him drive again. Three accidents in a year? Let doctor be the bad guy and say that he can no longer drive. He could kill someone.

You don’t mention siblings. Do you have any help?

Come back and post often. We understand.

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There was something that happened near the end of my mom’s life that I didn’t realize was as important as it ended up being. Years later, with clarity that hindsight brings, I understand that I couldn’t have known the significance, and TBH, as traumatizing as everything was, it was a blessing in disguise. I don’t say that IRL, but I do feel it.

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Gosh, I wish I could post two Hugs on that post! So hard that you have to deal with issues with both parents. Sounds like you have done everything you possibly could to give them your support. (On a logistics note, double check that they have paperwork naming more than each other for healthcare proxy etc. Both are in rough shape.)

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Thanks for all of the support. I am actually getting teary reading some of these responses.

My dad doesn’t drive anymore (gave it up in December after the last accident). I have a brother, who helps quite a lot, but their relationship is fraught to begin with, and having my dad all ‘roid raged isn’t helping that situation. It is best to keep them apart. He does a lot of the behind the scenes help (running errands, household chores) and I manage the medical stuff. My D20 is living locally again, and she pops in to see them for visits (wellness checks) a few times a week, which is helpful.

I had a good conversation with my mom over the weekend, where we discussed what their healthcare wishes are (they both have DNRs, so if he has a stroke on the operating table, they will not try to save his life) as well as a general picture of the financial situation (I wanted to make sure her name was on everything, as my dad has always handled all the money). Should my father pass or become completely mentally incapacitated, I will ask to be put on the accounts with her, in the event that she is unable to manage things.

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Just added my voice to saying that you are a good daughter in a tough situation. You are doing your best and doing a lot. Please continue posting when you need to.

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We don’t want you on this thread but we SO want you on this thread when it’s helps you - I hope that makes sense!

We don’t wish anyone the need to post here because they are “parents helping parents” - but it’s necessary. Whenever someone posts we not only feel and support that person but many others gain knowledge and empathy and perhaps don’t feel so alone.

This thread is so important. Your feeling and all thoughts are valid. Therapists are great. CC is sort of the next best thing! :heart:

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It’s super hard. I only have one parent left and in many ways she’s in pretty good shape, albeit not able to live on her own. But I have a lot of the same thoughts. This thread is very useful and supportive and so is just remembering you can only do what you can do.

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I’m so sorry. These things are so hard, especially when you have prednisone rage on top of everything else. My dad always got angry when he was confused and toward the end of his life, he was confused a lot. We were near often, so we got a lot of his anger focused on us. We reminded ourselves and each other that it’s not personal, it was his way of coping because he was so used to being in charge and he was confused and scared by the confusion.

Hang in there and support your brother and get support from him! We are here with you! Take care of YOURSELF!

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