Parents caring for the parent support thread (Part 2)

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1606

My dad had a tiny bathroom but still had grab bars installed for the toilet and shower. The grab bar was in front of toilet so could be used to pull up. If I remember correctly the county actually installed them free–cheaper to install bars than have to respond for a fall or help.

A small shower is probably better off with a shower stool which can be adjusted for height rather a built in seat. Plus you can buy them side rails if needed. We carpeted the bathroom floor totally (tiny bath) with bath rugs which I cut to fit to prevent him slipping (easy to pull up and wash). Warmer too.

If a toilet seat needs raising they make more than one size–my dad was tall and the toilet low so his was ordered had a 5 inch raise (much higher than what you normally find). If there is enough room between sink and toilet you can buy rails to put on toilet.

My dad always said he was born cold. Drove my sis and I nuts taking care of him because he always wanted the house at 80 degrees–and then he’d sleep with a blanket. I sympathize with you.

Between WalMart, Amazon and Goodwill we were able to outfit the house pretty well. It’ll be difficult to know exactly what might be needed until he gets there.

Stairs are a concern. I do know many people have installed a stair lift with good results.

How high is the bed? Sometimes a higher bed is easier to get in and out of but if he actually would need a step? Ugh.

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1607

Thank you all. I will try to answer what I know - with the added complication that, overnight, the partner has emailed me and essentially urged us to speed up the timeline to get him out. We’ll have to push back a bit on that; we have out of town plans in early October (my daughter’s 21st birthday!).

Great suggestions on checking local senior agencies, and I’ll do that.
It seems unlikely we can get the bathroom remodel done now before he arrives. And that’s OK, because upstairs, we have a huge walk-in shower in our master bath - big enough for a shower chair - and he can use the pullout couch in the study and use our bathroom until downstairs is ready.

Downstairs bathroom is tub/shower combo. It was in need of a major overhaul even before this, so it’s not what I consider unnecessary work at all.

Downstairs bedroom with tall bed: it’s built into an alcove, so walls on 3 sides. It’s a kind of wide twin; not quite full. Pic attached. A nightstand next to the bed would need to be about 33 inches tall to be flush with the mattress.

For the stairs, chair lift is possible and the downstairs family room is big enough for a hospital bed. I’d think that if we get to that point, we will have progressed to full-time care elsewhere, though. The partner’s home is a 3-level townhome, and he (carefully) navigates those stairs every day at this point. Only once a day, though; once he’s downstairs, he stays there until going up to bed.

As far as the mechanics of the disease etc: He was diagnosed around the beginning of the year with sarcoma on his head. I cannot speak to the rapidity of his decline; we had not visited for several years. His partner is from South America; English is not her first language, and there are difficulties in nuances sometimes, so I don’t know if I get an accurate picture all the time.

My best guest is that the frailty was from the radiation treatment (which ended in spring)? But since I started urging the Ensure and more protein, the partner says he’s gotten stronger. He’s walked the dog with her a couple times. But he’s also fallen a couple of times in the past 2 months, due to misjudging steps; that kind of thing.

He is currently receiving Keytruda transfusions, one per month. Scans show that it is working to reduce the sarcoma mass on his head. We will transfer the treatment to our area. That’s the gist of what I know.

I will try to get a better time frame on life expectancy. And yes, I understand that moving to hospice negates the possibility of continuing treatment.

seneca bed
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1608

Ohgoodness, hang in there.

The bed steps aren’t a solution, I think. He has to aim for that specific object (the steps) and there’s some real chance he’ll miss them and fall. I would get a bed rail like you use for kids if the step is there (the railing redirects to the step)

You want as many grab bars as you can get. Even at 100 lbs, manuevering another person is easier if you have , and he has, a grab bar. The sink will not be enough as anything you have to lean to get makes the fall more likely.

Contact PA county aging office, and ask for referrals or help, I think all our counties have one.

Good luck and hugs to you all

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1609

IDK if in your area you have easy access for your dad to pick up a PCP/group. Maybe your own PCP will accept dad. Since he is going to have oncology following (both hematology/oncologist and radiation oncologist) - I would contact those offices to get appointments once you ‘know’ when he is actually getting moved to your area. Can discuss with his medical providers to get whatever records available for access by new medical providers.

Once things are ‘settled’ with dad medically in PA, then you can get a feel about how he is really doing with his stage IV disease.

Will also see about his Medicare Supplement and Drug Plan with the move - and seeing if any changes are needed (and able to do based on his medical situation). There is free help with evaluating the plans and what you can do in PA.

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1610

Sorry, I’d nix that bed. Needing a step is a no-go in my opinion. Just an accident waiting to happen. And falling at his age can mean long time bed ridden.
Can you switch your son’s room? Does it have a better bed situation? I know it’s extra work but might be the better solution.
Or…can the mattress be switched for a lower one? Or the bottom drawers removed to lower the bed in some way?

This might sound a bit crazy but my dad really found a blow up mattress comfortable (topped with a comforter). My sister was the one actually using it but my dad claimed it a few times.
It was tucked in a corner so walls on two sides. We adjusted the height (it was a camping mattress) using couch cushions. Now of course you can buy a “spider bed” that you could buy at different heights. They are very comfortable and can adjust the firmness. Plus very portable and storable. And relatively inexpensive. Good short term solution to get started at least.

No matter the solution to the bed whether a recliner, pull out couch etc., blow up bed, the nightstand is a piece of cake–use a TV tray table. Or even two. Portable, easily moved, easily cleaned, inexpensive. We used one as a nightstand (it was easier than the actual nightstand we had) but could move it very close to bed at night to act as sort of a guard rail.

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1611

I also wouldn’t recommend a bed that is so tall that a step stool is required. Maybe a hospital bed in the study?

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1612

I would want a lot more info on the state of his health, treatment side effects, and life expectancy. There is info online but individual variation occurs, of course.

Sarcoma: Prognosis & Life Expectancy | Sarcoma Survival Rate (healthgrades.com)

Keytruda Looks Promising in Phase 2 Study of Sarcoma (curetoday.com)

Side Effects of KEYTRUDA® (pembrolizumab)

Is his cancer “in the head” soft tissue? Localized, regional or distant spread? Grade, size? Do you have health care proxy so you can talk to doctors? I understand he is competent but perhaps he would be on board with you knowing more.

I honestly don’t see how you can plan anything without a ballpark for decline. (Of course our parents often confound this, but still…)

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1613

We have a charity group here that lends any equipment you need (and asks for a donation). They were great as sometimes we’d get something (a wheelchair) that no one wants at all and some things we couldn’t live without. Canes, toilet seats, shower chairs. They offered up different versions and we could try them out.

:Things we used : (father, 6’2") had his own walker with the seat and basket under the seat. The rail you put between box spring and mattress that allowed him to pull himself out of bed.

Mother (5’2", but now more like 5’), shower bench (also installed a new shower head that is adjustable so she can sit on bench); walker with a cute little bag someone sewed so she could carry things around, multiple canes, She has settled on trek poles and I haven’t seen her use a cane in a while., but she tried out about 4 different versions of canes.

Brother (6’4") had to have lower leg amputated. Shower bench, bed rail, walker.

Brother (6’2") had hip replacement and knee replacement. Walker, crutches,

They all liked the sticks you use to pick things up off the floor or off a high shelf with a trigger action grip.

The charity even had ramps you could set up to get into the house, either permanent or temporarily.

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1614

EVERYBODY loves those no matter how old you are. Some have a wider expanse though and more useful.

You see bags most often used with walkers to carry things but even more useful is a walker tray so you can put food and drink on it. I also bought a bicycle water bottle carrier and attached it to my dad’s walker (He gerry-rigged it to hold his water glass). Best 6 bucks I spent at WalMart. Go to the bike accessories and see what you can add to “upgrade” a walker.
I almost added a bell but I knew he’d ring it!

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1615

Thanks again, so so much.

That is a wonderful idea to check first with my own PCP. He’s great. Was chair of the county doctors association and knows everyone and everything. And thanks for the ideas of seeking out the local orgs for supplies and guidance.

As for the bed, will see whether we can somehow McGyver it. I have not checked to see if it’s nailed into the wall itself; it was built in, but may not be completely immoveable. Later today…

Son’s bedroom is godawful and we try never to go in there :slight_smile: Typical 17YO. Moving him and getting that bedroom fit for human habitation would be more difficult and time-consuming than building a completely new room out of Legos in the family room space.

(Son’s bedroom is also very cold; a factor of the whacked HVAC downstairs that funnels all the heat & A/C into the daughter’s room and not his. Not fixable without ripping out the ceilings and redoing HVAC. Note to future families: DO NOT DIY. JUST DON’T.)

All that said, if the daughter bed cannot be adjusted down, we will be left with 3 options: move dad to son’s bedroom, keep dad in upstairs study or put something like a daybed in the family room. All have pros but way more cons. Oh, I guess a 4th option would be putting him in our master bedroom.

But we can figure these things out. I really appreciate the from-a-distance perspective on the bed in my daughter’s room. It had been worrying me, but y’all have solidified the issue for me, that it needs to be addressed beyond a stepstool.

As for the cancer. It’s soft-tissue but has spread to the bone. No surgery option. I don’t know grade/size, but I’ve seen pix and it’s pretty gruesome. We had been told to expect a range of side effects on the Keytruda infusions, but he has not experienced any. He’s had 3 treatments. I expect that once his care moves to PA, we will have much more detail.

This has all happened in the space of a week; I was not expecting to have to become the caregiver before last Sunday night, and so I was letting the partner handle the nitty-gritty. Work had kept me from focusing in depth, and tbh, I’ve been kind of deer-in-the-headlights.

1616

We outfitted my parents’ place with items similar to these to help with mobility.

Drive Medical RTL12027RA 2-in-1 Raised Toilet Seat with Removable Padded Arms, Standard Seat https://a.co/d/6SlNaTo

DMI Tub Transfer Bench and Shower Chair with Non Slip Aluminum Body, Adjustable Seat Height and Cut Out Access, Holds Weight up to 400 Lbs, Bath and Shower Safety, Transfer Bench https://a.co/d/37OCQcv

We got my FIL a heated footrest and it seemed to help. He was always cold. Livtribe Heated Foot Rest Under Desk, Memory Foam Footstool with Switchable Cover, High Rebound Memory Foam Footrest for Office, Home https://a.co/d/9QzSpsB

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1617

I’m so sorry you have this challenging and very pressing situation to deal with. I, too, would recommend nixing the built-in bed. And I don’t think I would put a frail, elderly person on a pull-out sofa bed. They usually aren’t very comfortable and are often too low for someone to get out of easily. As your father’s health declines, he may want to lie down for naps frequently. You didn’t ask about the logistics of moving him, but that will be stressful, as well. Several years ago, I had to move my elderly father about a thousand miles when he moved out of his home and into assisted living. My brother-in-law helped me fly with him. At the time, he could walk short distances, but was weak and he fell frequently. Flying was hard, but driving him would have been a real nightmare. If you fly, you need to arrange with the airline in advance to have wheelchair assistance. It didn’t sound like he has much that needs to be moved. You could check into using a small pod to move his possessions or just ship his stuff.

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1618

Don’t underestimate the blow up bed.
There are GREAT portable space (and safe) heaters. Godsend to just plug one in and be done.
Comfort! Go with easy fixes as you go along before getting invested in bigger stuff. It’ll be okay. You are not the first person to navigate this road (although it always feels like it).

Bunch of you can quit reading. I can’t give medical advice.
But get your dad CALORIES if he needs them to gain weight. Any way, any how. Don’t play nutritionist. Ensure isn’t going to provide it. (You might need much higher calorie supplements that you normally find in the grocery store. Good options are available ) Vegetables won’t keep him going.
Give him ice cream, cake, anything he likes that he’ll eat. Don’t nag him for “healthy” choices. The medical establishment has a thousand reasons not to eat sugar and salt but never seems to acknowledge that at some point calories can mean more.

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1619

Always amazed at the variety of products now available. Everytime I ran across a problem my dad had it seemed someone had a solution for it already.

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1620

My dad hated regular Ensure…but somebody here mentioned the clear, fruit flavored kind, and he and my Mom just love it. When things settle more, that’s a choice.

You don’t have to do everything at once. You will MacGyver and change and fix and change…but your Dad is lucky to have you to do this for him. It is the bravest thing ever, be easy on yourself.

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1621

Good advice on nutrition but I would not push eating and drinking if he really doesn’t want to. I just had three months of my mother not eating: she lost 40 pounds. I gave her bites for pleasure rather than calories. This was the advice I got. (She just resumed eating, mysteriously.)

You will know more about the medical situation when he moves. Soft tissue that has moved to bone and cannot be surgically removed, does not sound good, but lack of side effects with Ketruda is hopeful.

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1622

GREAT NEWS.
The bed is not nailed down to anything. We can literally pull the whole thing out, mattress, drawers, platform and all.
We talked to my son. He’s agreeable. So we’ll move the tall bed into his room and move his twin bed into the alcove. It is a mattress on slats - Ikea bed.

Hmm, that might actually be too low. Hard to get up from there.
We could get a box spring, I suppose. Or just go for the walker now. Might be best to do that, I think.

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1623

That’s a huge plus! Yea! But right now you don’t know if it’s too low–that’s a pretty easy fix using bed blocks actually. Save that for later. Don’t always be too quick to anticipate needs. Always good to think ahead though!

Perhaps you know this–but when you actually take charge…
Please let your dad claim his living space. He’s making huge adjustments to his lifestyle as you are to yours. Save some decisions for him. Give him options no matter how small.

It all changes in a topsy turvy way–you are calling the shots now. He is now a guest in your home rather than being the parent in charge of you. And you are still in charge of your home–you aren’t just his kid–you are his new caregiver. Sometimes you can give into a lot of “orders” (so to speak) from a parent but at other times you have to be the “parent”. Just saying it’s not always an easy transition. Give in when it doesn’t matter and stick to your guns when it does,

Not everything needs to be perfect when he gets there. Showing him you can make even the most minor adjustments will make a difference. It can be his fix–not everything hangs on you.

*When I spent time taking care of my dad over a few years it was hard–but I’ll say now (not always!) that every moment was more precious than I realized at the time. We had some real flat out arguments. Ugh. But it was so worth it. I think we both learned a lot in the process.
I’m the one that grew up.

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1624

Sometimes changing residence–everything an old person knows, so he can do many things like find the bathroom without thinking–can be tremendously disorienting. Just in case he seems completely helpless and disoriented in the beginning doesn’t mean it will always be that way. My dad and stepmother used to go to Florida for a few months in the winter and the last few years, my stepmother was totally disoriented coming home (probably when they arrived too, but I didn’t see that). Mostly she got back to baseline in a week or two but the move itself may stress him out and may not be a good indicator of his capabilities. Just in case this is what happens, it’s good to know. Of course it can be very discouraging to you and your family!

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1625

I can’t second this enough. No matter how great your dad is mind-wise it’ll be a big transition to new surroundings for him.

Hopefully it goes smoothly and life is hunky dory but just in case…

EVERYTHING he knows will have a new spot. And people. He’s losing a person he’s lived with for years. There will be a mourning period. He might not even recognize that now. He’s mourning relationships, his past life, his health. Not easy for anybody.

We are creatures of routine and the older we get the more it is true. Do not be surprised if there is an anger backlash against you. Don’t take it personally. He might have anger that seems to be focused on you at some point–but keep going. It is not about you–it’s about life changes.

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