@compmom - thinking of you and hope that today’s meeting is productive. I spent plenty of time reviewing meds for my folks with medical staffs; doing that cost-benefit analysis of side effects, mounting risk of drug interactions, potential benefits, etc. A hospice Dr with a focus on geriatric pharmacology was extremely helpful. All my best. You are truly walking the walk.
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I left three messages on the hospice nurse’s line before the meeting. 1) let’s drop the gabapentin 2) let’s test for UTI and 3) the only med that has improved well-being is morphine
Nurse called after the meeting with team and MD and they agreed to all 3. Tomorrow I will assist my mother with a urine test and drive it over to the hospital lab. The hospice folks asked me if I wanted to drop the gabapentin now or wait for the results on UTI and since it is only 24 hours, I thought, wait. I also requested a period of “med wash”, two weeks minimum with no sedating meds before we try the morphine, so we can tell what’s what.
My brother is experiencing the increased hostility and meanness as well as the tears about going home to her mother and father, who are long gone. He tends to call and say “she is out of her mind” or “trainwreck.” Glad he is getting it!
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We saw my inlaws this weekend. They are quite a bit younger than my folks, and we ended up having an overdue conversation about their aging plans. DH stressed to them it isn’t enough to have a will, they need some sort of aging plan.
They were surprised by many things, so it was awkward but useful. They believe you can just hire a nurse of your choice whenever you think you need help. That hospitals can’t discharge you to anywhere but home. That power of attorney means you don’t need an executor. They can always live downstairs (but, I said, there’s no kitchen) . And the big odd shock was finding out they’ve been hanging on to real estate 1100 miles away because they thought DH would want to inherit it so he could retire.
They were stunned to discover we have accumulated our own retirement funds, and DH would never want to be a landlord or manage homes. My FiL was really baffled. Another lesson in bringing the subject up.
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Kudos for having the discussion. My inlaws refuse to discuss. Said everything is arranged and told H where to find the folders with their plans and the number of their attorney. We finally got him to at least address advanced directives, and where he wants to be buried (there is a second wife), but it would be much better if he would be open to having a conversation.
We had decided to use my parents’ difficulties as an illustration of how complicated things get (and how quickly) so I think that kept it a bit distanced, which helped them actually listen. That gray area between “fine” and “clearly need help” is hard for our elders to accept and plan for.
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After three months in bed, my mother mysteriously got up, put jazzy lipstick on and went downstairs to get her gin (diluted) and eat dinner. Then lunch the next day (yesterday). She has no memory of being in bed so when everyone greets her with “Nice to see you!” she is surprised.
I gave her a talking to the day before she got up. She was calling me 25+ times/day and I couldn’t take it anymore. I told her she was better because she seemed restless and bored rather than sleepy. I basically made her go down the hall in her wheelchair. I doubt she remembered any of this so probably didn’t motivate her, but I did start pushing more.
I have to be tricky: slip the skirt on without asking and then that triggers a desire to finish dressing. Let her start walking (she insists she can) and have wheelchair at the ready. Etc.
Her new developments were dependent on my presence but yesterday afternoon I went home and the facility managed to get her downstairs and back up (for $9500/month!).
I attribute this change to gabapentin, and also to improvement in anemia because lying down stopped her uterine bleeding. We’ll see what happens. Seven year saga!
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ps She has lost 40 lbs and clothes hang off of her but she has also started eating! Pharmacist says that may be due to gabapentin as well. I highly recommend speaking with pharmacists on med decisions. After speaking with pharmacist about improvements on this med but also activation (phone calls!), we made a plan to add a dose so she gets it 3 times/day rather than 2. Hoping to address crazy stuff with sundowning but we’ll see. Every day around 3pm she thinks her parents are alive, or urgently needs to get to her non-existent car parked in a supermarket lot!
At this point hospice does what I would like but having pharmacist recommendation made me feel more legit in my request.
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We are all with you @compmom. Today, my mother moves into an Independent Building in a CCRC closer to me. She left Florida last week. It will be a big adjustment for both of us. Mom is 91 and was still driving but decided to give it up here. I need to get used to all the walkers. I f DT ont think of her as old.
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Good luck with the move!
Just in case anybody is unaware, you can buy rear wheels for a regular folding walker instead of using glides or tennis balls on the back posts. Much easier to use. Made so that walker brakes when stopping.
A woman I know must have been ‘required’ to ‘try’ to use a cane - it is a metal one with the base prongs. It has a yellow ribbon on it (a ‘gift’??). She has it lifted off the ground when she is walking with it. I guess she is ‘using it’ but also showing she doesn’t need it…she is in her 80’s. I suspect her husband has either seen her fall or seen her stumble. He seems more fit on appearance - he has excellent posture and seems energetic, while she seems more frail. I wonder how many weeks she will be doing this before either eliminating its use or truly using it.
My dad did something similar for awhile (and then forget to bring his cane with him). He usually did alright but would “run out of steam” occassionally with nowhere to grab onto or sit down to rest. The cane provided support to get his breath and rest a minute (He eventually progressed to a walker). More of an insurance policy than actual need at the time.
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People with osteoporosis that is advanced, should probably consider ski poles or a cane, at the very least, even if balance and vigor seem fine.
@compmom I’m so glad your mom is having some good times.
Are you saying you are attributing the improvement to stopping the gabapentine? I am interested in the good and bad sides of gabapentine.
Sorry to be confusing. It is hard to tease out what is causing what. If the crazy stuff late afternoon and evening is sundowning, the gabapentin is not responsible. But it is also not handling it (nor did Haldol, Ativan, or Trazadone). However her appetite has increased and she is eating, and the pharmacist said that the gabapentin probably did that.
We expected her to be sleepier but she is sleeping less on the gabapentin. So staying in bed is more boring. I interpret this as being “activating” rather than “sedating” which we did not expect.
Rather than stopping it, we are trying to add a dose in case the agitation and delusions in the late afternoon and evening is from a drop off in the level of the drug, which has been given at 8 and 8. Drop off in meds can contribute to sundowning, according to the pharmacist.
We’ll see what happens and I can post about it if it is helpful. She backslid today and was in bed, of course. But ate! Her pants hang off her and I could almost put my whole self in the extra yardage. So eating is good !
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Very happy to come across this thread again. I posted a few times in 17-18 when my mother was having problems; she died in August 2018 after a massive stroke. My brother, who was local, was her caregiver, while I was 1,200 miles away through it all.
Now, sigh, it’s my turn.
My dad, who lives in Seattle (I live in PA), has been diagnosed with terminal cancer. He’s 89 and has lived with his partner for 10 years. They aren’t married. She is 10 years younger and a widow; she was caregiver for her own husband, who also died of cancer, about 15 years ago.
My dad’s partner has spent several months caring for my dad through various treatments (radiation, keytruda), shuttling him around to all his appointments, worrying about his health - he’s fallen a few times and has been extremely frail. But last month she decided she can’t do this anymore. Her mental health has suffered, and her family tells her she looks drawn and ill.
She is under no obligation, and I don’t blame her a bit.
So my husband and I are moving dad across the country to live with us.
Ack!
My dad was living in her home; he has no real estate or car in Seattle or even much in the way of furniture there. Lots of boxes of files and mementos, and a desk. Not sure there’s much else stuff.
The prognosis is typical cancer-speak: 3 months to 5 years. My dad has always been crazy-healthy; until Covid happened, he was still working out at a gym. Has all his mental faculties, all things considered. Like I said, though, he’s now frail. I flew out to visit him in July and he could walk a block, but it took all he had. He barely ate, rested and napped a lot all day, and I felt the most important thing was to work on that, so I urged protein and Ensure drinks, that sort of thing.
I will have many questions on this journey. But the most important ones right now are how to get our house ready for him.
We have a raised ranch. Kitchen, LR, DR and our bedroom/study/ are on the top floor.
Downstairs are two kids’ bedrooms, a family room and a very small full bath, with a tub, narrow vanity and toilet.
I’m trying to figure out what we can do so he can have his own floor down there, more or less (though he would come upstairs to eat, hang out if he wanted to, etc).
Both our kids are away at school and only home for breaks (and my daughter graduates college in May). We are giving dad my daughter’s room. The room needs a fresh coat of paint, but nothing else immediately. It does have a very high custom built-in bed that isn’t changeable. I worry about him falling out of it or not being able to get in or out, and I don’t know what to do about that. A railing of some sort? A sturdy stepstool?
The downstairs is a walkout basement, below grade on the back wall only. But it’s cool all the time, and my dad is maybe 100 pounds soaking wet and from Florida and is always cold. ALWAYS.
We will get a contractor in hopefully in the next month to overhaul the bathroom. It has a very cold vinyl floor and a very inefficient duct vent that doesn’t provide much heat. I was looking into one of those electric wall heaters or those Nu-Tone heat/fan light fixtures; if anyone has guidance on that I would appreciate it.
We’ll pull out the tub and put in a shower, and if there are any insights into how to do that cost-effectively, that’d be great. It couldn’t be a new-construction one-piece molded shower thingie, as there’d be no way to get it in the bathroom without knocking out walls, but I’m sure there are kits or something. I don’t think we have the money to do some spiffy custom all-tile palace like I see on the Kohler website. I think we need try for something with a seat, though, and safety bars, and a shower+hand-held combo, yes?
I see ADA-compliant toilets - are these something we need? What about grab bars? This bathroom is so tiny, he could probably hang on to the sink/vanity to sit on the toilet and wouldn’t need a grab bar.
I think that’s everything that’s time-sensitive right now.
Thank you for reading this far!
Check ASAP with any local senior agency/resources - which may have some leads with contractors for bath remodel to fit your needs. If the bath remodel cannot be done before his arrival - is the bath with a shower/tub or just a tub? IDK if you have scheduled when you are actually moving dad. With his weakness, he most likely will need showering assistance soon (if not already now). There are basic things - shower chair and other things, but someone to assist him.
In-laws had a main level addition just prior to them no longer going up the steps to bath/bed – which included main level laundry, main level bedroom, bathroom senior ready – accommodated wheel chair, large shower w/o threshold, easy commode, grab bars – use of a shower chair. 91 YO mother-in-law had bathroom and showering assistance at home before she went into skilled care (moved to facility just 2 weeks before she died), and when her caregiver had health issues – sons had to step in (MIL was very resistant for other caregivers, but then when her caregiver dropped out - she had to have specific help with showering and toileting). FIL had gone to skilled care a full 2 years earlier - but before then, the sons had to talk with him about female caregiver helping him with the shower when sons were not there. Son that lived nearby is a pharmacist (he was super in making sure about their care, and always kept their medications straight); another son and DH pitched in (DH spent long periods there over a 3 1/2 months - having retired just prior to caregiver’s unavailability) - and MIL was even resistant going to skilled care/nursing home – she thought DH could be her 24/7 caregiver (our home is 840 miles away).
There may be a local senior agency that has free home check on safety points - key will be for your dad to ambulate w/o the fall risks around that could potentially be avoided. They may be able to offer some solutions on the built in bed step up. If the bed is larger than a single, or is against a wall, falling out of the bed would not be very likely with tiny dad. But he may end up needing hospice very soon (which you can research available hospices in your area and select one for his evaluation - once you get him in the medical care system where you are; choose a hospice that you personally have heard good things about - a for profit or not-for-profit – whatever is ‘best care’) and may eventually need a hospital bed (for the bed adjustments, the rails to help pull up and also for safety) - so figure out logistics in that family room. His weakness may have him ‘napping’ in the family room a lot on the couch. You may want to think about a mini-frig and setting up some kind of snacking area - so you can have nourishments handy for him. IDK if he uses a recliner or would like a recliner - both my in-laws had their own recliner for many years. When he has energy, he can be with family meals. Once on Hospice, you can have hospice ‘respite period’ - where he can go into skilled care or rehab facility for a few days while the family can have a break (a friend and her husband take care of her now 100 YO mother who has lived with them for past 7/8 years) - mom came to the facility I had worked for twice for respite care time. Some areas do have a 24/7 hospice facility when the time comes.
Emotionally this is going to be a tough move for dad - there may be some kind of cancer support group available or senior center socialization (I hate to say ‘activity’ but aging seniors hanging out - particularly other men).
Plan as best you can. It will be a day by day process.
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Fyi,
Agree that Senior center may have resources for fall prevention, support groups.
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How long has he had cancer and how rapid was his decline? Was he frail before the cancer diagnosis? Or is the frailty from the cancer and/or treatment? Is he still barely eating? Sleeping a lot? Is he still receiving treatment? What kind?
I am asking because it sounds like he might be a candidate for hospice care. Hospice is not only for those whose death is imminent. My mother has been on hospice three times.
Hospice would help you with the home environment and provide a hospital bed. He could be in the family room.
From what you describe, I would talk to hospice or a similar end of life expert about your plans to renovate. He may not even need the shower if sponge baths are done and he could be upstairs a couple of times/week.
Your post makes me think that worries about getting the house ready are greatly increasing your stress, and some of them may not be necessary.
Is it possible to get a more narrow timeline for his life expectancy? If he isn’t eating and is sleeping a lot, and is “frail,” has trouble walking a block- when he was fit before the cancer- it honestly sounds like a hospice situation to me, but if treatment is continuing I am not sure how much treatment hospice Medicare would cover, so that is the main issue.
Still, talking to a hospice MD might be helpful.
ps rugs will warm up cool floors- and are safe as long as pads are underneath
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I agree that talking to your local senior service center and hospice would be great places to start.
My biggest concern for your dad in reading your post are your stairs. I grew up in a split and there was no way to get in and out of the house without doing 1/2 a flight. Is there a possibility of a chair lift?
I will send prayers that the transition will go smoothly for all of you.
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