MIL lives with us. She just celebrated 100th BD. overall healthy but behaves like a two years old.
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My dad has a bell, sparkly fringes on the ends of the grip bars, a small LED light and a license plate on the front. Heās quite proud. Also has a cupholder.
I ordered the pronged gripper before my knee replacement. Darned convenient!
Thrift stores (at least around here) are overflowing with walkers, portable toilet seats, raised seats, canes, etc.
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Your MIL is 100 and has lived with you how long?
So this is something Iāve felt percolating in the back of my mind: Say he confounds all the expectations, as several parents on this thread have done, and lives for years.
Are we chained to the house now? I mean, there is nobody I would trust to come here even for an evening and take care of him, though I guess one has to trust the home health care industry at some point, right? Thereās no other family around, is what I mean.
We have my S23 in the midst of college applications and a trip to CWRU in October and figured we would be going to other colleges next spring break, as he decides where he will choose.
We have a weeklong fall foliage trip, paid for a year ago, at the end of October.
And hubby turns 65 next year and we were planning a big 10-member family reunion in Ireland.
I donāt feel like we can do these things anymore.
How complicated is this respite care Iāve read a few sentences on?
Outside care and/or respite is not going to be perfect. In my experience, donāt let perfect be the enemy of good. Do your due diligence on reputable agencies in your area (again the department of aging should be able to help).
Iād also encourage setting up Arlo or similar cameras in your home. You can make certain rooms off limits (use locks and cameras), donāt keep valuables out, etc. modern technology makes that piece easier. And you will disclose to agencies that cameras are in use but ensure they arenāt in bathrooms and where the caregiver may be sleeping.
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Respite care can be home care or at a nursing facility.
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If your dad could barely walk a block in July, it sounds like heās really frail, and the move (flying) will be really taxing on him. That may be why his partner is pushing you to move him asap. I also think heās going to need more care than you realize. Are you working?
You may want to consider a home health aid. Live in probably sounds like too much, but you might want to think about it. Especially if you are working. That way you will know who is caring for him, and will allow you to travel. Otherwise, yes, you are stuck at home. You may get to the point where he cannot be left alone at all, and then you are really stuck! No appointments for you, or shopping, etc (let alone anything fun!) unless you have coverage.
Iāve found a good support resource is FB groups like "Caregivers of Elderly Parents ". The rawness is startling, and a little off-putting, but now that Iām immersed in caregiving, I get it.
I would also get him enrolled in hospice asap. My dad is in hospice due to dementia. He started 18 month ago. Is a residential program an option for you?
I am afraid the caregiving is going to be much, much more than you are imagining. I certainly hope I am wrong!
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I agree with @cinnamon1212 who articulated concerns better than I did. I have also implied that he may be more āterminalā than expected.
I would find out if he can still take Keytruda on hospice. This is actually an insurance question. Hospice Medicare starts with admission to hospice, but regular Medicare still pays for things not related to the hospice diagnosis. Assuming his hospice diagnosis would be the sarcoma, that would mean that insurance would not pay for Keytruda.
Have you considered assisted living? From what others tell me, that can be more affordable than home care. And gives the person more independence and family has more freedom.
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I just got notice of massive renovations in my motherās facility. We have had two price increases and I asked the director if those are related to the renovations. The place looks great. I donāt understand.
I am sensitive to just about everything mentioned: new carpets, paint, furniture. By sensitive I mean I have gotten lobar pneumonia twice from exposures to things like this. I am concerned I wonāt be able to visit.
I just got a small apartment but it does not have a lease. I am considering, again, getting a two bedroom with my mother. I am tired of going to the facility, but am aware of what taking that on would mean.
I wonder if anyone would rent to me and a 95 year old? We would not be able to put bars in or make it wheelchair accessible. My mother has money: I suppose we could buy. But she could take to her bed again and not last long.
Maybe I should buy a respirator!
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If you get a toilet helper seat,the kind that rests on top of the toilet, consider one that attaches to the toilet. My mother could not stop thinking she could use the bars on the unattached one to hold onto, she had some bad falls with that. Our hospice only offered the one kind, I had to research and find and buy the one that screwed onto the toilet myself.
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Moving your parent in with you is incredibly limiting, even before they are frail, if they are at a stage where they prefer not to be alone or are unable to be alone. I had to really push hard to get siblings to step up, but I forced the issue and made it happen when critical, though that was hard on me. Do you have any family who can provide you respite?
Hospice is different in every area, we have a Hospice House at something like $350/night for respite care and I believe you get 5 nights free a few times a year. You could check into that as an option for your Ireland trip.
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Our Momās PT recommended against the toilet stand that screws into toilet seat and recommended a heavy stand-alone stand that we purchased and mom uses well with no problems. In fact we just got a 2nd one online for the 2nd bathroom at momās place.
This is similar to the stands my mom safely uses, as recommended by her PT and aides. My brother bought one of the screw onto toilet seat stands and sheās successful with that as well.
@HImom that could be great,too. Mainly, if the person is unsteady and a fall risk, be prepared that they may see that toilet helper as a grab bar and it itās light weight, could have some ugly falls in a place with lots of hard surfaces.
Hospice here includes an aide 5 days a week, nurse at least twice a week, social worker, chaplain and volunteer- all provided at home. They do have inpatient hospice at a gorgeous facility and that is used when pain relief or other measures are needed, and also for familyās respite. Both insurance and private paid.
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Wow, @Compmom, your hospice sounds great. The more I read about other peopleās experiences with Hospice elsewhere, the more I hope I donāt need Hospice in my area. They were unimpressive.
@somemom my mother has been on hospice three times! I did their volunteer training and they said fairly often people come off due to the care provided. My mother rose from her bed after 3 months in bed, and has been downstairs in her facility 5 out of the last 6 days. Looks like she is coming off again! They reevaluate every three months and as long as the person is declining (losing weight for instance) they stay on.
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I put padding on the ends of the stand so no one will stub their toes on the stand. I really donāt want anyone to hurt themselves.
My MIL keeps getting UTIs. The infections are caused by eColi, and the NP says that itās due to improper wiping. I was wondering if a bidet seat with self cleaning nozzles might help. Does anyone have any experience with this?
Lots of questions and I donāt have many answers.
We both WFH and that will continue; we have the ability to tag-team on care, and also the ability to give each other breaks. No family at all nearby.
It looks like care options around here are limited and pretty crappy. I will find out more tomorrow. Thereās one spiffy AL facility - $4k p/mo and up - and a whole bunch of questionable places I wouldnāt put a potted plant in.
One hospice facility, and I bet itās got a waiting list.
Iāll find out more tomorrow. Many many phone calls ahead of me then.
At some point weāll talk with dad about boundaries and when itās too much for us. And then heāll have to pony up. He theoretically has tons of money; the reason heās been so amenable up to this point is that heās a really cheap & miserly guy and this is more free rent for him (continuation of his arrangement with his partner). He will fight like he** not to pay $4k a month, I am 100% sure of that.
91 YO MIL would get a UTI about every 2 or 3 months which required a few days hospitalization for her to get well enough to come home (IVs, stabilization with her relative to all her medical conditions - heart, diabetes, gout, etc.). MIL had to wear a diaper instead of a heavy pad from her late 80ās, and a lot of incontinence over the final few years - and wetting through at night onto bed pad unless taken to the bathroom and changing of diaper every 4 hours.
If your MIL does not have a continence issue - she may need to wait a few seconds - and then maybe use some kind of a wet wipe but just gently pat once.
Those skin tissues with aging become more flabby - and she may have more frequent potty breaks just due to aging. Besides e-Coli, yeast can be an issue with UTIs.
I am turning 66, but due to having had early episodes (younger years - in my mid-40ās) where I would empty my bladder before jogging, but still had to wear a small pad due to leaking urine (only time I needed to wear a pad - but a sign that things would not get better with aging) ā so when I met all my insurance deductibles early in 2011 (I had aggressive stage III breast cancer in 2009 ā at age 54, so the last of my IV medication went into 2011, and I knew I was cancer free since mid-2010) - I had the bladder testing done (needed to fail on one of 2 measurements and I failed on both) in GYNās office - and he did an excellent bladder sling technique with insurance approval. I had to write down the actual procedure he used āTransobturator Midurethral Slingā. GYN later did my Laproscopic Assisted Vaginal Hysterectomy Bilateral Salpino-Oopherectomy in 2013 (prolapsing uterus, and something showed up on my not good functioning right ovary ā which turned out to be a calcium deposit) ā so glad to get any potential new source cancer monkey off my back (no real good data on relationship between breast and other female organ cancer - but ready to get those out! My cancer did include a hormonal element ā estrogen positive).
I personally have had 2 UTIs in the last 2 years, and before that it had been a very long time. Can be very careful and still happens.
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My 91 year old father was getting constant UTIs (requiring ER visit or hospitalization). He does require a catheter due to an enlarged prostrate (and will for the rest of his life). He was on and off antibiotics for quite some time.
Last time, the Assisted Living place thought he was going into septic shock and rushed him to a different closer hospital. There they put him on a 14 day course of strong IV antibiotics that really worked. I feel like the antibiotics before then were not strong enough to clear it up completely and that is why he was getting one UTI after another. He also had several bronchitis and pneumonias type infections, which again probably never fully cleared until this strong course. Yes, it was a long hospital stay, but was worth it in the long run.
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