@rhandco- Appreciate what @SOSConcern adds to thinking about your dilemmas. Also, has your father had a recent neurological or neuro-psych exam? My mother, who did not have a dementia diagnosis, but did have a huge cognitive decline with UTIs, as well as medication interactions and side effects, took longer and longer to re-bound from that confusion as she aged and other health issues progressed. While the acute phase of hallucinations has passed, he may still be a long distance from his prior baseline.
Either way, your questions about the way forward are timely. Caring for a bedridden elder, where further decline and medical judgement calls are likely to be necessary, is beyond many. Purpose-built facilities with professional expertise are often the safest way to connect the dots, while offering the elder the best quality of life and perhaps even social opportunities. Additionally, sometimes the chance to be a supportive family member, while the pros navigate daily life challenges can interrupt the in-house struggles. It is hard for some to feel that their kids are driving the bus. Perhaps most significantly, if it is time for a change, it is important that whatever comes next works for all the players. I think that is a gift to the elder.
Sometimes doctors, social workers, therapists, etc have to be the ones to give the options and limitations. That puts it to ‘doing what the doctor ordered’ versus a power struggle that will erode a parent/child relationship.
Psychiatrist and Neurologists that are board certified are trained to cover both areas - their board certification is cris/cross but a true neurological problem get treated by a board certified neurologist, and psych - esp with someone working with elderly - or gerontologist or MD/practice that covers assisted living/skilled care facilities.
But also, sometimes it’s important to recognize there is no perfect cure, we wish they could be as they were, but they’re at a different point. And this is so hard for us to face.
@rhandco, I’m so sorry your family is facing this. After a hospital stay, MIL refused to attend PT & OT (or would sneak out if they managed to get her there) and thus was unable to return to assisted living. Did the same thing with PT & OT at the skilled nursing wing, so she’s still there a year later (a great and likely unnecessary expense had she understood/accepted the need for therapy).
At some point, assuming we have pursued every appropriate medical and psychological treatment on behalf of our loved one, there is only so much adult children can do. MIL receives excellent care, and H and I visit several times a week. She shows no interest in anything beyond the small sweet treat we bring. For some time, we thought “if we only could find the right antidepressant” or “if we could just get her to go to some of the many scheduled activities”. It’s been six years of struggle to take care of her and her husband (diagnosed with vascular dementia), and all three of their kids have seen marriages and finances suffer (SIL has actually divorced). Be sure you put on your own oxygen mask, set boundaries, and protect your relationship with your spouse and kids. Aging parent care can be all-consuming, and that’s not sustainable.
@rhandco, you are describing my father in law about 3 years ago. It was clear that despite lucidity, he had no interest in getting out of bed or any other physical rehabilitation. In rehab, when they got him out of bed, he would fall by trying to get back in bed. He was told this would mean he could not go back to assisted living, a place he loved and wanted to get back to. We feel he made his own choice by passively refusing and stopped bugging him about it. Shortly after this, he stopped wanting to eat and instead of nagging, we called hospice for end of life care and it was a “good” and peaceful death. It was easier all around if we didn’t have a problem with him wasting away in bed.
What temperature do your parents or in-laws keep their homes at? My former father-in-law sets the thermostat at 80 and even with that, regularly claims that the furnace has stopped working.
At least 85. My FIL had the thermostat fixed at their old condo because the temp wouldn’t go up high enough for them. We call it old people’s temperature.
Just home from visiting my parents. Dad wears long sleeved knit shirts while sitting on patio in sunshine when temp is over 78. He’s always been a high metabolism person, so now that he’s less active, he’s cold.
Dad (at 87yr old) continued to feel hot and kept the house at about 68 degrees. My mother (at 94yr old when in assisted living) had it so hot in her room that I had to go out for air frequently. I am guessing it was around 85 degrees or higher.
I’ve said before, my gm and her sister joked 90, in AZ, was sweater weather. Body temp regulation often goes off, with age. And my gm would complain the cold led to “brain freeze.”
First, thanks for all the kind thoughts and ideas and commiseration. It seems much more common than we thought.
Second, the recent topic of temperature - I keep our house at 74, and turn it up to 76 on occasion. Heck, yeah I’d turn it up to 80 if I didn’t think the bills would be a huge problem. I have very very cold feet, no diagnosis, but they feel really cold most of the time. So I would say perhaps our elderly relatives are feeling cold and are responding to it, but to get them to wear socks / sweaters / heavier clothes inside may not be something they want to do.
My answer is that I will be moving South when my kids get out of school LOL… Maybe that’s why so many elderly people move to Florida or Arizona…
Lastly - we are trying to get the doctors on board, and he did see a psychiatrist and get some Atavan.
Finally - I just found out yesterday that HE thinks it is FREE!!! It is now around 160 per day because the Medicare 20 days past, and we are getting closer and closer to 100 days. After that, they don’t pay.
I am looking at the VA more seriously for him, maybe they could motivate him.
So challenging, @rhandco. Does he have a medigap insurance policy to help cover days 20-100 in skilled nursing rehab? That was a big help to my parents over years. They acquired such a policy once they saw the alternative costs.
Also, when considering his next steps, with motivation and health both in play, considering places that will work without counting on much of a re-bound may make sense. If being surprised that services have a cost associated with them is new for him, that is good data about current cognition.
Much empathy; its hard to navigate moving targets. We have all been there in some way or other.
My sister just said something to me today that left me speechless about how H and I wish my parents weren’t still alive??!?!? Where the heck she gets that idea I have no idea and I was furious and offended and she claims she heard us say this, even though neither of us have ever thought OR said such things. I just sent her a text telling her that H and I are deeply offended by her character assassination of us. We spend a lot of time and energy with my folks and are happy to do so, even though we do wish our sibs would step up and do more as well. She loves painting herself as a martyr, which is fine, but not OK with us to paint us as villans!
H and I are speechlessly offended. I suspect it’s because we don’t agree with her and my older brother that ALL possible measures should be taken to keep the folks “alive.” Both H and I have said we do NOT want to be kept “alive” if we are just trapped in a body that hasn’t died for OURSELVES. We also don’t want CPR if we have been unconscious for a period of time and also do NOT want to be kept alive on machines if we are paralyzed.
My folks and my older sis and older brother have said EVERYTHING possible needs to be done, no matter what and were upset that my cousins “let my aunt die,” when she couldn’t move or swallow and they were following her advanced directives. They said she was pleading “with her eyes.” Now, they are spreading this trash and I suspect they’ve told tons of people! H and I are livid!
Sorry for all the complicated situations going on.
I have a new (to me) issue. My mom has started trying to flush pads down the toilet. One day the bowl was filled with what looked like mini gelatin balls in a thick gelatin like goo. (I’m assuming the absorbent beads in the pads filled and wouldn’t go down with flushing.) When I ask her about it she doesn’t even know or remember what she’s done. Up until now she’s been able to handle her own cleaning and toileting, which includes changing depends and pads. Any ideas on how to handle this?
Wow, @Psychmomma! Does your mom live alone? If she lives alone, she may need someone to accompany her to the toilet to avoid having her clog the toilet. So sorry!
My friend’s grandmother started ripping off her depends and pads and would drench the bed, exhausting my friend. She would have to stay vigilant and pop up whenever she heard grandma stirring to avoid this. For two days a week she hired respite help so she could count on at least two nights of sleep every week.