Some good news, to balance out the difficult time some posters are having:
I’m visiting my 91-year-old mom at her continuing care facility. She’s doing well! She has moderate dementia, but so far is able to stay in her apartment, with my two nearby sisters keeping an eye on her. She’s now moderately demented: forgetful but pretty coherent. I went to her place’s Sunday brunch, which was filled with elders who seemed spry and healthy, considering their average age had to be well north of 80.
One scary thing is that although my sister is handling many of her financial affairs, Mom is still, evidently, managing some of her money and is manifestly incapable of doing so. We listened to her phone messages, because she can’t remember how to do it herself.
There were two messages from her broker, asking if she wanted to exercise some option offered to Dow Hemical shareholders. Come on! She can no longer handle something as simple as buying something with a credit card in a store. There is no way she can make that kind of financial decision. Hopefully the broker is just doing nothing, which makes sense.
I’ve seen older folks with their arms in a combination of plastic bracing and bubble wrap. And yes, like a 2 year old “don’t touch!!!” and with the requisite “and you’ll get a cookie!” or whatever floats her boat (if possible, worked for my friend with non-Alzheimer’s dementia).
That’s the thing - it’s amazing that they’ll treat a person with dementia like a fully-functioning, following directions adult, yet they know darn straight that a 2 year old could not be expected to not take their arm out of a sling !
On that note - this may sound wild, but any chance of talking to a pediatric orthopedic about options for her arm? As far as I know, they will cast pretty much any break in a toddler’s arm, so why would they not consider that for what amounts to an intellectually impaired adult?
For example - my nephew is autistic, potty trained and can take care of feeding and clothing himself, but almost no other self-care. He is 20 years old and if he broke his arm, darn straight they’d have to cast him. They might even need to drug him to get him to calm down enough to put a cast on him. And when he needed dental work, he needed general anesthesia in the hospital. Yes, most people would not, but he did.
There is no way for my brother and SIL to get him to comply with anything beyond a momentary “No!”. His medical and dental care have to take that into account, and of course that does mean permanent/semi-permanent instead of temporary in many cases.
Watch out for the UTIs, though. A month or so I got a call from my sisters, saying that mom had gone completely crazy and was hallucinating some story about her neighbor being murdered and then doing lawn maintenance and construction in the middle of the night. She was utterly untethered to reality and having visual hallucinations. They rushed her to the hospital, fearing a stroke. But it just turned out to be a UTI.
Next morning at the hospital, she was not fully recovered, and asked my sister, in a cheerful voice, why the hospital had put her in a room that was still under construction. “See,” she said, pointing to a smooth painted wall, “why is there drywall and a hole over there?” Happily she’s fine now.
It is helpful to read about others and how and what helps in situations. I am appreciative of your sharing!
We have found ourselves 2000 miles away west from my mother (93-AL) and 1000 miles away north from FIL (94- NH). Both refused to leave their house until they had to be hospitalized urgently. One year now for mother and 2 months now for FIL., both would be extremely hard to move near us. No sibs for H. One brother for me. He helps but is 500 miles away. We are doing the best we can. FIL we got a really good set up with a phone from ATT that a friend set up for us one week ago and worked well in his NH room. We called today- had to talk with the nurse as he put it in the drawer because someone might take it. So, yes it is not working. Sigh…point being the best of intentions don’t always work.
My friend’s mother, ostensibly not with dementia, called up her retirement fund company and asked to take her husband, the joint owner, off the account, because he has dementia. Of course they locked the account, and said they need proof that he does or does not have dementia before they do anything. She doesn’t have proof either way, so suddenly she lost access to most of her retirement money.
And then the woman kept giving away her login and password to various people, including a financial planner who moved her stuff around and took out “fees” without telling the account holder what they were.
In a way I’m glad my father is very much not Internet savvy (near 90), so he couldn’t give that kind of information away to anyone who would want access.
Best to all. This is often a matter of the doing the best you can with the hand you are dealt. It isn’t always neat and it is important that we all take care of ourselves and the families we created in the process.
Leaving today for an anniversary trip. I am the only family member on the same coast as my 91 year old father with dementia. Just got a call that his must vulnerable physical condition is kicking up (high risk of major infection, well managed by the nursing staff and fine on Friday). No fever, but put on antibiotics. Clued in sibling 3000 miles away (never involved) and leaving for Europe with fingers crossed. Self care…
My question about alternatives to support hose was really about the elders who fuss. I hated using them (CVS, no longer use them, just had them on occasion and for plane travel) and can imagine an elder is even more sensitive and less understanding of the need.
My mother is also re-starting lymphodema treatment and last cycle they did “wrap” her legs, which I assumes was something like an ace bandage. I think they’re recommending the zip style now. But for her, the foot part will be so bulky, she then needs some sort of ortho boot. I don’t know. The expression in my family has always been, “It’s tough to get old.”
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So, yes it is not working. Sigh…point being the best of intentions don’t always work.
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Sighing along with you, rocky. One of the many sources of difficulty with my dad was that I tried to make everything come out right 100% of the time. Mom has been really stable since Dad’s death two years ago, but we’re now in a rough patch. I can’t tell if this is just a detour, or if we’re starting a new phase. For now I’m having to be more involved than I have been but I’m trying to be more considered in my actions, instead of immediately going to Defcon 1 with EVERYTHING. Looking back, I can see that many of the things I got so stressed out about really made no difference in Dad’s quality or quantity of life. I’m trying now to put that filter on my interactions with Mom – is this something that is ultimately going to make a difference? It’s hard because my mind automatically goes into fixer mode.
Family members that aren’t involved with the elder’s day to day life, really don’t know what is helpful and what creates more problems. For a couple of years, my SIL has wanted to get my parents an ipad so they can Facebook and Facetime. I’ve been discouraging this, as has my brother (died last November), but while I was out of the country she came to visit and gave mom and ipad for her birthday (said she wanted a way for mom to be involved in “showers” as her son is getting married next summer). Of course, now I am expected to help her with her passcode and navigate to Facebook to show her the stuff folks have posted (SIL set up the Facebook account and invited friends). Mom and dad have trouble remembering the grandchildren much less cousins, nieces and nephews and have no interest. Plus, they have trouble taking in and identifying what is going on in the picture. Therefore, it’s a chore as opposed to something to do with the folks. Plus mom has never had interest in wedding preparations and showers, even when I got married.
Just one other expectation family, who have best intentions, have put on me, the primary caregiver, by not taking my advice. Many other members of the family (my kids for example) could use an ipad but can’t afford it. I’ll never be forgiven if I pass it on.
Don’t even begin the project of instruction. Play dumb and if the SIL asks about it, very innocently ask “when is the tech support technician that you hired due to show up”? She’ll get the message real fast. I wouldn’t even engage in a converstion about it. It is exhausting enough to have to deal with our parents needs and worse when other family members on the periphery have expectations as well.
How have you people gotten hospice care to kick in without a 6 months diagnosis? My mom, who is in assisted living, could really benefit from hospice care. She was evaluated last week and deemed not ready since she can still say yes and no (although sometimes yes means no and no means yes) and “I’m fine” and she still knows us. We are getting to the edge of what assisted living can provide, but don’t want to move her to a nursing home until we absolutely have to. We’ve been through the round of specialists but she is incontinent, in pain with her back, and mostly unable to verbally communicate. She’s also just becoming completely wheelchair dependent. We could really use hospice to help us know what to do to keep her more comfortable and what to do during small emergencies rather than send her to the ER.
preironic, it sounds like your mom doesn’t need hospice care. She needs palliative care- that’s the branch of medicine that deals with making someone’s life as good as possible when no cure is possible. You might want to see if she could see a palliative care specialist.
I was also going to say what ECMom and Bookreader did: you do not have to do it.
Getting hospice care can depend on your area, but it’s generally about that last 6 months. But very good that you are open to it, preironic, for when the time comes. Some hospices services offer palliative also.
She’s in a small town and there doesn’t seem to be a specialist. We seem to have taken on that role ourselves and it 's getting very difficult. The only option I can see is to move her to a new GP who advertises that he offers palliative care, but that involves a change in primary and a wait of several months. Getting her there would be extremely difficult also. I’m so worn out after 3 years of coordinating her care during advancing dementia and would just like someone to help! Her current GP was open to referring her for hospice, but coordinating palliative care doesn’t seem to be something she does. Mom’s care just seems to be so fragmented, no matter how we try.
@preironic . hospice care did the 6 mo diagnostic and her Dr. signed off on it, but no one believes that she only has six months. My mom sounds lots stronger and more able than your mom. You can ask hospice to come and evaluate. They understood perfectly that I was trying to avoid the hospital trips … then Mom fell and broke her arm.
There seem to be (somewhat) sever consequences at the AL place though. So I’d be sure to ask your AL place if they work with hospice and what effect does it have. In my case, they bumped Mom back to Level 2 care (she should have been on level 5) and washed their hands of Mom’s care except for dispensing the pills on time (more or less).
Hospice has been involved 6 weeks or so and it is really a rocky start. I just say as a caution, your state/hospice/AL place might be different.
I still think it was a good call to stop the hospitalizations when Mom went kind of catatonic, yet bounced back . More hospital tests were not going to help; and she does not want to live like this. She’d made that clear to her physician earlier.
@GT, drop the rope (or the iPad) if asked are they using it, just answer "They are not able. Come set it up yourself and see. "