@heidekraut - believe me - I get it.
No advice - but look at some of the wise comments I received on the thread about where to retire.
@heidekraut No flaming from me. But it is clear they are not in a good situation. I don’t think you should be the one caring for them. But are there administrative things you can do. Such as finding resources so they can walk away from the house? For example, were either one vets and they can take advantage of veteran benefits given for long term care? Would they let you help with such? If not, really nothing to be done until they are so bad and you report them to social services. Myself, as I age, I want to move closer to the city, not away from it.
@heidekraut, have you checked into the senior services available in the state where your parents are? If you call them and tell them that you live far away and are unable to monitor and care for your parents, but that you are concerned, they might send a social worker to check things out. Not that your parents would want that, but it would get them on the radar of people that could help when things get worse.
You don’t have to be their lifeline and their savior, any more than you have to save the rest of the people on the planet. They did not do their job as parents. But it may help your peace of mind to know that state social workers are there
and @SouthFloridaMom9 , I see you knew my FIL. For years, he would complain about the “old folks” at family gatherings that would talk about their medical procedures. But there was little we didn’t learn about the infection following his knee replacement or, heaven help us, his prostate.
A 1-Hour Walk, 3 Times a Week, Has Benefits for Dementia
https://www.nytimes.com/2017/05/24/well/move/a-1-hour-walk-3-times-a-week-has-benefits-for-dementia.html
@oldmom4896, thanks for sharing this article. It made me think of my former MIL, who has Alzheimer’s disease (not vascular dementia, the subject of the study). I think exercise would have benefitted her, but she refused to leave the house early in the disease and now cannot move on her own.
@rosered55, there’s this too:
Frequent, Brisk Walks May Aid Those With Early Alzheimer’s
https://www.nytimes.com/2017/03/01/well/move/frequent-brisk-walks-may-aid-those-with-early-alzheimers.html
I read that article earlier @oldmom4896 and the headline bothers me because when you read the article, it’s not necessarily the case. The recruited volunteers had been diagnosed with Alzheimer’s, which doesn’t mean they had it. They admitted that only a few walkers gained endurance and those that did, bulked up their brains and gained memory. I suspect those few didn’t really have Alzheimer’s since we don’t have good diagnostic testing. Perhaps they had vascular dementia?
I think I’m grumpy now because I am watching my very active demented parents slide particularly far in the last few weeks. Perhaps exercise helped delay some of the symptoms. But I suspect, there is nothing they could have done and have been far more active than the majority of their non-demented counterparts.
My dad’s aphasia is kind of fun though. He often can’t remember the words to things so he comes up with clever descriptions. Guess what “tape squeeze” is? Glue!
lol @gtalum. I hear you! Once my dad wanted to tell me to buy toilet paper and after trying to find the words for a while, he blurted out, “you know, asswipes!”
But @gtalum I feel for you. Alas, it’s a one-way street they are on. Indeed, all of us, but the hill gets much steeper.
I just need to vent a little. I’m getting pretty nervous. Mom is in rehab (after an illness and hospital stay) and although getting stronger, still can’t transfer, dress herself, or do her bathroom routine. It’s been one month. She can now walk 50-100 ft with one person assist. She lived with us before this but has always been completely independent. We both need to work which leaves her alone for long periods. I’m concerned they will soon release her if she stops making progress and I’ll have to stay home to care of her. Have others been through this situation?
So sorry @psychmomma. My MIL was living with my sister-in-law (SIL) for a little bit before she went to SNF but it went downhill fast. She would stay up all night needing help for the bathroom and my SIL works 12+ hr days many weeks. It was crazy hard.
I’d start visiting SNFs/homes now. Caring for someone in this way is more than a full-time job. Who will prepare food, take her to the doctor, help her through the night? Something will give at some point.
Hopefully she will keep making progress and will be able to get around to a certain extent. This would be a good thing even if she does go to a care situation.
I think you have to balance out all the needs, including your own (which are real and legitimate).
@psychmomma so sorry. It seems to be that you should make plans for skilled nursing or someone to be in your home to provide care. Even if you did quit your job to care for your mom, I think you would need help in the home.
Rehab likely has an aftercare person assigned to your mother. Confer pro-actively with them. You are wise to translate what you are seeing in rehab to her needs upon discharge. Challenges like hers can take returning home off the table, as even hiring help will not eliminate potential obstacles and hazards of the layout of a home. Also, it is very easy to find managing many hours of in-home care a part-time job.
Does your mother have a medi-gap plan that covers skilled nursing up to about 100 days? Progress must indeed be documented, but in my experience there is usually “patience” for slow progress. Agree with others that looking into skilled nursing makes sense. Even if she improves over time, it is important to consider the possibility that challenges will continue to accumulate and re-bounding from them become even more difficult. It is easy to bring her back home if she recovers completely; not so easy to find a quality alternative in a discharge crisis.
Sorry for your situation. It is poignant when needs increase. For my parents, the best option proved a comprehensive care community with medicalized assisted living, as well skilled nursing and memory care. Over 12 years, all aspects of care were used, with no need to move from the complex.
I agree you should start talking with the discharge social worker and/or nurse about options for when mom is discharged from the facility where she is currently. They likely have listings and other resources where patients go when they are no longer able to be independent.
Of course, finances will have to be a part of the decision as well. If your mom may need financial assistance to pay for the care she needs, you especially need to be sure to keep your job, as your income may be needed to help with increased costs.
I agree that caring for a dependent elder may require several full time folks–particularly someone to help at night so that the other caregiver can sleep.
You may have a local seniors agency that is government sponsored info source. Rehab should be able to give you leads on type of facilities that have openings appropriate for your mom’s needs @psychmomma. If nothing else, take some leave time as necessary to line up workers (through a recommended agency) taking care of her at your home, and perhaps meals on wheels for lunch M - F. Cost factors will narrow options.
Thank you for your concern and suggestions. She will have to live with me because she only has one or two years of funds for SNF, if I can ever get her hoarder house cleared out and sold (and not worth much as its condition is poor). I don’t want to put her in now if she’ll be kicked out in two years (until Medicaid 5 year look back is satisfied). It’s terrible that you can’t control how your folks spend their money when they are still “independent” (not bad enough mentally to have a guardian), yet the burden for their care falls on you later.
Just whining, don’t mind me.
[background]
I’ve vented here plenty of times about my Mom in AL. And maybe a bit about my friend that just went into Memory care last Sunday (with no contact allowed for 3 weeks). I miss her, but it WAS time; she was lucky her niece took care with her as long as she could. I was the backup go-to person so am doubly grateful to niece.
But last weekend I flew to be with my Dad who had to go to the hospital unexpectedly with VTac. He’d been passing out from it, but they had not figured out what it was. It was my niece’s graduation … Dad lives with my brother. The meds seemed to stabilize Dad and I took him home to brother’s the next day. Then I left to go take care of DH who was having a procedure in LA. (all is fine there).
My dad is great, still very with it, kind, smart… pretty blind from macular degeneration and with enlarged prostate that was seeded years ago (so he has to pee frequently). Other than that he is able to get around, listens to books on tape, fed the dogs when brother’s family was gone for weekends. Pretty healthy.
[end background]
After this hospital spell, he caught a cold. Plus the heart meds make him feel very weak. He doesn’t want to be a burden, doesn’t want to need to sit around in diapers, etc etc. Doesn’t want to fall and have grand daughter still at home (16) come pick him up off the floor or find him dead. I understand all this. I do no let my pets suffer a long time. My dad just told me he plans to die very soon. I tried to tell him to wait until the solar eclipse when I come visit again. He got “the weeps” and I believe was trying to say a good bye. I told him he didn’t have to get a pacemaker, but to try the pills for a month. (I think the pills are making him weak, although it could be the cold, it is a side effect). I don’t know if I should warn brother to hide his pills so he cannot take a massive dose or just let it be. I have a different relationship with Dad than he and my brother do. Brother is religious, too and has told his daughter that grandad will go to hell because he doesn’t believe in Jesus… So I don’t think Dad will be telling Brother any plans. I am not sure I should share either.
I’ve had too many relatives stuck in diapers with no real life to wish that on anyone. I hope he gets better or gets worse fast is all I can say.
@esobay I do agree not to get a pacemaker if he has other system ‘failures’ that are declining his QOL. However he can get better from the cold and feel better.
Usually when people have reflective time as they near death they revert from Atheism/Agnostic views.
In this day and time, he should not be ‘suffering’ - his anxiety of what could happen may push him into ‘taking matters into his own hands’.
A review of his meds may be in order, along with what OTC things that could help strengthen him/improve how he feels.
psychomama,
My dad didn’t understand correctly the LTC benefits for my mom so never used them. What a waste. And we only used a bit of his, maybe a year. Left a lot on the table. You never know how long your mom will live. Use the benefits
Cd- so sorry you are in that position. Remember though, you have to face the living as well as the dying.