Parents caring for the parent support thread (Part 1)

Parent Cafe
8561

BIL’s father is in hospice and won’t last more than a month or two. He has stage 4 renal failure, is blind and diabetic. Luckily he was deemed competent (and he is) enough to state his wishes for end of life care. BIL’s mom and sister are, expectedly, having trouble letting go and on some level, they think he may get better. BIL lives 2000 miles away and his mother is near me. He came for a week to help get things set for the end (funeral, burial, finances) and help them understand that they need to just do what Dad wants. I get that this is so hard for them.

The food/eating has been a huge issue, but his mom and sister are doing better just letting the dad eat when or if he wants and not forcing him to take “just another bite”. I had to tell them that it’s okay to send the whole tray back. On the lighter side, he is SO happy to be able to eat anything he wants after following the diabetic diet for over 50 years!

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And, as people’s body’s fail, sometimes eating can cause digestive issues, if the system is shutting down, it may not be working well. My Daddy pretty much just had chocolate malts his last few days and more power to him :wink:

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Really, as people age and have increasing health problems, enjoying the things that bring joy seems to be a very sane and sensible strategy!

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Just joining this club. My Dad is only 79 but his wife (of 30 years) left him a year ago and he has taken a dramatic downward spiral over the last year. He has made a lot of bad decisions including selling his Mercedes for $500. He decided to sell his house and the plan was for him to move in with us so we could get an idea of where he was mentally and physically. Before escrow closed we found him lying on the floor not making any sense. He was hospitalized and then sent to a geriatric psych hospital and put on a 14 hold. We thought a lot of issues were due to alcohol abuse, but it ends up he has pretty severe dementia. The doctors feel he needs 24 hour care so we moved him into a “memory care” unit in an assisted living facility. It is a very nice place, but he actually preferred the activity of the psych facility.
He is very impaired but has no idea and is not willing to sign over a power of attorney. There is a clause in his trust that says if we can get letters from two separate physicians that he isn’t capable we can take over his trust. We have been working with his attorney, but I think i probably have to get an elder care attorney to get guardianship.

Any advice is welcome.

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Just my sympathy. Truly a club no one wants to join.

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My first question is, Does Dad now have any access to the funds? If so, that would make this change a priority! If the doctors have put him into memory care that would seem to be a reasonable diagnosis of his inability to care for himself, can you not get a letter from two doctors on staff there? I would think they would be accustomed to this?

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I’m new to this club. My 79 year old mother has been sedentary and dependent on dad for years due to diabetic retinopathy – she’s legally blind – and issues related to a severe hip break that make her unstable. Dad, 81, has been fairly able although his memory has been going for awhile. It was a pretty good balance. She remembered things and he did them.

We lived with them until three years ago, sharing a 3,000 sq ft Victorian, until we had to move 2 1/2 hours away for work reasons. We have no family in their town.

In the last six months dad has landed in the ER twice, once for thyroid problems and once for low blood pressure (because he was being overmedicated, they said.) I know that he wasn’t taking his meds properly, so we kinda bullied him into having a health nurse come in and pour them for him. He can no longer lift his arms very far, and shuffles all the time, sometimes tripping. His memory has been slipping month by month, and he was diagnosed with dementia earlier this summer. Nearly everyone in his family had it, and his only sibling just passed in an Altzheimers ward at the beginning of the year.

Mom is so fragile she can’t walk far at all. My D’s graduation last year was really traumatic for her. She hates leaving the house – which requires steps no matter which exit is taken – but she confessed she has started going with Dad when he runs errands because she is concerned he will forget where he is going or what he needs to do. Regarding driving, Dad was a professional truck driver, and I don’t know how we’d ever get the car keys from him. They are both adamant that they will not leave their home, which is way too big for them. (Mom is convinced that when DH and I retire we will return to the house. NOT!)

I’ve initiated discussions with Mom about revamping the first floor and closing off the second floor. She’s tentative ok with it, but I know Dad won’t be at all. Mom has huge issues with depending on anyone, and Dad fits every cliche you’ve ever heard about an elderly person who doesn’t recognize their own limitations.

We’re trying to get back home more often, but mostly failing. I think we’re heading down next weekend, and I’m going to initiate the 1st floor conversation with Dad. Not looking forward to it.

As an aside, he has apparently started eating ice cream for dinner, exactly as his own father did during his final years!

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Wow- NerdMom, they seem young to be beset with all that.
I am sorry you are dealing with this, you are in that mysterious time period when they are not truly competent, yet not legally incompetent.
We spent a couple of years fighting FIL and I have to say, my DH was right, it was worse than we thought, despite frequent visits. It did take a broken hip for one of them to give us the power to make the changes & it was miserable and ugly, but it got done. That being said, they have both lived too long. They waited too long to move to AL, the healthier one did not have enough mental or physical energy to make friends and be up to creating a new life. The weaker parent was broken hip, rehab, SNF, B&C, hospice, died, all in 6 months and truly it was a blessing with major phyisical and mental impairments & the only desire was to be back home again. The stronger parent did IL, AL, B&C, hospice, but does not seem to be failing, can no longer walk, but we won’t be surprised if hospice is not renewed.

In each case they would have been happier at home, however, we fought and fought and tried to make changes, as soon as we left the changes were undone. Literally a few weeks before the broken hip, we kids warned that if changes in the caregiver schedule were not made, someone would break a hip. So, you can fight them, but it’s difficult.

Would an in home caregiver work? In the in laws city, you can find a B&C for $2000-$5000 per person, AL was around $4-5k per person and SNF was around $9000 per person, an in home (live in) care giver may be more cost effective for two people and may keep them happier and more comfortable, but it really depends on the personalities involved.

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@somemom They live in a town of 4,000 and it is the largest town in the county. I don’t know of anyone in any income bracket there that has a live-in care giver. Not to say it can’t be done; just that it’s unlikely. They do have a woman who has been cleaning bi-weekly for years, and she has started coming over to help them write checks for bills. Dad then reads the check to Mom and signs it. I’m hoping that if we can move them to the first floor their house cleaner will agree to come in once a week and do laundry (which is located on the second floor) and maybe drive Dad to get groceries (and help him with them, of course.) Mom is okay with that idea; she just doesn’t want to remove the claw foot tub in the first floor bath and replace it with a shower. Obviously, a high-sided tub isn’t going to work for them, though.

I’ll start doing some checking and see what I can find regarding aid services. Maybe there’s at least someone who can come in each day? Thanks for the idea.

It sounds as if things with your FIL were very difficult. Hugs to you!

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@somemom at present he has no access to funds. The Memory care unit is locked. They are not allowed to have any cash which upsets him a lot. But the way his mind is working he thinks he needs to change banks to get access to his cash. The immediate problems I have is trying to get his address changed at the bank, pay his bills, etc… His primary Doctor already agreed to write a letter and I think I can contact a doctor from the psych hospital to write the other.

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When thinking about how to address the issues of our elderly parents remaining in their home, we have to look ahed six months, a year, two years. We look at the state of our parents’ health this instant, but forget that in most cases, their health and capabilities will continue to worsen. @Nerdmom88, when you consider revamping your parents’ first floor so they can continue living in their house, think about whether, by the time you finish the revamping, it will be enough.

By your description, it sounds like your parents already are unable to take care of themselves. Your father has dementia and can’t manage to take his medication. He shuffles (a symptom of Alzheimers, by the way, so you can expect it to get worse). He forgets things, again a symptom you can expect to worsen. Your mother is fragile and can barely walk. Closing off the second floor is not going to make them safe in their home.

I suspect that other elderly people in your parents’ situation in your parents’ county DO have live-in caregivers: daughters and daughters-in-law.

Can I urge you to think again about letting your father continue to drive? Taking away his keys might be difficult, but explaining to the parents of the child he kills that you didn’t want to take away the keys would be far more difficult. He should not be on the road.

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@NerdMom88
Check with the county Department of Aging. They can be huge resource for all sorts of things. Check with your county as well as the county your parents live in. You are a caregiver from 2 1/2 hours away. Resources can vary county by county. I had lots of questions and concerns over the years and they guided me in the right directions. I just said tell me what I need to know. There may be things your family members qualify for. Call them and start asking questions.

@tx5athome
You aren’t the first and you won’t be the last. An Elder Care Attorney is a great resource. Check with the county but also check with any area senior centers as well. We had a family lawyer who handled my father’s (and subsequently our family) affairs after my mom died. When he moved close to me (in another state), I put all the normal stuff into place (POA, MPOA, etc.) with a lawyer that I talked to during a presentation at his retirement community. H and I used this firm to put our family affairs in order.

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@NerdMom88 , sorry you had to join us, but it is a caring and valuable community…

@tx5athome , Don’t know anything about TX law, but just FYI, I was told to get guardianship of my Mom in addition to getting control of her trust. I did because I was concerned about her ability to get out of the AL and her risk to ex-handyman who was finacially abusing her. I wish I hadn’t gotten the guardianship in many ways, mostly ongoing cost of reporting yearly. Is costing $2000 and time and effort to report all her finances to the courts. Since all her money, except Social Security is tied up in the trust, I think that might have been sufficient. However, blet and suspenders approach left me feeling better.

Don’t forget the Social Security hoops to jump through if you want to take over that as well. I needed to move her auto deposit away from the bank account I wanted to close, so there were those hoops. Not difficult, just hoops.

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A guardianship might be necessary for a person who is incompetent if the person hasn’t prepared a health care power of attorney before becoming incompetent. And in my state, at least, there is the further complication that even if the person has a health care power of attorney, the agent under that document does not have the power to force admission of a person with Alzheimer’s disease or another dementia into a long-term care facility. So a guardianship might be necessary even if the person does have an existing, broadly written POA.

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exactly that rosered55. You said it much better.

and in my previous comment blet = BELT. :slight_smile:

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@NerdMom88 Welcome. From what you are telling us, your parents living alone, without family nearby, isn’t really sustainable. It really doesn’t matter how many floors they live on, when the memory and executive functioning are no longer reliable, they really need help with services besides housekeeping. As someone who just took the keys from my dad, I would also like to urge you to make sure your dad doesn’t drive. Remember, along with the dementia, the ability to make good decisions goes away as well. With my parents, it’s because they can’t keep anything in their head long enough to weigh it, consider it, and don’t even thing about comparing with other options. I really have to be the brains. When my in-laws wanted to stay in their home, we got the siblings together and told them it wasn’t an option. For my parents, who planned to move but didn’t get around to it for a while, my brother and I told them that the house has to go on sale by a certain date. They are in a CCRC and it is a god send.

@tx5athome Welcome. According to my lawyer, if there is a diagnosis of dementia, they cannot make a decision to sign POA papers. I would only have the option of conservatorship.

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“You are a caregiver from 2 1/2 hours away.”

That’s the issue in a nutshell. Neither of my parents feel as if they need a caregiver, nor do they think the their spouse does. They are sure that they can take up the slack for him/her.

I will be contacting the Department of Aging, and when I head home this weekend I plan to create an opportunity to bring up planning for the next few years. We’ll go from there!

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@NerdMom88, We had a somewhat similar situation with my parents. My sister and I both lived 2 hours away - in different directions. They were getting along okay, but we all knew that something was going to need to be done soon. While we were in the “okay” stage, my father had a massive heart attack and passed away in his sleep one night. Suddenly, my mother had to do all of the things my father had been doing, plus deal with her grief and take care of herself. She lived alone for almost two years until we were able to move her to my sisters house. It was so very hard to deal with issue after issue from a distance. It’s been nine months since we moved her and it’s taken some adjustment, but she is so much less stressed now and while I won’t say she’s happy, she’s content.

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@NerdMom88 , first, hugs!!!

My brother and his wife finally convinced her parents to move up near them. They are in an assisted living apartment together, and have a caregiver. They are Puerto Rican and my sister-in-law managed to find a Puerto Rican caregiver who not only takes care of stuff related to the father’s ostomy and other home health aide business, but she fixes the mother’s hair and so on, stuff that you can’t expect and they thank God for.

It was really really important to the folks not to sell their old home, as if they will return there at some point. But everyone knows that won’t happen. They were 3 hours away, in a city but lots and lots of steps in the tenement.

My brother also has a special needs son at home who is 25 and although he can work various low-skilled jobs, probably can’t ever handle his own finances. They really couldn’t take on more people in their house.

How can we find out about the ability to put someone in a long-term care facility in our state, whether the medical POA is enough?

And on the subject of medical POA, if we have a copy of the signed document naming the health care agent, is that all we need or do we need a notarized copy or something like that? Are the medical POA documents registered with the county or state?

My friend is dealing with both parents having significant issues, father worse though not dementia, but likely an opioid addict after a botched hip replacement; he is home-bound. Mother has bipolar and PTSD from childhood trauma, moved out over a year ago and he only has a few hours of a HHA and intermittent visits with people bringing food or taking his mail (without his consent). Her sister is local, my friend is 2 hours away from her parents. BUT the main problem is money!!! That is, mother tried to put him in a home but decided it was too much money and pulled him out again, three times. Also, they have a trust that the mother is trying to dissolve without his knowledge. My friend wants to take in her dad, but it’s too late as he needs too much care - so he lives ALONE!!!

I often feel like I should call the parents’ county senior service people anonymously, if I could find a public pay phone or block my number, and send them over to check out his situation. Mother is trying to get guardianship without his permission - again, he’s a pill addict but he does not have dementia or memory issue a neurologist. She wants the money only…

Ugh, sorry I am venting on her behalf, but it is so tragic.

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@tx5athome , I happen to know a bit about alcoholism and dementia. Has anyone looked into hepatic encephalopathy for the cause of your father’s dementia? There are treatments for that.

Make sure they run blood ammonia levels. I’m not a doctor, but my closest friend’s wife has dementia due to high ammonia levels when not treated, and works full-time now that they are fixed up.

Obviously a different case, but the alcohol use/suspicion of abuse made me wonder. PM me if you want to know more about it.