Parents caring for the parent support thread (Part 2)

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Dad arrived at hospice today, and when PSand Mom arrived they were met a the door by one of the RNs, who took them to his room. He is still alternating between furious, suspicious, sulking, and asleep. His medical issues are a bit more stable today.

The positive is that when he started snapping at Mom, his RN appeared as if by magic, intervened, and Mom didn’t have to go it alone. Turns out the room has a mic, heard at the “care desk”. The RN also spent a lot of time explaining how things work directly to Dad. They asked a lot of questions and when he attempts to cover up confusion, they are not fooled – but they respect who he was and are giving him lots of info to help him feel in charge. So relieved. Mom cried a lot on the way, but is holding up.

The goal of hospice, RN says, is to feel better, not to get better.

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2868

Came here to vent/complain a little bit about my 76 yr old MIL. Thanks in advance for listening.

She probably has the health of an 86-90 yr old. Type 2 diabetic for 25+ years. Tried to ignore the diabetes for 20 of those years. Has been legally blind for 5 years now. Has no vision in the center of her field of vision, so just has peripheral vision now. And told DH a few months ago that she’s losing the ability to see color.

She’s got a pace maker. Has kidney problems. Gastroparesis. Neuropathy in hands & feet.

We live a 1.5 hr drive from her. She’s still living alone in a house in a regular suburban neighborhood. Has relied on friends for 5 years to drive her everywhere…grocery store, pharmacy, multitude of doctor appointments. Now she’s down to 1 friend who drives her everywhere.

DH & SIL (DH’s sister) have tried for 10 yr to talk to MIL about getting estate paperwork lined up. She refuses. Then says she’ll “think about it,” which is really just a ploy to get you to back off. For the last 3 yr, DH & SIL have repeatedly tried talking to MIL about moving into some sort of assisted living facility. She refuses, has this huge emotional block to it, thinks that every place like that is a “nursing home where you basically wait to die.”

She also wants the world to continue to operate like it did in 1990. Refuses to do grocery pick up orders, but her doing grocery shopping takes her an hour in the store. Refused for years to do pharmacy mail order delivery…had her friends taking her every week to 3 different pharmacies to get prescriptions filled. At least now it’s all done mail order to her mailbox.

People at her church GAVE her a wheelchair, walker, AND a cane this past year. Hello…earth to MIL…that’s a sign. She is VERY unsteady on her feet. Months ago, I helped her order a very nice & fancy-looking Mary Poppins-style cane. Got it delivered to her front door. Does she use it? No.

Why? “It makes me look old.”

Oh…so bending over the hood of our car while you waddle around it because you’re afraid of falling DOESN’T make you look old? Ok.

She has eyeglasses. Has had glasses for years. ALWAYS ‘forgets’ to bring them with her. Refuses to wear them.

Why? “Because I had to wear glasses when I was 7 and everybody teased me and I don’t like how I look in glasses and they make me look old.” Ok, but the hugging the car like a beached whale and hold the restaurant menu 2" from your face DOESN’T make you look old?

Refused for a long time to get hearing aids. Thought that hearing aids were still like they were in the 1980s…when they were these huge things that wrapped around your ear and made a lot of noise. No, MIL, they’re small, fit right inside your ear, nobody can see them. It was so bad that we’d be shouting at her all of the time. AND she’d be shouting back, “WHAT? EH?”

Why wouldn’t she get hearing aids? “I’m afraid they’ll make me look old.” Ok, but SHOUTING at people, DOESN’T make you look old? AAAHHH!! WHATEVER!

So she finally got hearing aids at DH’s insistence. Purchased them from Costco. But then when we’d have her here to stay overnight at our house, she’d regularly “forget” to bring them. Or she WOULD bring them, but she wouldn’t bring the charger. Then at some point, the 'WHAT? EEHH?" would start again.

Sure, MIL, that doesn’t make you look old either.

GUESS WHAT, MIL? You ARE old! You’re fighting it tooth and nail. Guess what else? EVERYBODY ELSE YOUR AGE IS OLD, TOO!

Guess what my DH is doing right now? He’s at her house this evening because she wants him to help her figure out how to fix her vacuum. A vacuum that’s more than 27 years old. Guess what, MIL? We could help you order a new one on Amazon and it would be DELIVERED RIGHT TO YOUR FRONT DOOR!

The time has long past for her to move out of that house and into some sort of senior facility. But she’s still of sound mind and still able to make her own decisions for herself, even though those decisions are some of the dumbest ones I’ve ever seen in my entire life.

MIL is also of the opinion that it’s the duty of the adult children to set aside their own personal lives in order to do everything necessary for the elderly parent. MIL’s view of herself is that this is what SHE did for HER mother, so she thinks that DH & SIL OWE it to her to do the same for her.

SIL lives in another state. And my DH has made it plainly clear that he’s willing to do a lot, but not everything that she wants.

Honestly, none of this is going to change until she has some sort of big health event where she ends up in the hospital and then it’s determined that she CAN’T move back home. It’s frustrating.

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2869

My mom‘s surgery went ahead this morning, even though she came down with Covid last weekend. I couldn’t be there since I also have Covid, but our family friend was able to fly in and is with her at the hospital.

The doctor just called me and he said everything is great. He said they were able to remove 95% of the tumor. Before the surgery it was pressing the optic nerve for her left eye. And it was moving toward the other optic nerve, I guess because it is near the intersection. But he said they were able to remove most of it, and it looks good, and as far as they can tell there is no negative effect on her vision (beyond what she had already lost).

He said she is starting to wake up from the anesthesia but is still very groggy. Hopefully the recovery will go as well as the surgery went!

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That stubbornness and poor balance reminds me of my mother’s early stages of vascular dementia. The stubbornness is most likely poor reasoning skills rather than just being persnickety.

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Well, my sister’s inlaws were home for only five days or so before the dad fell and had to go to the hospital. He has a minor fracture but they’re now concerned about his heart. A neighbor is staying with the mom for now. LS is so ill she can’t help out at all. My sister and her husband are worried sick, but so far BIL is not talking about going up to help. Ugh. It really makes me mad the parents are putting their kids in this position.

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Spent several days with my Dad and Mom; he sleeps most of the day and she has settled into a regular visitation schedule at the hospice. Unlike a hospital stay, there’s no testing, etc, so there’s really no news to share on a daily basis – the result of which is I am out here, hoping someone will tell me any piece of the day that makes me feel less disconnected and bereft, but not wanting to bother Mom when she gets home. And my siblings’ updates tend to come across as gifting me info from the inner circle.

PSiband LocalSib and my mom all assured me that they don’t need any help so I don’t need to come back. Literally, my mom said “He won’t talk to me when you are here and I am fine and I don’t need you for anything so just go home please”. Sigh. I try to frame it as a good thing. (She’s trying to not be a burden). DH and I got all sorts of necessary yet boring things done in 6 days so I know I could be useful, but whatcha gonna do.

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I understand. It’s hurtful. My MIL doesn’t want my H to help her at all, and his S is overwhelmed but won’t allow him to help. What’s especially hurtful is that his mom allows his S’s H to help. We still visit every two months for 4 days, whether they like it or not. I should add that we stay in an Airbnb, so we aren’t imposing on anyone.

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This is a hard time for you Greenbutton. I’m sorry that you are isolated from the family. I wonder if the hospice chaplain or social worker could check in with you and give you updates?

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i think the “spiritual counselor” is unlikely to share much, but it’s a worthwhile idea.

I am reminding myself that this is hard, and it’s going to be hard, and all of us are doing the best we can. Hospice has been a godsend – Dad is spared the constant doctoring and poking and strenuous measures, and Mom is much better rested and oriented without having 24/7 sole caregiver responsibility. They had a real shock though when the PT got Dad on his feet (Dad has been very angry and agitated about being bedridden) — it is clearly not an option from any standpoint (heart, lung, muscle – all systems objected loudly)

DH has to go away for work, and when he does I will go visit my folks. I think someone here mentioned once that it can be better to say “I am coming bc I want to see him” instead of “I am coming to help you” so I plan to try that.

But how is everyone else?

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My FIL kept trying to get out of bed a night, and he was physically unable to support himself. He was in AL, but staff wasn’t with him all the time. MIL wasn’t getting any sleep, so we ended up having to hire someone to just sit by him all night to make sure he didn’t get up. It’s pretty heartbreaking to watch our parents get to that point.

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At the hospital , we found out the nurses couldn’t put the bed rails up unless he fell, or we asked them to – so I asked them to! Hospice gave him a couple days grace, but then had rails put on.

His oxygen goes below 70 and his heart (despite the pacemaker) stutters – but privately the rest of us agreed that if he wants to die trying to stand up, we are not going to tell him that’s the wrong choice. I thought he would have just passed out but the RN says nope, we are beyond that too.

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I am struggling right now with this distinction (between stubbornness and impaired decision making) with my dad, who will turn 94 on Bastille Day. He had a health crisis earlier this year (non-operable sinus tumor) and had to move to Assisted Living, but he’s been doing well on immunotherapy, the tumor has shrunk, and he seemed to be settling in okay (he is also largely wheel-chair bound although he can transfer himself to toilet and bed with a walker, and he has severe macular degeneration and can’t read or see much. Deaf in one ear. Has fallen a couple of times at night in AL; they call me when this happens.). My sister and I live 1200 miles away but we take turns visiting him so he gets a multi-day visit from one of us about every 6 weeks. Before he moved to AL, he was cared for by a 76-year-old “girlfriend” who abruptly dumped him in December when he became too hard to care for and she figured out he wasn’t going to marry her. He was hurt and angry and vowed never to speak to her again. Well, I just found out that the two of them embarked on a road trip (!) from MN to TN to see some old family sites. They must have been cooking this up for quite some time. I also handle his financial affairs and I had to change the passwords on his accounts because someone in mid May tried several times to login (and at one time succeeded in guessing the changed password because I got a text message at 11 p.m. on a Friday with a code from the bank that I did not ask for). The password was very particular to my dad’s life experience and there is no way a random fraudster could have guessed it. It had to be her. I am beside myself because not only is she a mentally unbalanced troubled person, but she is a terrible driver; she cannot help him if he falls; and I worry that she will have another one of her tantrums and leave him stuck in Shelbyville, TN for me to pick up. He has made himself totally dependent on her. The last time they did one of these “road trips” (last Sept.) he fell in a parking lot in Iowa, hit his head, and had to have a CAT scan at the county hospital. He just cannot travel safely anymore and I am furious that she took him out of AL. They told my sister they were leaving on Friday. He didn’t even tell me (I think he knows what I would say). I’ve been calling his cell every day since Sunday and leaving cheerful, un-angry, unjudgmental messages. just because I want him to know that he can call me and not be afraid. But he’s not responding and I wonder if his phone is even with him. My sister in in Germany on business this week. I am so concerned I can hardly sleep. Neither one of them has any business driving on the interstate. But he’s not a prisoner and I have no way of stopping him.

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Sorry to hear this. Since he is in AL anyway, can he be moved to near where you and/or your sister are?

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His medical care is tied to a certain location because he is a retired Mayo Clinic doctor and his Medicare supplemental is the Mayo plan. He lives in a retirement facility that is literally physically attached to the Clinic via skyway and we could never duplicate this arrangement. He is also just too old and delicate to move. That ship has sailed. If he were going to move close to either one of us (East Coast), he should have done it 15 years ago but he didn’t want to. When my mom died in 2006 we suggested he move to the tristate (NY/CT/NJ). Our experience with him is one reason why my husband and I will, when we retire, follow our daughter and her family (from a suitable distance) wherever she goes.

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Is there some mechanism for AL to prohibit him from leaving? Short of declaring him incompetent, I’m thinking talking to his doctors about restricting his movements.

That’s tough. So sorry you are dealing with this.

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The AL agreement says that the resident has the right to “decline care” and also, if the resident leaves for an overnight or longer, he/she must “sign out” of AL so that they are not held responsible for care (meds, supervision, etc.). I can’t stop him from “declining care” and “signing out,” which is what he has done. The next level of care, the euphemistically designated “Supportive Living,” does have locked doors (it’s where the memory care patients are, or where people who are so physically disabled that they need two personnel to lift/help are placed). But as Dad is still legally in charge of himself and his affairs, there is no way to prevent him from leaving. It’s just so foolish and self-destructive. I know he wants to rage against the dying of the light but this is not the way. I can’t take a road trip with him because if he fell I’d have to call 911; I’d also have to be up several times a night with him in the bathroom (I did this when I stayed with him in January before he moved–got no sleep at all). I can’t imagine being the sole driver and caregiver for a week-long road trip for him. It’s too much, and it’s certainly too much for a 76-year-old woman of uncertain health herself. He doesn’t want to admit that he’s disabled and there are certain experiences that aren’t available to him anymore. I also am afraid that they’ll come back married.

I suppose I can ask his GP to make a recommendation in his records that he not travel because of the risks to his well-being. He is a cancer patient currently under treatment, vision-impaired, and fall-prone. I will call him tomorrow.

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Wow, that’s a big worry NJSue. I hope they make it back safely, unmarried, and he has road tripping out of his system. The changing of the password attempt would have me very worried. Can you let his bank know not to process any such changes?

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This pretty well says it all. You don’t get a say about how he spends the end of his life. You didn’t get a say at the beginning of his life and nothing has changed to make you the final boss.
Whether you want to pick up the pieces if things fall apart will be up to you however. I often got through to my dad by saying as much. “Up to you but don’t look at me to help you afterward!” A good–Do it for ME! (you’re asking too much from your family and I’M asking you as your kid!) helped a lot.

The only thing I can think of is to have his lawyer or somebody else he trusts (not you) give him the facts on his will and what will happen if something changes. But no guarantees on him listening to reason.

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Well here the plot thickens. The account is a trust, not for him as an individual. I went down to the bank with my POA in January to get my name on the account but I could not, because Dad will not allow me to be a trustee and the only way that I could get on the account is to get him declared incompetent, which is the nuclear option and would ruin our relationship. My dad set up this trust years ago. He knows and has willingly shared his information with us so we (my sister and I) could have access to the account and pay bills, and I have the physical checkbook (and write checks when needed–I have POA). But the POA only applies to him as an individual and not the trust. And all of his accounts are in trust. So the bank doesn’t know I’m doing the admin work and if they did know, they’d probably put a stop to it. Dad is quite paranoid (he gave us POA, then rescinded it because this woman persuaded him to, then gave it back to us when she left him and AL would not accept him as a resident without it). He is not making good decisions.

It hurts that he trusts this crazy rando he met in 2018 more than he trusts his own children, who have never given any reason for him to doubt our honesty.

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I don’t want to be the “final boss.” That is the last thing I want. I want my father to be his normal prudent wise self and that is gone. Yes, if they marry, I suppose I could just say welp, it’s her problem now. But I can’t, any more than I could let my teenager run off with a 40-year-old and do nothing. It would be one thing if he had always been some feckless imprudent person, but he has not been. I really think he is in severe cognitive decline and she is manipulating him.