Caregiver and/or aging parent check-in

[litskispeciality]

I don't think we've done one of these in a while. How is everyone doing? I hope this can remain a safe space that we can complain, vent and blow off some steam without judgement as this sh!t is hard. 

Also looking for recommendations if anyone has advice of where you can safely vent and process the stress of this without taking it out on your loved one. Still trying to find a good counselor, but open to other suggestions.

[stemmie]

litskispeciality, Thanks for brining this up.

For support related to dementia (all types) issues your local Alzheimer's should be able to direct anyone caregiving for any kind of dementia a list of IRL and online support groups. I went to one when dad was diagnosed for a while-- they were helpful with suggestions and comisseration. I highly recommend. ALZcontected.com is an online group that's also helpful.

My dad had dementia and it was a wild ride. Six years on since he died, mom (86) and I are both picking up some memory and word-finding issues for her. We went out for my birthday last week. Mom's got serious FOMO, so she was hinting around about plans about 2 weeks before. I shared that we'd made brunch reservations at a fun new place so that my niece could join us. Then a week later, she was beating around it again so I explained that we were all going to brunch and would discuss logistics of the day (who was picking her up and when) the Friday before when niece and I were taking her to a scholarship fundraiser tea. We discussed the restaurant chosen in depth and then agreed niece would collect her around 1:30. On Sunday, she called again to ask if I had plans for my birthday. She's also been anxious about her many doctor appointments calling me to ask if she has one on any given day. She has a paper calendar and one on her phone but doesn't think to consult it.

We saw her PCP Thursday and discussed this as part of her annual checkup. He wasn't super concerned because she did well on the MMSE, but agreed to check her B12, TSH and Lyme antibodies and order an MRI w/contrast to be done late May. Thyroid and B12 are fine, but she's positive for Lyme antibodies-- waiting to here next steps on that. He also gave a referral to the Memory Center-- it's 12 weeks to get a called back to schedule an appointment 6 months after that. I know rationally that this isn't an emergency and I have all the legal paperwork in order, but I really don't want to go through this particular nightmare a second time.

[7costanza]

My dad has diabetes and early stage kidney failure, has a colovesicle fistula that will require surgery within the next few months, and had esophageal cancer about 10 years ago. I saw him last week for the first time since Christmas and he looks like an old man for the first time which was so jarring. We are not close at all, but I offered to take him to surgery and he declined as his girlfriend’s son is going to take him instead. That kind of stung and I’m anticipating lots more complicated feelings as he inevitably continues to decline. Ugh

[jackie011]

My MIL has dementia and has lived in a skilled nursing facility since August. Everything changed when that decision was made, mainly for the better for our whole family. FIL is no longer a full time caregiver snd has actually been able to go on a few trips to see family. She is well cared for and, for the most part, seems content.

This week FIL, DH, and DS went on a big trip, leaving me as the lone contact for MIL. I’ve been visiting her regularly, and keeping up with her routine. I got a call the other day that she was aggressive towards another resident and I kinda froze that if something happens while they’re away, it’s all on me and that felt very heavy.

On top of this, FIL had a medical emergency on the trip, which completely freaked out DS. It turned out to be a fairly simple fix, but the guidance was to follow up on things with his GP, so of course my mind is racing with what happens if FIL is declining. There’s still so much to put in place for MIL.

[waverly]

My dad has been in assisted living for about 2 years. My sister is his POA and conservator. She keeps complaining to me about the accounting for the court, and I tell her she could disolve the conservatorship, but she isn't sure that a doctor would clear him. I think it is more that since he is on meds he is no longer aggressive so that they could work together, but I am not sure how the court views it. I am glad that I am not conservator, and I encourage her to pay herself which is allowable by the court.

My mom has Crohns and has been in a flare for about 3 years it seems like. Every day revolves around her bowel movements. I am sure that it is very depressing for her, but also for us to watch. She started drinking to go to sleep and still drinks even though she can sleep without it. She has severe sleep apnea, and has a hand me down machine. There is a wait list for the sleep clinic. She walked into mental health but all they did was intake forms, and there is a waitlist for mental health services and I am not sure which ones she is pursuing because she doesn't seem to want to do alcohol counseling or talk therapy and seems to only want to change anti depressants. When I mention something about her health to my sister, she gets very dismissive of my ideas, and then I never hear any updates probably because there aren't any. Sister took her for a colonoscopy which was normal, but I really don't think she is doing any of her other appointments (lung, mental health or sleep apnea stuff) so who knows.

Mom can schedule and drive herself, so I think she needs to make more of an effort, but she had 2 trips rescheduled from 2020 to this year, so she has 5 trips this year and 4 of them were Feb, April, May, end of June/ July. Kind of hard to get into the doctor if she is never home, but I am glad she gets to go on trips. Unfortunately the February one she ended up in the hospital with Covid and altitude sickness, and she no longer gets her Covid vaccines but sees no correlation to the hospitalization because of the altitude part.  She probably needs to get the Covid vaccine but is now refusing it because of Fox news and my BIL who is extreme right wing and everyone buries their head in the sand because that is the what BIL prefers.    

[shortstax]

Hugs to everyone in this thread—it’s so tough.

It’s been a tumultuous few months since my dad’s wandering off incident, but he’s now adjusted well to memory care. It’s wonderful to know he’s safe and cared for.

I thought my mom would feel relief at not being a full time caregiver to someone with stage 6.5 Alzheimer’s, but she’s grieving and stressed, and is being so high maintenance right now. I love her, but she calls and texts multiple times day but refuses to seek counseling or any support groups.

I had to do it all—find him a place, get everything in order to file for Medicaid, plan funerals as part of their spend down, etc. my mom shut down and my brother who is local to them has not been helpful. It makes me so mad—I’ve missed so much of work this spring and so many weekends with my kid’s activities because I had to drive 5 hours round trip so many days to take care of it all.

Pdq

And now, I’m a little hurt and can’t tell anyone.

Despite me doing this all, as POA I had to get a statement from my dad’s life insurance policy to prove there’s no surrender value as part of his Medicaid application. In doing so, I found my dad’s LI is a 100k policy that he took out 10 years ago. He listed only my brother as beneficiary. 100%. At that time my brother made more income than me and I had a kid—but sure, give it all to the son who won’t even visit him in memory care (which is totally in character for him.)

Thanks for letting me vent ❤️

[aprilsails]

Hugs shortstax That hurts and is unfair. My Mom has dealt with a myriad of similar patriarchal bullshit within her own family and while she is continuing to provide care, her and now her Mom as well, are very aware that her brothers are coming out way ahead on the financial side, while having done very little of the heavy lifting for my grandfather.

My MIL is on a tear and is taking care of lots of business after we gave her some flack about not being able to maintain the house on her own. She's living in a 40 year old, 3600 sq ft McMansion which she cannot maintain while dealing with FIL and his issues. Which, good for her, she's organizing and getting things done (selling his car, ordering new blinds and a new fridge, hiring a house cleaner). In the meantime FIL is losing ground daily. I don't think he will be living in the house in another year. He had an evaluation today and we won't get the results for a couple of weeks but she thinks he has Lewy Body Dementia. We know he also likely has Frontal Lobe Dementia related to a motorcycle accident 18 years ago. I guess we'll find out.

[CurlyQ284]

My parents live outside DC, I live in Michigan. They were planning to move here by Feb 1st but my dad's blood work showed he was in a decline, so they canceled the move. He had a liver transplant almost 12 years ago and has been going downhill since, he has macular degeneration, nerve pain, I don't even remember what else but now his kidneys are failing. He had a dialysis port put in yesterday, they think he will have to start dialysis in the next couple of months.

My mom is so so depressed and has major caregiver fatigue. She said she doesn't know why he wants to do dialysis, his quality of life won't get any better. He's basically in bed all day every day. I think she's ready for it to be over. She's been managing his care since the transplant. He wasn't a nice guy before all this, so it's a huge strain on her.

I try to help as much as possible from here, but it's almost like she gets annoyed with my interference so I make suggestions that she ignores and then nothing changes. It stresses me out but I keep telling myself that she's an adult, I can't force her to do anything, all I can do is support her and I can't stress out if nothing ever improves with managing all this.

[minzy]

Hugs to all. This shit is really hard.

I am fresh on the scene as my father (who has never been in great health) was hospitalized for a blood infection last Thursday, and we learned on Monday that he has extensive metastatic disease, probably stage 4 pancreatic cancer. Realizing the gravity of the MRI results the doctor read to me over the phone Monday morning, I threw everything in a bag and bolted west to him and my stepmother. It is hard to believe it has literally been less than two days. I got us in with his PCP yesterday, today I call Cleveland Clinic. All day yesterday he was yipping about minutiae and talking about little tinkering projects he wants to do and I am trying not to be incredulous. I am outwardly supportive, but thinking, “your doctor just said without treatments we’re looking at months. Who gives a flying fuck about a tire rebate or cheaper gas prices across state lines, and why are you thinking about fixing up that mower and tweaking some part on your truck??” My aunt the psychologist said last night it is good for his mental health to have these little things to focus on. Meanwhile last night was a tour of my childhood home and all the various things he still has there. Truthfully I would love for him to start formulating a plan to make this somewhat logistically easier on me as executor to be, physically closer child (4.5 hours to my sister’s 9). But it is obviously not about me.

I am trying to be grateful with my sister’s take that the blood infection alerted us to the cancer so we at least have some heads up that the end is near and can orient ourselves accordingly. And I am guessing it will be pretty quick rather than a long protracted thing (although it already has been long and protracted, but we just didn’t know he was climbing through the stages). He has maintained a modest level of functionality for a long time and for that I am grateful. He will likely never have dementia, so he and we will probably be spared that kind of hell, although we will have another. In the time since he cold turkey quit drinking two years ago and now, we have “made memories” with two trips with grandkids to national parks and we saw the eclipse, among other things, and I am so grateful for that.

Today after I determine next steps medically, I will “read in” my dad’s twin. They have had a contentious relationship at times but this might fix that, too. #brightside? I spoke honestly to my older daughter yesterday about it and she was very upset. The emotional part is exhausting. My sis is contemplating an FMLA leave of absence and I should be able to take a bit of sick leave as well. Our husbands are both rock stars, thankfully. I am also fresh off of handling a relative’s estate so have some recent experience with that stuff, too.

I knew at some point (once our mother died a very long time ago now) that we would someday be looking at my dad’s end of life, and now I see the beast before us instead of vaguely fearing it. I guess there is a strange comfort in knowing we’ve arrived? I do not like that we are here, but on the other hand there is also no place I need to be more than right where I am.

Thanks for the place to vent. Apparently I had a lot to get out.

[shortstax]

All of my likes are not really likes—they’re virtual hugs 😊

[cricketwife]

[ETA: Removed the tag. ] I'm really sorry about the life insurance situation. I had a similar situation, though a much smaller policy. My brother is the beneificiary. It's "only" 10k and there are three of us, so I'm telling myself it's only a 3.3K difference to me, but the PRINCIPLE of it is infuriating.

Things are not good with my mother, but they are stable (well, other than that it's a degenerative disease, so I guess not stable in that way.) She has severe Alzheimer's. I moved her from a terrible memory care facility to one that is just 5 ladies in a home last August and it's 1000x better. So things are "as good as they get" but it's heartbreaking. I used to take her all day every Saturday, but in the last 3-6 months that's gradually reduced to 3-4 hours on a Saturday because I just can't do it all day anymore - she has detiorated and it's more than I can handle. I was talking with a work colleague whose mother also has Alzheimer's and she said, "there's no joy" and it made me sad. I've said that so many times. There is no joy left in the relationship and it's heartbreaking. Furthermore, my mother has so little happiness of her own. It's fleeting moments and of course she doesn't remember them when they happpen. I wish for her to have a cardiac arrest and "go gentle into that good night" rather than this.

Futhermore, it has destroyed my relationships with my two brothers. One brother has his own issues and we've never had a great relationship. But for the other to be completely absent is beyond disappointing. I have done EVERYTHING and they DON'T EVEN ASK ABOUT HER. It's infuriating. And it does bother me that if there's any money left when she goes, they will get equal shares (except for the one brother who will get more!!) On the one hand, I love my mother dearly and I am honored that she chose me for her POA, but OTOH, the guilt, stress, and time commmitment of it all really maddens me. I have aged notably in the last 18 months. I'm the only one of the three children who has both kids and a job (one brother is a SAHD and the other has no kids) and yet I'm the one who gets to have this added burden. And the mother that I knew would hate this for me as well. It all just sucks. And at every doctor's appointment, I hear "Physically, she's in really good shape." Heartbreaking.

Oh, and taking her back to her home has gotten harder and harder. It used to be bad at the first place, but once I moved her, it was fine at the current place for a number of months. Every time now, I think, "Was this our last outing?" because if it gets too hard to get her to go back into the home, I won't be able to take her out and that's heartbreaking too.

[mrsslocombe]

My FIL moved to assisted living in October, my MIL died in November. Everything has been easier since she died. I try not to say that out loud too often to my husband, but he does agree.

The hardest thing with my FIL has been that he goes through periods where he just keeps asking for assisted suicide. He's in PA so it's not legal, and it doesn't look like he would be eligible anywhere in the US or Canada, if we could even get him there. He went on an anti-depressant last summer and a medication for Parkinsons in November, and he had stopped asking for awhile. But the past few weeks he's been talking about it again. He would probably benefit from therapy, but I haven't found a therapist who does house calls. He can't do virtual therapy.

The other burden is that we are taking care of their giant three story house, which my husband feels that he has to be in every single week to check on. We live 3 hours away and don't have a car, so we're spending a fortune in Amtrak tickets. We've been very, very slowly cleaning out the house, but I don't think H intends to sell it while his dad is alive. Which, could be 5-10 years from now. I don't know if I can do this for 5 years, let alone longer.

Also, why do people keep so much shit! Their house was not a hoarding situation or anything, it was very neat and tidy. But they just have so much space to keep stuff. We found literally thousands of books up in the outdoor loft, that had been up there for decades, disintegrating. My MIL never threw away a single file, she had every tax return going back to the 1960s. We're going to be cleaning out this house for years.

[pinkplasticdoll]

I had to reschedule one of my dad's appointments this morning because I can not get enough energy to pick him up and take him. We have had so many appointments in the month of April that I am so behind in work and life in general. The appointment that was rescheduled was a lung cancer screening so while it's important it can wait for another week. Also, we have a diagnosis of lewy body dementia which is a change from our original dementia . I am honestly fine with the diagnosis because I dont know that it ultimately changes any of the outcomes that I anticipated but instead explains a lot of what has been going on with him for the last year. I am tired, exhausted, pouring from an empty cup that has coffee chunked to the bottom and we are scraping those chunks to get by in life.

I am also taking care of my mother which I expected to do at some point but its hard. just so hard. Oh and my inlaws are declining as well so my husband is managing that and asking for help from me because I have been there with my dad.

[litskispeciality]

I'm so sorry to everyone going through this. I know we say this every time but our society really sucks with this stuff.

I assume this is a PDQ PDQ PDQ thread

The Geriatric Psych place that we have all kinds of issues with (including them sending me another patient's info, can't remember if I shared that) is finally about 30% on board. They've prescribed my dad an anti-depressant in hopes of eventually getting him off of Ativan, or at least down to one a day. Dad's Neurologist is also prescribing an Alz med to help slow down some symptoms, so now it's a waiting game to let everything get in to his system. We've also had to meet with this place twice in the last month, and then two more times before mid-June. Thankfully they'll do some apts over Zoom as it's about 30 mins from my dad's plus a PITA to get him in and out of the building...BUT I have to be with him as they're only licensed in his state. Thank goodness I WFH and was able to work out of my dad's place during an apt this week, but it was a nightmare the rest of the day as my dad doesn't know what day it is, or remember that I'm actually working. Also then have to leave my house 1.5 hours earlier than my shift, and then drive home in traffic.

Semi good news, several docs have now read my dad's PET scan results and everyone's "well he doesn't test high enough in one area, that's good!"...but he has all of the symptoms of FTD or Alz, and without a formal diagnosis I can't apply for more help. Plus he lives in a state with little state funding or services. We keep dancing around do we move him to assisted living/memory care in my state/closer to me, but I just can't get there yet.

Some of my personal doc apts have come up so I'm really stressing flexing once a week or more. My brother won't be taking my dad to any apts the rest of this year, and probably not for at least half of next year. My husband has weird days off so he takes my dad to some apts, but his folks still have a lot of issues. My work seems to be on board, but we have a new supervisor coming on, and it's "so, so flexible!"...as long as you flex like maybe once a month. I think I'm going to have to work out of my dad's on the next Zoom day even though I get a lot less done.

Oh and I got the letter stating that my dad's POA should be activated, but I haven't bothered to have it notarized and activated outside of his doctors. I just don't have the energy. I'm sure it can catch up to me at some point, but for right now I have access to his main bank account.

Edit: Sorry for the brain dump here. We're still paying OOP for once a day home health care and twice a week memory care. HHA is very nice, but not very skilled in older folks who have any sort of issues.. I get texts almost every day telling me my dad peed the bed and he won't wear Depends (he has plenty in house). He won't change his clothes very often because "he doesn't have any clean clothes"...although I keep buying him smaller sizes as he's lost weight. I've told PCP, Neuro, Psychiatry about the hygiene, but no one is putting it together. HHA just keeps telling me to have him change his clothes which I can't force him to do. I even tried when I was there this week but he fought me.

Memory Care person is very nice, but honestly we're not getting what we signed up for. They don't teach him anything, they just help him shower and then put on the same dirty clothes even though I've told the person direct in person to help him. I wouldn't care that much but we're paying over $30 an hour and then the person often just sits with him while he eats a frozen meal.

I know that a lot of these issues *could* be a little easier by putting him in assisted living or memory care, but I really want my brother to be better and it be a family decision. Plus the decline after the move. If we can get my dad down to a meal, out of his place he does ok minus the Depends and memory issues.

[stemmie]

Update to mom.

Her PCP's assistant called her yesterday to inform her she tested positive for Lyme Disease and that they'll be treating it with doxycycline. They always call her which is annoying as 1) I am the one who provides all her transportation and 2) she is ridiculously medically ignorant despite 86 years on this planet and a college education. Seriously, some days I wonder how I survived into adulthood with her as my medical advocate. A few months ago she had a silent UTI that derailed her. In talking about it after she recovered she asked if the infection "came from (some incredibly miniscule amount of e. coli) in the water supply. Um, no. It mostly likely came from your ass.

Anyway, after the assistant explained things, she asked if mom had any questions. Nope. I mean, if you were having cognitive issues and they associated it with a treatable condition would you not ask if this will improve things or keep them from getting worse? SMH. I contacted the doc via the portal and am hoping for some clarity. I hope they reply in writing given her current level of flakiness.

[litskispeciality]

stemmie, I won't quote you, and let me know if you want me to delete. I said above my dad's doctor's (Psychiatry after cognitive testing, then PCP agreed) wrote a letter stating that my dad isn't able to make his own decisions regarding medical or financial, and his POA should be activated. It completely sucks (he's only 74), but I wonder if your parents docs could at least do something to say that your mom needs another family member in the conversation for reasons you stated?

It's been a HUGE PITA, but I've been able to get most of my dad's docs to put my number as the primary contact too. Every time my dad has a doc apt now it's an incredibly stressful day. The other day I called his Neuro to confirm an apt my DH was taking dad too...and Neuro "didn't have the apt" (we rescheduled from a few weeks ago when we finally got snow), but they squeezed my dad in. They still had my dad's number on file so my dad got a text and somehow cancelled his apt. Dad calls me in a panic "apt is cancelled, don't come get me (1+ hour away)" so I have to call Neuro and grab the supervisor on lunch because they don't answer the phones during lunch (*sigh*) to confirm he did have an apt. The worst part is this place knows of his cognitive issues, why can't they put a hold that he isn't allowed to cancel his apts, his family has to do that?!? Anyway I just don't have the mental energy for a 30 min doc apt to derail my entire day for stupid sh!t that shouldn't be an issue.

Finally, I agree with others about no joy in visits. I feel like such an a-hole kid, but often when I go visit my dad even on non-apt days it's a chore rather than a chance to visit while he still remembers me. We usually have a meal and try to catch up, but he'll often get sucked in to his computer. He also wants to sleep in on weekends (so do I), so we meet up later than I'd like, then he gets upset when I want to leave by 2 - 2:30 PM as I get home around 4 and my whole weekend day is gone. I think part of this frustration is that my brother would often go week A, I might go week B, and then we both take a week off. For months I've been doing all of the visits at a more frequent pace, and I see no end to that in sight. It's so stressful to think I'll look back and miss our visits, but need to balance my own mental health.

[stemmie]

litskispeciality,

Good reminder. Thanks. I already have a well written durable POA for financial and health decisions for the future. I've used it a handful of times to sell their homes and to access dad's investment accounts which he was managing badly.

A few of her doctor's offices do contact me as they know I manage her calendar, but I don't feel it's time to wrangle the rest from her just yet. I do have HIPAA clearance for all her doctors already. It's early days still-- while she didn't recall our brunch plans, she did remember that the registration on her car (that DS uses-- she doesn't drive) and property taxes were due yesterday and asked me for a ride to the tax office the day before.

The doctor did call me back a few minutes ago. He's treating the Lyme in hopes to avoid neurological symptoms which are sometimes reversible to some degree. He still wants the MRI and get a neurology consult. We'll see him again after the MRI comes back in early June. Reading a little on long-term Lyme Disease cognitive issues, they seem to present a little unusually compared to garden variety dementias (dad had mixed-- Alzheimer's and an alcohol-related Wernicke-Korsakoff's) By the time we got dad diagnosed, he had anosognosia and no ability to recognize his deficits. With Lyme, it's a person who is most aware of deficits-- focus issues, word finding, short term memory rather than getting picked up on a screening test. Her MMSE was 28-- so perfectly normal.

To your dad-- what is the in-home "memory care" person's role? I've not heard of this as an option aside from specially trained SLPs who sometimes do "cognitive therapy". Dad did get some of that along with PT and OT in rehab for a while. I don't think it brought much to the party except breaking up his day. The clothing thing would drive me insane.

[vasc]

I am primary point of contact for my out-of-state aunt who is 81 and blind. She has weekly visits from an RN to set up her pill box, a home health aid for bathing assistance, and up until two weeks ago a friend who would do every-other-week cleaning and errands. However, two weeks ago the RN called me to report that Aunt had informed her of drama with the friend regarding the terms Aunt pays her and potential that maybe friend was stealing money or asking for extra money to help cover things like her car insurance. This has been a sketchy situation for awhile now but I’d never been able to convince Aunt to fire her because she’s been involved for about 15 years and she’s the one who takes Aunt out for Thanksgiving, Christmas, etc.

Anyway, nurse was very alarmed by Aunt’s story and so I called Aunt and she finally gave me permission to be the bad guy and fire the woman. I called a locksmith to change the locks (another ordeal because Aunt needed someone to be present with her during the appointment and of course the guy only gave a window of time when he’d arrive and ended up coming at the end of that window). After that was done I called up the friend and as kindly and diplomatically as possible fired her. DD10 listened in on the conversation (and I actually recorded it myself) and said she felt awkward listening to me fire this lady. I told her I needed her to see me handle a situation where someone was mistreated and take charge of ending it rather than allowing it to happen with no backbone.

The kicker of this whole situation is that I was able to listen to the last conversation Aunt had with this woman over the Ring camera I have setup in her living room. That’s my biggest piece of advice for anyone managing elderly loved ones remotely….get a Ring doorbell camera and several indoor cameras setup!

Aunt is relieved that the ordeal is behind her although she’s sad the friendship is over. Even bad company was better than no company.

The nurse and HHA come from her city’s franchise of Home Instead. I can’t recommend them enough for how wonderful they’ve been, responsive, and my “eyes” on Aunt when I’m not there.

[Wallflower]

I have a 91-year old Mom living on her own (turns 92 in June) but we just don't know how much longer that can go on. She can move in with me or into a facility, but any time you bring up the idea of not staying in her own home, she starts to cry. Such a great feeling, making your mother cry.

On the other hand, my stepsister has been dealing with all kinds of issues with her mom and she's an only child, so it all falls on her. I count myself lucky that 1) my brother and I are pretty united and work together to help our Mom, with my sister at a distance but supportive, and 2) Mom generally doesn't fight us on stuff.

It's exhausting sometimes, though. Mom can live on her own but her memory is not good in the general short-term. I swear, throughout the month of April, Mom must have called me 20 times to make sure my sister's birthday gift ($$) was handled. Several times, it was multiple calls in a day. Sometimes it so hard to remain patient when you answer the same damned question over and over!

[SusanBAnthony]

I'm not the caregiver, it's my mom, but we had a scare last night. My grandpa still drives, and we all think it's probably a bad idea. Last night he drove to pick up dinner,and left to go back home. He says his mind went blank and he didn't know how to get home, but he remembered how to drive back together restaurant. He called his home phone, which he remembered. My uncle went to get him and drove him home.

Now my mom and uncle are thinking he may be doing this regularly and his wife and he just aren't telling anyone. His wife definitely wants him to keep driving for her own freedom. Last night his wife was out of town, which is why my mom was at his house (but she was working from home because she still works FT). Until now she has just gone to be present in the house in case, not to fully care for him. She can't fully care for him while working obviously.

This stuff is the pits.

[tacokick]

My dad and I were never very close but I’ve taking care of things for him since my mom died in 2020. Normally he lives alone and does things like shopping and cooking for himself and is very physically active but I handle the rest of his life, have POA, medical proxy etc My brother has flat out said he will never help with anything.

His health took a downturn last week and he went in the hospital. Things are now looking up for him health wise after some very bad days and they seem very positive about his recovery.

But he is being very cranky with me when I visit him in the ICU. I’m glad he’s feeling better but we really can’t be doing more for him than we are. I can’t help that no one told me his hearing aid died after I left from my multi hour hospital visit with him so I didn’t know bring the battery this morning.

My husband is here helping us rather than being with his own father who is on hospice in NYC. I am still doing all of his general life stuff I always do plus running to the hospital all the time.

Right now my husband is spending the night at his house with the dog and his neighbors are letting it out midday so he can commute to work. It takes a ton of time going back and forth and is not sustainable. While she is very sweet with people, she can’t live with other dogs and is quite large and we can’t find a sitter that’s willing and available. I don’t really know what to do, we don’t want to try to rehome her if it looks like he might be coming home at some point.

I told the PT that we can’t provide around the clock care for him so he needs to go to rehab to be able to live independently before going home if that is their goal. He was telling her he has people to check in on him multiple times a day if he went straight home from the hospital but literally who? He does not live near us and his few (rural) neighbors are either elderly or work full time and have small children. Luckily I happened to catch her this morning!

I’m just worn out. Luckily we don’t have children on top of this. It would be easier if he was a little more appreciative and pleasant.

[litskispeciality]

stemmie,, sorry for the delay. My brother set up the Memory Care service so I'm not 100% sure. I'll find a link to the company and PM you. Even if you're not in the same state it might give you an idea. The way I was sold on it was that it was like a Visiting Angels that we've used before, but more specifically people who are trained in cognitive decline. They help with hygiene/showering, but are also supposed to help with memory, things like using Depends and so on. We have to do it in 3+ hour blocks so we only do 2 days per week M and F so that it gives dad some attention if we can't see him on a weekend.

Understandably from the independence side my dad is VERY anti-this service as he doesn't think he has health problems (symptom of FTD, but what do I know?) so we have to sell it like Physical Therapy. The person we use is super nice, but very young and doesn't seem to really have any training. I was up there this week during their visit and said something like "oh maybe you have some ideas/techniques to help my dad remember where he keeps his wallet now (since it's 8 panicked phone calls to me)"...but I was met with "you're (mine) idea to write down where he put it on his daily calendar was a good idea". I think we got more assistance out of Visiting Angels, but my dad's state is so limited on services we can't pick and choose. Oh and the person we use calls out a lot and the agency doesn't give us a lot of notice. I had called way back when my brother's stuff started, asking the agency to add me as the contact. Sometimes I can't even get the company on the phone if we need to change our day, or verify schedules such as Monday holidays that the staff get off *sigh*

*Everyone deserves a holiday, but my understanding of most healthcare is that it's 24/7, you unfortunately work holidays. I don't know if this company doesn't have the bandwidth or what, but they don't reschedule the agent a holiday week, just call us to ask if we want to pay more to work on a holiday and we decline.

[litskispeciality]

tacokick, I'm glad your dad is getting a little better. I agree this sh!t is so exhausting. I had one counselor recently who wasn't very good. Kept just telling me to take a break because "you can't pour from an empty cup"...which is true except I literally don't have anyone else. We also don't have kids and I say to a lot of folks I don't think I could work full time, keep the kids and take care of my dad. I don't even think it's my husband's weird, rotating schedule, there just aren't enough hours in a full time work week kids or not.

[aprilsails]

MIL just got the results of FILs evaluation. We're dealing with likely mild FTD (expected due to a major frontal lobe contusion after a motorcycle accident 18 years ago) complicated by fairly progressed Wernicke-Korsakoff alcohol use disorder. Which isn't all that surprising since MIL and FIL have both been functional alcoholics for the better part of 20 years. She cleaned up and greatly reduced her drinking at the start of Covid due to a health scare, but he's only drank more as his cognitive functioning has declined.

The evaluator asked him if he would stop drinking and he responded absolutely not. I don't know what the right approach will be. He doesn't have a license and we could remove alcohol from the house. We just don't know how that would impact MIL which has always been our biggest issue. Since the accident he is quick to anger and he's also a foot taller than her. He's a big guy. So much of this hasn't been dealt with properly since she's straight scared of him.

[tacokick]

litskispeciality

I was reading some literature about an implant/surgery they could do and it says that patients would need a caretaker after and that your caretaker needs to take leave from work or quit their job for at least 3-6 months post procedure and many beyond. How can people do that? Maybe if you are both retired? But then that means you have to have a caretaker who is both older but in much better shape than you. I’m not sure I could do that and I’m not sure if he’d cope well with the long recovery time and even then, the quality of life doesn’t seem awesome.

I’m sorry you have to deal with this type of situation too. I don’t think people get how time consuming it is and how much falls through the cracks if you aren’t there and up on everything.

[stemmie]

litskispeciality, I didn't realize you were up against FTD. That's a tough one. Because of the memory piece is typically better longer than other dementias a false assumption that they're more functional than they are exists, even among professionals. This makes keeping them safe and cared for really hard.

We found the agency HHAs weren't as well trained or reliable as promised. The better HHAs already had full rosters, so we got the duds. The hygiene battle is real, and I can see where an untrained aide will avoid it with a challenging client who doesn't have family checking daily. Or it could be dad is misreporting hoping to anger you enough to fire her. It's unlikely she going to be able to teach him strategies that will stick if she's only there 3 times a week.

aprilsails, my dad had WKS as well as Alzheimer's. We had the same dilemma-- how to restrict access to alcohol in a person who had no intention to be sober and could be volatile when denied drinks. Any attempt to control his drinking was met with heavier consumption to prove we weren't in charge of him. Secretly watering drinks down and/or subbing NA versions was recognized and came with aggressive consequences. He was too impaired to make the choice to drink in the context of it hastening his death and yet he was already terminally ill with Alzheimer's. I saw it as 2 options-- one was to place him in a secure facility which would 1) impoverish my mom who will likely need care at some point, 2) make everyone miserable and 3) fail to improve his quality of life. Plus, he was in his 80s-- saving him from alcohol only to live through the wretched end stages of dementia didn't seem like a great option.

We also found adding a low dose antipsychotic help with the rage. A geripsych can be really helpful with meds management. Interestingly, given the nature of WKS I found mom and I were often painted with the "enabler" brush by neurology as if they had no concept of addition as a disease. I especially didn't deserve it as I only saw the man a handful of times each year because of distance. The stigma was real and sometimes we felt very judged. The geripsych was much more helpful once we had a firm diagnosis and more understanding of the complexity of the interplay between substance use and dementia.

[waverly]

That is what my dad has- WKS. He is in assisted living now because he couldn’t live on his own long story short and he was too volatile at the time for anyone to take care of him. He went to the psych ward for 5 weeks and then assisted living. Luckily assisted living will take him as opposed to a nursing home and its rural so very reasonably priced.

[aprilsails]

stemmie and waverly thanks for the info.

I haven't been able to talk to MIL to get a feel for how she wants to approach this. DH is of the opinion that she can stop bringing alcohol into the house and it will resolve itself, but I don't think it will be so simple for her living with him. I also considered her a full blown alcoholic 5 years ago, so she's an enabler herself.

He is young and in good physical health outside of this. I think she was hoping for LBD since it is quickly progressing. He is not going to have some magical recovery without alcohol. He has had mental deficiencies for over 3 years, significant issues for over a year and a half. He also has some level of FTD, which will not improve. Throughout all of this she put her head in the sand and refused to take him into the hospital or the doctors until paramedics insisted he had to go in this past November.

She is honestly miserable and hates living with him like this. She is some level of ASD and cannot lie or pretend to smooth things over so they are often in contention.

This is going to be tough no matter the diagnosis.

[ProfessorArtNerd]

I have to vent, and since this is a judgment free, PDQ space, I feel kind of safe.

My mom never asked about the results of my surgery. She doesn’t know that I had cancer. And like, I understand that she is mourning my dad (passed away 12/19/23). She’s just not my mom anymore.

She’s also acting like we took her car away. But she can barely walk, she’s not capable of driving. She asked me to take the car so it doesn’t just sit. (Also, Lucy turns 16 in a couple weeks and wants to learn to drive). “Ohh I’d help you but I don’t have a car.” Mom. You couldn’t drive it even if you did, come on!

She came back from such a hard fought battle against cancer in 2016 to just sit in the house, complain to me, and not move. It’s so upsetting.

[stemmie]

aprilsails, IME, with dementia in the mix, some of the best practices I learned in Al Anon no longer applied. It could not just be unpleasant for MIL to be the alcohol police; it could be dangerous and escalate. Your MIL will need to keep a charged phone on her person at all times and leave the house if he gets aggressive.

Your DH and MIL might consider dementia-proofing the house discretely. The OT at dad's rehab came to the house and made suggestions before we brought him home. One thing I wouldn't have thought of was to make sure any weapons are removed as well as anything that could be weaponized-- kitchen knives, golf clubs, small tables, etc.

I would also consider looking into Smart911 if it's available where you live. This is a great idea for anyone really. Smart911 allows you to share information about your dad that would be given to first responders in route to a call-- knowing dad has dementia could help police and EMTs respond appropriately and deescalate for safety of all involved.

ProfessorArtNerd, vent away. I find as my mom gets older she is more and more inwardly focused and less resilient. I also realized after dad died just how passive she is as a person. I always thought her "going with the flow" was a positive, but it's so extreme that now that no one tells her what to do (dad or work) she's got terrible inertia. She could call and Uber to go to the library or recreation center (indoor pool & gym)-- [phone] for the olds who can't manage a smartphone-- or walk the 1/4 mile to the big shopping area near her but she'd rather be bored.