I have questions and some answers to some of your replies but I have a few things I need to take care of.
In the meantime, this is one I really strongly need advice on:
How do I handle repeatedly fighting with her about staying home alone?
I had it punted out there because dad was in the hospital and we needed to stay close. Then I kicked the can because we had so much to take care of for the funeral. Then I “needed her to be with me because we just had the funeral and it was sad.”
But we’ve already had to have two terse conversations in the last two days about how ready she is to go home. Believe me, I get it–she’s been uprooted and her life is in a tailspin (this isn’t true at all. She spends almost all of her time working on a project–this week is putting all the photos back in the albums from the slideshow we made of dad’s funeral). So it’s not like she’s in a bad situation or bored or anything–she just wants to go home.
I am to the point I keep explaining she can’t because I can’t stay there with her and she cannot be alone. She gets mad but I walk her through it–the disease, my dad protecting her from it, and how she keeps ended up in the ER from delirium episodes.
What’s the blanket/easy “can’t live in the house” excuse so I don’t have to fight her OR walk through the entire avalanche of the disease?
I’m even considering something like “all the utilities were in dad’s name so there’s no power to the house until we confirm his death certificate” or something like that.
Someone mentioned letting the lie roll when it’s easy. I’m trying to thread the needle between feeling guilty and managing the problem as efficiently as I can. Sometimes I let her talk about how her “daddy left her everything” and confirm no, her sister got nothing, but some stuff she’ll start down a mental path that needs nipped in the bud.
I really need a good “we can’t stay there because X” strategy.
The sad reality is, there may be no easy answer. Every case is different, and it makes it harder if she’s arguing with you every time the subject comes up.
You just need to keep reminding yourself that, as hard as it may be to make some decisions she won’t like, you’re trying to do what’s best for her. That’s a big part of the reason people have suggested getting professionals involved as soon as you can, because they’ve seen it all already, and can help talk you down when you feel bad about making a hard choice.
You can go to the Aging Life Care Association’s site and search for a certified care manager there - there’s an orange button on the top right - click that and you can filter by location. The one I used is certified by this organization. You may also be able to get a referral to a lawyer through the care manager.
My sister just kept saying “hopefully soon” or “whenever the doctor says it’s OK.” But my BIL couldn’t follow complex conversations or remember that he’d asked 5 minutes ago. And DON’T feel guilty for lying. Don’t even think of it as lying; think of it as sparing her.
You may not need an eldercare attorney in your immediate area, as you could fax/email stuff to him/her and have zoom appointments. You definitely need one in your state, though, and I think there are eldercare attorneys in every state. romansperson’s site looks like a good resource. Have you tried your county’s Council on Aging? Your local senior center may also have some info.
The entire situation (well, both situations) are definitely terrible. What do you think the doctor could have done differently? IANAD but I do know lots of things can be missed absent the person having them complaining about them or those things becoming quite visible. Also, isn’t the neurologist the right person to be taking care of your mom’s issue?
Again, the situation is terrible. It really does sound like you want to help your mom, but what you’ve described indicates to non-doctor me that just isn’t possible. I echo what other posters said about checking with your area’s elder-care council.
No - don’t transfer the house to your name, for several reasons:
as you have POA etc., this might be seen as misuse of parental assets if there is any oversight of such in your state (a friend who became her mother’s legal guardian had to file reports on EVERYTHING with the state).
If your mother goes into a Medicaid-funded facility, such a transfer would trigger that lookback clause that others have mentioned - even if the parents had transferred it to
your before your father’s death (unless of course they did so 5+ years back). I’m not exactly sure how the whole spend-down of assets works with property like a house - maybe you have to sell the house and give that to the state or something. It’s part of the reason we did not put my in-laws on the deed to the condo we bought for them to live in (I assume we’d be forced to sell it, in this scenario, and we purchased it entirely with OUR funds).
Ignoring the whole nursing home cost thing (let’s pretend the parents had enough money socked away to pay for all of that for as long as necessary), if the house is transferred to you, your tax basis is the value of the house when THEY bought it. So if you sold it, you could be in for a hefty capital gains scenario.
It might well be easier, paperwork-wise, to sell the place if it’s in your name, but if you’re the executor etc. that shouldn’t be a big deal.
Does your employer have any kind of employee assistance program? If so, call them - they might help with finding resources.
I’m very sorry for your loss and all that you’re going through. You’ve gotten lots of good advice in this thread so I’ll focus on the specific question above.
My husband had a lot of trouble with this at first, for example when his mother kept saying that he was her father or her brother. He tried to reason with her, reminding her that he looked like her father or brother, but he was her son and she should remember the difference. She’d agree and then 5 minutes later she’d be back to saying he was her brother. He would get really frustrated trying to talk her out of it and getting her to face the truth.
Then a friend gave him an article about not engaging, distracting and redirecting. I can’t find the article since it was several years ago, but the main idea was that insisting on the truth was counterproductive since they’re no longer mentally capable of recognizing it. Not to lie to them or gaslight, but instead just deflect. Both my husband and his mom were much less agitated when he just changed the subject and they talked about something harmless like the sunshine or weather or ice cream.
Thanks so much for the “7 things” article, gkster. This is very valuable information for anyone who needs to have a conversation with anyone who is losing memory etc. It’s so good to have specific things to do/not do.
And to the OP, best wishes to you. It will get easier. I’m glad you came to the Dope as you are getting good advice and support here. Dopers are great people!
I really think you should contact the moderator about changing the title: " Dad up and died and left me to deal with my mom’s Alzheimer’s" implies that it’s your Dad’s fault that he died–but of course he had no choice in the matter.
And note considering Social Security: your Dad’s death may result in an increase in your Mom’s monthly benefit–so follow through on this.
Having been through this several times with different family members…my first suggestion (mandate?) to you would be to take care of YOU also.
You will be physically, emotionally and mentally drained. Accept any and all help that is offered. You cannot do this alone. Even if the offer to sit and stay with your mom for 2 hours, while you relax, sleep, get a haircut, go for a walk.
Get a notebook to document things you have done, with dates. Things you need to do, people to talk to, with contact info. You will be surprised how everything just jumbles into itself as the time flies.
The good people here have provided a lot of excellent information.
Here is a website that I found helpful, I would suggest you sign up for their email newletter. Lots of practical tips and tricks. Tips and Help for Caregivers - DailyCaring
I wish you well. It will get easier once you have everything in place and settled. Getting there is the hard part. Oh, & someone above mentioned a geriatric psychiatrist…please do that.
I used to work at an Adult Day Care center. Many of our clients had different stages of Alzheimer’s. They lived with their children’s families but could not be left home alone during the day.
I took some time “off” mentally last night to gather my thoughts and a plan of action.
I’m doing a few things that are mega proactive and I’m excited:
She was approved by insurance to stay in the skilled care facility in the metro area back when we thought my dad was going to be discharged. This request was made by her doctor and approved by her insurance. The approval window is only 2 days, so it would all have to be re-done, but we can do that (I’ve put a call in with the intake manager already. She can talk to the doctor and get the approval).
RIGHT NOW my plan would be to soft-pedal her into this. “Mom I just have to drop you off here for a few hours while I go finish a project” (this is true: I have a work project dangling out there and I HAVE TO FINISH IT for my own mental well-being–I can’t have that lingering out there). So I hope she’ll enjoy the social interaction and we can kind of ease into it. This way she’ll have established care in that facility IF we need to put her in for a week or so around the wedding.
BTW the wedding cannot be postponed, just…logistically.
I’m re-configuring my house so she can have a bit more autonomy here. She has “her own bedroom” sorta, but I’m going to buy her a table today and set her up a craft room. So far she’s been about 3 feet from where I sit with my computer working all day, she’s having great fun putting all the photos back in the photo album, organizing them, etc…we just live most of our life in this one living room, so having her a different room away where we can have a mental “bubble” to decompress in will make the immediate future more tenable.
This is not going to work long term, but for right now she has to stay here and this will give us more peace.
I’m going to take some time to answer things now:
I’ve noticed in my mom’s case, nothing really sticks except negative emotionally impactful things. Like my adopted sister showing up and making a scene at the ER–she brought that up for days after the event. When my dad would bark at her, she would cry and say he didn’t love her. That’s when I decided I needed to break up our hospital visits into big sweet hellos and goodbyes. The more we got a day, the better. She’d spend all evening saying she was on cloud nine from the big kiss she got. So emotional things make stronger memories, for better or worse.
Having just gone through my dad’s medical crisis, and acting as his Healthcare PoA, feet-on-the-ground situation was the doctors and nurses all deferred to me. I signed the DNR in the hall the day before he passed. When we filled out all the PoA paperwork, both of them were confused about the language of the Advance Directive, but we had a standing agreement he didn’t want tubes and life support, nothing artificially keeping him alive.
…and if there was Right to Die in place my mom would choose that option right now. She keeps telling me so. Bottom line is having HC PoA trumps the Advance Directive on the ground, in the moment.
After I establish some respite care at this facility she was already approved for, I’m going to find a certified care manager and a lawyer (I hope they can help with both).
SS has been called, notified of dad’s passing, widow’s benefits, etc. It looks like all that is squared away but the agent did say I need to call back to follow up and make sure it’s all correct.
When things started turning south for my dad, I started to worry about any family members breaking into their house and getting at anything.
My dad kept all the important documents (will, PoA, etc) in a pair of fireboxes which I have had in my possession since a few days before he died. We also have the deeds, her SS card, birth certificate, and the recently signed affidavit all in a safe deposit box in the bank.
She can keep her DL. She can’t get to the car keys.
Her phone is becoming a problem…but for now she can keep that, too.
We do keep the house locked down at night–alarm on the back door and the front screen locks in a funky way you have to know how to do it to unlock it. But she’s not much of a wanderer except for when she gets mad, but I’m hoping there’s not going to be much more of that.
See above. Her approval window was only 2 days, but I am talking to the same intake manager about getting another approval for respite care. Going to soft roll her into it. I think it will go well.
This particular facility does NOT have an ALZ ward, only Memory Care. I believe the difference is MC has a single monitored exit, and ALZ is fully locked down. Regardless, as an immediate solution for respite care, it seems like a good place to start.
Keys are hidden. She has her own set of house keys but she hasn’t put them in her pocket since before dad died. She will every once in a while ask me where they are, they are just on the counter where she put them.
Documents: Luckily after my dad retired he completely took over all the financial stuff, the mail, paperworks, etc. His recliner is in the middle of a bit of a nest of envelopes. He kept JUST EVERYTHING so it’s an overwhelming amount of documents to go through, and most of it’s solicitation from charities, AARP stuff, and EJ financial statements. She has no interest in such stuff so there’s not much of a risk of her tossing anything important–nonetheless I will keep on top of it.
I am in charge of administering her pills (she takes Aricept in the morning and a cholesterol pill at night, plus hydroxyzine before bed). Every time she says “I don’t take pills at night” so I have to show her the bottles where it says “morning” and “evening” on each.
I am starting to take consideration of what she has access to and what not. Example: we’re going to start keeping my fiancee’s car keys in a different place.
“The doctor says we can’t” has been a pretty good buttoner, but she bristles at the “you can’t” part, so I would like a solution that isn’t so…commanding. “All the utilities were in his name. We can’t do much until we transfer everything” worked pretty well last night.
In a pinch, I do have IN WRITING where her neurologist said she would benefit from being in MC even before her full assessment next month.
I’d still like to soft-roll her into MC rather than a stark, awful “first day of camp” drop off situation. I really do want a solution she doesn’t hate. I’m trying my best.
I’ve had to take both of them to dr.'s appointments and the dude just sucks. He’s old and should have retired a long time ago. He’s dismissive of way too many things and either waves you away to the ER or tells you to treat it yourself at home. My mom had impacted wax in her ear so bad she was deaf in one ear. And dad died and she’s nagging me about hr ear. I had to take her to her doctor TWICE and DEMAND they at least try to irrigate it the second time, and they did, and it was a whole to-do that I had to go twice and demand.
It was my dad’s UROLOGIST who found he was bleeding out from an ulcer that my dad’s doctor was unaware of but kept ordering transfusions because he was “just low on blood.” That’s the bottom line for me: there’s been about 5 or 6 kind of major issues my dad has had that we’ve only found in the ER or the heart doctor or some other specialist. My dad had TWO LITERS of fluid on his lungs and his doctor had him on allergy medication for it. Give me a break. For my dad to die in the oncology ward of an unknown malignancy…no one ever said cancer, no one even hinted at it. All things considered, he’s not a good doctor for my mom.
I have never in my life had my stress hormones pumping this hard for this long. I am aging like a president over this (literally seeing patches of hair going white). People keep saying I need to take care of myself, but it’s not all that easy.
I’m trying to, or at least trying to try to…
I’m not getting time to grieve. And I’m way fucking sad. I mean SAD. He did NOT die how I thought he would, and it does NOT feel how I was prepared to feel. And I only have these weird, quiet times after I put her to bed for the night where I feel like it’s ok to stop being strong for her and let myself feel sad. It’s going to be a long process. But there’s just…NO JOY. Joy in NOTHING. I can’t find it. So I don’t even know how to take care of myself.
Ok, I DO have some funky old cafeteria trays and I HAVE started making my mom compartmentalized little meals and THAT is actually a little fun…
And I think the OP has enough things to deal with without being expected to deal with that one.
That’s hard to hear. My mother did that too.
I wish there had been a legal option, so that we could have discussed that while her mind was still working well for most things. She had at least been utterly clear, for years, about the DNR.
Watch out for financial scammers. She’s very likely lost, or will lose, her ability to judge such things.
“The doctor says not yet”, maybe?
If you can do some respite care at the same place, that might help by making it familiar to her. Unfamiliar places can be frightening to those in dementia.
Can you find a geriatrician?
It is hard. It is really, really hard; and dealing simultanously with the death and with the sudden realization of your mother’s state and the responsibility for her makes it harder.
– It’s really common for grief not to feel the way you thought it would. And it may come and go for some time with different types of unexpected grief. This is normal.
This is good advice. With Dad, when he’d ramble on about inventions he was coming up with, jobs he was planning on taking, trips, plans, etc. I’d just let him talk. Mom and my brother would try to make him understand that he was retired, that the inventions wouldn’t work, that they couldn’t go on a trip when Mom was in the hospital. It took some doing to convince them just to let it go.
We had to outright lie to dad about capping off the fireplace. It’s gas operated and he would light fires in June. We told him that it had been capped for the summer and just never got around to “uncapping” it that winter. we were afraid he’d burn the place down or turn on the gas without lighting the fireplace in the middle of the night.
I talked to the people at A Place for Mom and they were a big help. I kept copies of both parents ss cards, medicare cards, supplemental insurance cards, and POAs on locked files on my phone. (My mom had a stroke and fell and broke her pelvis right before Christmas 2018 and that’s when we discovered Dad had Alzheimer’s and mom had been hiding it).
You’re never going to come to a decision that makes everyone happy so don’t worry about the ones who think you’re doing it wrong. Dad would take instructions from nurses and attendants. Me, he yelled at and threatened on more than one occasion to punch the shit out of me. “Real Dad” would have NEVER EVER said that to me. That was so very hard to deal with.
The main thing about ALZ is no one tells you what to do next. What happens? What medications do they prescribe. I discovered that by writing a statement with dates of onset, things I’d noticed, the fact that Dad was sundowning and imagining burglars and spies, that he’d get mad if he was corrected about something, that he’d wander away from home… I wrote all that out and would email it to new doctor’s offices and bring a paper copy with me. Mom couldn’t say things in front Dad at the doctors. She’d get too frazzled. So I laid it all out on paper. I got him on anti-depressants and that definitely helped.
Yep. When my father was in palliative care for his cancer a few years back, I made the decision that I didn’t want his last few months to just be one long argument, so I just passed on having these kinds of discussions. My sister never quite seemed to get that, though, and ended up stressing out a lot more than me over things that really just didn’t matter at that point.
Like, okay, he was already dying of cancer, so does it really matter if he’s still smoking a few cigarettes a day? Let it go.