Dad up and died and left me to deal with my mom's Alzheimer's. I need so much advice

In My Humble Opinion
61

Looks like this is working out pretty well right now with her living with you. That won’t last, but it might last for a while, and it buys you time to sort out what’s going to happen when it stops working. And as you say it gives you some good time together.

Can you get, and get your mother to wear, one of the tracking devices now used to find people if they wander? Around here the county Office for the Aging is encouraging them and I think can help with supplying. I know you say she’s not wandering now but there might be an unexpected first time.

It’s great that she’s so into helping with the wedding. Those will be good memories to hang on to. And it’s often important for people to still feel useful; so it’s very good there also.

If she starts repeatedly re-organizing photo album pages she’s already done, or starts misidentifying the people in them – just roll with it. Before anyone realized my mother was sliding into dementia (even her doctors didn’t see it for some time, and kept denying it even after I realized something was wrong), I was trying to get a large box of old family photos labeled, and she was into it and still able to remember a lot of them right – and then, not realizing that she really couldn’t remember, I started pressuring her to identify approximate dates and arguing about one she’d obviously gotten the identification wrong on. She got upset and refused to do anything more with the photos at all; which was a shame, and one of the things I regret. Hard as it may seem it’s really useful to have the diagnosis relatively early, so that you understand what’s going on and can try to work around it.

I’m also glad about the dog; that presence can also be really useful. My mother had days when the only thing that could make her smile was the dog; or a particular one of the cats. They helped me a good deal, too.

And I do wish I could send you the extra time to sleep! Hope you did get some rest – and that reading this isn’t taking too much of your time. I’ll shut up again now.

62

Here she is from right now. She’s sitting next to my mom at her crafting table. That’s my mom barely visible behind the giant flowers.

Here she is a tuckered pumpkin.

She has a routine. She comes out in her peejees, piddles with different projects for a while, we do morning pills, I make her eat a little breakfast, then she usually wants to do her make up and hair. I love that she has a routine, I’m letting her do what she wants. But otherwise I agree! I’m dug in on the computer getting wedding/her done, and I’m not getting dressed :slight_smile:

I agree, and it’s based on nearly universally needing to get “something” from there each time we visit. And I don’t mind the clothes thing–it’s just we’re nearing exhausting wearable clothing lol. We’ve brought everything she wants. I had to buy a clothing rack to make her a new make-shift closet. But she likes the setup. She makes the bed every morning.

Days like today make things easy. I needed a day like today. No telling what tonight will bring but for today, I am able to concentrate and get some work done.

63

See my post above. Days like today are very easy. No, none of this is long-term tenable, but I am considering what our options will be moving forward. I’m right this minute shopping on eldercare lawyers. I promised my fiancée I would connect with a lawyer before the weekend.

So I got her a new phone in April (which I need to find a much simpler mode to keep her out of trouble) and I installed a family circle type GPS tracking thing. Granted, it’s dependent on her having her phone on her person, but I will further look into other options. I’m also installing a new, better doorbell camera and will install the old one in the back (not necessary but might as well).

TOTALLY. Now, there’s a slight issue with her mislabeling the babies and small kids (she has a hard time remembering she has another son and tends to think all the young boys are me) but otherwise I’m not doing much oversight. She will come ask me who someone is, like my brother’s second wife who wasn’t around long, so I have taken to labeling those photos on the back, just scooped up a pile and wrote who there were on the back. That’s been helpful to keep her from marking them wrong but has also helped her to recognize the same people in other photos (my brother’s second wife is of note–she keeps asking “well how many times HAS [son] been married?!”) Which is funny. Then she started keeping 2nd wife pics in a separate pile. “I’m not sure if she needs to be in here.” LOL.

Dog should be certified therapy dog at this point. She LOVES my mom, which is so cute because my mom is NOT a dog person, never has had pets at all. But she and little dog are so mutually infatuated with each other…my mom is obsessed. “I’m going to save up my money and get a little dog just like this.”

I doubt it will be long before we just start calling it “her little dog” just to give her more of a sense of inclusion.

Dunno. Ok back to work. Thanks for the break!

64

Very glad you’re having an easy day! May there be many more of those (and indeed there might well be.)

65

Just as a point of emphasis how pitifully alone I am in all this:

I asked my brother a few days ago if he could watch mom for a few hours Sunday so I can attend my wedding shower. He didn’t respond for a few days, then just texted “I can’t help.” Didn’t even mix in an “I’m sorry.”

Sigh.

66

I hate to say it, but that’s often how things go in situations like this.

67

Yeah, it’s pretty common to have all or almost all the work land on one of the kids, even when there are several siblings.

Sometimes people have good reason not to pitch in; sometimes they don’t, but just aren’t going to do it anyway, at least not if they can land it on somebody else.

– Does your mother have any good friends in the area who are in better shape than she is, and who might be able to fill in on Sunday? (It does seem that someone familiar to her might go over better than trying to hire a stranger.)

68

I got mad and blew up on him a few days before dad passed, back when I had to take mom on as a full-time job. I said "everyone’s fussing over trying to get at dad (COVID restrictions) and NO ONE gives a SHIT about mom. She’s just going to be my problem forever.

He told me he would help. He told me just to ask what I needed and he would. When he saw her last he called me and said some “woe is me” stuff about how he lost mom twice. He lost her when he estranged himself from the family for like 10 years, and now he’s lost her again because she’ll never be the same. Oh no. (eyeroll emoji)

This is a thing he does to divorce himself from bad situations–“Dad’s already gone. We had a good visit [month prior]” then put off coming to the hospital, even after we went into comfort care (he finally did come the next morning as the ending drug on a little long). I just get this impression he’s happy to be passive and uninvolved.

I dunno. I’m just disappointed.

I feel a depression coming on. Finding it hard to get my mind to shut off at night, and then I don’t want to get up in the mornings. I didn’t even want to open my laptop this morning. I I can find the motivation eventually, but it’s like rolling a bolder.

The sadness isn’t normal. I know this feeling. It’s depression.

…and also sadness. And anxiety.

I contacted my doctor. Not sure if we can throw medicine on it or what. I can’t afford a depression. I have too much to do.

How do I make her go to bed at night? She’s so hard to pull off her projects. She’s gotta be sleepy from the meds, but she keeps going “few more minutes…”

Today has been otherwise great. Just…depressing.

69

I never did figure that one out about my mother; I used to just eventually go to bed myself, leaving her still awake. But she’d be in her nightgown (which she was most of the time anyway) and on her bed, and didn’t need further help from me to turn out the light and lie down; and it reads like your mother’s working in another room, and may need your help to actually get into bed.

Am glad you contacted your doctor about the depression. Hope they can help. And sorry about the brother.

70

There may be a service in your area that is like baby-sitting for elders. Something like this maybe?

They could provide respite care so that you can go do things without worrying about your mom, like your shower.

{{{ hugs }}}

71

Just wanted to say hang in there. I appreciate all the resources mentioned in this thread – have a feeling I’ll need them before too long.

72

Your mom seems to be well behaved and not prone to outbursts. Is there any way mom can attend the shower? Maybe someone who is already attending the shower can be charged with watching over her and being her guardian while there? I haven’t been to a bridal shower in many, many years so I don’t know what they are like today. (for example, way back, men did not attend showers)

73

hey all,

I talked to an eldercare lawyer who specializes in Medicaid enrollment today. I have a LOT of good info. It was amazing!

I’m just going to put this all out there, I hope that’s ok (legally).

As I see it, we have two paths forward, and having winnowed things down so much, I feel like a ton of junk on my list of “to dos” just became moot. That’s a great feeling, the narrowing of options.

But first, what is NOT an option:

She cannot live alone in her old house. She cannot be alone and it is not tenable for her to have in-home care to allow her to stay there.

That house is 40 minutes away from me. In a crisis, I would be very far away. No one thinks it’s a good idea for her to be there, so I’ve removed this from the list of options.

That said, our options are:

  1. Burn down the finances and get her into a Memory Care Facility ASAP. There will be no legacy, there will be no estate, we will spend all the money putting my mom in a place she doesn’t exactly want to be and wait for her brain to deteriorate to death.

Nothing is more defeating and depressing than this option.

Option 2, which I admit is pretty hair-brained:

Sell her house as quickly as possible. Figure out the annuity (the entire value is a few 100k and altho we only spoke briefly, our financial planner said as a beneficiary account there’s no penalty to draw the entire amount. However all that works out, we’d have a chunk of money to parlay into a new home, where my mom could more easily live with us. Maybe a home with a mother-in-law plan, or even a travel trailer on our property (this worked for a few years with my grandma who had ALZ).

The lawyer said for Medicaid purposes, this would be a GREAT idea. She said after establishing all of us living there together and establishing myself as caregiver for at least 2 years, we could at that point transfer ownership into my name, so that the house no longer counted against her spend-down.

There is a bit of tricky maneuvering to make sure we do it on the up and up, but she said it’s a good idea if I am willing to take on that responsibility.

My thoughts are: I’m doing really well with her and she’s really settling into a groove.

I think I can leave her alone more than I have been. I think with a private assessment by a certified care manager, we can determine exactly what’s safe and not.

I can hire a sitter to keep her on track when I’m gone. The lawyer and I agree she’s mostly bad with Sundowning and more ok during the day.

So logistically, we can sell her house sooner than we could probably find the right house/property to buy. Plus this crazy real estate bubble.

So I’m just spitballin’ here–we have enough monthly income–especially if we sell their house–to find her a garage apartment in our neighborhood. We’d be minutes away, I could see her most evenings to keep her on the rails, and I could hire sitters to keep her company when I needed to do stuff.

We also have some amazing neighbors who want to help out. So that could buy us some time to find a new home for all of us plus give my new wife some space to be at peace.

Now that I’ve completely come to peace in my mind about how one way or the next we HAVE to sell that house, and what a monster pill it will be for my mom to swallow…this is a very viable path forward.

I have a fiancée to get on board and I will have my mom assessed medically to see if my idea is viable, but I feel good that I’ve got some options.

Especially since the lawyer told me buying a second, better home to keep her for a few years and put off memory care will financially position us better when that time comes.

I love the idea of delaying facility living for at least a few years. My mom is tentatively on-board, which is great.

74

I recently heard about something called a “granny pod” or Accessory Dwelling Unit - basically a small house that can be dropped/built rapidly into a backyard with enough room for one person.

You might need some negotiation with your fiancee, as having your mother literally in your backyard would be a significant change. Also, zoning laws in your area might be a little too restrictive.

But it’s a concept I hadn’t heard of before recently and I think it sounds like a good idea for someone who is in between independent living and needed full-time 24 hour hands-on care.

Good luck with all you’re doing! I know things are hard for you right now but we are wishing you well.

75

Definitely check with your zoning, both about Accessory Dwelling Units and about making your house two-family. One or both may or may not be legal in your area; or there may be a work-around in which you can make your house effectively two-family without quite triggering the zoning definition – maybe her own bedroom and sitting room and bath, but not full cooking equipment – which may not be safe for her anyway, even if it’s just a matter of forgetting to turn off the stove.

Also of course definitely talk with your fiancée.

Bear in mind also that while “minutes away” may seem like a huge improvement over the location of her current house, it’s still nothing like “right down the hall” in terms of being able to do a rapid check without getting dressed for the weather and finding car keys and wallet and possibly going out in a storm – plus which, you won’t be able to hear her from “minutes away” unless she’s together enough to use the phone. If you can’t afford to hire anyone to be there all night, I’d strongly recommend the mother-in-law apartment. You’ll sleep a lot better.

And I’d also talk to the doctors after she’s been properly medically assessed. They won’t be able to give guarantees, but they may be able to give you some idea how long there’s a reasonable likelihood this will work – how fast her condition is likely to deteriorate.

If you are going ahead with this version, I’d try to get her in the semipermanent quarters as soon as possible, both while she’s still relatively able to adapt to the idea, and so that they’ll become as familiar as possible as familiarity may extend the time she can stay in them.

76

Not much to report, just an update. Things are still going pretty well for the most part. This evening was my shower, and we decided to roll the dice and leave her alone. She requested we try it.

I took some precautions, such as making sure her phone was on her person, and locked the back gate and the front weirdo lock so there was no way she could leave.

I called a half hour in and she thought I was my brother, said some weird things that made me feel like she didn’t know my or my fiancée’s name…kept referring to us as the “people she’s staying with,” no big deal but when I said “how are you doing” she said “not too good, I don’t want to be here,” which freaked me out, but the more I asked her questions, the more I was feeling like 1. by calling her, she was preturbed from her little craft-bubble, and 2. her aversion is more based on feeling like an imposition on me and just generally feeling displaced from home, not some general unhappiness.

I couldn’t shake the bad feeling so after an hour at the event, I ran back home to check on her (the event was only a few blocks from my house). She was a little out of her routine–she felt alone so she put on some PJs because “I didn’t know if anyone was coming back or not” and she had started to piddle with other tasks than the photo album, which she’s heavily dug into (more on that in a second).

She was ok, and acted a little gruff that I felt like I needed to check on her at all, so I went back. I did what I needed to do at the shower (games and what-not) and it was enough fun. I made my mom a plate to-go and came home. I was gone 2 hours with a 1 hour check-in. She was just fine when I got home…

I think maybe I shouldn’t have called. I think she’s not used to getting calls from me and it doesn’t dawn on her who I am. I also think she gets agitated when you ask her questions, because it’s taxing to come up with answers. So, all is well in the end, I could easily go back or have stayed longer but I prefer to test things incrementally. Wifey-to-be stayed and can party her heart out. It’s all good.

Haven’t heard back from brother.

I’m still ruminating on what the next steps will be. For sure an analysis of where she is both medically but probably first just a care manager’s assessment.

Not sure if I can commit to the move-in-to-a-new-house thing. It’s a giant decision. We all require more counseling on that front.

I’m vacillating on if it’s a good idea to take her back to her house every few days or keep her away more often than not. The longer she stays with me, the more comfortable she seems to become.

The more we go to her home, the more she kvetches about wanting to be there. I hate having to make these decisions.

Been thinking about their car. It doesn’t need to exist anymore. Feels weird to start thinking about that with so much else going on, but their insurance on it is pretty high and it really is just another problem that eventually needs to be solved.

Part of me has this thought that there’s no need to keep my vehicle and/or hers–we could combine them into a better fitting vehicle for everyone involved since I have to cart her around everywhere.

I’ve been repeatedly explaining the situation to her a few times a day. I have a tendency in normal conversation to find new ways to explain myself to avoid redundancy, but I’m finding the route for her is repetition. She’s starting to get it. She’s starting to understand we have to sell that house. Not always, but she did randomly ask “well how much do you think it’s worth?”

The photo organization project: I got all the photos of my dad back from the scanner for the funeral video, and she’s having a great time sifting through them and organizing them how she wants. The only thing is, she will do it for 10 hours straight without breaks unless I make her take them. Is that ok? I don’t guess she’s aware enough to get mentally fatigued, but I don’t know enough about any of this.

It’s like she’s too involved to remember how long she’s been doing it. It’s almost like OCD. She’s meticulous and super particular. She also hordes and nests, just little things she can’t part with. Her pockets are full of Kleenex and whatever she thinks she needs. It’s cute but I really do wonder if there’s not some OCD stuff going on.

77

I’ll leave you with a few touching and funny stories:

The first one is sweet. I was cleaning up a little and found a sheet of paper she was working on a few days before the funeral. this is what it said:

                        Grief                                 Sept 8th

“Sorry I have been unavailable. I have been staying with my loving son who has been my pillar.”

:sob:

Second one is a joke:

I’m getting pretty loosy goosy about what I’m willing to say, since her memory is so easy to deal with. It’s resulted in some hearty laughs.

Last night we went to get a special dinner because why not? (TO GO. I’m still not eating in restaurants). On the way home we were sitting at a red light and I got “Hey [fiancée]–my mom told me today she is ready to start dating again!”

After a pregnant pause, she punched the back of the car seat, and the three of us erupted with laughter. It was so funny that late last night me and my gal brought it up and laughed til we cried. It was fun. There’s a lot of fun in the middle of all this awful.

78

Given the prices that used cars are fetching right now, if their car is in decent shape at all, you may do pretty well on selling it.

I’m glad to hear that things are going OK right now, and that you’ve been able to find some guidance on what is and isn’t feasible going forward.

79

I’m glad you’ve met with an attorney, and it sounds like you’ve got some good plans / potential plans in place. Major, major kudos to you for stepping in here (not that it sounded like you had a lot of choice, but some people STILL would not have done it, or not as conscientiously).

One thing that came to mind on the mention of using the house sale to help fund purchase of a different residence, one that is more accommodating to letting your mother age in place with you. And similarly with the car. Did the attorney address how this might fly in terms of your siblings and their expectation of inheritance? I forget the relationship - one full (or half) sibling and one step? or something like that?

Anyway - if you do what you’re considering re housing / car, then a few years down the line when your mother passes away (or must finally go into a facility), there you will be, with that house / car, that was partially paid for with the parents’ assets, but which you own.

Now, a reasonable sibling would be able to weigh that against all the care you provided for Mom, and the fact that this same care in an institution would have wiped out her assets even sooner, and say “it’s all good, thanks for looking after Mom!!!”.

But make sure you’ve discussed this with the lawyer, and perhaps with the siblings, or I could foresee lawsuits and accusations of misusing the parents’ assets.

Oh - and assuming that’s all good, make sure the place you move to can handle the physical aspects of aging in place: a bathroom that is (or can be made) elder-friendly, like with grab bars / step-in tub / lipless shower, all one level (or can handle a chairlift), etc. - That will be helpful even while Mom is physically OK, and later when she gets more frail. We’re in our 60s and are thinking of this for ourselves (our house is not handicapped-friendly, as we found a few years ago when my husband was on crutches).

80

Mama_Zappa covered the inheritance issue regarding the sale of the house and buying something that ultimately benefits you.

I don’t know how fast or slow your mother’s decline has been. If it’s been slow, then she may very well be around for several more years. If it’s been fast, then be aware that her condition may change rapidly, and the situation tomorrow may be quite different than it is today. It’s good to make plans, but you have to be ready to change them just as fast as you may need to.

And ultimately, keep in mind that the option that you find most defeating and depressing might one day be the only option left. So as depressing as it may be, start looking into memory care centers now, and note the difference between the level of care and options between a private pay place and a Medicaid pay place. Start looking now, and find out what the admittance procedures are for them. If that time comes when you have to go down this path, you will be better off knowing what your options are.