Sorry to hear that today was hard. I don’t know if this helps, but it’s OK not to like or love your family. They are terrible. As someone else said, cherish the people in your life that actually do love and support you, and let the others go.
I hope tomorrow is a better day.
Second this. We care {{{o}}}.
Hey gang, I’m mostly ok.
The stress and…uh…anger that call begging me to steal a car and me forcefully shutting it down triggered a wicked SUNCT cluster storm that has taken a few days to recover from. I also had a pretty difficult tooth extraction I had been putting off because the root curved into my jawbone. He had to removed part of the bone, so you can imagine how good that feels. So physically, I’ve been on the outs a bit.
We met with the neuro-psych and it went more poorly than I had anticipated. But…it’s the only time mom’s been away from me and she was very concerned when she found out I needed to leave her there by herself for some hours.
She looks like a kid on the first day of kindergarten. “Wait…don’t leave me…please don’t forget me…”
That broke my heart. “Please don’t forget me.”
She also suffers from a form of performance anxiety where she struggles to start a task for fear of messing up. Just having her sign her name to the Thank You cards took a lot of coaching. She just is so afraid of messing up.
But the doctor explained some of the basis of that, and she also told me she confirmed with my mom her wishes for me to be in control and said she would verify that to anyone who needs to hear it. She also assured me that she would attest to any question of “capacity” at this point as being a continuation of their will and documents as they signed 9 years ago. I’m REALLY thankful my dad did stuff right because I would be underwater without gills.
I met w dad’s old financial planner and he told me he was terrified on my behalf before because he thought I’d have to seek a guardianship, but now that he knows the ducks are in a row things should be easier.
Finally, mom’s lawyer calmed me down by going over a few worse-case scenarios: Brother would have to sue for guardianship, which is the last thing he wants–actual responsibility–but let’s pretend her pays up to fight this out in court. No judge is going to let that happen.
APS agent assured me she will stand with me in court should it go to that but that she has every feeling her closing this case will be the end of it. She also said she reveiwed a private video I sent her of my mom being in a room alone, me coming in and asking if I could video her answering some questions. She did amazing, said she had no idea what I was going to ask, hadn’t been coached because she has no clue…and we talked about the nature of everyone’s relationships and her feelings.
APS agent said she reviewed it and on a personal level she will do what she needs to protect mom.
So, all of this is great–very good news–I just wish I could let myself relax a bit more.
I’m like days away from this wedding and I still have lot to figure out and I’m ready to start feeling happy again.
Luckily I see my neurologist in a few days so I can get this SUNCT thing worked out.
Thank you for the update – I hope that you feel better, and I hope that you and your fiancee are able to enjoy your wedding.
It sounds like you’ve gotten your and your mother’s ducks in a row really well, and that, while your family may choose to continue to be dicks, they’re unlikely to have any strong legal basis for challenging things.
I’ve shut off all direct contact to the point they are able to call to leave a message and we’ll get back to them. This was advised over further legal escalation on my part. I hate how reasonable and probably best that advice really is…I want to go on the offense but it’s better to just keep playing defense for now.
I hope they will melt into the woodwork once APS shuts this down. Apparently they missed dad’s will in my document dump so until just a bit ago the agent was considering this a he-said-he-said thing but now that I’ve clarified those documents, Agent is singing me sweet, sweet melodies.
Mom’s assessment resulted in the first thing the doctor told me is there’s no way she can live alone. I had been anxiously awaiting this formality…which is going to be a tough pill for her to swallow. Imagine not knowing anything is wrong and not being able to remember you can’t remember and me having to break her heart over and over. I’m going to have to figure this out very delicately. The good news is she loves being around us and is having so much fun that I hope we can turn her “uncertain future” into a solid plan we all agree upon.
She hasn’t been properly medicated (no duh!) and they want to add in an anti-anxiety/anti-depressant that works well in these cases. So now I just await her final report.
While everybody’s different: she probably does know something is wrong, and she very likely remembers that she can’t remember, if not precisely what she can’t remember. She may try to hide this from others, you included, because she’s trying to keep what independence she has, and to deny even to herself as much as possible what she’s losing.
I’m relieved that you’re OK(ish) and got more clarification and assurances. You know, the old saying, “The best offense is a good defense” is really true in your case. By not lashing out at the problematic family members, you’re probably driving them crazy. They get no emotional satisfaction out of your silence and have no opportunity to manipulate you or your mom. Sucks to be them, and it couldn’t happen to more deserving people.
Your mother’s Alzheimer’s reminds me so much of my brother-in-law’s. He, too, was emotionally very dependent on someone (my sister). As the world made less and less sense to him, she became his navigator, interpreter, and security blanket. Much as she loved him, it and the worsening sundowning wore her out. Like my sister, you’re a very responsible and empathetic person. Make sure you take care of yourself as well as you do your mom.
Anxiety is very common in dementia patients. You’re already doing a great job of helping your mom stay calm. Medication can be a huge help. I’m glad the neurologist recommended it.
Now that you’ve met with all those experts, I hope you can get past the headaches and enjoy the days leading up to the wedding.
The SUNCT sounds awful. I hope the neurologist is able with that.
It sounds like you are doing all the right things.
Have you decided on a plan for your mom during your wedding?
We have an issue with both her being kept safe but more important HAPPY and also I have to have the peace of mind she is in an environment where she will be attended to no matter what happens.
I am going to talk to her doctors and check into other resources I have at my fingertips.
I thought about my neighbor who adores my mom staying for those 4 nights but I need my piece of mind.
I guess we’ll have to do a walk-through in a few facilities and make a decision.
…thanks for asking, this is one of the last major issues I have to resolve between now and the wedding. I’ve been wracking my brain…
You can ask the social worker for some resources on both what to do with your mom during those 4 days and for long-term care help. You must, must be sure to have another person around who can look after her and keep her company while you and your new spouse get some time away. This is for your own mental health. You can look into something called Angel Care to get a few hours break or a bit of help so that regular tasks that need doing get attention too, not just for an out-to-dinner break.
This is serious stuff. Alzheimer’s doesn’t just change the person who gets it; it can change caretakers too. My mom tried to be my dad’s sole caretaker but doing so caused her to have a serious personality change and depression. She would yell at him out of frustration and she was never a yelling person. It took her a couple of years to get back to herself.
All that said, it sounds like you have most stuff well in hand now. Look to your wedding and smile. And enjoy the dance with your mom.
I somehow managed to avoid my computer from Thursday afternoon until Saturday Morning. WOW that was nice.
I came across this story last night and watched it with the ol ball 'n chain after mom went to bed (did NOT want to her to see it). It strangely parallels some of what I’m feeling, although this is full on criminal conspiracy all the way up the bureaucratic ladder.
Anyway I feel like I learned some advice from it. 1, cameras just EVERYWHERE. Yes. 2, someone(s) we know and trust who can be on call for nights off, dates, errands, whatever…just a trusted hired hand.
But then there’s some defensive stuff–they said the trusted sister put all the vultures under “no trespass order” or “no trespass notice”–something like that. Is that a thing–a form you send to specific people?
I also read that in my state a “No Trespassing” sign posted at a reasonable point of entry serves as “notice to all”. We are heading to check on the house in a bit and I was considering stopping off to buy some signs to post around–but then I wonder if a bunch of sudden “no trespassing” signs might invite unwanted attention.
Last night some woman approached the front door barefoot and stumble drunk trying to get in (didn’t ring the bell just grabbed the latch and started hammering it down and shoving on the door). After it wouldn’t budge, she stumbled off on down the way…
Mom’s already getting paranoid about the house and her beloved stuff within. I don’t think I should tell her about the woman…I don’t know how to handle all this “truth” and how much of it to tell–
I’m fighting a battle in my brain because out-right lying out of convenience is a plum right there ripe for the picking. Example: I love the idea of a no trespass form sent to specific people. I think that would help bring my mom back from this paranoid state over the physical safety of her things. Now, I could follow through and do it and then have it in my pocket every time she’s worried BOOM we did THIS and she’ll be all “OH well that’s GOOD! That makes me feel BETTER!” because I know exactly how this goes. But I also could NOT DO ANYTHING and just tell her I did, the same way–and she’d get the same dopamine hit she needs to relax and feel better but none of it would be true.
I don’t want to get all semantical about Kurt Vonnegut’s concept of “foma” and other harmless truths…I just don’t want to lie to my mom. There’s been some things like last night where she caught the fringe of something that would have upset her and when she pressed for more details I said “mom not tonight. I cannot risk you getting upset and there’s nothing to be upset about so for those reasons and others I think we should talk about something more fun right now” and that was that. I don’t have to just LIE outright, at least not often.
This leads to another moral (and maybe even legal) quandary: exactly what all do I let her keep in her wallet? I found this site which has some great advice for navigating all kinds of ALZ care-giving issues…
That’s exactly what I was planning on doing: I scanned in all of mom’s IDs and insurance cards…my plan was to make duplicates for her and keep the real. But she’s not had much of an issue losing her wallet so far so I thought she should keep her real ID. But SHOULD she? Should she have a fake one with no ID theft information on it…? And I keep the real one in my wallet?
She likes having walking around money. She gets a small check from I don’t know what and she always wants to cash it every month. The other day she lost all her cash (about $100). I was like HOW? Why did you take it out of your money clip?!
When we got home I found she was “pressing” the bills under a marble coaster so they folded more flat. 
I want her to have autonomy but I just keep finding things not to do. NO ACCESS TO PILLS. She just takes stuff to take stuff. First I left her vitamins then I realized she can take too much and that’s not good. Then I thought ok Tylenol is ok…but she stuffs some loose in her pockets on top of her squirreled pocket Kleenex, which means she drops them on the ground by accident all over the house. Ok well that’s DOG POISON so no more access to Tylenol.
Anyway hot stock tip: Kleenex or Puffs, because my mom…
In my experienced-nurse-of-many opinion, you’re saying too many phrases and putting many potentially confusing and triggering concepts out there. Trim that down to:
….mom, not today. Let’s talk about something more fun right now…”. Keep everything very simple and unembroidered by social niceties every time, every day.
Have that be your stock response always and ask your new bride to use it as well. With dementias, simple and unembellished without potential sand traps is the ticket.
Today sucked. She really dug in her heels about how she can handle staying alone.
I have no idea how to handle this part of things. I just defer…it’s not working.
It’s working, it isn’t tidy, but it’s working. You will have to keep deferring, over and over again, day after day for months and years.
She doesn’t have the insight to agree that she can’t stay alone. Part of the definition of dementia. If she has a glimmer of that insight, she wouldn’t remember it the next time that insight is called for.
Defer, over and over, in short declarative statements.
Presentation is everything. I know you are totally against lying to you mom. Try presenting it as company for her while you are away.
Ex. It would “help me a lot if I knew you had company to (watch TV, Eat with, go for a walk with…whatever works here) while I am away. Then I can relax knowing you are not lonely, and I can have a good time.”
Or any other scenario you thing would work. But it has to be that SHE is helping YOU. She does not want to give up her independence, and this is understandable. She also does not want to be a burden on you.
If she is “helping you out” she is not being a burden.
I wish you well.
Ask her to help a friend look after your place while you are on your honeymoon.
Taking this one issue at a time…
I would not send specific “No Trespassing” forms to the Vultures. It’ll just tick them off, and they may read it as a challenge. Avoid hassles when possible.
I’d let her have some money to keep in her wallet, though maybe not the full $100. As for ID, how often does she need it? How upset would she be if she only had duplicates? I’d try to convince her it’s safer for her to have duplicates and keep the real ID at home, but you’ll know best.
No access to pills is a sound decision. How do you plan to secure them?
The honesty issue… Boo gave you excellent advice about keeping it short. Deferral is excellent. If that works, do that. But the reason for lying is kindness, not convenience. This will become more of an issue as the disease progresses. Case in point: My aunt kept asking where my mom was. My cousin hated lying, so she kept telling her my mom had died. My aunt would get terribly upset. To her, every time she heard this, she was getting the crushing news for the first time. My cousin finally realized truth was too cruel and started saying, “She’ll be here later.” My aunt was calmer.
Your mom isn’t there yet, but in all cases, what keeps her calmer trumps honesty.
Keep up the good work!
There are quite a few automatic pill dispensers around. We had one for my sister who would forget she took her meds, and take them again, and again, and again. I don’t remember the name of the one she had, but it came with an app for my nephews phone.
He was alerted whenever she opened the drawer (after it alarmed, and unlocked it). And also if she did not open the drawer when it alarmed.
And even when she smashed it with a hammer. 
That’s a great idea!
Uh, I probably shouldn’t ask about the hammer incident, eh?