user70 Posted April 2021
Anyone want to share their rollercoaster ride today?
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Today I needed to exchange a mattress. They arrived early and I was in the shower. When the delivery men brought the new mattress they asked mom what to do with the other one..she told them they can take it downstairs to the garbage room and throw it out! (We live in an apt. building.) She knew it was to be exchanged, so this is dementia. I had to call the guys back, fortunately I got them on the phone.. and tell them it is a return..do not throw it away! He was livid and said "it's a return??..are you sure?! I have to call the store and make sure!" She is making mine and the whole world's head spin!!
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I’ve been overseeing care for my husbands aunt for years and I have a bedroom at her home. Once there was a death in the family. She still used the phone in those days and would tell relatives coming from out of town to come to her home, plenty of room.
When I got there that evening I found someone’s bags on my bed. Awkward to say the least.
I’ve had one of her nephews drop off his mother (same age as aunt) for long visits, had a couple move in temporarily, gave a neighbor permission to dig up a whole section of her back garden. You just never know what to expect. She was always happy to have guests but of course had forgotten that she didn’t do anything anymore but flip channels. so guess who got the honors.
And these are people who really should have known better.
I can see how your mattress guys could be confused.
You hate to announce to the world that they have dementia, you think the world will notice but still today, in the moment, aunt can seem very aware and normal.
As Roseanne Roseannadanna used to say “Its always something”..
Also, I've been trying to rebuild her identity, extremely hard when you don't proof of who you are and you don't remember much of anything. However, I was able to get some assistance for her and have acquired, medicare, medicaid pending, SSI and SSA. The next step was getting her some kind of assisted living/nursing care facility. Just when I thought we were gaining traction, I come to find out that here in VA if she doesn't meet a certain criteria, she would not qualify for a nursing care facility.
This whole situation was supposed to be temporary and now I feel like I'm going to be her primary caretaker. We feel like prisoners in our own home. I'm exhausted, back on meds, and just done with everything. It's just me and my husband, we do not have any other family to assist us. I feel terrible but I am not the person for this job, I'm at my capacity and I feel like I'm stuck. My husband was not happy with her coming to stay with us in the first but like me, thinking it would be temporary, he agreed. I don't have the heart to tell him about my conversation.
I'm sorry for the long rant and whine session, but I had nowhere to turn. Thank you for letting say what's on my mind.
Caregivers started this week, 4 hours, mornings, to oversee her morning and noon meds, plus prepare the lunch food I have provided. Light housekeeping.
Every morning she has let herself into our house, woken us all loudly to protest the caregiver’s imminent arrival, accusing me of arranging care without telling her, etc. (we’re night people, not 9-5ers, so we’re exhausted) We smooth the waters, she returns to her house with the caregiver, she has a great day, is thrilled with the help... for a few hours... and then we’re back to raging accusations.
Found the caregiver’s log and is going to blow the lid off fraud In the industry! Expose them all! They’re all thieves! Claims they did nothing they recorded. We watched and checked. They did it all. I am tired of being accused of lying and gaslighting.
We have work to do. This leaves us too tired to focus.
So? Her solution is simple. If I just get rid of them, shut my lying mouth and go back to doing everything for her and make myself always available, we won’t have any more trouble. And she informed me today that, if I think she was raging this morning, I ain’t seen nothing yet.
People can alternate between here and the whine thread.
I hope things improve for you soon, Anabanana.
Take care.
Mom's Sr Center will open next week and the Srs can go if they are fully vaccinated. Mother got both her shots (reluctantly--I don't know why) but she is qualified to go.
She has stated through this whole year of the lockdown that she hoped to live long enough to go back to the center just once...(yep, pretty dramatic)...
She has collected about 60+ puzzles and as many books to take to the center, where they make a big fuss about their 'donors' which is great--but she hasn't let one book or puzzle go in a year--waiting for the glorious day she could return.
Well--last week I was up there delivering a wedding shower invite....and I asked her if she was happy to be going back to the Center and she said "Oh, I don't know, everything is so much work and I am so tired". OK, that's fine. Then she said "R won't let me drive with W anymore and I don't have a way to the Center anyway". She lives 1/4 mile away from this bldg. I live 5 minutes away from her. I said "I can take you, no problem!", "R can run you over and take you home. Either "L" or "E" or "EM" can do so, they all have flexible schedules." Nope, she wants to go with W. Ok, mom, I can call you a taxi, or arrange for an Uber, or get the Sr bus to pick you up LAST and drop you off FIRST. Nope, she doesn't like the bus driver. I said "B" can run you up and pick you up. (My SIL) "No, she's mean" (she's not). "OK, how about I ask "D", your friend who lives 5 houses away from me, she'll pick you up?" "No, she never stops talking".
8--count em--8 people who are more than willing to run her to the Center and go pick her up 2 hrs later so she can play BINGO. She kiboshed every single one.
I sat there for a long time. Then said "Mom, you really do not want to go back. And you are making up excuses for not wanting to go back. That's fine, but please be honest with me. I am really putting myself out there for you. Go, don't go, I don't CARE, but do NOT make phoney excuses for not wanting to return. It's OK. You're 91 and last year was hard and very depressing. And don't complain to me that you never go anywhere. You have been allowed back in the gorcery store for 2 months and you CHOOSE to sit in the car and complain to all and sundry that YB won't 'let you out'. The truth is, you don't WANT to get out."
She got really quiet and I knew I had hit a nerve. I'd like to see her go back for that 2 hour BINGO session b/c it's ALL SHE HAS. But I'll be darned if I'll sit here and accept a dozen excuses for why she is being 'kept' from doing anything she wants b/c of other people.
She ended with saying she was barely able to get through a day, she was so tired. I told her I was sorry she felt that way and was out the door.
I'm such a problem fixer it's ridiculous. Sometimes I actually help, like with my kids but with mom--why do I keep trying to fix what can't be fixed?
In our house (we also have 3 kids) we refer to it as “I’m hungry but you can’t make me eat!” syndrome.
My Mom's latest is yet another bout with diarrhea (if it's C.Diff it'll be her 3rd time, that I'm aware of). She is in independent living, and they refuse to clean her room, justified because they only do light housekeeping. She can't move fast enough to make it in time. I'm sure it's totally gross, and frankly, I feel so lucky that I can make a phone call to the home health agency and they will clean it up (for a price, of course). She will have the home health aides bring up her meals (at $5 a pop) but balks at having them help her clean her room because it's "too expensive". I told her to call the doc and make an appointment, but she just says "I'm tired I'm going to bed." So either I wait for her to be carted away in an ambulance due to dehydration, assuming the management finds her in time, or I have to call the doc myself. Which I did. They make house calls, but the doc won't be there till Monday. My mother thanks me profusely, tells me how I'm such a wonderful daughter, and then goes back to bed. Tomorrow I will be back to being the "bad mommy". I tell her I learned from the best.
In my defense, I work full time, often 10-12 hour days, and on the weekend when necessary. I am an only child, and she has always lived her life through me. She has told me repeatedly that if it weren't for me she would have taken her own life when my father divorced her. (Yes, lucky me.) She won't do anything for herself (like doc appts, etc.) and complains that she never gets to go anywhere. I take her out to lunch and to shopping and to the nail salon or to get a haircut or whatever errands she needs on the weekends, whichever day she prefers. The day I don't take her out I either do work-work or housework. And she sends me crap she wants me to buy for her on Amazon All. The. Time. She is a hoarder; I try so hard to just not buy her anything. Sometimes it's legit, other times…. I'm sure a $40 skin cream is not going to magically cure 85-year-old crepey skin. My cousin calls it the "bring me / buy me / gimme / get me syndrome". On the other hand, the provided TP is the worst and I can appreciate the good stuff so I'm willing to splurge on that. Mom says I have to go with her to doc appts because I have to pay. I strictly control her spending otherwise she would be completely broke and living on the streets. Any doc who wants to get paid can call me and I will give them a credit card number over the phone. If she would only go. And didn't doctors used to have at least SOME weekend hours when I was a kid?
Anyway, thanks. Whew. I feel better now, LOL!! Seriously, I'm getting ready to move her into AL, which has been a pain without being able to tour during Covid. She thinks I owe it to her since she took care of me when I was a baby. I think she needs to step it down a notch, since if I didn't exist she wouldn't either. Yep, turned that right back at her.
At the new hospital, they were going to do it Monday AM...Monday PM...Tuesday AM...Wednesday AM...finally, Thursday PM. She's long suffering, and very sweeet (especially doped up with morphine) but SERIOUSLY?!?!?!?
You'll have to pray and learn to laugh at the situation and have lots of patience.
If we live long enough, most of us will get dementia.
Try to put yourself in their shoes, it's not fun.
Don't leave anything important for them to be in charge..
And don't keep saying to them Don't You Remember or I've told you a million times, ect.
It's a disease and they can't help it.
They need to feel safe and loved and know they can depend on you.
Prayers
If you cannot handle this, consider getting her Medicaid ready and anticipate nursing home placement. See an eldercare attorney for estate planning.
"Just when I thought we were gaining traction, I come to find out that here in VA if she doesn't meet a certain criteria, she would not qualify for a nursing care facility."
This is, sadly, the case in most states. Never had to resort to Medicaid for my mother, thankfully, but I do know that each state has their own rules and income limits. All too often people make comments on this forum that the LO needs to be put in a NH. It isn't that simple. Not only do NHs have specific criteria (needing specialized nursing care, not just dementia), but I believe Medicaid also has rules about this. This results in many being left with no alternatives. AL/MC is too expensive, family can't do the care or are now burnt out.
I would inquire about Medicaid waivers - some states will provide some limited in home care. Any time someone else can care for her in your home gives you a break!
I would change the locks. You might have to turn off your phone ring too. I would also inform her that if she can't accept in home care, facility is next. With dementia, you'd have to repeat this often. Maybe start leaving brochures for facilities where she'd see them!
* When you expect a delivery, write a note or call the store/manager and tell them to speak to ONLY you.
* Make your life easier. Go to TEEPA SNOW's website and sign up for her webinars and free trainings. Get her books. She is the country's leading expert on dementia.
* Be kind to yourself. It was only a mattress and you were able to catch this one in time! This is not an easy situation - dealing with dementia. You are learning - we all are as situations arise.
* Give yourself 'time outs.' Insure your mom is okay and take 5-10 minute or longer breaks / meditation(s). You'll need them. Maintaining your equanimity - and mind - is essential to your well being. Exercise.
* Enjoy your new mattress!