Anyone want to share their rollercoaster ride today?

You have learned that you cannot leave her alone to deal with these kinds of situations - in person, on the phone, and certainly not on the computer. You might need to take showers when she takes a nap.
* 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!

Imho, this would be the LAST time that I would use this particular store with this delivery service (I do understand that stores change delivery services routinely, no doubt. BUT, they arrived at a different time than what you designated and they should realize that they're speaking to an elder, your mother, IMO.

Well, I see riley2166 is back to the usual comments (below). Riley, 'these people" as you refer to them - are someone's parent, wife, husband, son, daughter. They happen to be in a home with family or friend because family/friend took them in. It's not the best situation, but these caretakers are doing the best they can.

I'm so sorry! So far today, I've been hit in the crotch with a cane and swung on!

My husband is fixated on watches. Why, I don't know; he argued with me when I tell him what time it is. Any watch he sees in any magazine or catalog, he wants. He took my FitBit because he liked to see the "Red number" ( his heart rate). He saw a watch in a catalog that got past me, and insisted I order another watch. This one talks, which is useless, because his hearing is bad. Anyway, the new watch came in, so I gave it to him to open. I left the room and when I got back, he had cut the FitBit off because he couldn't figure out how to take it off. I'm going to have to order new straps before I can resume wearing MY FitBit!

Unless one is prepared to l00% time watching and controlling dementia patients who by their behavior are robbing others of a normal life with their insane behaviors, do NOT keep these people in your home. Why would you subject yourself to that? They belong in a facility not destroying the lives of those around them with the crazy behaviors they display.

Anabanana

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!

Jane727,

"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!

Consider these the good old days. Just wait until you have to feed, bathe, change her diapers, and even induce bowel movements. Been there..done that.

If you cannot handle this, consider getting her Medicaid ready and anticipate nursing home placement. See an eldercare attorney for estate planning.

Dementia is Hell for both.

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

Well my mom is 75. My dad passed in 2019. She started drinking again in 2020. Messy mess constantly. Hospital admissions during covid. Emergency room visits. Now is narcotics and thc gummies. Swears she not taking anything. In the hospital now. Very confused w thc and bensos in urine. Her toilets overflowed and leaked in all rooms so roto rooter brought in fans and etc. zipped up wall barriers. I don’t know what to do with her when she gets home. House isn’t really livable. I had her at AL for 6 days and she brought her dog in and decided she wasn’t that old. So she broke the rules and left. Furniture back to her house. Started drinking and etc. I’m done for now and she goes to sober living or I will not take care of her! I’m falling apart as I type. We lived w her for 2 months, kicked us out during covid. She acts like a princess until she’s sick from self inflicted doings then it’s back to me and the only sibling that will do for her. The neighbors say she can’t live alone and I tell them she wants to live alone like a hippy. This isn’t easy.

Well... you sort of asked for this one letting mom be in charge of having a conversation with delivery guys. I would have cut the shower short, and dealt with them directly.

My dh has dementia but will more likely die in the next year or two from heart failure. His current issue is his cell phone. He has been an Apple user almost from day 1 of Apple phones. Now he has declared that his Apple SE 2nd gen, bought on the day they came out last year, doesn't work, every time they update they mess everything up, and they update too often. An Android phone, barely used, came into our possession. He decided he's done with Apple and was going to switch to it. We took the phone in to get a SIM card and have them do the transfer only to find out that because it is LG and LG declared they are getting out of the cell phone business, they won't activate LG on their system (except for the ones they are selling off). Of course there was an alternative, so what should have been free ended up costing us several hundred dollars. And he traded in his iPhone, so now there is no going back. In the amount of time I have been writing this, I have been called to the LR three times for help. "I can't get it back on." (Show him how to press the side button, then swipe up.) "I've got the time screen but I can't get to the log in screen." (Remind him to swipe up.) "I can't find my email app." (Remind him that our cell phone provider no longer has an app as of 4/20 and he has to go to the Chrome browser for his email. Walk him through again how to get to the Chrome browser, explain that it is a browser and he has to start typing in the provider's website, and then it will autofill with what was put in before, his email access page.) I may be the one to lose my sanity over this.

I don't see how this was your mother's fault. The store should have given the delivery team clear instructions - I'd be bloody annoyed that they gave your mother this trouble.

I have a job in another state, but come home to Florida every few months for several weeks. Mom lives with my hubby in FL. Since I’ve been here it’s a never ending list of accusations against my husband, complaints and innuendos against the neighbors and hate spewed at everyone she sees and knows. Only one person is exempt; her childhood friend who is still alive. She won’t go anywhere or do anything helpful (her working days are over she says) and spends her days blaring the tv or coming to my workspace to gossip about our neighbors or complain about someone she hasn’t seen in years. Meanwhile my younger sister is enjoying a mom-free life in her fabulous new home three states away.

YES! Stepmom is in hospital, Day 3, second time in 2 weeks. She needed outpatient surgery on her...fractured spine!?!?! She falls all the time because 'walkers are for old people'. She's 81! The hospital literally FORGOT to schedule her surgery last time she was in hospital, so they sent her home, promising to schedule it for 4 days later...except when I called them, they said, "She's already had that done." I had to argue with (get this!) 13 different offices on Monday until I got someone who said, "Oh, well, then maybe you should take her back to the hospital...or she can wait until late June when we have a space for 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?!?!?!?

Yep, with you all. It feels like you are all talking about my mother, LOL! Nice to be reminded that I'm not in the boat all by myself.

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.

Midkid58, same here. During all the wailing about not being to get to church, etc., we had a long list of drivers. Then we got the “I don’t want to be a bother.” speech. And the “You don’t know what it’s like to be my age!” speech. And the “I don’t have the energy.” speech. And all of that is fine. But then don’t come to my house every day and follow me around for hours complaining how terrible it is you never get to go.

In our house (we also have 3 kids) we refer to it as “I’m hungry but you can’t make me eat!” syndrome.

Good to have a place to dump my frustration--DH is pretty much done with hearing about it!

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?

This thread will most likely fill up quickly!

People can alternate between here and the whine thread.

I hope things improve for you soon, Anabanana.

Take care.

Mother lives next door. Been refusing help at home unless it’s me. Finally agreed to in-home care. Showtimed through the assessment. Acted thrilled at the prospect of help. My relief was enormous. I need a break as I am unable to fulfill her needs, especially her emotional needs.

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.

I have been caring for my mom since November 2020. She went missing for about 2 1/2 years. She lived in NY at the time and I live in Virginia. I had no idea where she was and what she was going through. We were not close to begin with and did not have a pleasant relationship. But I was still worried. I managed to get a cousin to bring her to me here in VA, but I had no idea what I've gotten myself into. We just learned that she has Alzheimer's at 67 years old. It doesn't seem like we are in the early stages either. The behaviors she's exhibiting point towards moderate level. This has taken a toll on my marriage, mental health, and work.

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.

Oh dear. I can relate.

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”..