New to Forum - Where do I go from here?? So frustrating..

NatA77

Short version - My mom is borderline dementia and lives alone.  We've done all the appointments, been given the tools of what to do to slow progression.  My mom is depressed, covid has completely shut off all activities and trips to keep her active.  She refuses to take any drugs which neuro has suggested and has refused vaccine.  It is my brother and I.  We've taken the necessary steps to get her finances in order.  A POA is in place but we haven't pulled that card on her yet. We just finally set up her bills for auto bill pay to limit the stress...however she continues to hang on to the prior statements because she thinks she needs them.  There are piles of documents in all of her rooms even though we are taking care of them.  These are all trigger points for her and I get calls every other day of her crying because she is so stressed out.  I would be too if you walked into her house and seen the piles of papers and post it notes of reminders.  I've gotten her a 31 day pill organizer that she continuely messess with no matter how many times I set it up for her.  She only has 1 daily thryroid pill and 1 weekly vitamin D.  Our relationship is like oil and water.  My mom has always been a difficult person to get along with.  Very negative and critical and always been a control freak.  There is a string attached to everything.  She wants us to help her but but she won't let it go.  There are many little things that we (bro and I) can do to make life easier for her so she can hang on to her independance alittle while longer but she refuses to let us make those changes.  It's like the movie ground hog day and we are living the same thing every week and can't get past it.  Does anybody have any suggestions?  I've had to limit my time there because she is such a frustrating person...my brother the same.  She makes our blood boil when it comes to her reasons.  Have any of you come across this and what have you done to move past this point?

      

M1

Hi Nat and welcome to the forum.  Nat, I must say that I suspect she has more than "borderline" dementia.  If she can't use a pill box (my partner is stage 4 and lost that ability about a year ago), she probably doesn't need to be living alone, period.  Maybe one of the reasons you're all so frustrated is that the current system is not working for anybody.  It sounds like it is high time to use the POA and see what other living arrangements can be made.  If there's no family member who can move in with her, can you afford live-in help?  Do you need to move her to assisted living or memory care?  Do you need to talk to an elder care attorny about Medicaid qualification for long-term care?  Those are the things that come to mind.  

I know it's all harder with the LO with dementia is difficult to get along with, but you're going to need to move past that fairly quickly to get her the help she needs, it sounds like.  Good luck--I know none of this is easy.  But you sound like you're angry with her, when she almost certainly can't help it, and I suspect your frustration level might decrease if you get a handle on how sick she really is and give up your expectations that she can do more than she is doing.  it's not that she won't cooperate, she can't.

Cynbar

Nat, it really sounds like her current living arrangement isn't working for her anymore. I know you want her to maintain her independence, but if she is calling you crying every other day it is just stressing her out. I also think she has more than borderline dementia, her memory and executive functioning skills are not working well. It's common on these boards for posters to believe their relatives aren't as far into dementia as they seem to the rest of us. She may have a difficult personality but this is more than that ---- her brain isn't working right, she can't process things correctly. She needs more help or an alternate living situation. Your first step might be hiring someone a couple days a week to help her organize, etc. It's common for people with dementia to think they're fine and don't need help, you'll get suggestions here re how to talk her into that. If she continues to spiral, it's time to look into assisted living, ideally with memory care available when she needs it. Remember that dementia is a progressive disease, she will get worse. You'll also get suggestions here for how to get her to assisted living. You and your brother don't have to take care of her, there are professionals who will do that and adapt to her being difficult. Don't expect her to agree, she can't. At this point you have to be the one making the plans, and ignore her reasons why it can't be done.

star26

I can understand your frustration. "Infuriating" was definitely a word my sister and I used to describe our Dad at this stage when he obviously needed help but was disagreeable to it. FYI: When my Dad had a "mild cognitive impairment/borderline dementia" diagnosis (which we later learned was a gross understatement) he lost 95% of his liquid assets to scammers, ended up in the hospital because of a medication overdose, and set the kitchen on fire while living alone. My sister and I lived out of state and it was a while before we had POA and the ability to do anything. If you have the power to take care of her now, start using it without asking her permission.  I cleaned up the house and filled trash bags when my Dad wasn't looking. Car keys and medication were completely removed from his access. Caregivers were hired. I took over all bill paying and financial management (including cleaning up the piles of paper and keeping everything locked up). (I also moved in with him, but it doesn't sound like this would work for you or your brother.) I did everything surreptitiously or with fibs about what I was really doing or the reason.  In the beginning, I had to deal with some major anger outbursts from him, harsh words, demands and refusals, etc. but that was before I got good at lying and blaming other people. When I stopped trying to cajole and convince him about necessary changes and did what needed to be done in the least disruptive way possible, things got better. And even if he was still a beast to be around, at least he was safe and the house wasn't going to burn down. And believe it or not, way down the road, he actually became appreciative and said things like "Good thing you're here, I don't know what I'd do without you" which blew my mind. If you and your brother run out of ideas of how to help her with specific issues, you can probably get lots of tips here.

Terryo

I hate to tell you this, but it sounds like she needs daily care.  If for nothing else, but to make sure that she takes her meds.

Quilting brings calm

You will find that some doctors are reluctant to say dementia and will instead say mild cognitive impairment... even when it’s obviously more than that. Others will automatically say dementia and not look for other causes.  My Mom was said to have delirium and then dementia even though she’d gone from 0-60 in a few weeks.  Turned out to be urosepsis.  However after treatment she wasn’t back to normal.  Her score on the 30 question test was questionable.  After a few months she was then diagnosed with MCI. It appears to be morphed into mild dementia at this time ( almost a year after the MCI diagnosis).   

I suggest you check into assisted living, with medication management.  If you get her in now, she may be able to adapt and stay there longer than otherwise.  

BassetHoundAnn

Hi, Nat, and welcome to the forum. I could have written your message about my mom a year ago. Cynbar is absolutely correct in everything she has said. If she can't use the pill organizer and she's calling you crying because she's so stressed out you need to move her into a more protective environment. My mom's PCP diagnosed "mild typical age-related brain changes" even though my mom was insisting the year was 1996 and Roosevelt was the president. Friends and neighbors who were checking on her were also adamant that she was fine living alone, but after I spent a few weeks staying with her it was obvious she could not continue to live by herself. Not only could she no longer handle her affairs, she was not safe. And she was only going to get worse. One of the things I've learned from this forum is that a child shouldn't feel guilty for stepping up, taking the reigns, taking over the finances, and moving a parent to a more protective environment, whether it's assisted living or memory care. It's what must be done. Your mom probably won't agree to the move, but you just have to do it. It's going to be tough at first. The parent is going to protest, throw tantrums, maybe even call the police. But this is what you must do to keep them safe. You'll find a lot of great advice and stories here that will help you formulate a plan and get through this ordeal. Read as many messages as you can. There's a lot of wisdom here. Good luck! It's a long, hard journey.

MimiMinder

Hi there and welcome to the forum. One idea that might make things less frustrating for you with respect to pill management would be a weekly, rather than a monthly, system. Thirty one days is a lot for someone with memory issues to manage.

When my mother's facility no longer allowed visitors, I had to get creative with her meds since she refused to let the staff take over that function. I usually filled a week's worth of pills at a time. Our solution - four different weekly pill containers and a note rubber banded to each one - "Start on Sunday, Feb 7" or "Start on Sunday, Feb 14". It still took some management on my end chatting on the phone or video chat to make sure she put the containers in the 'right' spot so they could be found at the start of the new week. 

The only other thing I would suggest is for you and your brother to try and treat your mother with as much love and compassion as you possibly can (which I know is so hard when your buttons are getting pushed and your very last nerve is frayed!!). Getting angry and frustrated will only send your blood pressure and stress levels high. You need to be as calm and collected as possible because this is a long, long journey. 

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NatA77

In response to all that replied.  Thank you for your suggestions and observations from what I have provided.  It is good to hear an outside perspective based on the what I have typed.  There are so many more examples I could give but it really comes down to her quality of life and the care that she really does need as some of you have pointed out.  I have shared your thoughts on our situation with my brother and we will be working towards alot of your suggestions and moving forward with the POA in the very near future.  It is just so hard to see your LO go thru this.....somebody who has always been such a strong force of nature in your life growing up and now "we" have to be the ones to take control and make those very hard decisions for her whether she agrees to it or not.  I'm really struggling with that part. But I do appreciate all that you've said.... And I am so glad I found this forum!

star26

Yes, it's very hard. When I could, I did things in such a way that my Dad could retain his dignity and feeling that he was in charge. I told him I was like his employee because he had worked hard his whole life and now deserved to relax and not have to worry about stuff like bills. And this is the story he eventually adopted as well when talking with friends. He was a fan of Roy Orbison who has a song called "Working for the Man" that we would listen to sometimes. Sometimes when my Dad would ask me what I was up to, I'd say "I'm working for the man!" and he'd say "Thatta girl!".  It's not just sad and depressing because our parent is losing something but it's also sad because we are losing something too. We can't go to our strong mother/father anymore for help/advice/support etc or to feel like our parent will look out for us no matter what. Even though I was an adult, I still had that feeling about my Dad. It's a real loss. You may be grieving as well as all the other emotions.