Hi, new to this group - and disease

Belle713

 My mother has recently been diagnosed with Dementia/Alzheimer’s. I have no experience with this but every day is bringing on new challenges. She has caregivers in her home but doesn’t think she needs them. She gave up the car keys voluntarily a few months ago after several instances getting lost in nearby, familiar places but now feels ready to drive again, against doctor’s orders (she’s not). I have two older brothers who are unwilling or unable to help so I feel very alone in this. Watching my mom become this new version of herself is heartbreaking. My mom has always been a true southern lady. Manners and etiquette are everything. Now she skips appointments with doctors, friends and most important, her hair stylist (if you know, you know lol). She doesn’t even call and cancel, just skips it. She’s started lying, which she’s always abhorred. I’m crying as I write this. 

Hoping to get tips and support and offer the same to others. Thanks for having me.

SusanB-dil

Hi Belle713 - Welcome to 'here', but sorry for the reason.  at least here, you are not alone.

First things - is DPOA (durable power of attorney) and all HIPAA consents in place?  That is important.

Good for you for not allowing the car-keys back.  You can always blame that one on the doctor. We took MIL off the road after we found out she got lost.  Turns out it had been more than once, and later she admitted getting to an intersection and she forgot what to do.  Yes, done driving. Also insurance purposes - if anything were to happen, they may not pay.

Your mom doesn't think she needs assistance - she may have anosognosia.  It is not 'denial', but the firm belief that nothing is wrong. You may need to start using 'fiblets' to get her to take medicine, accept the caregivers, and a myriad of other issues.  "They are here because they need the experience"  "They are helping due to insurance issues"... whatever works.

Don't try to reason with her... it doesn't work, and only leads to frustration for all.

Besides some Teepa Snow videos, here is a link that may help understand the various stages: https://www.alzheimers.net/stages-of-alzheimers-disease

Belle713

Thanks Susan Yes, after my mom handed over the car keys, she admitted this happened several other times. At the time, she said this was the scariest experience she’s ever felt and would never go through it again. Obviously, she’s forgotten and her memory is much worse now than a few months ago so… Regarding POA and MPOA, that’s already in place. My out of town brother is in charge. Problem is, he’s out of town lol… I have another brother in town but he has walked away from everyone in the family for his own personal reasons (addiction). It’s a mess but if anyone understands, it’s all of you. 

Question: do you know of a zoom support group? My mom‘s neurologist provided me a local one but unfortunately it coincides with a standing meeting I have every week so I’ve been looking for a different one. Thanks in advance

SusanB-dil

I don't know outside groups, but others might.

We did run into the driving issue again, but not recently, so it has been a little while.  Anyone she asks, we tell them to say it was myself or DH, and we in turn blame it on the doc (and insurance).  "sorry, your doc said 'no'."  "sorry, your insurance company said 'no'."  Some posts have said that it also helps to remove the vehicle.  "it is being worked on and the part is on back-order" (edit to add: could even say for a recall issue) repeat as needed.

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mommyandme (m&m)

Belle713,

Sorry you’re finding yourself here but thanks for sharing.  My out of state brother and I are both my moms POAs. He’s numero uno and does all the financial stuff. I do the caregiving stuff, my choice.  We work well together so far.  In other words, you’re not alone.  Is it possible to have you both as POA, for when he’s unavailable or unwilling?  Before she’s deemed incompetent to sign? 

The twists and turns and hills and valleys of this journey are difficult.  I’m needing more time away from mom (for my own well-being) but the service raised their prices so instead of adding help I’m needing to subtract.  Kind of distressing.  

This whole adventure is distressing.  I hate this for all of us.  Please keep coming back.

Belle713

SusanB-dil wrote:

“sorry, your doc said 'no'."  "sorry, your insurance company said 'no'."  

I definitely use her doctors as an excuse for everything. Learning the tricks. Thanks! 

Belle713

Thanks, we are very lucky to have caregivers and hopefully my mom won’t fire them. She has adjusted the hours, reducing them several times, but I have my brother’s support on that one - that daytime care is required. They double as drivers so it’s a necessity and at least we’re on the same page with that

Belle713

Thanks so much! I will definitely keep coming back. My brother has financial and medical power of attorney but I make most of the day-to-day decisions including setting up and training all the caregivers and coordinating with her doctors etc. It takes a village! I just wish I had more emotional support from him but it’s not in the cards right now. Luckily, I do have several friends going through this so we’ve been able to lean on each other. But I love having an online resource as well. This is a terrible club we’re all members of, but I look forward to reading the wonderful advice in this group and hope to offer support when I can.

Iris L.

Belle, the best support group you can have is this online message board support group.  The members here are very knowledgeable about ALL aspects of dementia caregiving.  Read a lot and post questions.  Read about having an out of town POA--it's not a good idea.  Read about sibling caregivers--usually, one, yhe girl, gets all the responsibility, often with no authority to institute needed changes.  

Also read about anosognosia.  Your mom is not aware that she has dementia.  She may admit to a bad memory, but she does not realize the full meaning of having dementia.  So don't try to correct her, but learn the work-arounds that the members use.  Your goal is to keep her calm and unflustered.  Best wishes.

Iris L.

Soul Mate

Teepa Snow does zoom meetings occasionally  She also has a number of very good videos on youtube.  

Growing up she helped with relatives who had dementia.  She has a degree in occupational therapy and a lot of experience in working with dementia.

M1

Hi Belle and welcome.  Not trying to be Debbie Downer off the bat--but it's a big red flag to me if you have the responsibility (typical of most families for it to fall to the daughter) but not the authority.  I'd read those POA documents pretty carefully and think hard about either:  seeing if your brother will appoint you in his stead; or:  making him take the responsibility, even if it means relocating your mother to be closer to him.   The problem with the latter is that it might put your mother at risk if you really think he won't  do the job.  Very hard to sit on your hands sometimes and not be in a co-dependent situation where you're enabling him to keep walking away from what he's agreed to do.

HollyBerry

MMy brother and I did pretty well sharing responsibility for our mom's finances and care, but we also had joint accounts and shared credit cards and systems in place that worked for all of us before we needed to use them.

Re your mom missing appointments and "lying" about it -- consider that she actually believes she is telling the truth.  You probably need to set up systems to remind her and make it easy for her to do the thing you want/she needs. If she has a hair appointment,  have her caregiver ready to remind her and make sure she gets there.  When my mom was in AL, I had a dry erase board in her room with one or two things she needed to remember, like appointments or when I was coming over next. It helped everyone know what was on her schedule and saved a million phone calls.

harshedbuzz

M1 wrote:

Hi Belle and welcome.  Not trying to be Debbie Downer off the bat--but it's a big red flag to me if you have the responsibility (typical of most families for it to fall to the daughter) but not the authority.  I'd read those POA documents pretty carefully and think hard about either:  seeing if your brother will appoint you in his stead; or:  making him take the responsibility, even if it means relocating your mother to be closer to him.   The problem with the latter is that it might put your mother at risk if you really think he won't  do the job.  Very hard to sit on your hands sometimes and not be in a co-dependent situation where you're enabling him to keep walking away from what he's agreed to do.

100% this.

I would not accept the custodial and caregiving responsibility for a parent if I did not also have control of their medical decisions and financial life. Full stop.

Too often the named POA-- especially if at a distance and blissfully unaware of the day-to-day challenges and emotional cost of that care-- sees their mission as preserving the PWD's assets to be inherited rather than easing the work of caregiving. 

IMO, the POA needs to be geographically nearby if possible. As the disease progresses, there will be emergent situations which require boots-on-the-ground. I would move mom nearer the POA now so she can settle in there while she still can. 

Would your mom be willing to sign a new POA naming you? Would your brother stand back and allow you to obtain guardianship if mom is no longer deemed competent? 

Your local ALZ branch can refer you to support groups in your area that meet IRL and on zoom. If you live near a major medical center, they may have a memory center that offers "Memory Cafe" type meetings for caregivers and PWD. Sometimes these are split into a support meeting for the CGs and an activity in another room for the PWD.

This is the best online support group-- great people and 24/7 availability. But there are benefits to an IRL meeting locally even if it is just monthly. As the disease progresses, you may find yourself in need of very specific services and these will be the folks who have that information. 

When I was looking for a MCF for dad, this group advised me on what to look for and ask about. My local people-- understanding what a challenge dad could be behaviorally-- steered me away from the sketchy places, the places that cherry-picked and suggested I tour the place where he ended up. They advised others on things like a podiatrist who "got" dementia, restaurants that were quiet and where they were treated respectfully, on hairdressers who would come to the house, etc.

HB

Fairyland

One thing who’s site has done is make me appreciate the advantages of being the only child. It’s very lonely though.

mommyandme (m&m)

Fairyland… there are pros and cons to absolutely everything!

notjolly

Where do you turn when there are road blocks at every turn. My brother lived 400 miles from me. we were never close. He visited me the most after my sister died. I was all he had left. He broke his leg one night getting out of bed, he slept on the floor under a table! He is a hoarder and fell over his junk. I went down to see about him and fell into this mess. Didn't know about the condition that he was living in. In the hospital I quickly learned he had something wrong with his mental state. His doctor said he should  not be living alone anymore so I move him to live with me. So far he has accused me of everything in the book. I also learned he has prostate cancer stage 4 and has about 2 years to live. That's just a doctors guess. I'm 74 he is 83 and at this point the state he has put me in he probably will out live me.

Lety Perkins

Hello Belle, I am exactly in the same situation. It is very difficult to see someone that always was very well kept, smart, independent and strong become a different person. The worst thing is they don't realize that there is something wrong. I do not have help either, my mom lives with me, and it will break my heart to move her to a facility, but I fear that that if I leave the house, she will turn on the stove, fall or something happening to her. Is your mom still living independent or with you? I do not know if I have the heart to take her somewhere away from me. 

Lety Perkins

Thank you all, this has helped me too. I just join today, and I feel better knowing I have a place to find answers.

I need help searching for care options. I thought everyone with dementia did not know they were sick. I often find myself also denying my mom has Alzheimer's, but I feel now is time to find the recourses I need instead of pretending I can handle everything.