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I am in mid-uncertainty about my mother being able to make any significant progress back to who she was before her fall. I am a single woman with two brothers. Both are married and have their own issues. Neither seem ready or able to give my mother any emotional support and very little physical support. She is a resident in a NH that is consistently short staffed and we battle small things like losing hearing aids and she lost her denture, both of which I am sure my mother did. Currently there is confusion about where she is. She keeps telling me they are in the basement or her room has changed. These last two weeks, I've been down with Covid so only able to facetime her. We just finished 6 weeks of IV antibiotics to get a Staph infection in her replaced knee down, which was brutal on her emotionally and phyiscally. I need help in coping and making some boundaries for myself. At this point I think it's a therapist. Suggestions?
(And yes I am the POA and truly sole decision maker about all things re: mom.)

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"And a therapist to talk to ... i mean is this how my mother leaves this world? it seems so unfair to see her suffering the indignity of her body not doing what she wants and that her mind follows suit?"

Oh, my, yes!

The unfairness of it all. I have started envying folks of my age (late 60s) who drop dead of heart attacks while in the midst of doing an activity they love, or who die in their sleep for no particular reason.

There 's this thing called "anticipatory grief"--it's a concept I found useful, My mom started to decline at 88 (we got her moved to a nice Independent Living place after a bit of a struggle) and then she had a stroke. Was in a NH with vascular dementia for 4 1/2 years. It was like watching a very slow car wreck. And not in a good way.

I didn't seek therapy at the time, because I think I was afraid to talk about what I was feeling; being here on this board was my place to vent, scream, rant.

Found a good therapist (we do telemed visits) after the pandemic started to take its toll on my mental health. I THOUGHT I had loads of stuff in my toolbox, but together we've uncovered lots of unhealthy coping mechanisms and have started replacing them with more adaptive ones. And my tendency to "swoop"--to think that I have to solve EVERY problem--has been revealed to be one of my unhealthier tendencies.

I wish you good luck with finding someone to talk to. It is truly a blessing.
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CoopHeath Jun 2022
I am going to ask NH to check mom for UTI and Yeast inf. She is having afternoon bursts of confusion. I speak to her thru the day and our regular CNA is with her today. At lunch she was great. she just called me to ask if she needed a coupon for the flight and she can't find her purse... I talked her down and calmed her but i think this kind of panic happened yesterday and she asked for anxiety med- which helped but also makes very tired.
Anyone here recognize this as more than just institutional confusion? How would I know if this is more advanced or more than mid stage dementia?
Hopefully with my being well I can get back to a routine of visits/card playing/movie etc and help get her on track.

Universe sent me a Therapist- in my network-telehealth-Socialworker whose background is in Pallative/Hospice/Grief- care. Maybe good for me & give me guidance for Mom or a person for Mom to speak to. Thank you to my community for letting me share. :-)
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CoopHeath, I checked the Internet for talk-therapists in my area. Eventually finding a group of therapists and calling to see if they had someone on staff who had dealt with caring for seniors, hopefully the therapist was a senior herself. She was, it was a good fit, especially since she her own Mom was in memory-care.

I went weekly, it was mainly a vent session and we would alo talk about other things going on in the world. Sometimes we just need someone to talk to when there isn't anyone else available who wants to listen.... [sigh]
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Must problems caregivers have, could be prevented if they had more objective and realistic understanding on what can be accomplished and what can not, in the process of caring for people with dementia. Most of the problems are caused by guilt and by feelings of inadequacy. Having the ilusión that "love" cures everything causes the most frustrating experience. When they realize that despite their best loving care the demented person only gets worse. The care giver blames himself/herself for not doing enough or for not loving enough. Caregivers should know from the beginning that the best caring for a demented person, won't make that person better. They should know that no matter how much they do, the dementia will continue to worsen until the patient dies. That the demented person will no always appreciate what is done by the caregivers. That instead of gratitude, the caregiver will frequently be insulted, attacked or accused of stealing. What makes the caregivers sick, is not the physical work, but the constant frustration of accomplishing nothing despite their best efforts. Caregivers need to set realistic goals and not be mislead by "experts" that preach that quality of life of demented patients will improve with "proper" care. Dementia does not allow room for good quality of life because they are disconnected from their environment, and live in their own inner world. No good intentions will penetrate their shell. Caregivers should concentrate in performing nursing care. Keeping the patient clean, assist the feeding process and help with other physiologic functions. Forget about attempting any type of therapy or counseling. It will bounce back. Leave to the doctors the task treating with medication anxiety, agitation, insomnia, paranoia, depression or any other additional mental problems.
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MicheleDL Jun 2022
I applaud your response, and I'm doing it standing up.
TChamp may still need a support group and may still feel compelled to try some little bits of magic, (I bought a water distiller and enough vitamins and ayurvedic supplements to fill a suit case), but the absolute and very valuable reality foundation you so clearly laid gives a perfect and solid understanding to build on and to help her future decisions. I hope she re-reads your response. I did.
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Good luck with this one. I've been wondering this myself or if there is anyone out there who specializes in this area of counseling. I've tried counseling for these issues myself, and the only thing that I got from them is to vent feelings but no real solutions. The objective of counselors is to give you coping tools, but you must do the work yourself. What was the point of paying money to find out that you put your own work in that you would probably have figured out for yourself anyway.

I joined a support group years ago for my disabled sister geared to her disability. I plugged into resources that were primarily for her needs. We had home health services that took care of the basics; feeding, dressing and toileting, but this did not cover the bigger scope of her continuity of care beyond what these aides could provide.
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CoopHeath Jun 2022
Oh Scampie1 I have a ton of tools in my box.. what I don't have is someone to listen to me speak honestly about my own feelings, issues, concerns and to catch me when I am playing victim or being the judge of myself.
I have looked for support groups- so far no luck. Nursing home has no offers or suggestions.. and I asked the Social workers at the hospital as well- no offers.
Will continue my search and thank you for the input! :)
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Coop, afternoon confusion is sometimes called "sundowning". What helped my mom with ALL kinds of anxiety issues was being on a regular low dose of anti anxiety meds, not "on request" or PRN.

The geriatric psychiatrist explained it to me thus: it's easier to prevent anxiety than it is to treat it once it starts. A bigger dose is needed once the panic starts, which then knocks her out.

My mom went on a pediatric dose of klonopin AM and PM with another tiny dose prn if she got wound up.

So glad you're starting with a therapist.
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Coop, you really have a lot on your plate!

I have found that a well-trained therapist understands boundary setting across the board--whether it's in a marriage, with siblings or parents.

Find yourself a well-trained psychologist or social worker with training in cognitive behavior therapy and see if s/he "clicks" with you. Good luck.
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CoopHeath Jun 2022
I am feeling very depressed about the entire situation. Lots of resentment and judgement. So I def need to put in the effort to find a person even if its not the right person to get started. If I am not ok/available then I won't be able to help anyone else.
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Basically, without a recommend from your own doctor you are down to calling and interviewing. I think you should look for private practiced certified licensed Social Workers who specialize in life transitions work. Make clear that you are a caregiver. And that you need help with that. This cognitive work about everyday decisions and living with things as they are (ie that thing with the bros won't change; needs to be let go of as though they weren't living; and you are in all likelihood correct that Mom is on a long, slow slide down that cannot be changed and must be accepted.)
I wish you great luck in finding the right person. It makes all the difference. One interview in office will let them know what you need from them, and will let you know if there is even the slightest chance they may help you. You certainly seem very clear here in what you hope for.
I sure wish the best for you and hope you'll update us.
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I was fortunate and had a therapist that specialized in caregiver issues. I was given her name by the court appointed temporary guardian. LLLOOOONNNGG story. I short, a dysfunctional family issue where I was 24/7 caregiver with two sibs who did nothing to speak of. So, ask around.
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Coop, I went back a read your posts. You are the BRILLIANT daughter who insisted on getting correct diagnoses! Well done.

You got mom away from her narcissistic, manipulative boyfriend. Quite an accomplishment!

You have two uninvolved siblings, so all the case management--Financials and medical--falls to you.

Are you still working? Getting out socially? Is it mom or the NH you are needing to set boundaries with?
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CoopHeath Jun 2022
Thanks for that Barb. I work full time +. I was being social attending hockey and trying to keep my working out up. While the IV was going I was there a lot more as I could see the toll it was taking on her-and needed to have an email chat to social worker and charge nurse about some of the unacceptable things happening in keeping my mother clean. (for all who don't know) my mom isn't mobile and requires 24/7 care currently. Even minute details of assisting brushing teeth are reminders the facility needs to hear. The boundaries are for me I think. To see where/what I can do vs not in my control. IE: My visits vs siblings.
I pay for a CNA to be there at least 4 hours a day during the week- both for companionship (my mothers greatest fear is being alone) and eyes for me. Day time is when most dr visits etc occur and rare are the calls for updates.
And a therapist to talk to ... i mean is this how my mother leaves this world? it seems so unfair to see her suffering the indignity of her body not doing what she wants and that her mind is going to follow suit? I don't know how to talk to her about it.. I've been listening to Teepa and Other experts for guidance.
Make sense?
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CoopHeath,
"Currently there is confusion about where she is- "

Have your Mother checked for a yeast infection. After 6 weeks of antibiotics
all the good bacteria that balance things out leaves her vulnerable to a proliferation of yeast growth. This can cause a change in mental status.

Of course you need someone to talk to since even yeast infections have a behavioral component that could send any caregiver off for therapy.

Taking care of the physical for your Mom can go a long way toward relieving your own concerns about your Mom's progress.

Your own health is down with Covid so call the NH or her doctor to get her treated. In the meantime, the fastest support could be all the support hotlines available to talk to a real person now, by phone. Go to the NAMI.com website. They might be able to refer you to a therapist. But get yourself well, rest up, and check-in here for more support.

Sorry you are sick-it does sound like this time has been brutal for both of you.
What has your own doctor suggested?

Go easy on yourself. You are sick physically, so resolve to give yourself a break.
Get that diagnosis for Mom and you will feel empowered. imo.
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CoopHeath Jun 2022
Hi SendHelp-
I have been supplimenting my mom with probiotics during this entire time and the ID dr gave her meds for yeast infection and we did UTI checks- came up pos and we took care of that too. She is currently on Doxy for the remainder of her life time- as supressive meds. She continues to take the probiotics, Vit D and a multi. Due to my Covid- she was restricted to her room as precaution- luckily she did not get it :-). Once I return if we continue to have the higher confusion- i will get it checked out. This feels more like institutional stress/confusion.

What I have learned in my 6-7 month crash course is that our health care isn't care at all. I've fought, argued, negotiated with each 'specialist' I've had to come in contact with regarding my mom well being. Her primary is now the resident dr. I never catch this person ever. The ID dr office cancelled our appointment the day of. The Neurologist sent us to Neurosurgeon- who basically told us that the radiologist of the MRI and our Neuro both missed the glaring issue about my mother brain in front of my mom like she wasn't there at all. Very little CARE lots of make sure the billing information is correct.
My Dr retired this year. Couldn't take the stress of Covid. So I have not seen his replacement yet. Most of them want to do Telehealth so they can bill you and not have to see you. Maybe in other states its better but Florida is pretty low ranking these days.
Sorry you pulled my string. In the past I think family dr were very involved with patients but not now, or maybe just not at the senior level.
Totally giving myself the rest needed to recover and got the Paxlovid which helped a ton.
I will check out the website and see what I can find- Thank you!
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