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AoiUsagi Asked February 2021

Advice and your 2 cents would be appreciated. What would you do?

I've been caring for both my parents for a number of years. My Dad passed away recently and now there's just Mom. She's in her early eighties and wants to believe that she's perfectly fine and that her only issues are memory issues, which, she believes, are age related. I don't agree with her belief. I've seen the decline for a number of years and none of her symptoms are simply age related. Chief among the beliefs is that her reality is actual reality. Let me be more candid in that statement: I find myself explaining how things work to no avail. Mom has an idea in her head that people and things operate they way she thinks they should and not the way they actually do. She often misplaces things, blames something or someone for it, rarely does she take responsibility for a mistake or misplaced object. There are other signs but my biggest concern is that her neurologist also dismisses issues as age related which only enables her behavior. In my opinion, Mom would be better served by another doctor but she won't budge from the one she has. He is convinced that in the very short time that he sees her that there is nothing (beyond normal, age related issues) to be concerned about. I've tried to talk to him to relay my concerns. His office reported that neither they nor he can talk to me due to HIPAA laws. That isn't the way the law works but that is the way his office chooses to approach the interpretation. Which leaves me with zero opportunity to share any of my many years of documentation.
I've become accustomed to hearing "it isn't the person, it's the disease." But in this case, there is no diagnosed disease.
While the disease that isn't diagnosed progresses, Mom's judgement becomes more impaired and her decisions become more rash - emotion and anxiety driven. Mom's ability to care for herself is minimal. Her goal in life doesn't exist in my opinion and her activity level (in bed 24/7) is a major contributor to her collapse. Mom is exhibiting signs of paranoia and manipulative behavior and may, one day, decide she's going to "teach me a lesson" by falsely reporting without thinking about the consequences to herself by doing so. I'm basing that statement on an experience I had with Mom that could easily have become a nightmare for all of us if I hadn't taken careful steps to avert the crisis. That was an experience I never want to have to repeat in this lifetime.
I've thought and planned leaving her to deal with her issues on her own but I know that when (not if) something happened to her I would spend the rest of my life blaming myself. She has no one else. She has some relatives that are nearly her age now but I believe that if they were interested in helping, they would already have offered.
I'm asking you to wear my shoes (and Mom's too) for a moment. What would you do?

funkygrandma59 Apr 2021
Your mom obviously is suffering from some type of dementia. Does her Dr. not have a patient portal that you can access and share through that what exactly is going on with your mom? I used to have to do that with my husband's neurologist, as when he would ask my husband how he was doing, he would always say "fine." Yet after I started sharing through the patient portal ahead of my husbands appointments, everything that was really going on, his Dr. had the heads up, and could be more specific in his questions. His Dr. actually told me how much he appreciated it that I let him know what was going on, so perhaps you can try that.

Now as far as your moms care, only you can decide if you want to continue on caring for her in your home. There will probably come a time when her care is more than you can provide, so best now to start getting your ducks in row, by checking out different facilities in your area, that would be a good fit for your mom, if and when the time comes. You are at the point now where you have to not only consider what is best for mom, but you must also consider what is best for you too. I wish you well.
AoiUsagi Apr 2021
Hi Funky Grams,
I appreciate you stopping by and being so helpful.
Lately, it's become very obvious that mom has issues. Yet, mom just saw her neurologist yesterday and she didn't bother to showtime, mixed up words, couldn't finish her sentences, lost her concentration on the subjects but mom's neurologist said - let me quote him "I can tell, just by talking to you that neither Alzheimer's or dimentia are at play here."
He upped her zoloft dose and is sending PT to the house. I don't hold out hope that PT will pick up on her issues. They haven't in the past. Maybe they don't know what to look for or maybe they're not paying attention or maybe they just don't care.
Mom might have a patient portal but I've got a problem even if I find the portal and login info, mom has a delicate ego and seeing the notes would cause her to have a rage fest. She's in complete denial about any of her issues. Mom, has in the recent past created what could easily have become a serious problem for both of us (very long story I've posted on another person's discussion here) and she has told people she's afraid of me and that we argue, and that I'm trying to take control of her house. The house part is true, just not in the context she presents. Yes, I do the best I can to repair and make the house livable and yes, I've painted, removed garbage and cleaned until the house might have been unrecognisable to mom. Apparently, that's unspeakably evil of me. If I hadn't come when I did, the neighbors were about to intervene for a second time, call elder source and a cleaning crew would, for a second time, come with a roll-off dumpster and cleared mom's house of nearly all of her and dad's belongings and furniture AGAIN. Arguing, on the other hand, isn't my style and arguing with mom would be about as useful as wheels on a duck. When I discovered what she was saying, I told her then, (Dad was still alive) that I was awfully sorry but that I couldn't stay any longer. I felt that because she consistently believes the ugly things she says, that if she felt unsafe and that my work here was making her uncomfortable, then I should go. At the time she would remind me daily that she managed the house and Dad before me. (Dad had alzheimer's, totally incontinent and very hard to care for at times) So mom's statement was untrue; the evidence, being the state of the house and the fact that an outside source had to be called in by neighbors' intervening and dad had home health care aides. They weren't as good as they should have been but at least dad was bathed and changed 5 days a week. So, even though the statement mom made was untrue, I didn't argue with her or present the obvious contradictions to her statement. She believed what she was saying and it's pointless to try to argue or present facts to a cognitive bias. So, what I said to her was because she feels unsafe around me and because she was more comfortable in her home the way it was before I got here, because she can manage without me, I thought it was time to move on. Mom attempted to walk back what she'd said at that point but ultimately it was dad and the idea of leaving him in the situation was what convinced me to stay. Aides became a very big issue in the year dad died. No-shows, late shows, gossip and phone instead of working, landed the job in my lap and with the assistance of hospice in his final 6 months, I took care of him until the night they took his body to the funeral home. 
I don't have a problem with caring for mom until she passes. I've done that before. I do have a problem dealing with her mental instability, malevolent cruelty and extreme difficulty getting any support at all from mom's health care team. And now, once again, I'm seriously considering leaving. Leaving will lead to horrible consequences for mom, in which I will, at least, be partially responsible.
 I know myself. I'll carry that guilt till the day I die.
So, I do what I can while I can, hoping that I can hang this wave.
Lymie61 Feb 2021
Of course she won’t budge from this doctor, he/she is telling her what she wants to hear and backing up her “beliefs”. What was she referred to the neurologist for and when? Not all specialize in the area you are concerned with, dementia/Alzheimer’s and if that wasn’t the reason she was referred to this doctor that may be part of the issue. Do you have a better relationship and HIPPA clearance with her primary care provider? This is the person I might suggest approaching with your concerns even if he or she can’t actually discuss her care with you (easier if they can) you can express your concerns with a list of examples and then they hopefully will get your mom to the right person. Even under the guise and very real benefit of getting a thorough exam, evaluation in case they need something to refer to in the future. It would have helped a lot if my mom had had a neuropsyc eval baseline prior to her stroke but of course getting anything done now to prevent a major event is going to take medical provider intervention wether mom is onboard or not so if that doesn’t happen you will be left with no choice but to wait for something to happen that scares the right people into noticing. Once the doctor avenue has been exhausted and really while your pursuing that probably, you have to give her enough rope to get herself into trouble much like a teenager it’s actually the most loving thing to do not something to feel guilty about when something happens. The more you try to restrict and control her the more she’s going to resist. Try a reset for both of you where you can become her advocate, probably after an event unfortunately, rather than her “keeper” for lack of a better word at the moment. It’s not going to alleviate your worry but it is her life, her choice still and this is the time to make sure she trusts you so when she can no longer make a choice she knows you can. I know we are talking about her safety here but I know first hand for the long run we need to learn to pick our battles and don’t always have to agree with our loved one’s choices but allow them to make them.
AoiUsagi Feb 2021
Lymie 61,
You made me smile. I like that.
While I'm not looking forward to a train wreck, I hear what you're saying.
We had a train wreck last year and that was when I called and was told that Mom would have to call, they couldn't talk to me.
This is also when I started being more assertive about being a medical surrogate. Dad had the final stages of dementia then and simply could not have helped in any way. Mom wanted to do a POA ...but nothing has been done yet. I think she's suspicious. Not with reason but that's part of the overall problem.
I'm in a funny, leaky boat here where what I do is put out fires and pick up pieces. All the while hoping that someone doesn't point a finger at me and tell me I should have been more aggressive.
I thank you for writing. I'm still digesting what you've given me to think about. I hope things in your life are smooth as glass.
😄🌼💮

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Martz06 Feb 2021
I am currently having the same problem. I’m poa, father was diagnosed with dementia by a neurologist in 2019. I didn’t want to tell the doctor in front of my father so a few days later I called the office and informed him. They said due to privacy laws he can’t discuss anything with me, however the girl at the front desk said she can take messages. I want to call back and ask for his email so I can send a letter giving details of the problems my father is having so he’s aware. I’m wondering if he finds out how many problems my father has if he might be able to do a competency test on him then he may discuss things with me. If not, It’s a shame but all I can do is give him the information and not work with him directly in my fathers care. I thought about finding another doctor but my father really likes him.
Lymie61 Feb 2021
The simple fix, which may not be so easy if dad doesn’t cooperate, is to get your dad to give them permission to share with you. The patient can add anyone to their HIPPA approval they want but it really needs to just be done with each doctors office while accompanying them to an appointment. In our experience the doctors offices want to have you involved and make it very easy, simply ask if it’s ok to talk with you too no big deal paperwork and red tape. If you don’t or can’t do it this way then it becomes a more difficult task, maybe impossible task.
Barbeem Feb 2021
Make sure you have POA in place

Midkid58 Feb 2021
Sounds like my mom.

She can 'maintain' a facade for about 10-15 minutes (the length of a dr visit) and then she's off to the races.

Her dr, who is nearly 90 himself(!!!!!!!!!!!!!!!!) just pats her on the back and says she's going to live forever. Seriously, guy should be put out to pasture 15 years ago!

YB is her primary CG, and does not share with the rest of us what is going on. As she no longer drives or goes anywhere, she's really harmless. If YB can deal with the 'cray-cray' then I can't let it bother me.

The one and only thing with mom is that her place is so filthy it makes me sick, literally, to be in it. I stay out in the common LR to visit her and when she starts to 'check out' it's my signal to leave.

Other 3 sibs do phone calls only, so they don't see what I see.
AoiUsagi Feb 2021
Midkid58,
It's hard to see these things happening and for me it's harder to try to understand why life is just passing by some older people like our folks.
Life's not over, there are still things to do and see and experience but it feels like they've given into a dark place where everything but natural life support has been shut down. Depression in our older folks is part of the problem and dementia in some. It's so cruel to them and it's cruel to us as well.
I wish you well. You:re on the right track with keeping your boundaries and tending to your own life.
🌻🌺💮🌸
JoAnn29 Feb 2021
I hope u have her POA.

Mom can sign a HIPPA paper allowing u to talk with her doctor. Especially if he feels she is competent.

Next appt make a list. Only one page in 14 font. List 1, 2, 3. My Moms doctor used the list to ask Mom questions. Ask for testing. If you r not satisfied with this doctor get a second opinion. If u have to fib to Mom you have to fib. Tell her Dr Jones wanted her to see another doctor.

People in early stages of Dementia can "showtime". They are able to fool someone for a short period of time.

Good luck

gladimhere Feb 2021
HIPPA does not prevent you from giving doc info. It only prevents doc from discussing her health with you.
AliBoBali Feb 2021
That's a good point. I gave a lot of input to my dad's doctors before appointments so that they could assess certain things that otherwise they wouldn't know to look for. I think in these cases where someone's declining but puts on a good show at the doctors, it's necessary that someone is giving them the missing information.
Beatty Feb 2021
PS Is Mom living with you or living alone?
AoiUsagi Feb 2021
Mom and I live in the same house.
I decided early on in my visit that it was probably best to stay and try to get things sorted out and more liveable.
Beatty Feb 2021
The old 'normal for age' in the Doctor's office but 'cray-cray at times' for you at home problem.

I noticed my parent's cupboards were nearly empty 🤔.. Mother stopped wanting to buy too much I was told.
🚩 Planning problems.
Would walk straight across a road without looking.
🚩Judgement problems.
New dints in the car.
🚩 Spacial problems.

This was well before MRI or X-ray showed evidence of past TIAs & vascular problems.

You may well be seeing age related vascular problems, dementia, depression or something else completely. Time will tell.

What can be done?

Well a lot depends on what your Mother wants: how much investigation, what & if any treatment for health concerns.

The rest will be up to you.

Where is your line in the sand?

How much help will you provide? How long for? What tasks will/won't you do?

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