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?
9 Answers
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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?
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
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.
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.
🌻🌺💮🌸
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.
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.
I decided early on in my visit that it was probably best to stay and try to get things sorted out and more liveable.
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.
😄🌼💮