Hello AC. I'd say I was a "new" caregiver, but caregiving sort of snuck up on me as my mum's condition deteriorated over time. It's only in the past few days I realized I was an official "caregiver" at all even though I'd been doing it for years now.
She always had digestion issues and I was shocked to learn that this is a symptom of Parkinson's. I think it's gone from pre-P to full-blown now.
She fell before T-giving, was in hospital for 4 days, now is in rehab for a week. I visit her every day (which I really don't mind and isn't a problem at all, it's MUCH better than having her at home) and I also try to call every day (also really not a problem at all, I don't mind) but the phones are bad in the NH and she doesn't seem to care to have her cell phone back because it's just too much thinking-work for her. *sigh.*
The most frustrating thing is she (like many other care recipients here) just doesn't want to do anything. At all. For anyone else or even herself. Just like the cell phone, she's more than capable of using it but just can't be bothered DOING it.
We live in a relatively nice mobile home (was my father's decision..very very small, but certainly OK enough for me) but she always wanted a foundation/traditional home like she grew up in. But similarly to everything else, she just likes ideas and traditions...but absolutely could not bother with practicalities or expense of actually dealing with one.
She just lets everyone else do the thinking work for her and stews in this weird resentment when she doesn't get wheat she wanted. I can't imagine anyone being more mentally lazy with their life.
I'm so angry that she went through this end-of-life stuff with my father and STILL! had nothing ready to help me when it was my turn to handle her stuff....never had me added on to her accounts while she was mobile, never signed to the house over to protect it, never bothered to walk me through the process with my father that she handled so I knew what to expect with her.
I have no siblings, no other family, and no one else to help me through this. I'm figuring it out as I go. This is the most embarassing process ever. {And SHE was embarassed because I called the ambulance to pick her up off the floor when she fell!) We do have a good family lawyer who, between him and his predecessor in the same office, dealt with my mum's family for eons. But I don't think he even likes m??? He helped me get my PoA for my mum because of knowing her and her mother. I mean... i was never in trouble, i did everything relatively rightish?? I feel like I don't exist to anyone.
I dread dealing with the Medicaid labyrith coming up because she's bedbound after a week in rehab and I don't see her being able to come home. (mostly through maybe a combo of illness, fear of falling, and just purposeful irresponsibility and mental laziness). I've already laid down the law....you WORK at getting more mobile, you can come home. You don't WORK at being more mobile, i CANNOT help you. I have to work, and now I'm getting offered consistent overtime that I really need to take when I can get it.
I'm not necessarily "burned out" from taking care of her as the upside is she's a lot more compliant than a lot of seniors could be. But it's maybe just an endless pit of frustration because the downside sheer amount of....just dumb negligence...the "do nothing ness" of it all that could have made this process easier.
Thank you for reading.
You don’t say how long that you have been a caregiver for your mom.
I took care of my mom who had Parkinson’s disease for many years. Mom died at age 95.
I saw my mother go from the earliest stages of Parkinson’s disease to the final stages at the end of her life.
Trust me, you will see many changes occurring throughout your mother’s life as her symptoms progress.
Mobility becomes more challenging for someone with Parkinson’s disease. Their brain sends signals but their bodies aren’t always capable of following these signals.
Please have her neurologist, physical therapist and occupational therapist explain exactly how Parkinson’s disease affects a person and then I think you will understand this condition more accurately.
Wishing you and your mom all the best.
Here is a link about Parkinson's and dementia so you can learn about the association:
https://www.hopkinsmedicine.org/health/conditions-and-diseases/parkinsons-disease/parkinsons-disease-and-dementia#:~:text=Parkinson%20disease%20causes%20physical%20symptoms,it%20hard%20to%20maintain%20relationships.
Get her placed in long term care with Medicaid if she requires more care than you're capable of providing. Medicaid is a process and a pain, for sure, but not undoable and worth it in the long run.
Good luck.
I'm having trouble nailing this down totally to Parkinson's because she was sort of *always* like this, even without the neuro degeneration.
Honestly my both parents never really included me very much in their worlds EVER (I think they're the sort that as long as I didn't die they thought they did an OK job) and mum tends to tell everyone else factual stuff except me (she told a former coworker, that now works as an activities director at the NH she is at, that she fell,...that's what got this whole process started....but wouldn't tell me anything) so I have a lot trouble distinguishing what's her and what's wrong with her.
I seriously lived with her my whole life and don't know who she is. I don't know how to get her seen by her neuro if I can't GET her there to the appointment. She knows how to present very well for an appointment and just likes going to doctors as a social activity so they don't see what she's like when she's not "masking" or whatever.
ohhh this is excellent. I'm definitely going to use this if I need.
>This aspect of being a non-starter--I kind of wonder if it's a genetic thing.
I bet it is. She's a lot like her mom. I'm a lot like her father, who she really did adore (I get the "YOU'RE JUST LIKE YOUR GRANDFATHER" speech a lot lol).
I just found out she let the house insurance lapse, soooooo that's another thing I'm going to have to handle. FML. I'm glad I have my cats and internet resources such as this website so I don't crawl in a corner and just give up on the worthlessness of it all.
She doesn't initiate 'stuff' b/c she never has and doesn't want to.
A problem that is not addressed takes care of itself anyway. Probably not in the way you'd want, but if you refuse to make a decision, then often the decision gets made FOR you.
Since you are her PoA, you can and should be making decisions for her. If she gets mad, stay calm and say "Mom, you refused to deal with this, so now I have to. I'm not going to argue with you about this."
I remember years ago when my MIL told us all she wasn't going to waste money on a lawyer to make a will. She wanted her 'estate' split in 3 equal parts and dispersed among the kids.
Well, she wouldn't put it in writing and one day, sick to death of talking about it, I told her that if she died w/o a will, the STATE would step in, appoint a person to go through her junk and then liquidate her estate. As family, we would have no say. (I know this isn't 100% true, but I was beyond frustrated with her).
She was shocked! "You mean, they will touch my THINGS? My underwear?"
Yes, ma'am.
She had my DH calling her an attorney that week.
That's often what it takes to get someone to make a decision. So many times it's not a matter of 'right' or 'wrong' it's just a DECISION or a plan.
This aspect of being a non-starter--I kind of wonder if it's a genetic thing. watching my DH and his sibs try to come to some conclusion/decision makes me want to tear my hair out.
This could be why there is a disconnect between what your mom appears to be able to do, and why she doesn’t actually DO it.
My mother was not a good initiator her whole life (I think that her chronic depression got in the way.)
Dementia wiped any chance of initiating at all. It made me CRAZY for awhile there. Eventually we understood more about dementia, so I didn’t get quite so frustrated.
Best wishes to you.
Does she have a Will? Are you her executor? Those things would be the next issues to work on. You don't have to use the lawyer you mentioned in your post. On the other hand, mom may trust that lawyer and perhaps he's the only one she'd let handle her estate issues. Make sure she has a Will NOW. Pursue it if she doesn't.
Good luck. Don't let her go home with you!
Yeah, I have to get on the will/executor stuff next. Next week I'm going to be absorbed in giving out copies of the PoA to bank and NH because I just...don't have anyone else to be at this every day. I don't mind contacting the family attorney, so definitely in the next few days i'm going to handle that.
The whole medicaid thing absolutely terrifies me but I know I have to get on that because I can't even transport her anywhere now.
She barely has 6K available after I paid off all her debts (may sound coldhearted but I do NOT want to deal with her auto withdraw bills she never bothered to fully pay off when she passes) and while she'll probably pretty easily be approved for Medicaid the process is the scariest part of this.