Hi all, long time reader, new poster here.I am a 36 years old female, long-distance caring for my 77 year old widowed mother (about a five hour drive). She is in Assisted Living for the last year, after being found at her home with a compound ankle fracture that was a few days old (she purposely hid it and didn't tell anyone about the injury). Before she was in AL, she was drinking vodka heavily and living alone, so it's a relief for her to finally be somewhere where she is being looked after. While this was all happening and causing stress and drama (hospital, SNF, trying to find AL, driving back and forth, while working full time, etc), I was diagnosed with retinitis pigmentosa (RP), which is a progressive disease that causes blindness. Came out of nowhere and a huge shock, so obviously I have to manage that as well. I am starting to get to the point where I won't be able to drive, unfortunately. I suspect my mom is showing signs up dementia; so I can't have an adult conversation with her about what's happening because she either forgets, or only understands the situation on a very simple level. I am her POA and there are no plans to move her soon. My question is, is there anyone on this forum who is dealing with a progressive disease and also having to deal with a stressful aging parent who is showing signs of dementia, and losing touch with reality? How do you cope? Obviously this is a hard situation; I know the best thing to do is the prioritize my health and new diagnosis, but that doesn't make it easy. Thanks in advance for any feedback and support.
As for your mom, get her a doctor's appointment to assess her mental capacity issues. It might be easier for you to care for her if she lived closer - in a senior community that has different types of residence to help as their residents phase to increasing need for care.
Is there someone else that can be POA?
If moms dementia is early there is the possibility that an attorney talking to her might determine that she is able to make the decision to appoint another POA.
If that is out of the question is there anyone that would be willing to step in as her Guardian? Big ask and it can be expensive (expenses paid by your mom) and it can be a time suck as there is paperwork and some Court visits needed.
Second question
Is there a way to move mom to closer to you if you will have to continue to be her POA? 10 hours in a car is stressful, I imagine if you are spending the night that is not convenient or inexpensive.
You have to focus on yourself and begin to prepare for a whole new life for yourself. Kinda like dementia, not a life that you would have chosen, one that came out of the blue and now ya gotta deal with it the best you can.
6 weeks of caregiving for my mother (dementia) put me in bed. The stress was unbelievable.
We moved her into Memory Care soon after that.
We use the sale of Mom's home, as well as her small pension and her Social Security to fund this care.
She's been in Memory Care for almost 4 years, now.
My mother lived in AL with mild to moderate dementia when my DH had a bad health scare where he passed out at work and needed a pacemaker implanted. Mom was carrying on to such a degree, she turned HER reaction into MY problem. So, more stress to add onto my plate.
Shortly afterward, she got pneumonia and went into the Memory Care building of the same AL after rehab, because her dementia AND her mobility worsened. Then DH needed a liver transplant and mom decided it wasn't true.....that he was fine! We were going out of state for the transplant for an extended period, as soon as his waiting period was up and it was his turn. About a year. But how was I going to deal with her AND him? I told mom very little about what was going on with DH. Like you said, they can't process things and in my mother's case, if it wasn't about her, it didn't matter. I was extremely stressed out trying to plan this extended trip where we'd be staying in a hotel and I'd be doing the caregiving, and figuring out support for mom.
By some miracle, mom suddenly went into bed under hospice care and passed away 7 days later. With no pain or suffering at all, thank God. She was 95. Very shortly thereafter, DH was called to the Mayo Clinic for his transplant!
In your case, is there a Memory Care unit or building associated with moms AL that she can segue into when necessary? If so, that's the perfect plan. You can hire a mover to transfer her things to the new suite, and hopefully accomplish this while you are still sighted.
Speak to the Exexutive Director at the AL about a referral to a Care Manager for mom. A liaison between mom, you and the AL who can assist you with whatever you need help with.
Sending you a hug and a prayer for strength throughout this process.
There is many dealing with caregiveing and there own health issues, it is not uncommon, but mostly because people are living so long and aging also, and, caregiving stress can cause a lot of health issues.
My first thought is that you need to take care of you first and utmost, you need to let the AL take care of mom, and you need to worry about yourself.
What are your mother's assets? If she has none or has minimal she will need to enter a nursing home when her finances run out for ALF. Meanwhile you can manage this while you can, and when you cannot you will need a Fiduciary. That can be a Fiduciary who is licensed and hired by you to manage her care if her finances support that or you can call APS and tell them that long distance and blindness preclude your being involved now for you mother, and request a state guardianship for her placement and care.
I cannot think of any other advice and hope that some may have something for you. I surely do wish you the best, but this will not be doable by yourself, long distance, and dealing with such vision limitations. I am truly very sorry.