Not sure what to do.
Comments
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Hi RayleeBean - welcome to 'here', but sorry for the reason.
Several things that come to mind... You can let her doctor know whatever you need to, but if you do not have HIPAA accesses/rights, they just cannot reply back to you. Another issue is that someone needs DPOA. It needs to be someone who will take total responsibility for her, her finances, medical decisions and care, and various other issues that will inevitably come up. My other thought is that it sounds like you are getting into way more care than you think, especially for a young person. None of 'this' is easy and as much as you love your grandma, it will only get more difficult.
One example right now is wondering if she should be driving, as that is a huge factor, and it is one of the most difficult things to deal with. Another is her eating. A PWD will absolutely crave those sweets! Also taking proper care of hygiene, and taking meds properly... I hate to say, but it only gets worse. Do you have help? Do you get respite to take care of yourself and get out with friends? That is important. Because you are worth it!
There is a 24 hr help line if you need more guidance. It is 1-800-272-3900, and ask for a care consultant.
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Welcome, I agree with Susan this is a lot for a young person to take on. I don’t know how you will be able to work and care for her. You are a good person for stepping up like this. I’m retired and my mom is in assisted living and I am still overwhelmed with all that needs to be done. I’m also working on cleaning out her house. I would contact your local commission on aging. At some point someone is going to need a DPOA. If you don’t have it yet now is the time. If you wait too long she may not be willing or able to sign. You will need this to manage her finances and if it comes to it, you may need it to get her into assisted living or a nursing home. She probably will not want to go (most people don’t).
My mom also feels I am treating her unfairly and is not happy with me. She feels I am overstepping and she doesn’t belong in assisted living. People with dementia often have anosognosia. This is an inability to recognize their symptoms and limitations. It makes things crazy difficult. If you go to groups on this website then to new caregivers, you will find a lot of great information. I recommend the staging tool, and understanding the dementia experience. These will help you better understand what you are in for. I tend to be a planner, so I would suggest looking in to a plan B if things become too overwhelming. You can still be a good caregiver by making sure she is in a good place, visiting her regularly while she getting the care she needs in a facility. Just my opinion. This is a great place to share, vent and ask questions of people that really understand.1 -
hello, thank you for the advice, i should have explained more, she doesn’t drive anymore its me and my mother bringing her where she wants to go and secondly, she can still take care of her own money and such. Im not sure how to explain this so i do apologize but shes pretty much still able to function on a tay to day she just needs someone to watch her and be there to do the stuff shes not able to do, cooking, cleaning, drive her where she needs to go etc, she tried to get into assisted living but she was denied because shes still capable of doing things but needs a little help. Thats why i’m asking for help i dont want to take away what independence she has but i also have to make sure shes getting what she needs, i just want to go about it the right way.
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i dont work as of right now, i go to classes 3 days a week to get my GED, me and my mom switch so when shes working im home and while im at classes shes at home, i wouldn’t say its to much for me just overwhelming and i want to do things correctly, your absolutely right, we do have a plan b, and for the DPOA she wants nothing to do with it, we tried bringing it up in an appointment and she got real upset. It doesn’t help that her doctor is leaving both me and my grandma in the dark about a lot of stuff, our state doesn’t seem like it has a lot of things to help caretakers or patients, thats how i found this place.
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I grew up with difficult parents. Then they had difficult problems in their later years. Here is how I convinced my parents to grant POA, after begging for years:
I had to tell my parents that I would no longer help them with anything until I had powers of Attorney [medical and durable]. Either they trusted me, or they didn't. If they didn't trust me, then I was no longer able to help them. I was tired of lying to businesses while I conducted their business. I was no longer going to break the law and pretend like I was allowed to do things for them. And no help meant no help. No running errands. No fixing billing problems or doctor's appointment assistance.
"You can just go to court and get it there," they answered. "Nope, I'm not doing that. If you don't trust me, I'm not going to have our family business permanently on display in court records. You can just go be a ward of the state."
After I got POA, I did nothing. I did absolutely nothing to spook them. If they directed me to do something I would do it. Life went on, business as usual. I earned their trust as their POA. I always knew they could also revoke my power at any time.
Everyone has a different story. I wanted to share mine. Im so glad I dropped the hammer and had legal docs drawn up, despite strong resistance from my parents. It has made things easier for our family over the last five years.
Stay strong, RayleeBean. You are going through it, and I hope you celebrate when complete your GED.
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I'm glad you found this forum. Lots of information and commisseration here.
Unfortunately, it isn't just your state lacking on information, and resources, for caregivers.
If your grandmother is uncooperative with DPOA and refuses to sign anything, eventually, someone (maybe your mom) would have to go for guardianship. I've heard that is more involved, expensive, and a hassle, though. You and mom might want to see what an elder-care lawyer would have to say. Sometimes you can get a consultation for free, and see where you need to go from there. Maybe your mom could convince her by saying "Mom, let's make sure our affairs are in order", and maybe get to signing both sets of the DPOA papers together.
Your grandmother has anosognosia. This is not denial, but rather, the perception that absolutely nothing is wrong. Their view of the world and their view of their situation is the only one that is right.
I'm glad she isn't driving. Do keep an eye on the finances, though. MIL and others have been scammed, and others have been known to blow through the finances before a LO knew what was happening and could stop it.
She is blessed to have you and your mom watching out for her.
And congrats on the GED! You got this.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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