Not sure what to do.

RayleeBean · February 23

Im taking care of my grandma who has been diagnosed with dementia, i started taking care of her since i turned 18, this really wasn’t a choice for me but im here and im trying my best everyday however there are things that are popping up making it difficult for me to care for her and i need help, she argues all the time i know not to argue with her but she turns everything you say into an argument no matter how calm you are I'm not sure how to stop it, she also has started lying to her doctors about meds, diet and exercise but when i try to calmly talk about it she shuts me down and i cant talk with her doctor, Ive thought about calling but i feel im breaking some invisible rule, she wont eat anything but junk even when i buy foods she likes, ive tried telling her no but she just goes to the store and buys more junk food. Another problem im having is she saying im controlling her and she makes it out to her being in a bad situation but i do everything i can to make sure shes well taking care of.

SusanB-dil · February 23

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.

H1235 · February 23

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.

RayleeBean · February 23

https://alzconnected.org/discussion/comment/237007#Comment_237007

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.

RayleeBean · February 23

https://alzconnected.org/discussion/comment/237021#Comment_237021

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.

--Rebecca-- · February 24

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.

SusanB-dil · February 24

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.

RayleeBean · February 24

https://alzconnected.org/discussion/comment/237050#Comment_237050

that was a good strategy, that wouldn’t work with my grandmother though, anytime she feels like her independence is at stake she gets real defensive, and id rather not make her angry as much as possible it does more harm then good.

RayleeBean · February 24

https://alzconnected.org/discussion/comment/237051#Comment_237051

i do keep an eye on her finances, and yes me and my mom have conversations about her suggesting a DPOA because no matter how else we talk about it she gets real defensive about her independence, no matter how much we explain it to her, we have tried talking with her doctor but she tends to sush us effectively cutting the convo.

H1235 · February 24

I would not suggest a DPOA to her with the reasoning that she has dementia and needs it. I would suggest your mom say that she is going to have one done up just to be prepared because you never know and then very casually suggest she might want to do the same. It might also help to point out that a DPOA will not take any of her rights regarding her money away. I was originally very surprised to learn that even now mom can go to the bank and take money out or move it around as she wishes. The DPOA only gives another person access and a right to act but does not take the person with dementias rights away. We just don’t bring her to the bank or give her any credit cards, so it’s us not the DPOA that limits her access.

--Rebecca-- · February 24

I second not mentioning she has dementia and therefore needs a POA. My suggestions to my parents were along the lines of "in case they broke a hip and needed extensive help. If that happened, doctors could not share any medical info with me. I could not pay bills for them."

Edited to add: My last straw was my mom having an at fault car accident and chit chatting with the other party's attorneys like they were best friends. The stakes were high-she could have caused severe legal problems with her actions. She needed a POA handling her affairs immediately.

sandwichone123 · February 25

One thing I like to point out about POA in general is that it's not about disability. It's about having someone else deal with the petty details of life. Rich people use POA all the time—they don't go signing paperwork to buy a car, they have someone do it for them. They don't go to the bank, they have someone do it for them. Creating or using a POA shouldn't be embarrassing for anyone—it's a convenience. The fact that the POA is "durable" doesn't change that.

That said, do not create a "springing" POA if you can help it. In that case a person has to be certified, typically by two physicians, as not competent. This can be a difficult hurdle, depending on the personality and beliefs of your LO's docs, and it really does communicate embarrassing information with every use.

RayleeBean · February 25

https://alzconnected.org/discussion/comment/237122#Comment_237122

she goes to the bank religiously every month, we usually dont use dementia as a reason why we do something for her, its usually “so you dont have to stress and we can help you” kinda thing “. Shes wants to do online banking which is not at all something we think is safe, on account of all the scams that are aimed towards elderly.. shes already been trying to click on those links that say “elderly apartments for 300 a month” and ive had to redirect quite a bit.

ronda b · February 25

As far as her shutting you down in the dr office,you can make an appointment to meet with him on your own. Explain to him him what really is happening so the next visit he knows. As for the online stuff block things , put supervision control on it. Worth a try.

Not sure what to do.

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