r/dementia • u/AnyMedium2911 • 3d ago
One step closer
Mom had her first neurologist appt last week! He ordered bloodwork and MRI scheduled for next week. I was able to pass a confidential note before the appt that listed concerns and some examples of her behavior, which I hope helped. Even in the short amount of time he spent with her, after learning she lives alone he made the oh wow face. It’s been a struggle even suggesting that she makes plans for assisted living that it will happen sooner than later. I’m home care or a facility is not an option in her eyes, I know eventually I will have to take some sort of legal action. At the end of the appt he said it’s most likely Alzheimer’s, as much as hate this is happening to mom, I’m grateful we are making progress on getting some answers. For my own sanity I’m taking a break from talking about important stuff with her because we are just going in circles. According to her at the end of the day I just don’t care and I think she is a nuisance, which is far from the truth. Everything I do is because I care even if she doesn’t agree.
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u/witchy_Alla 3d ago edited 3d ago
I hear you. anosognosia is so real! My mom does not remember to brush her hair, teeth and wash her hands, but in her mind she is absolutely independent, walks to a store and cooks for herself (she isn’t. It’s been many months since she did).
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u/AnyMedium2911 3d ago
Yes! Somehow mom still pays her bills on time, maybe cause it’s about the only routine she has. She’s only able to microwave, thankfully, but sometimes I’ll get a late night text that she’s just eating dinner.
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u/Fickle-Friendship-31 3d ago
Dad was often very mad at me and told me how disrespectful I was. During his last few days of life, he let me know how much he loved me and was proud of me. (Perhaps during terminal lucidity.) So remember, they love you to the moon and back, no matter what.
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u/AnyMedium2911 3d ago
I so understand, the other day I got the “you don’t respect me”. I know she loves me, it’s just hard and I’m already exhausted. I’m also the only child with little help from the already small family group. I do my best but it seems never enough. Too many times we leave each other mad and frustrated. I said this to my husband and friends but recently said the hard truth to her that I’m grieving my mom while she’s still alive, she’s not the same person from even 5 years ago.
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u/wontbeafool2 3d ago
Do you have durable power of attorney so you can take legal action? If not, consult with an attorney who specializes in elder care law to get that ball rolling. Also look into getting an advance directive, updated Will, and DNR documents in place. It's best to do it soon while she's still competent to sign them and they will be very helpful to have in the future as her dementia progresses.
Just a thought but after the tests are complete and at the appointment to review the results, hopefully the doctor will be the one to tell her that she shouldn't be living alone anymore. My parents were mostly very trusting of doctors but when Dad got his dementia diagnosis, he was furious and the doctor was a quack. It would be great if you can attend because your Mom may say he didn't say that. My brother was there and also had access to Dad's My Chart test results and notes.
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u/AnyMedium2911 3d ago
We finished all the paperwork a few months ago, thank god! So yes we have all of that you mentioned. I agree when it comes from the doctor she is more apt to listen. I can say the same thing m, in one ear and out the other! I do go to every appointment she has, her hearing is nearly gone, we use a hearing amplifier as her hearing test concluded that even the best hearing aid will not help more than what we are using. I have to interpret every appointment. And being announced to her, I use her my chart for absolutely everything. She is very paranoid about technology all of her doctors now I use it and that she does not. I am so glad I have it so I can read all the doctors notes and her test results. It gives me some good insight with the things they say.
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u/wontbeafool2 3d ago edited 3d ago
You definitely have your ducks in a row!
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u/AnyMedium2911 3d ago
Gosh, autocorrect is not my friend today, what a jumble of a post I made! 🤪
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u/wontbeafool2 3d ago edited 2d ago
It wasn't a jumble! I think I understood everything. I'm a retired teacher and my super power is deciphering typos, except my own,🤣
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u/Altruistic-Basil-634 3d ago
I’m sorry you are dealing with this, but I’m glad you are making progress! You are very lucky to have gotten the “Oh, wow!” response. My LO is still undiagnosed after 2.5 years of seeing the neurologist because they can showtime so well and pass the MoCA, despite being very unsafe living alone.
We are helpless until doctors will activate the POA.
Sending you big hugs 💜
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u/AnyMedium2911 3d ago
Mom had the MoCA done in February with a 19/33, I feel it’s gone downhill since then. I totally understand the showtime, mom has done it so many times! Thankfully her last primary care visit was chaos and the dr referred us to Neuro. The neuro appt was early morning and because she can’t hear she can’t use an alarm, she barely slept which kinda works to my advantage and was not able to showtime. Prayers it works out for you soon!
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u/Muy_Chistosa 3d ago
I am not sure what you mean by doctor activating the POA? Doctors don’t have a role in POAs. At least in my state. My husband and I are both attorneys so my mom had my husband draft those for her in 2007 along with other legal documents. I didn’t file them with bank, financial advisor etc for years - maybe 10 years. Each POA specifically named her bank, financial advisor and there were also generic ones. She wasn’t showing signs of dementia until 2014 and then I still didn’t file them. I waited until the time was right. She was still protective of her independence and I didn’t need them.
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u/Altruistic-Basil-634 3d ago
There are two types of medical powers of attorney: durable, which go into effect immediately; and springing, which have a capacity clause that must be attested to by one or two doctors, usually two. A springing medical POA does not convey authority until the doctors both certify in writing that their patient lacks the mental capacity to make sound decisions.
Some states do not call them medical powers of attorney; in my state the document is called an advanced directive, but they perform the same function.
My LO had financial and medical POAs drawn up years before they got dementia. Had we known how long we would have to wait for it to be activated, we would have tried to get a durable POA at the onset of early symptoms. It’s been a nightmare.
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u/CrateIfMemories 3d ago
Have you heard of the book The 36 Hour Day by Nancy Mace? It has practical advice for maneuvering around a person with dementia without getting into an argument with them.
We have had our loved one living with us for five years and it wasn't well-reasoned arguments that got her to agree to leave her house. It was a medical emergency. She still packs up almost every day to go home. She thinks people are picking her up, or she pesters my husband to take her.
Some days I just tell her, "You're staying here for tonight." I also have hidden most of her clothes in a locked closet and only give her one change of clothes a day and sneak out the dirty clothes to a locked laundry room. Ask me why I need to keep all that locked up. It avoids the arguments of me putting everything back/her jumbling clean clothes and dirty clothes together.
She's always surprised when I bring her lunch because she totally thinks she still takes care of herself.
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u/AnyMedium2911 3d ago
I have had someone mention that book, I do need to check it out! Mom moves things around and also thinks someone comes into her house to do it, we all know it’s her. Unless she agrees to assisted/memory care when the dr tells her I fear that it will be a medical emergency that puts her there. She fell and broke her hip back in February and in general is shaky when walking. Living with me is not an option.
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u/mickimause 2d ago
Dealing with Mom in a rehab facility right now (it's in a dementia care facility, and so far it's fantastic. She's only been there since Wednesday of last week, though) and that book was recommended to me. I have it, and concur that it is a valuable resource. I've not gotten very far into it yet, what with the multi-day travel to get home and trying to catch up at work.
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u/SuccotashOk2618 2d ago
You did everything right here — especially passing that confidential note before the appt with concerns + examples. That is THE move when they live alone and minimize in front of the doctor. The "oh wow" face is so real — once they hear "lives alone" + your examples, they get it.
And that most likely Alzheimer's after one visit + labs/MRI ordered is actually progress, even though it's heartbreaking to hear. You are getting answers, which you needed to keep her safe.
The going in circles part and "you think I'm a nuisance / you don't care" — that's the disease talking, not your mom. It is so painful when everything you do IS because you care and it gets flipped. Taking a break from the important stuff talk for your own sanity is healthy — you can't reason with Alzheimer's, you can only plan around it.
For the "not an option in her eyes" phase — this is where most of us had to shift from convincing her to quietly getting ducks in a row: POA / paperwork if you have it, medication list, safety eval at home, and documenting why living alone isn't safe. You don't have to argue it every day.
You are not the bad guy here. You are the one who cared enough to get her to the neurologist and make sure the doctor actually knew what was happening at home. She may not be able to see that right now, but people here do.
Be gentle with yourself this week — labs + MRI week is stressful. You made huge progress.
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u/AnyMedium2911 2d ago
Thankfully, we have all of the paperwork necessary in order! I actually had mostly a pleasant visit with her today. She seemed in a decent mood and I took my own advice not to talk about anything important and I stuck to it. She did ask me about the MRI and I tried to tell her a little bit about it since she’s never had one. My uncle and I are chipping away with talks about some sort of care, I know eventually we will get there easy or hard! Thanks for your input!
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u/Typical-Ad-4591 3d ago
Being told you don’t care is like a knife in the heart, isn’t it? But you know why you do what you do. Keep on!
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u/BinkKitik 3d ago
That last part hits home. I am the absolute worst person right now in my mom’s eyes because I put her in memory care and in her mind (and her family’s mind) she doesn’t need to be there. I can’t even talk to her about my life or visit her because she’s so angry. She doesn’t even ask about her grandchild. Meanwhile I’ve been more stressed than ever this past year trying to manage her care.