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What does this mean?
I talked to my mom's doctor's nurse. She told me that they called my mom with the diagnosis and she told them she could take care of herself and she cancelled her followup appointment. But, knowing she has dementia, they called again today and she accepted the followup appointment.
The nurse also told me that me and my dad are on my HIPPA form - which I didn't know. The nurse told me mom's diagnosis from her head CT was
Micro-vascular eschimic changes shown, no hemmorhages or cerebellum edema, no brain tumor. The changes were described as "chronic and small." So apparently she has not had a stroke. Mom scored 14/30 on the memory test. She did not know what day it was or even what year it was. Just before he saw my mother last time, the doctor found her waundering around on the first floor of his building looking for his office. His office is and always has been on the fifth floor. Also, mom has been going to him for over 15 years.
The nurse told me that it is time for dad and I to start making decisions, getting a POA in order and figuring out where mom is going to wind up. She says that this will continue to worsen and eventually mom will become dangerous and might injure herself or others and she will need to be in a memory care unit. She says that dad will suffer because of the worry and having to try to look out for her.
I told the nurse that mom has not been taking Namenda and also about her rages and my concern for my father since she yells at him all the time and is currently demanding he go to bed at 6pm because she wants to go to bed at that time. I told the nurse about what happened on Christmas Eve.
The nurse says they treat dementia patients all the time and that she would not let mom find out I had called her doctor's office. She said they would talk to my dad about the situation and let him know about her diagnosis and also the doctor will be made aware of my mom's anger and possibly prescribe something to help with that - IF we can get mom to take the medicine.
I'm not sure what to think about all of this. I am wondering if mom is now too far gone to manage her own medication. What should I be doing to help? I am afraid that my mother is very vunerable and I'm worried about the impact all this will have on my dad. I want to do the right thing by my parents, but I'm not sure what that is.
It appears to be vascular issues, but I recommend asking the doctor about the test results and see if he has made a diagnosis.
Since you are listed on the HIPAA form (which is great!), see if you can meet with the doctor alone (or with your dad also) so you can discuss your concerns about your mother with him and discuss possible care plans.
You are making progress and taking steps in the right direction.
Thanks, Mary. I'm in Texas, too, btw.
This is what I found out:
"Microvascular ischemic changes are related to small areas of infarct in the very small perforating vessels in the deeper parts of the brain (the white matter)."
I had to look up "infarct" to find out what that word means and it means tissue death basically. I also foiund out that microvascular ischemic changes can be caused by hypertension or high cholesterol - both of which my mom has had.
In a way, it is kind of a relief to know what might have caused this and that it was not caused by heatstroke.
Atleast now you know some of what your dealing with. Sounds like you need to get with your Dad to figure out your game plan.
Start checking out care homes,nursing homes whatever you want to call them.
Your Mom isnt going to go along with anything dont discuss it with her.
You need to keep her safe and your Dad safe.
Its hard,I know!
My Dad scored a 17 out of 30 and 2 or 3 questions with queing. Sigh
I edited this I typed 14 but meant 17
Oh yeah Yay the edit button found its way home
ABSOLUTELY do not leave your mother in charge of her medications. Even those with very mild dementia can't do it! She shouldn't even have access to them.
I think the wording in your report sounds like what we got on MIL a few years ago ... it meant that dementia was from small strokes ... TIAs they are called ... so falls into the Vascular Dementia category ... but, again, talk to your doctor to see how he labels it.
I was told that Vascular Dementia follows the same path as ALZ ,,, but the difference is that with VaD you have drops (in memory ability) and then plateaus which can last for quite a while ... then big drops ... but with ALZ, it is more like a slow, steady decline ... so like the angle of a slide on a playground ... but VaD drops, then levels off, then has a big drop, then levels off ... it is an emotional rollercoaster so to speak ... not that ALZ is a piece of cake.
But, unfortunately, they both end up at the same place ... dropping down toward the playground sand pit ... using my illustration.
As soon as possible, I think you should get control of the meds ... and have them administered to her ... watching her swallow them ... my MIL got tricky a few times and I found pills hidden in her room ... they had been in her mouth, but she was somehow able to take them to her room and attempt to hide them.
Glad you are on the HIPPA form ... talking to the doc is a great idea ... Betty
Macy, I think this means you need to work with your dad, if he is willing, to come up with a care plan for your mother. She is no longer able to make good decisions for herself. This is a tough place in life, when you have to assume the responsible role for a parent. But your dad should be able to shoulder some of the responsibility.
You might want to call the 1-800-272-3900 helpline and see what facilities and services are available in your area.
I am sorry for what you have learned. This is not easy, but you are not alone.
I would say that yes, she is too far gone and has been to take care of herself.
Has she been tested for a UTI, the culture for it? A UTI will make EVERYthing worse.
Have you heard back from the doctor / nurse? I wonder if she shouldn't be admitted to the hospital?
It might sound drastic, but here are some issues which might be affecting your mom which a hospital might be able to treat better, faster. I wish we had gone with my mom to one, last year. But talk to the doctor, I imagine he would admit her if she went? Plus, if I understand things correctly, she could go to a care place afterwards from there...
Anyway - it sounds like your mom might be dealing with some things which need to be addressed fast, and she can't be at home to take care of herself, nor can your dad.
I did, and it was HARD!
1) Blood pressure (for cholesterol, I didn't want my mom to get statins...there are other ways to address that)...my mom's BP skyrocketed to 200 at times...and then her behavior was worse.
2) UTI? has to be checked out
3) Med adjustment - well, where they give her her meds and see how she does
4) Any other nutrient deficiencies, like Vit B and D...they'll also test her thyroid, her TSH, but I'd also ask to have the free T3 and free T4 tested
MacyRose -- I am so sorry that you are going through this. You have made a big step by talking to the nurse and getting to the bottom of what is going on. It's a really good thing that you are on the HIPPA form. Was that a form just for that doctor? If so, try to get your mother to sign a general health care proxy as well. It could have your dad as HCP and you as an alternate. It lets you talk to the doctors, but it also is critical if your mom is sent to the ER and your dad is not available.
If I could suggest that you make a copy of her medicare and insurance cards, back and front and keep them handy at your house. It helps to be able to snatch those when you are on your way to any emergency. And you should have a copy of the HCP. It helps to bring that with you as well.
I hope that you don't have too much trouble getting your mother to sign a POA. It is very important that you are on it, not just your dad. I have seen too many people who say the ADLO is still going strong, but the caregiver spouse dies suddenly. Sorry to tell you that. You won't be able to do the financial things that you need to do without being POA.
Some people have everyone execute POA's at the same time... "Everyone should have one... It's about time everyone had a POA..." I had my parents execute POA's when they were going on a trip and had to forward the mail to me. I told them that I needed it in case I had to take care of anything financial before they got back, which was true. Now I am so glad that I did.
MLB61, thanks for that info. I have wanted to do this for some time, but in my family it is not that easy.
I never imagined my mom breaking her hip, though.
In fact, if I had gotten this stuff signed, and then had my mom put in care place, so to speak, I have no idea the grief I might get.
Instead, now is the right time to get these things done.
I did contact an elder care lawyer, and hope to get there soon for a consultation.
it's really a good idea for people to do these things at a certain age. Once past a certain point, it can be hard.
If you get a colonoscopy at such and such age, you should get these other things done, too. Perhaps even review them every year, in case things do change in the family.
MLB61: There are several things complicating matters.
1. I live in a different city about 1 hour away from my parents.
2. My mom hides her meds somewhere in the house and my dad doesn't know where she keeps them. He has been trying to find out for 4 weeks now, but she's a sly one and has not allowed him to track down where they are. I also know that for 2 weeks, she hid the Namenda in a cabinet in the kitchen - and dad found them there because he was trying to convince her to take it and she told him she couldn't find it, so he searched the house and found them in the kitchen cabinet. But then she moved the Namenda again - who knows where - then tried to give it to my dad.
3. Mom's doc is going to have a secret chat with my dad on Monday and tell him it is time to start figuring out where mom is going to be placed because she is going to have to be placed sooner or later, because what she has is incurable and will only get worse, even with the Namenda. I'm am hoping after that chat, my dad will help me get a POA from mom and a medical POA.
4. Mom is a control freak personality. She has told dad he is NOT to talk to her doctor. She kept her test results a secret from him and me. Dad is actually scared to cross her because she gets so crazy when she is angry and she will make his life a living breathing hell. I'm worried about my dad, too. I'm worried about the stress mom is causing him and I'm also worried she may lash out at him physically, like she tried to do to me a couple of months ago.
MacyRose -- You are at a very difficult point in this journey. You know that your mom needs help, but she is fighting it tooth and nail. She probably knows that something is going on, and she is trying desperately not to admit that her life has to change. If she is a control freak anyways, AD can make that 100 times worse.
Have you read the article called "Understanding the Dementia Experience" by Jennifer Ghent-Fuller? Google it. It is long, but so worth reading. It will give you a window into your mom's world.
At some point, there will be a situation that your mother will not be able to handle. Either she will be unsafe or she will threaten someone. Unfortunately, that is when things will be out of her control. She will either end up in a geri-psych ward (not as bad as it sounds) or in the hospital. I hope it doesn't get to that point. Please know that it is the disease that is making this such a frustrating situation for all involved.
A quick suggestion...have your father contact the pharmacy...find out when the perscription(s) need to re-filled...he picks them up and your mother never again has them in her hands. If/when your mother starts to rage say that this is how the doctor says to handle the meds and that you will check with the Dr office to see if the management should be changed. Do not argue ...blame an outsider!!!
MLB61: Thank you for your suggestions and support. Yes, I've read "Understanding the Dementia Experience" and I gave a copy to my father as well and he has read it. He has said quite a bit about what is in that document. I talked to dad today and told him what I did (calling mom's doctor's office) and what the nurse told me about mom. He says that mom is determined that he not accompany her to the doctor, so if she won't allow him to go with her, then he is going to make his own appointment and go see her doctor by himself. I told dad what the diagnosis was and what it means and also that the nurse told me that mom will never get better, that she has permanent brain damage and she will only get worse and that eventually she will become violent and dangerous and need to be put in a place where she can be protected from hurting herself and others. I also told him the nurse says it is time we get a POA and that all of this is what the doctor wants to discuss with him. Dad is someone who would rather know than not know what is going on, so at least from that standpoint, he and I can work together to try to help mom.
jfkoc: Thank you for the idea. The thing is that mom gets really angry and threatened if dad even asks about her meds. She currently believes that dad and I are plotting against her and plan to put her in a psychiatric hospital - which is completely untrue. She has told my dad that he is NOT ALLOWED to talk to her doctor. Fortunately, she has completely forgotten that she signed a HIPPA form and put his name and my name on it as people who the doctor can discuss her care with. We're going to have to see how things go. Somehow we're going to have to get her to take her meds, but it might take an outside person to make that happen. I just don't know for sure yet.