Diagnosis of MCI. Although I provide detailed examples of indicators of dementia, he never includes these in the official visit notes. Instead, he only writes mild symptoms like “memory issues.” I am concerned b/c this last visit was fiction: dr wrote “patient knows medical history and medication” which is completely impossible for him at this point! I was not at this appointment, but having been his caregiver for the past 5 years, I know he's unable to name a single prescription medication, let alone tell someone what it does. He confused blood pressure and blood sugar all the time and he thinks cholesterol is an inner ear condition that affects balance. So I am confused why the doctor wants my uncle to seem more mentally healthy than is true. I have tried to speak to his medical assistant about this to ask, but my call has gone unanswered. Advice?
Gina,
You obviously love your uncle and want what's best for him, and you are also obviously VERY frustrated with the VA system that seems to be making your caregiving goals almost impossible. I read Isthisreallyreal's post, and I got an entirely different vibe than you did. I saw nothing condescending or argumentative.
Look... These are very difficult topics with many possible solutions, which is why this message board even exists. We are all just trying to give advice based on our own experiences. You don't have to take the advice, and you can even disagree with it, but know that we are all just trying to help.
What are the detailed clinical signs of dementia that you've observed and reported?
I don't think it's unreasonable that a doctor will not give official status to reports coming to him from a family caregiver. If he doesn't observe the same things himself, he's not going to put them on record. That doesn't mean he won't check things out if you bring them to his attention but you can't insist he agree with your conclusions.
The easiest way to discuss this with the doctor would be to make another appointment with him and attend it with your uncle (and your POA documentation in your purse, just in case). Would your uncle agree to that?
Does your uncle want to go to a nursing home? What are the shortfalls in care that are worrying you?
You asked what symptoms I have seen? I have been keeping a daily journal since Jan. 2019, and he has displayed just about every warning symptom related to dementia; intermittent confusion, lack of judgment-esp. regarding safety, memory loss, repetitive questions, inability to handle simple math, confuses time of day(am/pm), moodiness, quick to anger (very much out of character for him), yelling, temper tantrums, manipulative behavior, loses items and says they've been stolen, inability to sleep through the night. I also suspect he has trouble following conversations, because he used to be extremely talkative and lately he's been really quiet and wants to be alone mostly.
Everything I've read says early diagnosis is important with dementia. I did ask his doctor before about his getting medicine for it, and was told he didn't want to give him any more meds. The doctor did prescribe gabapentin to help him sleep and calm down, but that's all. Privately the PCP would admit to me my uncle's symptoms sounded like dementia, but he wouldn't put those concerns in the official visit notes where he lists my concerns.
It matters because we are trying to transfer him into a new residence, he's in assisted living right now, where he will get a higher level of care. His doctor is making him sound more capable and stable than he actually is. That may help him get placed, but it will be in the wrong kind of facility.
He is in a wheelchair and TOTALLY noncompliant and in denial about being a severe fall risk. He has fallen 9 times in the last year when out of the wheelchair and still believes he doesn't need it! He walks whenever none is looking and when confronted, makes up stories saying "his balance was fixed by the MIR machine which found cholesterol in his inner ear." Or, blames me for tricking the doctor into putting him in the wheelchair.
I tried taking him out of the VA system for a second opinion and testing for dementia, but he refuses to go. So I asserted my boundaries and refused to return to the VA or help him with their paperwork. I had to pull back because he yells at me and told me, "I don't tell anymore, because after the yelling, comes the hitting." I'm afraid he will hurt me, so I won't go anywhere alone with him alone anymore. It breaks my heart, but I don't feel I have any other option. There is just too much drama, stress and I can't let him beat me up.
I'd like to move him into a more secure facility so I don't have to worry about his doctor visits or safety. He has to leave the AL where he is anyway. (Another story-too involved to get into.) And my conscience wants to report the VA PCP for negligence but despite my research, I can't find out how to do that.
Oh, and, yes, my uncle very much wants to get into this VA facility in Fresno we are trying for.
I have no insight into the graduation status of doctors at the VA vs. those in private practice, but I do believe that VA doctors and especially the staff and technicians are there because they truly want to help Veterans. And if so, and they're combat Veterans as well, they've seen a lot more serious situations than dementia.
I know nothing about their educational background, but I do recognize that their experience is broader, especially if they're combat doctors, than would be found in the private sector medical field.
If anything, and if the doctors themselves are Vets, they may be triaging their patients' medical issues and with their heavy caseloads and schedules, may focus on their patients' most serious issues, such as those with combat wounds.
Have you provided the VA doctor with copies of diagnoses from nonVA doctors? If not, has the VA doctor given any tests, performed any analyses, to document dementia?
W/o being critical, what is your goal from the VA treatment? Do you want dementia meds, treatment with VA doctors for dementia?
When I last registered my father, I became aware of a participation with private sector doctors, by which notes were shared. I was asked to and did provide histories from my father's primary doctors. If I recall correctly, both private sector and VA doctors provided each other with updates, so that my father could continue to see his regular doctors w/o the necessity of a trip to the VA.
I'm curious though how you were able to know what the VA doctor writes in his notes. I've never asked, but I'm not sure that our VA would even allow us access to case notes. Also, did you provide him with a copy of the nonVA medical diagnosis of dementia?
If you don't feel you're getting the help you need from the VA, I'm assuming your uncle has Medicare to cover private sector treatment. Is this a possibility for him?
I can get any record of his from VA b/c I have PA.
You keep talking about him walking and falling because he doesn't think he needs a wheelchair. This is going to happen no matter where he is. They can not strap him into his wheelchair or bed, it is against the law. Most states don't even allow someone that falls out of their chair to be restrained in any way. It is such a balancing act that no one has really figured out. People have died from restraints and caregivers have misused their ability to restrain a resident. So, no restraints.
Can I encourage you to be prepared for falls and hope that they aren't tragic. If you can not provide the care for ER visits, then don't do it. Sometimes we just have to step away when it all gets beyond us.
Have you called the local area on aging and asked for a needs assessment? This may be the form that gets him more care. I don't think I would push for a MC unit, he may not need that yet. Let the professionals say what level of care they believe he needs based on the assessment. They will go to his house and do the assessment so he can't refuse to go.
Another thing that I would be pushing for is a test to check for UTI, I would insist that it be cultured and not the dipstick that so many facilities use. His change of behavior is an indication that he has an infection and sometimes we have to say, this is what he needs to rule this out.
(I say this because we helped an elderly woman that got her car tangled up in the crosswalk and she said she was going to a wound care appointment, so we took her and she was hours late. We said that we believed that she needed medical care and took her to the ER. Well she said she didn't have anyone to call, but she was married and didn't want her husband upset. We stuck around and the ER staff was scratching their heads, don't know what is going on. Well my husband kinda blew up and told them that she apparently has had a stroke, did none of you think of that?!? Yep, a stroke and they had her medical records and we had just met her a couple of hours ago and we could see the signs of a stroke but the clever ER staff was clueless. My point being that you have to be active in the care you receive or you may fall through the cracks.)
I wish you luck getting your uncle the best care possible.
I caution you not to jump to unwarranted conclusions in your eagerness to provide "counsel." Not only are you 'way off base' on this, but you have caused offense where it was not necessary.
No matter how frustrated I have been, I have always treated my uncle with the utmost love, kindness, and respect. I have been working very closely with social workers from the Alliance on Aging and his Day Care program. In fact, a needs assessment WAS made by a team of medical professionals (physical therapists, visiting nurses and social workers) referred by the doctor to whom I went to for a second opinion. They were the ones who decided he required a SNF, not me.
As to a UTI, my uncle does, in fact, have stage 4 kidney disease. The second doctor wanted to send him to a specialist for a workup since no one has done this in several years and he is anemic. But of course, my uncle refused to go. The VA doctor ignored my question when I asked about whether he planned to treat the anemia.
Your insinuation that I am not active in my uncle's care, is not worth mentioning, since it is so obvious that is precisely what I am attempting do. Perhaps you really don't have a clue just how hurtful your post was.
He can be self pay and go to his own neurologist for an evaluation and/or a GP to evaluate his other issues.