My father in law has Vascular dementia, heart block, diabetes & prostate cancer. (wait & watch slow growing) I don’t expect anything to be cured at this point however I’m not ready to give up on him. He has lost a lot of weight, can’t communicate well about his needs or how he feels. So it is up to others to figure it out. When his BP was 90’s/40’s with heart rate in the 40’s at his afternoon Dr appointment, I asked the assisted nursing facility to take his BP in the afternoon. I explained since he gets his BP medication in the morning it may be making it go too low in the afternoon. As I would check his documented BP, I noticed there was no HR documented. I was concerned since in the past the Doctors were OK since his BP would go up to compensate the low HR. I saw there was no time of BP taken last week & all BPs looked higher. I discovered: They were taking BP before Lunch so they didn’t have to bother the caregiver twice. 1 for giving his vitamin. 1 for taking his BP. Yet the sheet they document this on for his chart clearly says “take BP after Lunch per family”! I was told there isn’t space to write the time on the sheet. The Dr didn’t order for the heart rate to be documented. His points of caregiving will go up if the more times the caregiver has to interact with him. They are not a skilled nursing facility. ..... Nevermind that they are missleading me and all who look at the BP recorded & thinking it was done after lunch. So I asked the Dr for a specific order to do BP & HR after lunch and to record the date, time and if HR is irregular. However he did not specify to “document” the time. Thus, we still do not know the time frame that his BP may be dropping. They have gone from someplace I trusted, to a place I don’t trust. There is no common sense. I also figured out he was not getting a snack in the evening. He eats when he likes the food. His meal exchange if he doesn’t like stuffed peppers or stir fry etc, is a peanut butter and jelly sandwich. Too many times a week. I believe they are giving him a snack of a half a PB & J now that I brought it up. They don’t communicate well with each other or family. They get their check every month & don’t seem to try anymore. This is how they have made me feel since I found the discrepancy of documented BP. How can I give accurate information to the Dr if they are dishonest. He continues to lose weight. He eats good when he has simple foods. It is not that he has given up on life. I don’t understand why I should have to go back to the Dr and try to explain he NEEDs to write the order to include the documentation of the time because they are an assisted living facility instead of a skilled nursing facility. I don’t know why “they” didn’t tell me that there was a problem with how I thought things were being done, or how we were led to believe as he keeps losing weight and having bad days.
You are certainly correct that we have to be advocates for our loved ones. It is also smart to pick our battles.
When does your FIL get his vitamin? Just before he goes to lunch, or mid morning? If it is just before lunch then there wouldn't be a big time difference between before and after lunch. Maybe 11:30 if they take it before lunch, and 12:15 if they take it after. But if I'm understanding correctly, you'd like it taken in the afternoon, maybe 2:00? I'm just saying be careful that you don't put a lot of effort into changing from one procedure that you don't like to another one that doesn't meet your request anyway. Or would it?
What do you think might change if you had all the bp information you want at the time you want it? Maybe change the time his bp med is given? So then his bp would drop later in the day instead of afternoon? Or might the doctor change the med completely? Can you discuss this with the doctor to get a clear understanding of the importance of the timing? Obviously monitoring the blood pressure is important. How important is the timing? How critical is having the HR at the same time?
Do you think that his blood pressure and specifically when it starts dropping has anything to do with his losing weight and having bad days? Did his doctor suggest that? Losing weight is very common in dementia, for many reasons. It is the nature of dementia to have good days and bad days, and as it progresses the bad days become more frequent. That is the nature of dementia.
My heart goes out to you. It is very distressing to watch the decline of someone with dementia.
Keep advocating for FIL
Pick your battles
Hospice might be the best level of care right now; Hospice is NOT giving up. Hospice is getting the patient the best palliative (non-curative) care that they need and all the comfort that can be had. Plus counseling for the family about what can be done...and what doesn't make a big difference.
What I hear in your post is that you are still in "fix-it" mode; you understand in your head that what he has is life limiting, but it seems like your heart hasn't accepted that yet.
Be well, and let us know how this is going. We care here AND we learn greatly from each other.
In late stage dementia, I know that my LO is not going to recover. So far, she hasn't lost weight, but, I know that will likely come next. With the progression, she'll likely encounter weight loss and have eating difficulties. Can you see if they can change his meal exchange to something else? Is he on soft food yet?
My father started having low blood pressure so the doctor told me to give my dad his blood pressure medicine only if his blood pressure was on the high side. I also took his blood pressure at night before he went to bed.
The log should be taken to the doctor's office. You would need to get special orders from the doctor to change anything.
My father also had vascular dementia. Most of his medication was stopped because it wasn't helping him any. His doctor said as you get older the drugs react differently.