I am the caregiver for my 85 year old mum with dementia and 89 year old father with a weak heart.
Given their age, I think they are in pretty good shape. My mum has no short term memory and some delusions (she thinks my father has other women around). My dad uses a cane and gets tired very easily. They don't need help dressing, washing or eating and get around pretty well.
From conversations when they were healthy and younger, and also now in their lucid moments, they have both made it clear to me that they do not want any special medical procedures to extend their lives which I understand and agree with. Their primary care doctor also signed their advanced directives stating so.
I bring them to all their medical appointments and give them their meds. But there seems to always be more appointments "just to be cautious". Like my mum had a scan and it showed kidney and lung nodules. We followed up with CT/MRI scans and specialist appointments, but both doctors said it's probably nothing and do scans for a couple of more years to follow up. My mum is having more and more trouble following instructions which can make appts challenging unless the staff is v patient. My dad has extremely bad macular degeneration and the last retina specialist said there is nothing he can do, but still wants to see him every 6 months.
They really don't like going to so many medical appointments. Do I just not bring them? I feel like I'm neglecting them. My father told the primary care Dr that he doesn't want to go to any of the referral appointments and the Dr said he respected that and made note of it.
I understand not wanting extreme measures taken in the event of heart failure or something, but is not bringing them to medical appointments the same thing? Am I being neglectful in not pushing them to follow through? To be honest, I'd rather my mum pass away of something before her dementia gets severe.
I'm so confused and have feelings of sadness, anger, frustration all mixed together.
Thanks for listening.
We pared down my mother's appointments and specialists quite a bit during her last year or so of her life. In fact, one of the reasons she agreed to hospice is that it was an end to all those doctors' appointments, procedures and tests. She was even more sick of it than my sister and I were. She wanted to sit in her chair and read mystery novels and eat crackers. We pushed her only on things that were fairly acute and potentially curable, such as infections and obvious gastric bleeding.
There's no one right answer to this, but I'm satisfied with the choices we made for and with our mother, including foregoing certain referrals and treatments that would not have made a real difference for her in the long run.
My point is this: I don't think it's necessary to take your folks to tons of doctor's appointments, just as I don't think it's necessary for me to take my mother to this neurologist's follow up appointment. Palliative care should be considered at this point in life because let's face it; once dementia (which my mother has a 'moderate' case of) sets in, the quality of their life is drastically diminished. Add to that all sorts of other health issues and we can literally be at the doctor's office 5 days a week, with an occasional weekend at the hospital thrown in.
Just today, my mother was talking about all of her sisters and brothers who have passed away, and saying that her mother is always with her these days. She said she hopes to join them in heaven sometime soon. I hope she does too. Not because I want to be rid of her, but because the quality of her life is gone, and her pain & suffering has reached a very high level. Enough is enough. Try not to feel angry or guilty about your feelings, just accept that palliative care is the best thing for your folks at this stage of life.
All the best to you as you pass through this difficult time of life, my friend
https://www.agingcare.com/articles/palliative-care-how-it-can-help-your-aging-parent-achieve-quality-of-life-136281.htm
take charge of your life and what health is left and just say, NO!
I refused as a caregiver to sit in a waiting room and see a doctor to have their weight blood pressure and BP checked have a doctor look at them for five minutes and announce, everything‘s fine come back next month. I know they were getting a check from Medicare for that service but I did not have to be part of the game!
Now I manage care for a client (87) dementia, whose children want to take care of and fix every problem. She visits every specialist on the planet and is at the doctor constantly. I’m paid by the hour if that’s what they want. when they ask me I tell them, “frankly your mom is 87 we cannot fix the problems that she has”. They are just not ready to hear this, and they are still wanting to give me the appointments to take her to and payment for my time, so I indulge them! Their mother their choice, my job!
I'm going to start another thread about hospice care and how/when to go about it.
So we normally err on the side of caution, but we use our common sense about when to follow doctors’ advice. I’d suggest you do the same for your parents. Some follow ups are clearly unnecessary, some are just a way to make more money from something that is well and truly over, and some are to check for something that isn’t sensible to follow up anyway. Don’t feel guilty for using reasonable judgement yourself.
There is a treasure trove of experience on this forum and everyone is so kind to take the time to share. It strengthens me. {{{hugs}}}
Even though we are all taught that doctors knows best, they are all very fail-able. Bottom line is I can't force her to go nor can I force her to take any and all meds prescribed so when that day comes (and it will) I will not make her go to the appointments that she doesn't want to attend.
They would have high pressure due to anxiety in office, be given medications, fall over after getting up at night to pee. Be given surgeries not needed even, and certainly tests. They are the cash cows of the system and get passed from doctor to doctor.
I stayed out of my mom's care and now we both deeply regret it - she was just diagnosed with breast cancer and even at 84 wants to fight it within reason. If I had been more pro-active, she would have been getting mammograms every year, along with other maintenance care.
She didn't want to "fuss" and her primary let her get away with it. Now she wishes a little more fussing was done during those years.
you ask the BIG ... WHY.. whne you next go to an appointment
It seems specialists are scared of legal implications if they say, dont bother coming..
your parents sound like mine were a good decade ago, luckily we dont live in the land of health means money.
so if one has macular degeneration and there is nothing to do then really all that should be needed is the right to attend if any problems arise. I just see your post is one that your parents are being bled to death $$$ and energy wise for no reason and they dont want it anyway.
You are not being negligent you are being practical.
Good luck and hope the non necessary stresses get reduced