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.
I feel quite bad saying "out loud" I hope my mum will pass away before the dementia gets bad. It almost feels like I am a bad person so thanks for your feelings too.
When you're deciding whether or not a particular appointment should be made and attended, a question you might like to ask yourself is "are we just looking for trouble?" But be upfront about it: if you don't see the point of a particular appointment say so, don't just not go. Apart from its being plain good manners, of course, there may be a point to the investigation that you weren't previously aware of and the practitioner should get an opportunity to explain.
Two other key questions are:
what benefit is this intended to offer my loved one?
what happens if we don't do this?
There comes a point when it's better to be guided by symptoms, to treat anything that is actively troubling the person and pretty much leave the rest be. We all of us, if someone stuck us in a scanner, are full of lumps and bumps and spots and blots; and we'll mostly die with them, not of them.
I personally have had cancer twice and a heart attack. Thankfully I have good medical insurance. I challenge my Drs. Do we really need this? What are you looking to get out of it? IE the data. How will this data serve me? After my Colon cancer they wanted me to go thru a brutal chemo rutine for 6 months I asked a lot of questions, spoke to others that had had it determined the risks out weighed the reward. Then they wanted to do MRIs every three months. Not only the time but out of pocket expense. it was "precautanary". I asked my chemo Dr and my GI surgen we decided on every 6 months. Ask hard questions. Do some research on the internet at places like John Hopkins, medMD. Find people that have parents in a similar situation compare notes. Also use common sense.
Remember that many doctors treat Medicare like a cash cow. And they will milk that cow for as long as possible.
Sometimes I agree it is a waste of time, but upon further reflection, it has resulted in a better quality of life for them. For example:
Mom has COPD and asthma. Every spring she was landing in the hospital because she thought she was having a heart attack. Her pulmonologist provided overnight oxygen and a nebulizer and guess what? This year no hospital visit!
Mom also has aortic stenosis and vascular dementia. Not sure a trip to cardiologist every 6 months is necessary, but if her heart gets much worse, we will know how to help her and whether she may need hospice, so we keep that appointment. We also changed her EKG from being done at hospital to an in-home service, so one less appointment.
We recently saw a neurologist who eliminated one of her meds and told my dad the quack treatments he wanted to try were a waste. That visit was worth its weight in gold; dad has stopped with all the quack cures and since removing the one medication, she has not had a bad fall and her PCP has stopped being concerned about a pain med she takes as needed. The neurologist said I can bring her annually or as needed... we opted for the latter.
Dermatology every 6 months is a must for both parents as they have had many bouts of skin cancer; however we see a PA not an MD and appointments are scheduled back to back. Mom has had 2 cancerous growths removed from her legs in the past year.
My dad has had prostate cancer for 20 years... his treatment is a once a month shot. However, his kidney function is also Stage 4. Urologist convinced him to see a nephrologist rather than PCP. In a few months, his potassium levels and blood pressure have returned to normal for his age, where the PCP had not had success and it looked like the end was near.
Altho dad also has congestive heart failure, he does not see a cardiologist. In this case all three of his doctors are monitoring and there is little that can be done at age 94. He takes so many meds that one more would probably do more harm than good.
So to wrap this up, there is benefit to the specialists, to a point. My bottom line is whether they improve quality of life. My dad will not do dialysis, so we know the limit there. Our parents have the right to choose what care they want and do not want, but I suggest talking to them about their healthcare goals so you can see if their doctors and treatment plans are aligned. In my dad's case, he wants to outlive my mom...so sweet. Whatever it takes to work toward that goal. To meet that goal, he had to accept going to a nephrologist. His urologist told him if he wanted to outlive his wife that's what he needed to do. Smart man!
She broke her hip Oct. 31 last year and had surgery. She was not compliant with the things they needed her to do after the surgery (not crossing legs past the mid-line was the worst! The nurses in the hospital pretty much gave up on that on post-op day 2) and then, not very compliant throughout rehab stay with anything the therapists asked of her or restrictions they gave her -- result: she has pain in that leg (and likely will for life), limps badly and can't be on her feet long, will require a walker instead of a cane - probably for life.
We've been to several follow-up appts. with the Ortho who repaired the hip. They are always a battle because I have to take her to his office, one town over (45 minutes away) because he's not in his local office on the one afternoon I have available each month. She doesn't believe it's the same doctor who did her surgery and so it's a battle for a few weeks leading up to it ("I don't know why calico insists on taking me to HER doctor in that other town, I need to go right there on 10th street and see MY doctor" *sigh*) She complains to all family members who come near her.
And then the appointment is literally: nurse takes vitals, asks about meds, they take an xray and then Dr. comes in "the hip looks great, you are doing good. See you in XX months" and out the door. 5 minutes with the doctor, tops!
She likes the attention from the staff & doctor, she LOVES picking fights and stirring drama with everyone over it being the "wrong" doctor, and despite her complaining about the drive - she loves an excuse to get out.
For all the things she mixes up and forgets, she never forgets a doctor's appointment - so as long as he says the words "See you back . . . " then she's going to set the appointment. I just think it's such a waste of time and money :(
See, I look at it this way. I am the one driving and being put out. (my DH doesn't look at it this way) And then when they don't comply....
Last fall my mother had a fall at 86. It wasn't a "bad" fall compared to some others she had experienced in the past, but this time the leg injury was something she was unlikely to ever fully recover from. The surgery required to have any chance at a full recovery is difficult and risky for someone 40 years old. For my mother, odds were about 50/50 complications would be fatal or require an above knee amputation - not even considering that the anesthesia would likely degrade her cognitive functioning greatly too. I made the switch from wanting treatments to restore "full" function to conservative treatments (like PT) to provide "good enough" function and allow my mother to be reasonably comfortable. She will never walk normally again, but she can walk a limited number of steps every day with the help of a walker; too many steps and her leg swells and is painful. She can transfer from the bed to her wheel chair, take it down the hall to the open common room, and pull up to her favorite spot at the dining room table and read the newspaper in the morning sunlight.
That transition, where we change from wanting our LO to get "better" to wanting to maintain as much comfort as possible while acknowledging that he/she will never be "well" again is confusing and painful and very sad. Even after you make that transition it will come back up every time your LO faces some crisis. Keep in mind your parents' wishes and keep a comfort care plan. Quality of life is better than quantity.
for me it boiled down to how much time do these folks have left? They’re miserable enough as it is. Should their last months/year be spent getting hauled around to hospitals and specialists? Should dad have 12 consecutive days of radiation then 3 procedures for plastic surgery? Should mom have all her teeth pulled and get dentures at 86 ?
mom died about 6 weeks after the dental guys wanted to pull her teeth. Dad is in memory care. They put a cream on the spot on his face daily. I just paid a bill to some telemetric cardio group in Houston Texas her doc ordered 2 years ago.
its hard not to get caught up in the whole medical establishment sinkhole. We feel guilty if we don’t do what each and every doc says. I’m not anti doctor. They’re just doing what they’re trained to do but it can get ridiculous.
I am currently reading a book someone suggested on this site: Rethinking Aging: Growing Old and Living Well in an Over-treated Society by Nortin Hadler. It’s a tough read with all the statistics that make my eyes cross, but he makes the case that we are over-scanning and testing ourselves unnecessarily.
I felt this way when my siblings and I were caregiving for our parents prior to them both entering a nursing home. It was a revolving door of appointments. My brother who had medical POA was afraid to second guess the doctors. I remember asking an 86 year old woman who lived in my neighborhood how often she went to the doctor, and she said that she saw one doctor once a year for a checkup. I couldn’t believe it!
Within reason, I would respect your parents’ right to say no to numerous scans, tests and appointments, especially since they can do so many ADL’s. My parents had both moderate dementia and very little mobility, so health decisions had to be made mainly by us. I think this is where the ambivalence comes in to play when you have to make health decisions for someone else who is incapable of doing so. I think we tend to err on the side of caution and end up participating in the over-medicalization of the elderly.
I'm going to check out that book, thanks for the recommendation! The cardiologist was thinking about putting a pacemaker in my 89 year old father and I thought to myself, "how long do you want this very difficult and unhappy man to live?!".
I am at a point that I no longer care if something serious is found. I am not going to put myself through a series of meds that cause major side effect [had that journey when I had cancer].... to me it is all about the quality of life, not quantity.
My own Mom was the opposite. She wanted as many doctor appointments that she could shove into a calendar. She was still getting mammograms in her 90's. Seriously, if cancer was found she wouldn't survive surgery at that age, and chemo would be extremely difficult. But she wanted that reinsurance.
JoAnn, my Mom also had bladder cancer, and every year she went to see her urologist. The doctor told me that Mom wouldn't die from this cancer, it will be something else. Sure enough he was right. Mom would continue to make appointments. She did the same thing with her hematologist into her late 90's, guess she liked hearing from him "see you next year". Eventually he said she didn't need to come back, but she insisted on making an appointment for the following year.
https://www.theguardian.com/lifeandstyle/2018/apr/07/barbara-ehrenreich-natural-causes-book-old-enough-to-die
Me personally, cut back or out Dr. appts. Moms PCP was having her come back every 2 months. I asked her why, she had no idea. So I went with her. When he walked in and asked her why she was there, that was the last time she went unless sick or needed a prescription refilled. The hospital saw something on an Xray so took Mom to a Specialist. He didn't feel it was anything so we were just watching. Went every six months for a couple of years. When Mom entered an AL and her Dementia was getting worse I cut it to a year and stopped when she entered LTC. Same with a couple of others. When she got stable, allowed her PCP to take over. If problems popped up, I would have gone back to the specialist.
If ur parents don't want to go, then don't force the subject. Dementia people don't do well after a hr or so. I would not put her thru anymore scans. If she has cancer, are you really going to put her thru chemo. My Mom had bladder cancer. She was scoped every year. After five years it didn't come back. She was in her late 80s when I stopped the scope.
Thanks so much for sharing your experience, it really is so helpful to hear how others have managed this.
I'm definitely going to figure out a way to prioritise what needs to be addressed and what can be pushed to the side. My father goes to the cardiologist 2x year and that seems okay. PCP is every few months for both, but they don't mind that appointment because it is close and easy. Not sure about the retina/glaucoma docs. They have so many eye tests and my mum has no idea really what they are asking her to do...