Follow
Share

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 wouldn't just not take them, I would cancel the unneeded/unwanted appointments. As far as tests and scans go, I would ask the doctor ordering the test/scan what he expected or wanted to find and how that would impact treatment choices. If there's no way you would agree to any of the treatment choices then there's absolutely no reason to have the tests/scans.

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.
Helpful Answer (16)
Reply to TNtechie
Report
gkcgkc May 31, 2019
Thank you so much for sharing your experience. You are right, quality over quantity at this point - I need to remember that. And wishing/hoping they will revert to their old selves is pointless. And sad.
(4)
Report
See 1 more reply
It is very hard on the old folks. Doctors' offices do not take into account the amount of time it takes an old person to keep that 5-minute appointment for which Medicare gets $$$billed$$$.

For my FIL, it takes at least one hour for him to get ready to leave his apartment for any appointment. And, by the time he gets back home, he's exhausted and has to take an extra long nap.

Unless and until we the caregivers push back on unnecessary medical appointments and unnecessary spending by Medicare, nothing will change.
Helpful Answer (13)
Reply to NYDaughterInLaw
Report
gdaughter Jun 1, 2019
Not even mentioning the exhaustion of the good daughters escorting!
(6)
Report
See 1 more reply
When I finally got my folks in care the first thing I did was sign them up with the in house doc and dumped their long time doc who was constantly referring them to specialists all over the damn place. At this point my mom was a 2 person assist and dad didn’t even know where he was. The GP referred dad to a dermo guy for a spot on his face, the dermo guy referred dad to an oncologist who referred him to a plastic surgeon...................And they all wanted follow ups.

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.
Helpful Answer (12)
Reply to Windyridge
Report
gkcgkc May 31, 2019
Thanks so much for sharing your experience, there's so much to learn from others. I think we've been getting ensnared into the whole medical sinkhole, but I am going to make a point of asking more questions before we keep proceeding.
(0)
Report
See 3 more replies
Since ur saying "Mum" are u from the UK. Most of us are from the US but we have a few from the UK. Our healthcare is very different than urs if from the UK.

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.
Helpful Answer (9)
Reply to JoAnn29
Report
gkcgkc May 31, 2019
Just moved to the US a couple of of years ago. I switch between mum and mom. :)
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...
(1)
Report
Good evening,

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.
Helpful Answer (9)
Reply to Treeartist
Report
gkcgkc May 31, 2019
Thank you so much for sharing your experience. You are quite right is saying it's easier to err on the side of caution when deciding for others. I've been earnestly adamant to my own children about this exact situation - and they now clearly know my wishes so I hope they can avoid the guilt.
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?!".
(3)
Report
See 2 more replies
My 93 yo mother who lives with me has dementia/Alzheimers and doesn't do well at drs appointments at all. In fact, it's torture! She developed a small bed sore on her tailbone after a month long hospital stay. Home health visited her twice weekly to change dressings etc. It was healing but slooowly. She gained weight from 86 pounds to 110 pounds which helped tremendously putting some extra "padding" back there. Anyway the "bedsore" got down to a pinhole size that you needed a magnifying glass to see and no bleeding or rawness...for lack of a better word. However since there was still a lil hole home health asked that she see a wound specialist. They recommended a clinic but warned us of the long wait time there. I took my mother once a month. First couple appts were 2 hour wait time before being called back! My poor mother was miserable! She would ask patients waiting to be seen how to get outta there. It was terrible! Dr put her on silvadene cream which really improved it but then at the next appointment changed to something that didn't work and back and forth back and forth and even went back to a treatment that didn't work before ...crazy. The craziest part though was putting my mother through all that for a microscopic hole. The last time we were there our wait time was 4 hours!!! They had to literally pull my mother out of a wheelchair to a standing position to even examine her because she was so exhausted from the wait...and she was still mobile then. When the Dr came in I told him we wanted to be dismissed that it was just too much for her so he said return if didn't heal. I decided to switch her back to Silvadene cream which was working in the first place and the microscopic hole is now closed. Know this was a long story but my point is sometimes with all these appointments we just have to consider if it's worth putting them through all of it. My mother was one that never wanted to go to drs anyway when her mind was good. I've gone through the guilt trips too wondering if I am doing the right thing but sometimes we have to trust our gut instinct. Good luck to you know it's hard making these decisions
Helpful Answer (9)
Reply to Countrygal55
Report
gkcgkc May 31, 2019
Thank you so much for sharing your experience. Somehow it really helps to know others are in a similar situation. Last time my dad had a CT scan he fell asleep in the waiting room, it's really hard on these old folks!
(5)
Report
See 1 more reply
Great job with your parents, I honestly don't know how you do it all. Please do decrease the amount of medical appts your parents have. I don't know who could help you choose which ones to prioritize tho. I had similar issue with my mother, except that she was always adding another specialist for me to drive her to. It got absurd, between various Drs, dentist, grocery & bank trips, haircuts, lab work, ect
Helpful Answer (9)
Reply to Tiger55
Report
gkcgkc Jun 2, 2019
Thanks Tiger55! Somehow it's reassuring to know others are grappling with the same type of challenges. Yes, medical appointments are the the beginning - there are all the many other errands that need tending to! It's truly a full time job. I often feel like the maid, chauffeur, nurse, social worker all in one!
(0)
Report
gkcgkc- you said: "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..."

I have the same hope, too. My mother has Alzheimer's going on year 3 now. I hope she will die before she has to be bedridden and in diapers, and loses all her faculty. That's not living. That's suffering. She doesn't want that for herself. I don't that for her, either. And I don't think it's wrong or bad for that to happen. It will be a relief for her and everyone else. I share that thought with close friends and relatives who understand the horror of the disease and the struggles of being a caregiver.

So, don't feel bad for hoping for the end to come. Don't beat yourself up. You're not a bad person. You're a good, decent, and caring person.
Helpful Answer (8)
Reply to polarbear
Report
gkcgkc Jun 2, 2019
{{{hugs}}} polarbear, thank you so very much for your kind words. They mean a lot during these difficult days. I'm trying, I really am, but I fear I fall short of my best on most days.
(0)
Report
See 1 more reply
We had the same issue with my mother, who died last year. She got sick of going to so many doctors, and some of them she plain didn't like and refused to see. My mother was a very stubborn woman - you had to pick your battles carefully with her. And honestly, many primary doctors seem to think their job is to refer patients to specialists for every little symptom or abnormality. In her last few years, my mother was regularly seeing a dermatologist, neurologist, orthopedist, gastroenterologist, hematologist, cardiologist, nephrologist etc in addition to her regular doctor. She died of lymphoma but she also had arthritis, kidney disease, AFIB, coronary artery disease, diabetes, stomach ulcers, normal pressure hydrocephalus, and an assortment of other maladies.

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.
Helpful Answer (8)
Reply to CarlaCB
Report
gkcgkc Jun 2, 2019
It sounds like you did a great job caring for your mom, thanks so much for sharing your experience. It's certainly challenging, but I hope I will be satisfied with my choices at the end.
(2)
Report
My mother was just in the hospital for pneumonia 2 weeks ago and is now in rehab. She has had bad neuropathy in her legs for the past 20 years, which has caused all sorts of issues like falling, vertigo, and chronic pain. So, the neurologist came to see her, as is the norm in all of her hospital stays. She said the same thing all the rest of the neurologists have said in the past: Gee whiz, there's nothing we can really do for you because nerve damage is irreversible, yada yada. However, please be sure to schedule a FOLLOW UP APPOINTMENT after you are discharged from the hospital. Um, what for, exactly, is my question? This neurologist cornered me in the foyer of the hospital on my way out to the car, believe it or not, asking me when I planned to make this follow up appointment!! My mother is 92 and wheelchair bound, and incredibly difficult to schlep around. I can't do it alone, which means my husband has to take time off from work, and then we have to pay a gigantic bill, and for WHAT? This doctor looked at me like I had two heads when I asked her why I needed to schedule a follow up. Well, she said, so I can follow your mother's neuropathy, of course! Follow it to WHAT END?

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
Helpful Answer (8)
Reply to lealonnie1
Report
gkcgkc Jun 2, 2019
Oh lealonnie, how I feel for you. Thank you so much for sharing your experience, it's really a journey isn't? A journey not for the faint hearted. I'm definitely going to learn more about palliative care, I feel like I've gone into caregiving with zero knowledge, but I suspect most of us do. Sending you good thoughts and strength.
(0)
Report
See All Answers

Ask a Question

Subscribe to
Our Newsletter