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JuliaRose Asked August 2018

Anyone else caring for an elderly doctor?

They say doctors make the worst patients, and this was certainly true especially early on with my husband. I wonder if others are going through similar situations caring for a retired doctor. Do you have advice or stories? 


When my husband was healthy, he was completely focused on his role as a doctor - at the clinic, writing research papers, presenting at conferences, and teaching students. When he got sick, it was a shock to all of us, and dramatically changed his life. Now, at 78 years and unable to walk, see well, on daily PD dialysis, and easily fatigued, he doesn’t have any hobbies or interests to fall back on. He must be bored out of his mind, but avoids going out because getting in and out of the car is taxing and doesn’t like having people over because he becomes easily tired during the day (but then he’s awake all night!). God forbid he would sit down and do an old person activity when he’s awake. It’s a waste of time to even bring it up. He refuses to be medicated for depression (I’ve tried doing it without his knowledge, but there were side effects that prevented it from continuing.)


I think good old sunshine and interacting with people would help, especially since he likes joking with his doctors at appointments (his only “social” activity). Any ideas for activities that would bring out his doctor skills and make him feel useful? He always wanted to set up a volunteer clinic, but this is out of the question.


Now, he’s showing signs of early dementia, but getting him to a neurologist would mean he would have to resign himself to being inspected by another doctor with depressing and intrusive questions and likely result in a difficult diagnosis to absorb. He’d rather not know.


He and I have a really beautiful relationship (no kids, God’s plan), and all of this has brought us closer. But, it has dramatically changed my life, too, since I am now on 24/7 nursing duty, and I constantly have to be on my toes to keep him healthy and engaged. He’s smart, caring, and still has a lot to offer. I don’t want I’m to feel that his life is over.

DeeAnna Aug 2018
Contact the local animal shelter and see if they have a volunteer program in which the volunteers offer "social interaction" with the dogs and cats.  A volunteer sits in a chair for 20-30 minutes with a small dog or cat on their lap (put a small blanket on your husband's lap) while volunteer talks to animal and pets it or just holds it; or a volunteer walks around a room and stops and talks briefly with a large dog giving the dog a pat if the dog will allow it.  Usually this type of volunteer does not take any of large dogs for walks.
JuliaRose Aug 2018
DeeAnna, that would be a very good activity for him. Thank you so much.
surprise Aug 2018
My FIL was a doc and worked up to 3 mos before he passed - after all, his insurance was paid through 12.31! He'd leave his walker and o2 outside the back door to his exam room and hold onto the wall as he examined patients. One of them called my husband to tell him his dad looked so unwell during her appt!

Dad refused to accept his limitations - be glad for small blessings! Dad called one of my boys while driving his sportscar one of his last times. He did not manage to hang up and my son heard him being pulled over for going over 100 on a narrow road which we know has a severe S curve. He may have been trying out something he'd dreamed about, figuring he'd rather go out in a blaze of glory.

Are there any charities he'd like to start or fund? My FIL threw himself into writing letters & calling people to fund AED devices. He had hundreds installed in the rural part of his state before he died.
JuliaRose Aug 2018
I can totally relate to your FIL working right up to the end! This is the first year that my husband isn’t able to accomplish all the required CMEs to keep one of his medical registrations. You can imagine, it’s a real sore spot with him that his brain won’t work like usual. Do you have any advice? I’m tempted to just let the registration go and not deal with it. But then I think, no, I should find a number and call them to see what to do.

There’s a lot that he cant do that your FIL could. Mine hasn’t touched a phone in a few years, ever since his stroke ... Could the dementia have started back then? It’s awesome to hear about your FIL’s dedication to getting the AED machines.

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Ahmijoy Aug 2018
As an animal person, I know the therapeutic qualities of a pet. A small dog such as a Bichon Frise is very low-shed. A good groom every few months and you will have no shedding issues. They are very good dogs. Get a grown dog if you don’t have the patience for a pup. Many Bichon rescues out there.

I kind of understand the “ostrich head in the sand” about the dementia. However, he may need to go along with this for your sake more than his. Sure it’s invasive, but it’s not just him in this. If it is dementia, you need to know so you can prepare and research how to care for someone with this disease.

My husband isn't a doctor, but he has the same issues as your’s. He was a Type A business owner until a stroke and a nearly fatal heart infection have left him bedridden. We have a lift and a power chair but getting his 350 lb. self into my car has proven impossible on more than one occasion and unfortunately we’ve given up.

Have someone come in and tell him it’s to help you and not for him. Chances are they will engage with him as well. And, there are scads of different antidepressants. Can you try another?

I understand what its like to be housebound. Because my husband is, so am I. It’s not fun.
shad250 Aug 2018
Nothing wrong with staying home.
Daughterof1930 Aug 2018
There was someone posting here a few months back who used the name “caringfordoc” who was caring for, I think, her father in law who had been a doctor. Hopefully either she will see your post and reply, or you can search for her and send her a message.
It’s nice to read of your great relationship with your husband and your continuing desire to help him through this. I’d encourage you to look into getting some help in the home while your husband is receptive to it and before the caregiving becomes harder. Our community has a RSVP, retired seniors volunteer program, at the local seniors community center. Maybe if you can find something like that it could connect him with a worthwhile activity that would be of interest. And I do hope you’ll be able to get hubby to the neurologist, that info though hard to hear, could be vital to you in the time ahead
JuliaRose Aug 2018
Thanks so much! I’ll look for “caringfordoc.”
RSVP - There is something similar here, a volunteer organization for those 55 and over, so maybe I will check it out. I needed that encouragement, Thanks.
Brenn4 Aug 2018
Yes, My husband is a retired physician and retired about 6 months after noticing his memory was failing. He has Vascular and frontal-temporal lobe dementia. For a couple of years he refused to admit he had it no matter what kind of Dr told him. If your husband is at the beginning of it I am not sure it would do any good to force him at this point. Yes, there are medications, but they did not work for him. He still tries to self diagnose. It is awful being a caregiver and then one to your husband who is a Dr. My husband just wants to eat, sleep, read and watch tv. He stays in bed and does all of this except eating. He has become even more grouchy. This March after having so many mini strokes, he has to be placed in a skilled living home. My stress level has gotten better. Mine got depressed and his sleep cycle was backwards. It is very hard. I don’t force the dementia issue with him. It only makes him upset because he knows the outcome.

Llamalover47 Aug 2018
I have a fairly young (48 years old) RN friend who states that nurses are the worst patients. It's true because they know what is wrong with them when something goes awry.
I wonder if your husband could engage in a support group for patients akin to himself? You may want to consider.

wally003 Aug 2018
that's a hard one if he doesn't want to get 'out' and he doesn't want company.

you may want to research getting some help to come. if someone else could do the cleaning etc. it would leave you more relaxed to spend your time with him. so in other words. you may not be able to do a lot for HIM. but do something special for yourself.

is it possible at this time in your life to get a pet? like a smaller type dog with a mellow personality.? pets can help with depression.

and to your title question, I am not caring for a doctor....so just answering in general I guess....
JuliaRose Aug 2018
Thanks, Wally. I’ve had similar thoughts. A (hairy) pet inside the house isn’t possible because of the dialysis we perform throughout the day. But maybe visiting some place that has pets... like an animal shelter? Do they have programs like this? I Googled it, and didn’t get answers. If we get a fish or anything like that, i just can’t see him paying attention to it.

As for a helper around the house... I tried an agency through the VA. The women who came were sometimes helpful, but they were different ones each time with different energy levels and ideas of what it was to help. One in particular was very industrious, but the other 2 were not. And, I couldn’t leave my husband alone with them because none were capable of getting him into the wheelchair. (I think the dementia makes him not want to try new methods of transferring. ) Maybe I should look into a different agency.
moecam Aug 2018
My dad was a dr too - except for self-dignosed issues like skin cancer or needing hip replacements he didn't see one unless it was socially - because of this my mother's records were between useless & abysmal - when I took over her care it was hard to recreate her past medical history [other than my own memory] so if that is you, then please write out now what you remember for those who need to know

By the way when I requested mom's record for the hospital she was in, the dr she had seen in recent years sent that she had breast cancer - the hospital could not find where any treatment had been done ... that's because she didn't ever have it .... so everyone needs be on top of their own records & anyone that they would need to care for because this can be where mistakes are made - bottom line her 'breast cancer' was someone else's that was misfiled - NOTE TO EVERYONE PAY ATTENTION TO YOUR OWN HEALTH RECORDS
Cats4Ever Aug 2018
That's like I had a heart attack a few years ago and a stent was even put in. VA can't seem to find the records of when it happened. I think if I put in a formal request, might be able to find them, but still, you know?
CaringForDoc Aug 2018
Hello Julia,
If you live in Michigan, let’s get these two together! I feel for you and am going through a lot of similar parallels you describe. In his healthy years, Doc was always dressed to the 9’s, polite and on the ready to help anyone and everyone. It’s ironic that now he cannot help himself, and doesn’t realize his deficiencies. No one has told him he has dementia and if you ask him if he has incontinence or problems remembering, he says no. Total denial. He never was one who socialized much, and since we moved farther away from the city (to afford a home that accommodates his need for bed/bath on the first floor), he just sits on the couch and watches tv every day. He knows how to get up and feed himself, but can’t do anything else on his own. Doc was always known for his sense of humor, and still shows signs of that guy who made us all laugh - but so often, I see him wearing the same angry face, staring blankly, and it’s so uncomfortable. We wanted him to get used to others caring for him because it is getting overwhelming for us, and took him to a doctor for the first time a few months ago. We started with physical therapy to help him get around the house easier without holding the walls (he refuses to use his cane). The physical therapist told us he needs way more, so now we will have an evaluation done to assess his cognitive abilities. Doc was not financially responsible, and has extremely limited means for any care. The cost of care is astronomical, and as you point out, it is not always helpful. Allowing strangers into the home is extra concerning for us since we run a law firm and have extremely sensitive info laying around (medical records, financial records, social security and confidential info). We are held hostage to his care, no vacations, can’t even do day trips because he calls nonstop in total confusion. As far as activities to keep him busy, have you tried looking into your community center or county services to see if they provide anything to seniors? We have a community center that has craft days, luncheons, speakers that come in, bingo, etc. sometimes they even provide transportation. We have not yet availed ourselves to these services, but I know they exist whenever we have time to take him. We have a dog that Doc likes to be around, but it’s just another obligation we tend to (not him), and he feeds the dog, which creates other problems (like the dog throwing up) - animals are wonderful, but you have to be willing to bear all the responsibility. I’ve often wondered why there is no “daycare” for the elderly and disabled. I wish I had more ideas for you, and of course, wish you strength and peace as you navigate through this storm. Don’t hesitate to reach out to vent or brainstorm anytime - big hugs.
JuliaRose Aug 2018
I wish we lived closer to you! We could have a get together of grumpy elderly doctors who live in denial of their personal health issues! Glad you’ve initiated the process of getting him a doctor and physical therapy. At least yours hasn’t had any major issues yet. Mine should have been seeing a doctor long before he was forced to go. Similarly to you, we were recently told to go to a neurologist by his doctor. Looking forward to a fun experience...
Oskigirl Aug 2018
My mom is not a doctor but an epidemiologist (PhD) so constantly worked with doctors in her career. Getting her to a neurologist has been next to impossible. When a limited test showed cognitive decline, she argued that the test bored her so she didn't try. When a scan ruled out Alzheimer's, she said, "see, there's nothing wrong with me." And she knows or used to know better. I understand your frustration. The hardest thing is to know that, if she wasn't so stubborn, we might be able to get her meds that would slow down some of the decline.

I wish you best of luck.

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