Continuing doctor's visits?

Fad marie

Hi All - I am new to this forum, but I've been reading through your posts and the advice has already been so helpful.  Taking care of a LO with Alzheimer's is overwhelming.  A little background... My mom is 76 and was diagnosed with Alz 4 years ago.  I guess she's in the moderate stage now.  She still is able to do most daily behaviors (e.g., get dressed, go to the bathroom, brush her teeth), but she struggles to remember to eat or even know how/what to eat. Language is her biggest deficit and we think she has Alz of the language variant.  She not only forgets words, but she struggles to communicate coherently.  Short-term memory is terrible as expected, but she still remembers the family, our names, how to golf, etc.  She did recently forget her last name, though.  That was new.  We have home health care for her M-F, 3 hours/day.  She lives at home with my dad who is 89 (and in decent physical/cognitive health).  I have two siblings, and we all live within 30 miles of my parents (with the closest 10 minutes away).  Given my job allows me much more flexibility with my time and maybe because I had the closest relationship with both parents, I have taken on most of the responsibility for care for my parents.  I have POA, etc.  I am the one who makes doctor's appointments.  I take my mom to the appointments the health aide can't.  I am the one who communicates every day with the health aide.  I do all the online ordering of anything they need.  I make food for them once in a while.  I visit once/week or so (my brother visits less than once/month and that frustrates me... but separate topic).  I live the farthest at about 30 miles.  My sister, who is 10 minutes away, visits a few times/month, but she has two teens, she works terrible hours, she makes little money, and her husband passed away in February at age 50.  So... to say she's overwhelmed right now is an understatement.    I'm also doing a lot of care of my sister in sorting through finances and helping with the kids after my BIL passed away.   

My mom is depressed about her situation.  She is lonely (she and my dad don't talk much).  She feels helpless.  She feels confused.  She doesn't like her health aide.  We like the woman who helps her, but my mom feels she doesn't need her and she's resistant to accepting help.  Many days, she stays in bed until the health aide leaves so she doesn't have to interact with her.  Typically, when I visit, my mom is still in bed at Noon when I show up, but she does get up and gets talkative once I arrive.  She is sometimes angry with me for not coming more often, not doing more with her, not firing the health aide, not getting my dad to be more helpful, etc.  But she is still remarkably reasonable and fair to me about how much I'm able to do.  She is ultimately just frustrated about her Alz.  

So the question I came here to ask is... to what extent have you all continued with medical care for your LO?  We are getting to the point where the doctor's appointments are feeling less and less important.  First, my mom hates most of them.  She gets so confused by them, and some of the procedures can be rather traumatizing for her.  Years ago, my mom chose to stop the mammograms and gyne visits (and we agreed).  She recently had a biopsy of her thyroid, and that was SO painful and confusing for her that this is what's led me to wonder if we should do these things anymore.  She really likes her PCP so we will continue those appointments 2x/year.  I also think the routine blood tests and urine tests that he orders are important.  But is there a point to any of the others?  Why do another thyroid biopsy of her nodules if thyroid cancer likelihood is 5%.  My H is an endocrinologist, and he agrees that further treatment there is unnecessary.  In general, she doesn't want to take medication.  And, like I said, she's relatively healthy so she hasn't needed much medication.  She was recently put on Lipitor and I think she remembers to take it?  She's losing weight given her struggles with eating, and they want her to do a bone density scan.  Should we make her do this?  She is refusing, and I've already canceled one appointment (the health aide was going to take her).  If I go with her, though, she will go.  I've also recently canceled the neurologist yearly appointment.  What's the point of that?  She wears an Exelon patch that she changes out daily, but there is no other medication they can give her at this point.  Why keep subjecting her to these experiences that she doesn't like?  I'd be very curious to hear others' decisions about "routine" or non-emergency medical care for a LO with Alz.   

Deanna_M

Welcome, Fad marie- I struggled with this very question a couple of years ago when my mom was in the moderate stages of the disease. She had so many specialists that she saw, despite being in fairly good health. She collected specialists like a hobby!

Several years ago, in a clear moment, my mom talked about how confused one of her friends was. She said to me, "If I ever get as confused as "Mary," I hope that the dear Lord takes me." 

When I heard that, I felt permission to let things run their course.  I decided to just do the basics: a primary care physician, an Alz specialist (twice a year check-ins), and the dentist. We decided against medical testing like mammograms, bone density scans, and colonoscopies, etc., etc. My goal was to keep her safe and comfortable.

When I am faced with a tough medical decision, I replay that conversation in my mind. It has not always been easy: my mom was hospitalized for COVID in January and I struggled to be at peace with all of that. I mentally said "goodbye" to her then. (end of story: she bounced back!)

Quilting brings calm

Fad Marie 

My mom is probably close to your mom in the progression of this disease. She still eats ok as far as I know.  Haven’t eaten with her lately.  Seems ok with the ADLs, but hasn’t done the IADLs for over 22 months. My parents are in assisted  living, rather than in their own home.  I visit somewhere between 1-3 times weekly depending on what they need that week. Dad still drives and wants to take themselves somewhere  daily. Mom is basically physically stable other than using a walker and so forth.  She’s 83 and her doctor hasn’t mentioned a need for a mammogram, colonoscopy, bone scan in the 23 months   I’ve been taking her to all her doctor appointments -  checkups, issues that crop up that cause her discomfort etc.

She doesn’t want to live like this, so I’m going to honor her wishes when something major does come along, since I have her medical POA.  Not sure my step/dad and/or doctors will agree though. 

M1

Welcome to the forum.  I agree in general with keeping things simple--my partner has extremely complex medical issues, but we are stopping most specialty visits and tests, and I'm considering stopping even routine dental visits (yet to be determined).

Regarding bone density specifically, I don't see the point.  Your husband certainly should have an opinion on that.  Probably makes sense to just assume she has some degree of bone loss, for which the simple measures would be to take calcium and vitamin D.  The more aggressive drugs (like Fosamax, etc.) are very difficult to take, and other options are infusions or shots, which would be even worse.  If she's a milk drinker, I wouldn't even worry about calcium.  My partner loves milk and loves milkshakes, so we leave it at that.  Vitamin D deficiency is extremely common in this country, though, so supplementation there is rarely harmful (there is such a thing as taking too much, but rare).  Again, in your husband's area of expertise.

If you do decide to do it, a bone density's a pretty simple and quick test.

Fad marie

Thanks for everyone's input.  This is helpful.  My mom went to the dentist this year (after year of nothing during covid in 2020).  Teeth were still healthy, although she did have a sharp tooth that was giving her some pain when she jabbed her cheek.  They filed that down after some difficulty communicating what her issue was.  I think we'll continue dental, but that's also something we're reconsidering.

As for the bone density scan, my H has weighed in a lot on that one.  As a doctor, it's hard for him to recommend against health care, but he understands where I'm coming from and also doesn't want my mom going through unnecessary procedures.  My mom is taking Vitamin D or calcium daily (I think!), and we were trying to get her to drink Ensure.  She was initially resistant, but I think she does once in a while at the urging of her health aide.  Point is, I don't know how much Vitamin D or calcium she's getting.  Last bone scan was 2018 and it was fine.  My H is more inclined towards the scan than I am.  He thinks that if it shows osteoporosis (especially given her weight loss... about 20 lbs over the last few years), we'd want to consider the shots/infusions to try to prevent a fracture from a fall.  But the shots/infusions would be so confusing and awful for my mom, he's agreed that if we're not going to do that anyway, there's no point for the scan.  My mom's balance is still decent and she's had no falls, but she does complain of balance issues at times.  So, it's the fall and the fracture I'm a little worried about, but I'm not sure that (low) risk is worth the extra tests.  I appreciate your input.  

Emily 123

I would say that if the historical results are fairly benign then ditch it. My mom is 91, has moderate AD.  She’s on her vitamins, 1 anti-hypertensive, her levothyroxine, Arricept and raloxifene for bone loss.  No more dexas, mammograms, etc. just 1 doctor’s and 1 dentist’s appointment/year. Labwork once a year, except thyroid levels, which were out of whack, so those are still twice a year. She’s a DNR if she drops, and wants just meds if she’s hospitalized (like antibiotics for pneumonia).  It probably helps that she was a respiratory therapist…

John2.0.1

The only good thing to come out of this pandemic is the acceptance of Telehealth.

Obviously some things can't be done by telehealth but a lot can. My mother's neurologist was only doing telehealth in the pandemic and then she went on sabbatical.

I frankly dread talking my mom to physical appointments. It's not just her dementia that she gets all confused but also her Parkinson's immobility. It can take 15 minutes to get in or out of the car. That's an hour right there. And her special wheelchair is heavy and can be hard to fold up and unfold by one person so I want one of my teenager kids along to help.

Do telehealth whenever possible.

And a nurse can be sent to you if she needs blood samples and such.

Fad marie

Thanks for the suggestion about continuing telehealth.  We did a few of those visits during covid (with PCP and neurologist), but I hadn't thought to do that again since they'd started seeing people in person again.  My mom was pretty confused by virtual doctor's visits, but it's definitely a lot easier to do with her.  I will consider that for any future visits that seem necessary.

harshedbuzz

I may have an unpopular opinion, but IME progression will mean falls as the brain is further damaged. A broken hip is often the beginning of the end for many with dementia and even a few frail elders who do not have dementia. For people with dementia, it can be an "out" that spares them stage 7. 

My aunt went into a AL and broke a hip/wrist which threw her from early moderate stage to end stage in an instant. She passed within about 3 months. While this certainly sad, there is a piece of me that is thankful she was spared the indignities of years in stage 7 with no quality of life as her next younger sister did. My younger aunt was completely confused, agitated, unable to eat or speak, with muscle contractures and a risk of bedsores when she finally died.

To that end, when making decisions with my dad, I took a conservative view on tests- I didn't authorize any scans or xrays that might offer information on which I would not act. I continued his prostate cancer treatment because he'd chosen to do it and because I though androgen deprivation might make him a little less challenging to wrangle. We discontinued supplements and statins in the late midstages. I stopped specialist appointments that weren't directly corelated with comfort- so no to the retinal specialist, dermatologist and neurologist but yes to his geriatric psychiatrist and the pulmonologist who kept him breathing comfortably. 

A blood test could determine if mom is vitamin D deficient.

Fad marie

harshedbuzz, this is consistent with what I'd been thinking.  You say it well when saying that you made decisions not to do visits that "might offer information on which I would not act."

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