Mom refusing to follow basic medical advice

SEM_BOS

Mom has mid-advanced Alz.     She's in memory care.   While often confused, she's also a very social person and has trouble sitting still or being alone.   She spends most of her time in MC wandering the halls and/or sitting and talking with the handful of people on her floor who are capable of having a conversation.   

Recently her feet and legs have been swollen, sometimes hurting and other times not. We've made the rounds of her PCP and a few specialists who have prescribed some meds, etc.   However one common piece of advice is to stay off your feet, and elevate your feet above heart-level when possible.

Last night after dinner, and then another 20 minutes of cajoling, I got her to sit in a recliner and I adjusted it so her feet were up. She didn't like the upside-down feeling and immediately adjusted the recliner so  her feet back down closer to the floor (but insisting, wrongly, that they were still above her heart).  Note that I've also tried to get her to lay in bed with feet on the pillows, but it's also a struggle.

My resentment kicked in a little bit, as I'm anticipating:

  a) Her complaining more, to me, when her feet/legs hurt

  b) Her demanding, or an actual medical need, to do another round of doctor's visits (PCP, vascular, cardiology, tests, xrays, etc)   Meaning, I take time off work and drive  her to these appointments.

She has a long/good relationship with her PCP so we've kept that doc instead of using the MC's visiting Dr.  And I dont' think the MC has specialists like vascular or cardiology. (They have a podiatrist and they can and do draw blood and do x-rays at MC). 

I don't expect any miracle solutions, but was feeling very resentful last night (and ashamed of my resentment).    I also don't expect her to change and decide to elevate her feet enough to help?  

 Any tips for that? Or tips to help me manage my resentment/frustration?

Thanks much-

Quilting brings calm

I would admit to myself  that she’s not going to sit with her feet above her heart. Truthfully most of us don’t even when we ‘put our feet up’.  We fudge by  lying in bed and maybe putting a pillow under our feet or by sitting in a recliner with the foot position in some comfortable spot.  And we aren’t cognitively challenged. 

She is going to get up and sit back down every few minutes, walk around etc.  it’s just the reality of her personality and her brain being broken.  There’s not really anything you can do - you can’t physically restrain her.  The MC definitely can’t. 

I would tell her that the doctors have said she needs to do x and that’s the recommended treatment for her legs.  That’s she’s had the X-rays and other diagnostic tests and that there is no need or basis to do them again. That’s also the reality until some other symptom or a fall or other injury.  You’ve done your due diligence - it’s not that you are being negligent.  You aren’t.   Keep an eye for additional symptoms, but don’t run to the doctor every time she mentions this same issue.  

Whenever you are with her in her room, encourage  her to sit in the recliner with her feet up even just a little. If there is a TV show that she will watch, put it on so that maybe she will sit for the length of the show.  Just act like you are doing this for her comfort while watching the show, not because she needs to.   Telling her that she has to do something probably causes her to choose not to do it. 

  

SEM_BOS

Thanks. I almost forgot.  Along with her complaining about physical discomfort and wanting to go to the Dr. she's also going to keep demanding to go shoe-shopping!   

She wears size 8's and in the year she's been in MC, me and my fellow care-givers have taken her shoe-shopping a few times.  She now has some 9's due to the swelling, and most of those are starting to get too tight.

As a funny aside:  

It's funny when she tries on a bunch of shoes, then looks at her old ones, asks to try those on, then says they're great!   

After one long session of trying on dozens of shoes, including mis-matched pairs and shoes on the wrong foot, I tipped the shoe-sales person.  They were very patient and deserved it.

loveskitties

You might want to check with PCP to see if compression stockings would help with the swelling which in turn causes pain.

My mother, who does not have dementia, had similar problem with same recommendation about raising feet, and could not/would not even in a recliner.

Got her compression stockings (not full stockings but over the calf) and that has helped.  They come in various "strength" and we started with the mildest just for her to get used to them, then moved up to medium. 

Shoes which fit when feet are swollen are important.  

Wishing you both some success with the issue.

harshedbuzz

SEM_BOS wrote:

Mom has mid-advanced Alz.     She's in memory care.   While often confused, she's also a very social person and has trouble sitting still or being alone.   She spends most of her time in MC wandering the halls and/or sitting and talking with the handful of people on her floor who are capable of having a conversation. 

Does her facility have activities in which they could engage her? Her feet may hurt less if she's busy doing chair yoga or making some sort of craft instead of walking. Does she pace or just walk around looking for something to do?

Recently her feet and legs have been swollen, sometimes hurting and other times not. We've made the rounds of her PCP and a few specialists who have prescribed some meds, etc.   However one common piece of advice is to stay off your feet, and elevate your feet above heart-level when possible.

Why are her legs swollen? When you saw the specialists on this last round are they thinking CHF? Kidney disease? Obesity? Are the meds treating the cause? When she's compliant does it help?

It can be hard for a PWD to understand and recall why they need to take certain medical advice. When I was going through this with my dad-- who was the opposite of your mom as he didn't want to peel himself up from bed or couch-- his geriatric psychiatrist gave dad a prescription to walk around for 10 minutes every hour and one that instructed him to "play gold as needed". Dad could still read, so it did help a bit when he was in a good mood although more for me than mom who was his hands-on caregiver. A friend of mine who is a clinical psychologist suggested making a voice recording or video in which the doctor (with their permission obviously) tells her what she's supposed to be doing. 

Last night after dinner, and then another 20 minutes of cajoling, I got her to sit in a recliner and I adjusted it so her feet were up. She didn't like the upside-down feeling and immediately adjusted the recliner so  her feet back down closer to the floor (but insisting, wrongly, that they were still above her heart).  Note that I've also tried to get her to lay in bed with feet on the pillows, but it's also a struggle.

That sounds like a challenging evening. LOL, on legs being above her heart. Perhaps anatomy another concept lost in the mid-stages-- dad once insisted he'd had knee replacement surgery (it was mom) and when I gently suggested it was her he pointed to his elbow to show me. That said, in the mid stages he carried on mightily about pain in his side insisting that his ribs were broken because he fell and my mom leapt out of the way instead of breaking his fall. (Note the characteristic lack of empathy firmly entrenched by this stage) He had a CT scan with his new pulmo and the report included findings related to a gall bladder that was supposedly removed in 1981. His pain was real but he wasn't a candidate to have the residual piece removed so we changed his diet. 

My resentment kicked in a little bit, as I'm anticipating:

  a) Her complaining more, to me, when her feet/legs hurt

This is hard. Would she respond to TLC and a OTC pain reliever? 

  b) Her demanding, or an actual medical need, to do another round of doctor's visits (PCP, vascular, cardiology, tests, xrays, etc)   Meaning, I take time off work and drive  her to these appointments.

There comes a time in the course of dementia to consider your approach to testing. It boils down to the answer to the question "what are you going to do with the information that results?" If you know what's causing the swelling/pain and it is being treated appropriately (in the context of someone with a terminal dementia diagnosis) then repeated visits to specialists and further testing may not be appropriate. We moved dad to a much more palliative care model on his admission to the MCF. We dropped cardiology, ophthalmology, dermatology, allergist and kept only those who worked to promote comfort (his pulmo, geripsych, a PCP and urologist to administer his ADT. Maybe you see the specialist for follow up yearly or you let the PCP oversee care going forward. 

I wouldn't clue her into this change if you make it. If she can't parse "above the heart", she's likely not oriented to time. You could tell her she has an appointment with Dr. Heart or Dr. Vein next month (rinse and repeat) or that s/he's at a conference now and will schedule just as soon as they return.

She has a long/good relationship with her PCP so we've kept that doc instead of using the MC's visiting Dr.  And I dont' think the MC has specialists like vascular or cardiology. (They have a podiatrist and they can and do draw blood and do x-rays at MC). 

I can appreciate wanting to stay with a longtime family physician; it's hard to leave that. I moved my parents and set them up with a PCP near me so we didn't have the relationship piece you enjoy. He was a great doc and mom still sees him, but we did switch dad to the gerontologist affiliated with the MCF. The man really got dementia and was great with keeping dad comfortable in the context of the disease. The only downside was that the doc visited one morning a week typically but would make emergency visits as needed which meant we weren't there when dad was seen and information was passed to us by the DON. By this point the only outside doc he was seeing was the urologist who gave him his Lupron every 6 months and we hired medical transport for that and met him there. 

I don't expect any miracle solutions, but was feeling very resentful last night (and ashamed of my resentment).    I also don't expect her to change and decide to elevate her feet enough to help? 

It's easy to get resentful. Anyone who says they've never been frustrated, resentful or wanted to bang their head on the wall is either saint or a liar. 

When help me lean into dad's refusal to do the things that would help him was accepting that he couldn't because his brain wouldn't let him.

This helped me get my BP under control and allowed me to put on a facade in which I wasn't seething. 

understanding-the-dementia-experience.pdf (alzconnected.org)

 Any tips for that? Or tips to help me manage my resentment/frustration?

For the swelling, I agree compression might help if you can get the aides on board with it. Even the knee highs could be useful. I wonder if a hospital bed would be helpful. Staff could raise her feet during the night at one of her well checks. 

For the feet, you could look into Diabetic or Edema Adjustable shoes. Amazon carries them.

HB

Emily 123

Hello, 

 Quilting brings calm has hit it on the nose. Let it go.

As you know this is a progressive and terminal disease.  Be happy for the very positive abilities that she's retaining, like her desire to be social, and that she's out and about. Support that, rather than getting too focused on what she can't comply with.  Expecting a person with mid-stage dementia to remember and follow instructions is futile.  She seems to be able to function, but she can't retain information because her brain and its connections have atrophied. The caregiver has to adjust to how their person is and support small changes where they can.  

Loveskitties suggestion of support hose is a good one.  I wouldn't initially start with the thigh high support hose just because they can feel funny, and tough to put on-maybe start with a light/mild compression knee high and see if that helps, and if she'll wear them--those are much more manageable. The Ames-Walker house brand is nice. ( I may not know much, but I worked on my feet for 23 years, so I know support hose!) (https://www.ameswalker.com/collections/womens-compression-socks)

It might be easier to do the shoe shopping on your own, since at some point things that require decision-making become a challenge for the PWD. Comparative shopping  requires a working memory. In a way, expecting the PWD to be able to make complex choices (like remembering the pair of shoes they just tried on) sets them up to fail. 

Disappear all her old shoes, as it sounds like she's already about a size bigger.   Buy her a few that fit in a size large enough for her swelling feet on a 'bad' day.  Better to go large and make up the difference with support hose and thicker socks than have her in tight shoe.  There are some very nice mesh slip-ons available.  Skechers makes some (The 'Go Walk'  are very comfy). I've had good success upsizing my mom's shoes by sticking to the same brand and style as her old favorites.  As the memory regresses, they will look for familiar articles of clothing, and not be able to identify new items as theirs.  That is likely why your mother gravitates to her old shoes when you take her shopping.  

If you haven't stumbled across this in your reading here, this pdf is very helpful--for me it clarified how the disease affected my mom's judgement, reasoning, and executive ability as well as her memory, and helped me adjust my expectations.  https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf

If you're feeling like there's a lot of specialty care and doctor's visits, now might be the time to have a one on one with her PCP about what goals are reasonable in terms of her quality of life. How much specialised care is necessary for her to be able to do what she enjoys while she still can? What can be reasonably cut back?  There are a few discussions in the forum you might be able to find regarding these types of decisions...  Good luck.

.

Beauchene105

I got my mom velcro "diabetic" slippers for her swollen feet. She isn't diabetic, but they are great for edema: Git-up Women Diabetic Slippers/W Arthritis Edema Adjustable Closure-Memory Foam. Available on Amazon in several colors.

Elshack

I bought my DH some velcro slippers that have a nice sole for walking. He wears a 10 C but due to swollen feet and ankles I bought from amazon a 11 extra wide. The support hose for swelling would be too difficult to put on but I did buy again from amazon socks for those with edema and bought 2 larger sizes. When I visit him every day in memory care I prop his feet up on a small dining room chair and he is still in his recliner when I do this. Of course he doesn't keep his legs elevated for a very long time. He does walk around alot during the day.

SEM_BOS

Great advice, thank you.

SEM_BOS

Great advice, thank you.

SEM_BOS

Great advice, thank you.

SEM_BOS

Great advice, thank you.

SEM_BOS

Great advice, thank you.