Step-dads doctor appointment

Quilting brings calm

Here’s a summary of what I put on someone else’s post last week about an upcoming doctor appointment for my step-dad:

==I will be taking my step-father to the doctor on Monday for what will basically be an appeasement appointment. He told me that ‘everything hurts’ and he wanted to go to the PCP. He complained about his shoulder - that’s an old issue that cannot be fixed, just maintained via PT. He supposedly tweaked his lower side getting out of bed a FEW WEEKS ago - but never mentioned it to me. He did not request to go to the ER or Urgent Care then or now. If he wanted to go to Urgent Care, he would drive himself there without telling me - it’s a mile from the AL. The nurse at the AL knew about it, and says he’s been fine - actually more active and engaged than usual. ==

Now here is what actually happened at the doctor today( and it was a good thing that we went). He didn't mention his shoulder or that ‘everything hurts’. He had the doctor look at an unhealed sore on his neck. Doctor said it was skin cancer and prescribed some cream for the AL staff to put on for three weeks. Then to leave it alone for 9 weeks and then to come back to see him. He mentioned his side hurting. The doctor felt around and said ‘it’s not a rib, could be a pulled muscle or it could be something that shouldn’t be there, such as cancer’. It appears the pain is coming from somewhere below the left armpit. He suggested a chest X-ray, which dad objected to. I told the doctor dad had an annual CT scheduled at the cancer doctor for next month. They monitor his lower neck, and all of his lungs. So the doctor said that would work better anyway. I have a feeling he thinks it’s cancer - dad already has thyroid cancer nodules in his lungs and COPD. His lungs and heart aren’t strong enough for major surgeries,

Dad has lost 18 pounds in about six months. He now weighs 197. I mentioned he’s not been eating as much and not doing as much. Dad complained about the AL food. The weight loss also indicates something such as cancer to me. He’s also lost over about 2 inches in height at some point, and is now 5’ 9 1/2”. The doctor didn’t offer a reason for the weight loss - probably because ‘it is what it is’.

Dad also was surly with the doctor about various things that he said the doctor had told him previously ( which the doctor did not tell him). The doctor knows how to appease dad since he’s seen him for decades.

I asked the doctor if it was okay if I left town for a few weeks and he said yes. My spouse wants me out of the Illinois winter weather because I can’t afford to fall between my knee replacement and my osteoporosis.

After the doctor left, but before the paper work was ready, dad asked if he was getting a chest X-ray and I said no.

@M1 - your thoughts on what I learned today? And you don’t have to sugarcoat it. My thoughts are he’s reaching that last year of life.

M1

The weight loss is certainly worrisome. I think you are probably right to be prepared for bad news from the oncology visit next month. Have you thought ahead about what your mom will need if/when she outlives him? From what you've described i can imagine her neediness escalating exponentially unfortunately. But i don't know how you can really prepare for that ahead of time.

Do be careful in the bad weather...

Quilting brings calm

@M1 - I agree with your concerns about my mom. Dad was in the hospital for long weekends twice in the spring of 2021 - and Mom was inconsolable and beside herself. I expect she will decline quickly and be unable to function in an apartment in AL on her own, so I will need to look into MCs at that point. That is concerning because she won’t have enough income/ savings to do that long term. I think she could be one of those spouses that dies of broken heart syndrome even though their marriage was never very good.

She is on sertraline and mirtrazipine now( wasn’t then), but the AL nurse already wants me to ask about Seroquel next time she’s at the psych resident appointment. I’m not sure about the need for that because she’s not delusional, not hallucinating, not aggressive - just anxious.

M1

QBC we started seroquel for sleep fragmentation and it has worked quite well. I don't think there's any harm jn trying it and you might be pleasantly surprised.

harshedbuzz

@Quilting brings calm

Can I butt in?

Ugh. Poor you; it's always something.

My first thought is to trust your gut. You have been dispassionately observant of this evolving situation for some time now. If you have a sense something is amiss, it most certainly is.

My second thought is that Seroquel could be useful for your mom especially if her current routines, which hinge on her husband being well enough to be with her, are likely to be upended by his needs for treatment or pain management increase. (Sidebar: I forget. Are you making decisions for him or is he doing so?)

Now might be the time to investigate those MCFs for her and revise your Plan B. If she can afford a year or two in MC, she may be able to convert to a Medicaid bed. Can she do that where she is? What sort of place is she in now? I know they have an apartment in AL, is their MC on campus? Do they accept Medicaid? If the facility is affiliated with a religious or civic entity, do they have a benevolent fund to assist longer term residents whose financial circumstances have changed?

About Seroquel and other atypical antipsychotics. I am not a physician. Seroquel was great for my dad. He started with 25mg at dinnertime for aggression/sleep and eventually a second dose was added in the am. A lot of dad's aggression was the result of anxiety. He was already on a higher dose of Prozac (SSRI like Zoloft) with a Wellbutrin (NDRI) chaser. Seroquel calmed him enough that strategies like Validation and redirection became options for keeping him feeling safe without sedating him.

I have a number of friends whose sons with higher functioning ASD with anxiety who use one of the atypical antipsychotics in lieu of an SSRI. (There's a higher incidence of Schizophrenia and Bi-Polar Disorder in the families of PWA. SSRIs can trigger mania, especially in those with a family history or as-yet-undiagnosed Bi-Polar Disorder) I know a woman is thought to have developed A few were started on Risperdal when it became the first SSRI indicated for ASD; some stayed with it while a few others switched to Seroquel or Abilify. These are bright young men; mostly college grads finding their way in a neurotypical world. Their anxiety baseline is off-the-charts and this is what works for them and allows them to use the CBT approaches from therapy.

Lastly, enjoy your trip with your DH. You both deserve some down-time to just be there for each other. I so jelly.

HB

SusanB-dil

Hi QBC - just want to agree here to enjoy your 'time off'. I know your mom and step-dad will be on your mind, but please do get some rest 'n relaxation in there. I'm with HB - I wanna go, too........... !!

Quilting brings calm

HB- you aren’t butting in. Thank you for joining the group conversation. I want everyone’s thoughts. I just wanted to make sure M1 chimed in due to their knowledge base.

This AL doesn’t have a MC component on this campus. They used to be owned by the corporation having the MC located next door. I most likely will not use it if I can find one I like closer to me. The AL is 35 minutes away from me. We chose the AL for reasons that would no longer apply in an MC search( Mom and Dad had a dog and didn’t want to be in the larger town located next to where they are now ).

I don’t think Illinois Medicaid pays for MCs, but they might give waivers for certain elements of care provided. However I will certainly begin asking and searching once we get back in town. That will be no later than mid-February as the CT scan is February 19th.

Who is making his medical decisions? It’s a mix. I let the doctors begin a conversation directly with him. However at some point I have to add to or correct the information he’s giving them. Then I have to rephrase what they tell him into phrases he can understand. He can’t hear that well even with his hearing aids. He has trouble talking ( especially some days) due to the 4 thyroid cancer surgeries on his throat and neck. His voice can get very gravelly and not very loud at the same time. He has thoughts about his medical situation and history that are not factual. So at some point the doctors and I are having our own second level conversation while the main one still appears to be happening. He tells the doctors he doesn’t want invasive procedures done, yet he wants to be revived ‘if they can fix what’s wrong’. The PCP told him again yesterday none of his current diagnosed conditions are fixable. He knows his lungs and heart can’t take major surgery - that’s something I make sure to add in the conversations. Truthfully, his doctors all seem to be well versed in elderly ill people care and the realities of ‘it is what it is’. So we are on the same page at the end of the visit.

The oncologist has told him repeatedly that there’s no need to treat the thyroid nodules unless they grow- and that the only treatment would be chemo pills - and that the side affects would be too much for him.

I noticed your phrase ‘dispassionately observant’. I wasn’t at the beginning of this ride. They were out of state, I didn’t observe things that I would have if they had been local. When we brought her back and he followed( that mess was all due to him), I was observant but an emotional mess. Four years+ later, I seem to have separated my emotions from the equation. There are lots of days where that bothers me in itself. Will have to deal with that later.

MN Chickadee

I'm sorry; it's always something for you. It does sound like youmay have some real end of life stuff to deal with on the horizon regarding stepdad. Do you have access to his medical records via the patient portal? I know on my dad's I can read the physician's report regarding the visit and sometimes that helps put into focus what's really going on in medical terms, not just what they told the elderly patient. That CT scan will certainly be telling. A quick google suggests that Illinois has a waiver program that pays some of memory care in a MC/AL setting. Definitely something to look into, maybe check in with an elder law attorney if you haven't recently to make sure you make the most of any assets remaining for mom that may help get her into a good setting before switching to medicaid. They would also have experience in helping you time everything right since there is probably a waitlist for the program.

Quilting brings calm

MN- I used to have access to his records via the portal- but the hospital/clinic system changed their portal provider. I forgot to ask the doctor’s office for a new activation code when I was there the other day. My mom already had an account on for the new provider, so I still have access for her. I will ask the doctor for a new code for him in April when they have their annual wellness visits.

I was at the assisted living facility today- third time this week. Dad said his side was feeling better.

harshedbuzz

@Quilting brings calm

I would reach out to the tech people for the portal with DSD and get a code now. DH didn't ask for one when I changed him to my practice when he needed a new PCP. They were great and I got him set up in minutes. LOL, my account has 2-step verification on it but I can get into mom's and DH's anytime I want. DS refuses to share- he takes after his Mama.