Update on my situation(2)

Quilting brings calm

It’s been 28 days since my last update. ( I checked).  Although I’ve  replied to others’ posts, I’ve been reticent to post about my situation. It just feels odd to do so.  But anyway here’s where we are: 

Mom has a nurse, a physical therapist and a speech and cognitive therapist visiting her at the AL.  A social worker has been out too. She’s still depressed, but I think a lot of that is due to my step-dad.  She has good days where she seems almost normal cognitively and others where she’s definitely mid stage 4.  She seems to understand that I’ve had to back off physical visits for my own mental health.  I probably get there every 7-10 days.  Daily phone calls. 

Step-dad finally got an  appointment date with the psychiatrists office for dementia testing, but it’s not until January.  I’ve told him this doctor can help him with the insects that he thinks live inside his body.  I am hoping that will be the trick to getting  him to go. Although our ‘relationship’ may be so bad by then that he may refuse to let me take him.  He’s still denying any sort of responsibility for his inappropriate behavior with women, and taking offense  that he’s been called out on it.  He’s also become paranoid about the medical people visiting mom and taking offense to the fact that they sometimes take mom to a common area to visit her rather than stay in the apartment with him.  Today he was supposedly asleep when I got there and I told mom  good he can stay asleep. After I left he accused me ( via mom) of telling mom that I didn’t want him to hear us talking.  I didn’t tell her anything that would be a secret. I just didn’t want to visit with him.

My sister isn’t speaking to me because I got tired of her telling me what I should do about my parents  from 800 miles away.  Or alternatively telling me to quit talking so much about them to her. She doesn’t call them. Hadn’t seen them since October 2019. So I didn’t return a phone call after she told me to call  back so we could discuss it further.  Haven't heard from her since - 3 weeks or so. I just can’t deal with her right  now, so I don’t.  

Basically I am just limping along.  Today the phone call from mom after my visit upset Me.  I guess that’s why I’m posting this update. I’m trying to add more joy to my life.  I went on a quilting retreat for 3 nights last week, my spouse and I will spend two nights with our older son and his family this weekend.  

Emily 123

Even though maybe it doesn't seem like it because you're emotionally drained, you're moving forward.  January will be here before you know it, and hopefully your stepdad will get the help he's been needing.  You're smart to limit visits and family interactions to what you're willing to handle, & it's great that you're able to carve out time to do things you like to do. I hope you have a really nice visit with your family.

harshedbuzz

QBC-

Thanks for checking in.

I am sorry so many of the moving pieces remain challenging, but jettisoning your sister and limiting visits is a good strategy for staying sane. Enjoy your weekend.

HB

mommyandme (m&m)

Thank you for your update!

abc123

Hi QBC, how are things going? Thinking of you.

Quilting brings calm

Abc123- thank you for asking. 

Yesterday was my first day back at the AL since my post 11/1.  I had my own doctors’ appointment last week to discuss a knee replacement and then we went to a weekend at a water park with our son and family for our granddaughters birthday. So yesterday I picked up my mom for her appointment with her NP at the neurology department. I did not go in the AL itself at pickup or drop off so I did not see my step-dad. 

This appointment was a follow up to the August appointment.  We filled her in on Moms’  emotional upheaval of the last couple months.  She did not change the mirtrazipine even  though Mom has become emotional again. She feels there is a reason for Mom’s attitude and that step-dad should probably be medicated.  He is not her patient yet, going the is the route first.  Mom was much more alert, engaged and focused at this appointment than the August one, so the mirtrazipine is working. NP still thinks Mom is at the MCI level.  You know how that goes. I had her show us the CT scan.  So I got to see the frontotemporal volume loss.  Although hers is mostly in the front, where language, planning and emotions are done. Next appointment is in 6 months. 

Step-dad is reported ( by both mom and the home health care staff) as anxious, depressed and paranoid. He is convinced that all the home health workers are there for us to talk about him. He was sure that mom was only going to the NP to talk about him. Truthfully, some discussions  have been about him. There is no way to avoid discussing  him since he affects mom so much. 

The AL got a new director Oct 1st, and then a new office manager and nurse shortly after that.  Mom seems to like the new personnel better, no idea about step-dad.  The fact that she likes the new staff better, is being seen by home health and the NP thinks she is doing well allows me to continue my current path of  reducing visits. 

Sister texted and hinted at wanting an invitation to come to our house for Thanksgiving  and Christmas.  That went horribly last year.  I was able to truthfully tell her we would be going to my brother in laws both days. And ignored the hint. 

How is your situation?  Still recovering fromthe hurricane?  Is your Dad finally accepting home health for your mom? 

Marta

Quilting:  just this week I was alerted by a trade journal that mirtazapine use in elderly with cognitive impairment is to be avoided due to the risk of death, similar to that seen with the use of atypical antipsychotics. It may soon have a black box warning to that effect.

Banerjee, Sube et al.  Study of mirtazapine for agitated behaviors in dementia (SYMBAD):  a randomized, double-blind, placebo controlled trial.  Lancet:398:10310, p1487-1497, October 23, 2021.

Quilting brings calm

Marta - the NP commented that she prescribed it a lot.  she is watching for weight gain though. 

It’s working, and that’s what I care about most. Mom is 83, uses a walker, her quality of life is nil,  and she  is ready to die.  Whatever works and helps her quality of life is more important to her  and to me. I also don’t get obsessively concerned about  every possible side effect that could ever happen.  Dementia is a terminal illness. If we black box everything, then there will be nothing left to treat people with.  Whether mom takes mirtrazipine or not, she’s going to progress and eventually die.  Just because a person with dementia died and was on a medication doesn’t prove the medication killed them. 

Marta

That last statement is certainly true, Q. That is why we do randomized, double blind, placebo controlled studies. 

I used to prescribe mirtazapine a lot, also, but will no longer, if there is any hint of cognitive impairment, having read this study. 

This was only meant as an FYI, since this is new info.