Three months on MCF for DW. An Update.

Vitruvius

This will be long so TL;DR:  I'm the guy with a deadly skin disease I developed from the stress of caregiving.  I'm recovering with treatment.  DW has been in an MCF for nearly three months and has adapted much better than I feared.  Hopefully my story will be of some use to others, as their stories have been to me.

Now for my Public Service Announcement: The stress of caregiving can be more damaging to your physical and mental health than you realize.  I know, I'm the Poster Caregiver, I developed a rare, deadly skin disease (80% of sufferers die within one year without treatment) after years of caregiving and my DW wasn't as hard to take care of as others here.  If you're even remotely considering placement, don't wait too long.  If you aren't, at least do what you can to seek help and support to lessen your stress. I know some here want to keep their LO at home thinking the care will be better, or that they have some kind of obligation. If you can swing it I would suggest that in some, or even many cases, your obligation to give them the best care may be better met by placing them in an MCF.  Just my opinion.

As for me I am in a treatment regimen and will likely recover, but as a lonely, heartbroken man.

As for my DW she has adapted pretty well to her MCF.  DW has never asked to come home or expressed any awareness that she is anywhere other than where she should be.  I just could no longer properly care for her at home.  She is safer and more content at the MCF. Although I could take care of most of her physical and hygiene needs at least as well as her MCF, she is significantly less agitated at the MCF.  I presume it is because there were too many triggers at home that left her feeling she needed to do things and go places and that frustrated her.  In fact the last few months at home she was on Quetaipine/Seroquel which became very necessary to control her delusions.  As an example, after a short walk she would refuse to go back in our house because she was convinced it was not our house and she would strongly resist any attempt at coaxing her in.  But she was also becoming intermittently physically unstable, wobbly I would say, and she fell several times.  This continued at her MCF, where the nurse thought that someone who normally walks as well she does should not be falling like that.  The nurse contacted her neurologist (with my permission) and they agreed that the Quetaipine/Seroquel might be contributing to this and she was taken off that.  She did not revert to troublesome delusions and seems to be much more peaceful than when she was at home.

Perhaps it is just the progression of the disease that makes her more content, but I think it's the MCF environment.  The staff there is terrific and treat her with great compassion and she is very comfortable with them.  Based on other threads here, I checked her room carefully, and everything was neat and clean, all her clothes put away, bed changed, all of her stuff and no one else's. A good reminder on things to check.

With 24/7 monitoring she is probably safer at the MCF than she would be at home as well.  I am only one person and watching her every second was hard.

While at home DW was in a day care program for a few hours a week which provided social interaction but it was limited.  Her MCF now provides this quite well and she has made friends with several residents even though they are much older that her (she is the youngest, probably by nearly a decade). This is also something I could not have provided at home.

I visit every other day.  We stroll the beautiful gardens there and usually sit on a garden bench swing.  I put my arm around her and she puts her head on my shoulder.  Since she has Semantic Dementia (Semantic variant of Progressive Primary Aphasia (svPPA)), our conversation is usually her asking incomprehensible questions about some hallucination she sees, as an example she will calmly say: "why are they carbonizing that fripperwad?" while she points at something only she sees. But she also occasionally will tell me she loves me. (BTW the Quetaipine/Seroquel did little about her hallucinations so going off that med didn't increase the hallucinations.  Also these hallucinations don't trouble her in any way so her neurologist advised not worrying about them too much.) 

Her brother flew in from the east coast for a visit recently and she recognized him at once which was nice. As I was taking him back to the airport he made a comment that sums up my life.  He referred to his visits to his sister as "heartbreaking".

So I will survive my disease, but whether I survive DW's disease is still an open question.

Anna2022

Thank you for sharing your story. We all need to hear it - I'm grateful that you are healing now.

PookieBlue

Thank you for your story. It is informative and helpful.

Jgirl57

Thank you V- very thoughtful post and I hope your 

Recovery continues to improve 

Ed1937

Vitruvius, I remember when you posted about that skin disease before. It's great to know you are having some good effects from treatment. 

It's also good to hear how she has acclimated to her new way of living. That in itself is huge.

Thank you for bringing up the fact that people are putting themselves in harm's way if they can't control stress. We all hear how stress can do bad things, but when we're in the middle of something difficult, it's hard to imagine what could be happening to our bodies. It's really important to learn how to best control the stress, and there are classes online for just that. Again, thanks for the thread.

Marie58

Stress is real. 

Glad your DW adjusted well and glad your treatment is working.

Buggsroo

Vitruvius, I am getting my husband ready for placement. I realized that having to go on blood pressure meds was just the beginning of future health problems. I am due to make my last tour of the fourth home on my list, others don’t have tours because there is Covid in them. 

I really hope your skin condition gets better with treatment. I know it is heartbreaking to see the progression of the disease. 

Jeff86

Thank you, Vitruvius, for your thoughtful post updating us on your journey.  Terrific news that your DW has adjusted well to the MCF, and that you are responding well to your treatment.  Appreciate the cautionary tale about the health effects on us as caregivers.

I think a lot about your last, excellent point.  I wonder what I’ll be like coming out the other side of DW’s AD journey…assuming I do.