Living with Dignity

Once again, sorry I haven't been around lately.  I've started several posts, but then I get overwhelmed and never finish.

My mom is not well.  Ever since she broke her leg, it's been downhill.

As I shared briefly, she got out of rehab but back at her assisted living facility, I had to hire a service for someone to stay with her 24 hours a day.  Basically a baby sitter, although a super expensive one.  I thought it was going to be a temporary situation "until she got better" and could go back to being on her own.  But that didn't seem to be happening.

Then she got the bladder infection.  We did get that taken care of, but since then she continued to go downhill. She honestly didn't remember most of the people at her Assisted Living facility.  And the piecemeal attention she was getting just didn't satisfy me that it was the best solution.

I finally made the decision that she needed to be in an Adult Family Home, and to have a high level of attention 24 hours a day.  I was lucky enough to only have to visit 3 homes (one BAD, one very elegant but not homey, and finally the one I chose just had a good feel to it).

As you can imagine, moving her there was very stressful.  There was so much paperwork and a nurse assessment and lots of arrangements to make.  Then the morning of the move, I literally just didn't even tell here where we were going.  We just drove up to the home, and I told her the people in this place were going to help her get stronger (which honestly was my hope at the time, so I didn't feel like I was lying).  Amazingly, she said she was just fine with that and adjusted within 2 days. The first day there, she'd already forgotten where she lived before.

Then there was moving the rest of her belongings out of the Assisted Living facility, giving a lot of stuff away, and figuring out what to do with what was left. I took a few sentimental pieces for myself and my brother. 

Things have finally settled down, but she continues to decline.  She literally cannot walk at all anymore, in fact she can barely stand.  She is incontinent, and other than meals (during which she eats very little) and occasional activities and visits from me, she sleeps all day.  I don't know how much longer she has but I do know this...she is in the best possible place.

The people who run the home shower her with loving attention and look out for her best interests.  If she needs pain medication, she gets it right away.  If there is a problem, I find out about it immediately.  They have their own doctor who comes by to check on the residents, so this is my mother's new doctor.  No more having to drag her to a doctor's office or the ER.  If she needs medication, the doctor can order it.   Today we talked about applying for hospice care, and we changed her POLST to basically "comfort treatment only." I know she doesn't want to linger if something happens.

My brother decided things were serious enough that my nephew, who lives in California and hasn't been home for 5 years, needed to come see his grandma.  He came in this afternoon, and my brother warned him that she probably wouldn't know who he was.  I haven't heard how the visit went.  I'll find out tomorrow as we are having dinner with them.

One happy outcome of this move is that my mother now has a new best friend (she's already forgotten her other friends).  My mom is 89 (almost 90) and her new friend is 92 and is still pretty sharp.  She calls my mother her little sister, and they are adorable together.  They play cards and laugh and  have meals together.

At this stage, it's the little things

In spite of everything, my mother still has a good sense of humor and loves to joke around.  I took her to church on Sunday, but it was hard.  She only weighs about 120 lbs, but she is dead weight to transfer from the car to her wheelchair.  It was raining, I had parked the car (lucky to find a handicapped spot), got the wheelchair out of the back, and put it next to her door.  Then I physically moved her with some difficulty to the wheelchair (thank heavens I work out) and covered her head with my scarf so she wouldn't get wet.  After I locked the car and I finally started wheeling her on into the church, she joked "So is this your penance?"  We both laughed. 

So, at this point, it's just day to day.  She may surprise us and rebound, but I'm not counting on it.  The main thing is she is safe, and comfortable, and is being treated with dignity and respect.  I think that's all any of us can hope for when we are at this stage of life.  

Another Sanity Challenge

Well.  No sooner did I express my aversion to hospitals...

This morning, my mother's physical therapist called me to tell me that mother's caregiver told her that she thought my mother had a urinary tract infection.  (Did you follow that?)  Because my mother needed to repeatedly get up in the night and nobody got any sleep.

*Sigh*

I talked to my mom, but she had no clue what I was talking about.  But the evidence was there...wet sheets, wet underwear, many trips to the bathroom...

So I called her primary care physician to make an appointment, but we couldn't get in.  They suggested we go to an Urgent Care facility, but they didn't have one to recommend.

(Gee, thanks for the advice.)

I called the Hospital Emergency Room, where she had just been a few weeks earlier for her leg.  I asked, "Do you think we should go to an Urgent Care facility or to the ER?" 

"You can go anywhere you want, but if you come here (ER) we will be able to do everything that might be needed (labs, etc)."

So off to ER we went.  It was a slow afternoon, so we walked in the door and within 5 minutes we had a half dozen nurses and doctors jumping on her case.

They already had her history on the computer so the questions were pretty basic.  Then, because she really doesn't have the mental wherewithal to provide a good urine sample in order to get a clean catch, they did an "in and out" catheterization.

They sent the sample it to the hospital lab.   

Diagnosis 30 minutes later:  A bad UTI.

Within 90 minutes, we had our antibiotics and were on our way back to her Assisted Living facility.

So she only had time to ask me 10 times why we were at the ER.  LOL.

Lesson learned for us (at least when it comes to my mother)...don't waste time with Urgent Care.  For the average person with a cut or nosebleed, Urgent Care is probably just fine.   But when it comes to my mother and her issues, I doubt Urgent Care would have been able to do a catheterization nor would they have been able to get the lab results so quickly.  And if it had been something more serious, the ER could have admitted her to the hospital.

(We actually kind of learned this lesson with Buster...if it is something potentially serious, which it almost always was, don't bother with a regular vet, take him to Emergency.)

I'm home now, glad to be here, and hanging out with my husband and dogs.

I need to take advice from Jenny.

HEY, DON'T WORRY...RELAX!

The Art of Maintaining My Sanity

What a weird trip the last few months have been!

After my mother fell and broke her leg, she spent a few days in the hospital, then was in a rehabilitation facility for about 6 weeks. 

Suffice it to say that the biggest problem she has now is NOT her leg.  It is her brain.  Her Alzheimers seems to have gotten significantly worse in the span of two months, which I don’t really understand because (as my husband says) “she didn’t fall on her head.”

In fact, at rehab, she was a star in physical therapy.  But because she was in a new facility, it became apparent that she literally cannot learn anything new.  I mean ANYTHING.

Like, “Use your red button to call the nurse when you need help to get to the bathroom.”

She never learned that.

She also could never remember why she was in the hospital or rehab.  You could tell her a dozen times in the span of a 20 minute visit, but she would continue to ask.

Plus she has flights of fantasy about what she can do…she thinks she can walk without help, use the bathroom, get dressed...yes, she could do all those things before she fell, but not now!  And while she knows who I am (probably because I visit almost every day), half the time she doesn’t know who my brother is. 

So fortunately, finally her leg was well enough for her to be discharged.  She's still in a wheelchair a lot but also can use a walker a bit.  But she forgets she cannot just get up and walk around!  So this meant that she couldn’t go back to her normal living situation in her Assisted Living facility, where she was basically pretty independent.  I couldn’t leave her alone, for fear she would fall again.  But I also didn’t want to move her out of the life she at least kind of knows.

So I’ve hired a service to provide 24 hour supervision.  Now, she’s back "home", with essentially a full time babysitter in her tiny studio.   She doesn’t remember a lot of her friends there, but she still loves to play bingo and penny poker.  At least for now, she’s safe and cared for, but I don’t know if this is a long term solution, mostly because it is SO expensive.  Right now I'm just playing it by ear, trying to figure out what's best for her. 

Anyway, as you can imagine, my own life was a bit in turmoil.

In between all the doctors' appointments, CareTeam meetings, arranging for the caregiver service, and visiting her every day, meanwhile also trying to work at my job as much as possible, I can proudly say that I always worked out at least 3 days a week with my trainer.  That was very helpful to managing my stress.

But my food…whew.  That was another story. "OF COURSE," stress and turmoil automatically means I eat crap.  I got back heavy into the licorice and ice cream, and just generally eating too much.  (All the things I crave now are foods my mother would not let me have as a child, because I was "too fat."  OMG, could my food foibles be any more clichéd?)

I have no idea how much weight I've gained, but my skinny jeans are super snug.  I'm going to guess I'm back up to 175.  Well, maybe not quite that much, but at least the low 170's.   I'll weigh after a few days off the sugar.     

At least now that things are under control with my mom, I can ease back into eating right.   Today was the first day I did that.  The biggest thing was today I didn’t eat any of my normal comfort foods.

In my book that’s a victory.

Anyway, I apologize that I have not been around much to read and comment on all your blogs, but I promise...I'm back!

ETA:  I was just getting ready to post this two days ago, but I wanted to proofread first.  Then I got distracted...and then my husband had surgery this morning on his foot, which he injured about a month ago by tripping on a curb.

Das Boot

So we got home a bit ago, and I am hanging out with him while he sleeps in his chair.  I woke him up and asked him if it was okay to leave for a few minutes (to visit my mom) and he said "No, not until this is over."  I have no idea what that means.  I think it's the drugs, but I'm sticking around.

Between my mother and my husband, I am so tired of hospitals.

Anyway, today is day 3 of no licorice and no ice cream, and to be honest, I'm dying!  I want a fix so bad, probably due to the stress and boredom.

I have both in the house (bought a week ago), but I've made up my mind that I will not have any.  I suppose I could throw them away but right now I want to see if I can be strong and resist.

Actually, I am looking at all of what's happened lately as a challenge to maintain my sanity.  I don't feel too crazy, yet...so far so good!   

Onward and Upward!