happy happy...

I took Mom to lunch at her new place.  She won't move in til Friday, but we had an advance peek.  The apartment had just been vacated, so she got to see.  The rooms are a bit smaller than her old assisted living place, but since we just got rid of almost all of her furniture, it works out well to have less space to fill up.

The people were lovely.  Elsie agreed to sit with us at a guest table, and though she was pretty quiet, she made an effort to welcome Mom.  Joanne met us in the living room and was funny and friendly.  Mom actually acted like she might play bingo or Rummicube - she liked the people and seemed like she'd be a part of the community.

There were just 28 people in the dining room.  It was peaceful.  People were served food hot, and each table was served about the same time so no one had to eat alone. There was friendly, quiet chatter.

After the meal, we went to sit in the living room, and found a man there. Turned out he was the cook, Mike.  He was in his upper 40s, from Boston, and really funny.  Charmed Mom.  Spent a good part of his career owning restaurants, then came to work for this place 3 years ago.  Loves it.  Recognizes he brings people the last meal they will ever eat, and takes that privilege/responsibility very seriously.  Told Mom she needed to tell him how she likes food - oatmeal with brown sugar, eggs scrambled, dislikes mashed potatoes.  Makes salad with romaine and spinach, not iceberg. Though he's Boston Italian, he has learned how to make meatloaf and Midwest type dishes.  He's a smart-aleck and funny, but respectful. Delightful.

And there's something so comforting, so 'home', about being in a place where the food is welcoming, ample, warm, and familiar.

She repeatedly asked why I didn't find this place three and a half years ago, before she even got into her previous assisted living.

We left content and excited.  Can't wait for Friday.  Will be a challenge ... but totally worth it.

Rinse and repeat.

So, the subtitle of this blog says that this will focus on what Mom's care does to her, but also to me, and to my relationship with my family and siblings. 

I've started several posts, and abandoned them.  They were just rehash of where I've been before, what I've said before.  Nothing new, nothing insightful, nothing really very interesting.  

But I guess that's the point of exactly where I am in this place of caring for Mom.  Yes, I have some adrenaline surging about the poor care in her soon-to-be-former home, and some planning and project-management skills surging in looking for the new place.  Many sleepless nights as my mind obsesses about Mom - last night, I couldn't sleep because of thinking about what we'll do for a dresser for her.  (Silly, eh?) So, there are some recent variations in Groundhog Day. 

But, overall, this is still just 'Rinse. Repeat."  (Which is basically the punchline of, "Why did they find the blonde dead, lying in the shower after a week, clutching a bottle of shampoo?  The shampoo bottle said, Shampoo. Rinse, Repeat.)   

In this blog, I could repeat old themes:  My sister has been great.  My brother does not seem to be very engaged.  I am hungry for my next adventure.  I am honored to have the role of supporting someone approaching death. I have grown ... though sometimes reluctantly.  Same themes.  Same posts.  Same same same same. 

Rinse and repeat. 

Rinse and repeat. 

New hope, but with reality

Mom and I are both eager to get her in the new facility. It looks wonderful, peaceful, friendly, caring, competent.  The best recommendation is a hospice nurse who gave it HIGH marks ... and she knows the place well as well as seeing the real life there.

She gets to move in early, this Friday Mar 4.  Her room will be quite close to the center, limiting the amount she has to walk.  She goes back to a small apartment vs a glorified hospital room, though we need to go retrieve some of the furniture that we distributed.  It will be so much better.

But I also know there will be problems.  Mom will have problems adjusting.  They will make errors, and we need to anticipate a certain amount of imperfection.  It more than doubles my commute to see my mother in my usual daily trips, and I'm not sure whether I may just need to beg off occasionally.

We can be excited, happy, relieved... but we can't expect an idyllic situation free of any frustrations. Realistic, but content.  Sounds good to me.

Tick, tock, tick tock (for two weeks...)

We got an estimated move-in date of two weeks from today, to give the previous resident a week to move out, and to give them a week to prepare the rooms.  Mom is just desperate to get out of where she is, so she can feel safe, welcomed, secure.

Every day, problems continue at her existing residence.  Today they admitted they have lost her beloved quilt. I can't even recount all the problems ... cold food, tasteless food, long wait times for call buttons, tripping hazards and safety issues, bare mattress for a half-day (when she was napping), lots of lost laundry. There is just an unending list of problems, some serious, some petty, and all chronic.

I honestly don't know how this place gets by with it.  I have complained at all levels - to individuals, to the unit nurse, to social work and nursing departments, and to the director of nursing.  I've been promised 'investigation', but have not received any further communication in response. There are still stupid errors and neglect that just keeps happening, even though they know I'm there every day and will complain.  So, I choose to not continue to complain - it is clear that their service will not improve further, and I don't want her to receive any repercussions or negative treatment in the next two weeks.

After she moves, I will have more to say, both to them and likely in some other more public forum, such as a web review.  I feel sad for residents that have no advocate, whose family just dumps them there and rarely visits.  They have no voice, no advocate, and surely suffer the same.  Or, maybe they're just used to neglect.  Sad.

But - woooo hoooooo - she will be truly in a 'home' soon.  Yes, they will make some errors, but surely not like it is now.  I am confident, I am hopeful.

Tick, tock ... but with hope

I went 'shopping' for places for Mom.

I chopped a lot of places off the list due to bad reputation, or low scores from Medicare site.

I found one, a nursing home, that used to be called the 'county nursing home' - but it is well-organized, pleasant.  Her room would be about the same size as her present one, also a semi-private.  But they seem to be better organized, more caring, more individualized.  They have 'neighborhoods' that are managed independently - she would eat with the same small group, be cared for by the same group of staff.  I learned that they pay their staff higher than other places, resulting in being able to keep the best people.  Plus, it's cheaper by a bit.

Then I hit pay dirt.

I know a hospice nurse who told me she has several clients in another place she likes - but it's at the assisted living level rather than a full nursing home. But she said that this place 'goes the extra mile' in helping with ADL's - activities of daily living. They would help her with her almost complete incontinence.  They would wheel her to her meals, if she felt too weak.  They give showers.  They have delicious meals.  They have homey pictures of residents around. They are in a wooded area in the midst of suburbs, but it feels peaceful and like country.

This is where the hospice nurse would go if she needed it.

Plus, she would have her own apartment - a separate living area (with kitchenette), a bedroom, a large bathroom, closets.  Not a glorified hospital room (as in nursing homes).

Plus, it costs less than her former assisted living home (by more than $1,000/month), and almost half the nursing homes.

The downside is that it's farther for me to drive, but it's do-able.  And, if her health worsens, she may eventually need nursing home care (though she is on hospice and has end-of-life wishes to not receive extraordinary measures, so maybe she could just stay there - may depend on regulations).

And they have a room coming available in the next weeks.

Now we just wait for them to come assess her to make sure they can accept her, then wait for the room to open up. But I'm so ... content ... that she'll have a place to call home, where she feels safe and cared for. My heart is light for the first time in weeks.

Tick tock, tick tock.

The last straw

I have chronicled the deficits at this nursing home.  I have complained to the director of nursing.  I have complained to staff.  I have been pleasant but firm about providing my mother good care, but have continued to see problems in this place.  And tonight was the last straw. 

Fecal matter on her sheets.  

How long has it been there?  The nurse saw it and was horrified, and said that their schedule is to change sheets 'when she gets a shower'.  Since the nursing home only gives her a shower once a week (on Sundays), and hospice gives her a shower twice a week, it is presumable that this could have been there since Sunday.  

After she said that the sheets get changed when she gets a shower, I said, "or if there is fecal matter on them, right?".  She said, yes right.  

Also, it shouldn't even happen.  We have hundreds of 30" x 30" bed pads, thanks to hospice over-ordering them.  Her old place always always had one on her bed.  I'm desperate for them to use up these pads, since they are clogging her storage.  

Snap.  I'm done with this place.  

I toured one of the other nursing homes in town, a nice bright one, warm and friendly, and considerably cheaper.  Respectful of residents.  Surely not perfect, but ....  I believe it will be a vast improvement. Her name went on the waiting list today. 

It's funny, I'm a practical woman.  If only her existing place was a great bargain - I could put up with feces on the sheets maybe, or slow service, or pee left in the bedside commode, or my having to remind them about every little thing.  But ... not at premium prices.  Nuh uh.  

Snap.  The straw just broke the camel's back, and I can't wait to pull the trigger.  I'm done. 

Still on the fence ... leave her there or not?

We met with the director of nursing, and aired the lengthy list of issues that we had with the nursing home where she is staying. They were concerned, clearly, and promised to take steps to improve the deficits.  And, she said that Mom is not using her button to call staff needlessly or excessively, which was good to hear.

But are her promises enough?

The next day, her pants had all disappeared.  Every one.  I went down to laundry's lost and found, and went through a double-mountain of lost items, and found at least a dozen items of hers - including some that were clearly marked.

And the staff was snippy, possibly in retribution for her/our raising issues.

And the shower room was strewn with other resident's dirty towels when it was her time for hospice to come in to help her.

But, at least, for once, her oxygen was not empty.

Mom says she's getting comfortable there.  Do I leave her there, hoping that status improves, and that they 'get used to her preferences'?  Or, do we move her quickly before it becomes even more traumatic to move a second time?

And if we move her to another nursing home I've researched with an excellent reputation, will they have similar issues?  It's impossible to research all the potential problems.

I honestly don't know.

Abandon hope all ye who .... ok, maybe that's a bit strong ...

What pushed me over the edge? What was the straw that broke the camel's back?

Maybe it was yet another time when Mom's oxygen tank was on empty. Or the two full, warm opened cartons of milk left til the next day.  Or the poopy laundry left on the visitor's chair and on the floor. Or issues with chaos at meals. Or the nighttime bedside commode left full of urine during the day.

But ... I'm ready to look for another nursing home. Shopping around, again.

This facility was supposed to be so good - we are certainly paying premium prices. And there have been kindnesses to her. And there were explanations and justifications from staff about issues I've raised. But there have been a series of dismal failures, explanations or not.  And I'm very close to moving her.

In addition, she is really unhappy with the size of this place.  She went from a community of 32 maximum residents, with 2-3 staff at a time, to a community of 240 residents and innumerable staff flowing namelessly in and out of her life.

I think it's not a good match.  Very frustrating, very disappointing. Starting over, though perhaps with better results. Sigh.

Misery loves company

Mom is miserable.  She desperately waits for my daily visit.

She is frustrated by the apparent lack of a fixed schedule.  In Assisted Living, the meals were precisely at 8, 12, and 5PM.  Here, with a larger population and varying needs, people come and go as they wish during open meal hours - some might say it's more flexible, but to my mother, it's more confusing.

More staff work at this larger nursing home than worked at her former facility, and she is saddened to not have as close a connection, to not be able to call them all by name.  They just flow in and out of her room, a river of helpers but with less connection, generally (except for the few that have shown particular interest).

She needs more help now, perhaps because she got sick with a cold that weakened her as soon as she arrived, or because she is overwhelmed by the change.  Her continence issues have worsened, though they kindly have helped her.  A couple of days ago I arrived to find her sitting in her chair in a light summer nightgown and with shawls on her lap and shoulders, after she blew through all her pants.  (I've since bought her a much larger supply of pants that fit her.)  It was so sad.

The dining room is further away, and walking to it from her room at the end of her hallway is more of a challenge than before.  So she must decide if she needs to have them transport her in her chair, or, if she's going to try to walk.  Yesterday, she decided to walk, but gave out midway. Someone brought her wheelchair - but then she had a low-blood-sugar incident.

But there are also kindnesses.  Sheryl, the aide who stayed a bit late on her shift to do Mom's nails.  Mary, who patiently helped her during her diarrhea episodes.  The unnamed woman who saw her having trouble walking, and got her chair.  The staff who come to visit to offer activities. The hospice folks who provide stability and support.

Mom is back to talking about wanting to die, NOW.  She says she won't need the summer nightgowns because she'll be dead by that time.  I (again, again, again) remind her of the preciousness of life, that she needs to find at least one thing each day to make someone else's life better.  That she needs to live fully each day of life that she has.  She nods, says yes, you're right... then says the same thing the next day.

And I continue to look for things I need to learn about this situation, to become more whole myself, while I have this privilege/duty in my life.  Today, I'm too overwhelmed with the situation to have perspective, but I continue to seek it.  I hope time helps me find the insights.

(I'm not even going to re-read this to edit it.  Just too... tired.)