The holidays are upon us, and I am afraid they will look very different this year.  A memory popped up on my Facebook page the other day, and it showed a group of special friends that went to Bobs facility every year to play the piano and guitar and sing Christmas carols for the residents.  We had bells for them, and tambourines, so we made quite a joyful noise!  But this year that facility has had 76 COVID cases and 17 deaths, mostly in the dementia care area, so nothing would be the same.  So far Hillside Village where Bob is now has had a scattering among the staff, but when all the residents are tested, all have been negative.  That is amazing!

Bob seemingly recovered from the urinary tract infection he had when I wrote my last blog, with the help of oral antibiotics.  But I wonder if he completely recovered, as they noticed blood in his urine again the other day.  This time I asked that the battery of lab work and Xrays that were done before to figure out the cause of his temperature not be done.  He vomited Thanksgiving night, and they did another abdominal Xray the next morning.  I would have asked to wait a day or two as maybe he just ate too much Thanksgiving dinner, or something he had didn't agree with him.  I asked to speak to the Nurse Practitioner, who I had never met because of COVID.  I really respect NPs and we had a great conversation.  I told her that Bob had been taken off Hospice after he was at their facility for a few weeks, as he had such great care and things had turned around.  But I asked if we could still follow the principles of Hospice, and not be aggressive in his care.  She said that was certainly possible, as when they are taken off hospice, they would tend to forget that they had been.  It is a skilled nursing facility, so they certainly have capabilities to do everything.  I told her I just wanted Bob to be comfortable, and  not be taken to the hospital.  She said they could administer Morphine and everything just like hospice does.  It was good to talk with her and be on the same page.

The Director of Nursing's husband built an independent structure designed just for visiting during this COVID time.  It has a space for the resident, and a space for the visitors.  The two are separated by a plexiglass window.  There is a heater, and an intercom, so it makes a very comfortable place for you to visit with your loved one.  I have seen Bob a couple of times so far that way, and although he cannot communicate, I can see him clearly and talk to him and sometimes dance a jig to get a smile out of him.  I just wish I could touch him and hold his hand.  The last day I got to see him in March I was sitting by his bed holding his hand, and he was squeezing mine tightly.  I had no clue that the next day the lockdown would come, and I would not get to touch him again.  Of course, I didn't know then, and still don't know if he knows who I am, or if he is aware that I am not able to see him every other day as I used to.  When we had one visit outside 10 feet apart, he motioned for us to come closer.  And I am sure he didn't understand why we couldn't.  There would seem to be a flicker of recognition when Libby would come, but we couldn't even be sure of that.  He looks good and his weight is holding steady.  He did look like Einstein with a full fluffy head of hair, but one of the staff cut his hair and sideburns and now he just looks like Bob.  In a memoir of the life of Mary Cooper Back she states "Isn't it great to be married!  We had counted on the thrill, but we didn't know ahead of time about the great peace and contentment in just being together."  Ah, the little things we once took for granted!

I have said for many years that the holidays are not my favorite time of the year.  I just think of all the people that are alone on Thanksgiving and Christmas and it makes my heart sad.  And I am afraid this year it will be even worse.  I just hope that by telling my story of what I am going through now will become part of someone else's survival guide.  Several of our support group have lost their spouses recently, one to COVID and the others to natural progression of the disease.  I just hope memories of happier times will get them through the holidays, even though they may shed a tear or two, or many.  

So during this time, I wish you the Heart of Christmas which is Christ, the Blessing of Christmas which is Hope, and the Spirit of Christmas which is Peace.

Betty

 Granddaughter Libby who has been staying with me to do virtual schooling is off to her tennis lesson, so I have time to collect my scattered thoughts!  The past two weeks have been a rocky road, and Friday was our Zoom support group that I desperately needed.  The support group is sponsored by the Alzheimer's Association so per their directive, we cannot meet in person until a vaccine is found.  Several of us were very tired of these Zoom meetings so thankfully one of the group organized the members in a garage coffee Saturday so we could meet in person.  We missed our moderator so much, but weekends are reserved for her family!  This blog is going to be titled "What would you do?"  and the questions are some of the topics of discussion at our coffee gathering.

Several of the facilities in town have quite a few cases.  Hillside so far has none, but I just can't help but think it will be a matter of time.  Peg, and anyone else that wants to comment on this post, please feel free to do so, even if you disagree with me.  There has been real controversy about not letting family in to see their loved ones.  The elderly are dying from loneliness in facilities without the comfort of their families, and the families are angry and frustrated that they can't go in.  I totally understand both viewpoints, believe me.  And it makes me angry to see nurses and other health care workers out in crowded places in the real world without their masks.  They have a duty because of where they work to keep themselves safe.  But what if you had it, and were still asymptomatic and went and visited your loved one, later tested positive, and infected both your loved one, and then as a result the whole community was infected.  How would you feel?  How would you feel and what would you do if your loved one was dying of COVID and was in the COVID unit at their facility.  Would you risk going in, even with protective gear, and risk infecting yourself and then potentially pass it on to your family.  How would you feel?  What if this drags on through the winter, which is looking more and more possible?  The facilities are trying to make accommodations, but the state regulations are onerous and keep changing all the time.  

I was praying to God as I decided to write this blog to guide me in what I said.  I literally sat down at the computer when my favorite nurse from Hillside called.  We have been talking on and off for the past 2 weeks as Bob has been running a fever up to 102 degrees.  Two COVID tests were negative, blood work looked fine, two chest X-rays were clear, and the first urine sample came back clear.  But because his urine looked so bad, they sent another one and did a culture and sensitivity on it.  This time it showed bacteria in the urine.  So the nurse was calling to tell me that the nurse practitioner had ordered oral antibiotics.  I had been wresting whether to allow that or just let nature take its course.  At one point she told me Bob was not eating or drinking, probably because he felt bad, and at that time, I said "no IVs and no IV antibiotics."  We discussed all aspects of this scenario in our garage coffee meeting as well.  It is so true that you don't know what to do until you walk in someone else's shoes, and these ladies all understand so well!  And we decided maybe it was something you could fret and stew over, but when the time came, it would be clear to you what to do.  His (and my) advance directive, which of course Bob deferred to me on, has a big question mark under "would you want to be given antibiotics?"  So when the nurse called today she told me she knew I was agonizing over it.  But she said that Bob was now eating and drinking well.  The other day she was feeding him and he tapped her arm to tell her he was ready for another bite!  She said the antibiotics that were ordered were oral and prescribed for twice a day for 7 days.  She has so much experience in this area I value her opinion.  She said she would recommend that we do the oral antibiotics, and then if they don't work, or if Bob stops eating and drinking again, then we would know that it was his time to go.  I am not going to ask "what would you do in this situation",  as it is still evolving, and I have to do what I think is right and be at peace with it.  When I was on the ethics committee at the hospital, we could make recommendations, but in the end, it was the family's decision.  

My emotions have been all over the place today as I found out that two of our husbands from the support group tested positive.  One is in a facility and the other is still at home.  I read an article from Elemental newsletter the other day by Tara Haelle.  She was talking about our surge capacity being depleted.  "Surge capacity is a collection of adaptive systems--mental and physical--that humans draw on for short-term survival in acutely stressful situations, such as natural disasters.  But natural disasters occur over a short period, even if recovery is long.  Pandemics are different--the disaster itself stretches out indefinitely."  I don't know about you, but I am tired of it!  Plus all the fires, hurricanes, protests, and politics seem to be coming together for a perfect storm!

Tara goes on to ask "How do you adjust to an ever-changing situation where the 'new normal' is indefinite uncertainty?  Our new normal is always feeling a little off balance, like trying to stand in a dinghy on rough seas, and not knowing when the storm will pass."

All I can know is that I can trust in the One who stilled the tempest on the Sea of Galilee so long ago.  He can calm the tempests in our hearts and give us strength to carry on.

And now I must go scare away the woodpecker that is determined to peck a hole in my house.  Libby is usually here to do it!

Betty

 The summer has flown by.  Oh wait!  It is still summer, but is beginning to feel a bit like fall.  We have had unseasonably cool weather the past few days, but temperatures will be back up for the weekend.  But the main difference is that Libby started school.  Yes, August 3!  Schools in our area have been pushed back to a start date after Labor Day, but Libby lives in Tennessee and they are going ahead, even though cases in both areas have escalated.  So when her school that she will attend this year offered the virtual option, her mom jumped on it, and Libby will stay here for now and do the virtual option, where she can remain relatively safe.  Others in her class are doing the virtual option as well.  There were a few computer glitches the first couple of days (surprise, surprise!) but today everything worked well and she seems to enjoy it.  She likes her home room teacher.  School starts in Tennessee at 8am so it is 7am for us in this time zone--a real change to our summer routine!

We have been doing a lot of things outside this summer, and carefully follow the mask mandate.  We have avoided restaurants, which I really miss, but have done take out a few times.  Sometimes this new routine to our routine seems surreal, and it has the added dimension of not knowing who and what to believe.  We have had 2 window visits with Bob, and then the facility started opening up to visits with the family outside.  They are still in lockdown mode, and I am so proud of them that they still remain COVID free.  I really don't know how they do, with all the workers coming and going, but they are very committed to keep themselves and the residents safe.  The last visit was outside with 10 feet distancing, and of course wearing masks.  I was a little concerned that Bob would not be able to focus on us that far away, but he did, and motioned for us to come closer.  It was hard to say that we couldn't as I know he couldn't understand why.  I have another one Tuesday and the facility still Facetimes everyday.  Sometimes he will try to reach for the tablet.

A couple of weeks ago the nurse phoned and said he hadn't been eating or drinking.  The nurse practitioner had seen him and said his blood work showed he was dehydrated.  She had ordered to push fluids for a couple of days, and they they would repeat the lab work, and if he was still dehydrated, the plan was to start IVs.  I so wanted to go out and assess him myself, and get him to drink fluids as I know how he likes to drink.  I gave the nurse some tips and we talked about that he had been started on thickened liquids as he seemed to be choking more.  She said the thickener wasn't much, but just like nectar.  I also told her I didn't want IVs started, that if Bob was not eating and drinking, we were going to let nature take its course.  But a couple of days later he was eating and drinking again.  Maybe he was just taking longer to recover from a seizure, as he has had some of them.  But I didn't sleep for a couple of nights!  They include me in the care plan meetings by phone.  His weight has held steady.  

The last time I saw Bob in March, I must have sensed something.  Usually I would go out and maybe feed him lunch and then would sit in the comfortable recliner in his room and read a book while he napped.  But that day, I instead sat on a folding chair by his bed, and held his hand.  He didn't sleep that day, and every so often he would squeeze my hand, and I would squeeze his back.  Then the notice came the next day that the facility was going into lockdown.  Now, months later, I still look back to that memory, and imagine him squeezing my hand.  I am heartbroken by the way this virus has affected everyone.  Anyone that goes into a hospital or care facility cannot have their loved ones with them even if it is for a procedure or an illness separate from COVID.  I think of all the people that died alone, and the grief their loved ones will have until the end of their lives that they couldn't be with them.  I think of the children that have been abused because of it, the marriage relationships that crumbled, and the loneliness and isolation that so many are having to bear.  I think of all the jobs that have been lost, the bills that are unpaid with no way to pay them, the children and families that are hungry because there is no work.  So many dreams shattered with no warning.  I miss going to church, being with my friends, but that is all so minute compared to what others are experiencing, that I almost feel guilty.  On a side note, I miss my Alzheimer's support group.  We do it by a Zoom call, but it isn't the same.  The hugs, the touches, the welcome tears are missing.  The Alzheimer's office that was so helpful to me when I started this journey is shuttered and they say they will not open until there is a vaccine.  I hope they are still working from home, but to me it sends a message that they are not essential.  Since the support group is sponsored by the Alzheimer's Association that means we cannot meet in person again until a vaccine is found.  (Don't get me started down that path!)  I just found out that one of our group is in the hospital with COVID.  He would call me from time to time and I would call him, just to talk.  His daughter says the doctors are cautiously optimistic, so he is included in the nightly prayer Libby and I say.  She prays for all the animals every night; yes, they are affected as well.  We lost one of the kitties suddenly to what looked like the symptoms of a human having a heart attack.  She she has learned about death first hand this summer.  

I want to end with the prayer of Saint Francis.  Never has it seemed more relevant than now.  I cannot fathom all the hatred, anger, selfishness, and sadness that this has all generated.  All we can individually do is be an instrument of peace to the ones in our personal world.

Lord, make me and instrument of Thy peace.  Where there is hatred, let me sow love; Where there is injury, pardon;  Where there is doubt, faith;  Where there is despair, hope;  Where there is darkness, light;  Where there is sadness, joy.  Grant that I may not so much seek to be consoled, as to console;  To be understood, as to understand;  To be loved, as to love;  For it is in giving that we receive, it is in pardoning that we are pardoned, It is in dying that we are born to eternal life.

Love to you all, and stay safe,

Betty

This will not be a very long post.  For those of you who follow me on Facebook, you will know that I have 10 year old granddaughter Libby with me this summer.  She came May 16, and will stay until the end of July.  We are very busy and having a great time.  It is certainly a different summer, as we will not be going to most of the places we usually frequent.  Our neighborhood swimming pool is open, but I don't feel like I want to do that so she and a friend have been swimming in our neighborhood lake which is spring fed, so it is very clear and beautiful.  I am so glad it is summer and we can get out of the house, or it would be much harder to find things to do.  But reading books and playing games is also becoming a favorite thing to do.  We have been reading an excellent series of children's books by Kenneth Thomasma, who has done his research well.  They are historical novels about the Native American tribes and their people.  The children in the stories seem to come alive.  What the Native American people had to endure and the abuse they suffered to me is comparable to what African American people have gone through and are going through.  So it is also an educational summer.
One difference is that we cannot go see Bob like we usually do.  I doubt Libby will be able to hug or even to touch Bob this summer.  I am so thankful that Hillside Village is DeSoto is sticking to its strict visitor policies however as they remain COVID free--both the residents and the staff.  We have had one window visit with Bob and have another one scheduled for next week.  I know Bob knew Libby as when he saw her, he started crying.  They were Facetiming at the same time, so we could talk to him.  I am so thankful that the facility Facetimes with us every day.  It is so reassuring to be able to see him.  He yelled "Hello" the other day when he saw me, but other than that he doesn't talk.  He is looking really good and gaining weight.  One of the staff gave him a haircut as no stylists are allowed in yet, and although it was shorter than it has ever been, it looked better than the bushy look!
He has had two seizures, and the staff calls me, but the next day he seems to be nicely recovered from them. 
He was taken off hospice last Friday.  He didn't meet any criteria to remain on hospice!  He had been
on hospice for 3 years.  I used to worry a lot about what would happen if he went off hospice, but now that Bob is at Hillside Village, I am at peace.  They have all the staff and equipment they need to shower him, feed him, and move him.  The only equipment I have to provide is the fancy Broda wheelchair, and I am renting that.  The facility furnishes all the other supplies and equipment.  I still am amazed when I think of it how God worked it out for Bob to get to Hillside Village before all this craziness happened.  How could any of us have seen this coming?
I will end with the words of a song written by Annie Johnson Flint:

"God has not promised, skies always blue,  Flower-strewn pathways all our lives though;
God has not promised sun without rain, joy without sorrow, peace without pain.

But God has promised strength for the day, rest for the labor, light for the way,
Grace for the trials, help from above, unfailing sympathy, undying love."

So as we go on into this uncharted territory, we can only take one day at a time.  We just have to
know there is a faithful, never-changing God in control. 
I wish you peace.
Betty

We are still in the midst of the pandemic--only one of the storms that has struck during this Alzheimer's journey.  But I am so thankful that Bob remains in a safe harbor to weather this out.  The facility has no COVID patients.  They sent one out to be tested, but the result was negative.  I am sure it is because they were proactive in shutting down, and I am so thankful for that, and that God saw to it that Bob was where he needed to be during this time.  I had a scheduled care plan conference with the facility last week, and Bob is still gaining weight.  They Facetime with me every day so I can see him and he looks good.  One day I was talking a mile a minute to him and telling him everything I am doing, and he looked straight at the screen and said "Blah, blah, blah!"  That was a shock because he rarely says anything now--can you imagine?  The caregiver and I both broke out in laughter!  I am just so thankful as well that I don't think the passage of time means anything to him and he doesn't realize I am not coming.  That would break my heart.  I think the facility will be one of the last things to open up again and I am fine with that.  It is such a vulnerable population and I fear that a "second wave" would be a real possibility if things are opened too soon.  At the same time, I feel so sad for the people that need to return to work to just pay the rent and buy food.  And for the small businesses owners whose dreams have been shattered and probably will never reopen.  I cannot imagine what that must be like.
I have pared down the slides to a manageable number and am quite proud of that.  Now I am starting on the file cabinets in the basement.  I have come across things from my grade school days, and even letters from when we lived in Africa.  I had a file with just different programs we put on.  One was from our high school days; we did it for speech class.  Bob was a young shopkeeper in a cheese store and I was an old lady customer who was deaf as a doorknob.  He kept asking me what kind of cheese I wanted, and I would respond with "Yes, it is a lovely breeze" and "Oh, you have to sneeze" and other dumb things like that.  He finally came to the end of his rope and was yelling "Cheese!  I said Cheese!" at me when the owner came in and asked what was going on.  He told the owner how dumb I was, and the owner came over to me and put his arm around me and said, "But you know the customer is always right."  Bob fainted.  This became more truth than fiction in later years as our hearing mutually decreased.  And we would look at each other and laugh and say "Cheese!"  Next, I am going to start on the 60 years and 2 full file drawers of birthday, anniversary, Valentine etc cards.  That will be more difficult, but again, each one will spark a wonderful memory.
I am going to end with a devotional by Max Lucado.  It seems especially appropriate right now with the journey we are all on together.

"For some of you, the journey has been long.  Very long and stormy.  In no way do I wish to minimize the difficulties that you have had to face along the way.  Some of you have shouldered burdens that few of us could every carry.  You have bid farewell to life-long partners.  You have been robbed of life-long dreams.  You have been given bodies that can't sustain your spirit.  You have bills that outnumber the paychecks and challenges that outweigh the strength.
And you are tired.
It's hard for you to see the City in the midst of the storms.  The desire to pull over to the side of the road and get out entices you.  You want to go on, but some days the road seems so long.
Let me encourage you....God never said that the journey would be easy, but He did say that the arrival would be worthwhile.
What we see will last only a short time, but what we cannot see will last forever.  I Cor. 4:18"

Hang on, my friend.  Weeping may endure for a night, but joy comes in the morning.
Love and virtual hugs to you all,
Betty

 I am social distancing.  It is a new term, and one I hope won't have to be used for very long.  But, as Rabbi Yosef Kanefsky says "I'd humbly suggest that we use the term itself sparingly if at all.  Language is a powerful shaper of thinking.  And the very last thing we need right now, is a mindset of mutual distancing.  We actually need to be thinking in the exact opposite way.  Every hand that we don't shake must become a phone call that we place.  Every embrace that we avoid must become a verbal expression of warmth and concern."
I have not been able to see Bob in over a week, but Hillside Village is having us Facetime, so at least
we can see each other.  I am thankful that Hillside Village was proactive in protecting their residents, and not acting like they are expendable.  I don't think Bob knows the difference that I am not coming, but I miss the physical touch, holding his hand.  The nurses from hospice can come in, but the auxiliary personnel like bath aides are asked not to come, so that makes more work for the facility.  But I am at peace, knowing they have the personnel and equipment to do the showers.  Then a couple of days ago there was an update by email saying they are even doing "social distancing" in the facility.  The residents that are able to feed themselves are given their food in their rooms in styrofoam containers.  The ones that have to be fed (like Bob) are still taken to the dining room and fed there, but there is only one resident now per table and they take them back to their rooms one at a time so they can keep the 6 feet apart distance!  I am thankful they are taking all the necessary precautions!  Please say a prayer for health care workers everywhere that they will be kept safe while serving others.
Bob has gained 7 pounds since he got there January 10.  I am not surprised as the portions of food are huge, and the food looks and smells very good!  And I think most of the time he eats everything on his plate.  I am now thinking that he is doing so well that he may be taken off hospice care.  I would be frantic if he was still at the previous facility, as I was well aware that hospice filled in the gaps there.  But God's timing again was perfect, and He got Bob to Hillside before all this coronavirus thing started.  Who knew?  Not me!  And Hillside has all the equipment he needs except the special Broda wheelchair he is in.  And there is no extra charge for the incontinent supplies which they furnish.  Hospice furnished all the incontinent supplies before, and that was a big savings for me, and kept me from worrying that he would run out while I was on a trip.  Even with hospice furnishing the supplies before, Bob would run out of supplies, as nurses all know supplies are "borrowed" from surrounding rooms when the other residents have run out.  That is what makes it so nice at Hillside--supplies are not individually charged for as the owner believes you shouldn't step over a quarter to pick up a dime.  Or maybe it is the other way around!  Anyway,  I would have been upset if I had been buying the supplies out of my own pocket.  Borrowing supplies is socialism at it's best!

I went to a seminar recently and picked up this gem called "Boost your resilience".  I think it is especially appropriate for the days we are living in right now.

You are allowed...

*to be sad  *to feel helpless  *to be tired  *to be depressed  *to be lonely  *to be angry  *to cry
*to feel out of control  *to feel overwhelmed  *to feel scared  *to grieve  *to feel like no one can relate  *to wish this never happened to you--or others  *to feel behind  *to wonder what if?
*to long for simple things, and simple times...  *to wish for more

But on the flip side...
You are allowed...

*to feel lucky  *to be grateful  *to feel loved  *to be hopeful  *to realize you are not alone
*to find joy  *to realize you are stronger than you ever thought  *to laugh  *to be surrounded by people who care  *to feel nurtured  *to be inspired  *to feel chosen  *to be motivated  *to be
filled with faith  *to do what you can  *to learn to ask for help  *to make a difference
*to be be-YOU-tiful!

WHICH SIDE OF THE CARD ARE YOU ON TODAY?
kimbecking.com

So I challenge you to do what you can to help and support others while also doing all you can to protect yourself.  Make that phone call; send someone a card.  I think I am going to go through slides of all our trips, weed out the ones that are just landscapes and keep the photos of scenes that have Bob and I in them, or friends, or family.  People all of a sudden seem important.  It seems like an overwhelming task, but hopefully my kids will thank me someday!  And I have time to do it NOW!
And I will let the pictures take me down memory lane.....

Love to all of you as we hunker down!  We will get through this!
Betty

Bob has been at his new residence, Hillside Village, for almost a month now.  Oh, and now that I have been exploring around the town of De Soto, Kansas (not Missouri!) I think I know why it is called Hillside Village.  The whole town is on a hillside above the Kansas River.  I love little towns, but Bob liked the big city.  So it is ironic that he is now living in a little town, and I live more in a city!  He is getting along so well.  I am so sad that I didn't think about this before, as it had been talked about, but never acted on before.  He was on the medication Resperidone for agitation.  It was mentioned by the director of nursing when he first moved to The Piper that it probably should be weaned off, but then she quit, and it never was addressed again.  When he was admitted to Hillside Village, immediately they asked if they could wean it off, as they didn't like their residents being on that type of medication.  I readily agreed, and now it seems that Bob has become more alert, more talkative, and isn't sleeping as much.  Plus he really reacts to the friendly staff. 
I am going to talk about one more interaction with The Piper, and then I will forever move on from that subject.  Right about the time I had told them I was moving Bob, an article was posted on their Facebook page about conflict resolution.  I found it rather strange that it happened at the same time, but they assured me that an independent company took care of such.  One paragraph stated that "the residents may be perfectly happy where they are, but it is the families that are not."  I submit that Bob could not have told me if he was unhappy, so I had to be the advocate and use my powers of observation to perceive what was going on.  Another paragraph:  "It is important to move slowly so that decisions are not made from an emotional state."  I had made excuses for the way things were for a long time, had made complaints, but nothing ever changed, just got progressively worse.  Another statement was that they could not force the residents to shower.  Yes, I agree.  But when a resident is asked if they want to take a shower, they are always going to say "no".  So then the staff can chart "resident refused" and move on.  And they cannot be dragged in to shower.  If the staff has proper dementia care training, and approach the resident the right way, maybe several times the same morning, and make a game of it, they would have better success. 
I asked for an appointment with the owner of The Piper.  I took 2 dear friends along, who had also observed for themselves what was going on, with the lack of staff.  We all talked for over 2 hours, and the owner paid very close attention.  I truly think he had no idea how bad it had become.  At the end I told him that I hoped he would take what we said to heart, and make changes.  He said "I will."  As a sidelight, the article on Facebook on conflict resolution was taken down the next day.  As I have said before, he has his job cut out for him.  All these beautiful facilities are being built all over town with no one to staff them. 
Let's go  back at Hillside Village.  They told me one day when I went out that they had put Bob on the toilet and he had had a large stool.  When I voiced how happy I was to hear that, the young man said simply "It's all about dignity."  I remember when my mother was in the nursing home here in town.  I came in one day to check on her as I did regularly.  She was crying and I asked why.   She said she would ask them to put her on the bedpan.  They would tell her just to go in her diaper as it was easier to clean up.  Yes, it is all about dignity.  And the following incident happened at the hospital where I worked.  I was a team leader one night and asked my CNA to go give a patient some water as she was unable to get to it herself.  The CNA told me she wasn't going to do that till end of shift as the patient would wet herself, and then she would have to change the bed.  I will leave you to imagine all I said, but it was along the lines of "I can't believe you just said that to me..."
I would like to suggest that you can "train" a person thoroughly in classes, but true caring comes from the heart. 
The Director of Nursing at Hillside Village, Peg Wessel, was presented an award Thursday at the facility for excellence in nursing.  Nurses from the Kansas state legislature were there, and there was a nice little party with the residents and families with cake and punch.  If anyone deserves it, she does, as she leads by example. 
In case you hadn't heard, the Kansas City Chiefs won the Superbowl!  The whole city was ecstatic and came together to celebrate.  Why can't this kind and gentler spirit last the rest of the year???
In the meantime, please be kinder than necessary. (per Suzel!)
Betty

The snow is gently falling and quiet except for the sounds of the snowplows and salt trucks going through periodically.  The bears have it right--hibernate when the snow falls.  Except they don't eat, and I don't go along with that.  Everything is so peaceful and I am more at peace than I have been in several weeks.
I had been observing for awhile that Bob's care had gotten too heavy for the facility that he was in.  When he first was admitted there, almost 3 years to the day, he was ambulatory and it was a good fit.  But now that he is total care, it was just too much for the amount of staff they had.  They limped along and made it through the holidays only because students were home from school periodically and picked up a few shifts of work.  But then one of the regular staff was off after having surgery, and it brought to a head how little resources there were.  Staff were working 12-16 hours a day and were exhausted mentally and physically.  And the night shift staffing got to be in the critical range.  I certainly sympathize with the problem, as in this area many glorious new facilities are being built with no thought of who is going to staff them.  By the way, when a place starts intensely advertising and saying how great they are, BEWARE.
So with a great friend in tow, we started frantically searching for a new place.  It was breaking my heart, as I love the staff (all 2 of them) at the place where he is now, and I love the residents and I love the other families.  You all bond and become like family.  But the search only highlighted the problem.  We learned very quickly that you couldn't trust the rating and the comments on a facilities web site.  How some comments about the same place could be at the opposite end of the spectrum was baffling!  I got to the place I felt like some of the glowing ratings were fake.  And medicare would even give a place a 5 star rating and when you walked in the smell of urine was overwhelming.  Cross that off the list right away!  The website "A place for mom" was helpful, but they readily admitted that places paid to be on their list.  A person from the Alzheimer's Association that spoke at the funeral of a husband of a friend from our support group was kind enough to talk to me about how to pick a place.  She said to just pop in a mealtime.  See how the workers are interacting with the residents.  See if they are talking to them.  See if they are taking the time and patience to feed them properly.  I felt the urgency of finding a new place quickly, so I had all kinds of people praying for me.  Some of the places were deplorable.  And I am so sad to say that one of the places that has a red flag for neglect and abuse is run by Advent Health (the new corporate name of Shawnee Mission Medical Center where Bob and I worked, and the hospital we loved.)  I am so embarrassed by this that I could spit.  They are building brand new sparkling sports medicine centers, and the nursing facility with a desperate need is in that condition?  The aging population is now the greatest need and they are totally missing the boat in that area.  I know 2 families that have their loved ones there and they are having to do all the care.  I had almost come to the conclusion that I would have to move him to a place right down the street from me and just step into the hands on caregiving role.  We got as far with one facility that they came to do an assessment on Bob, but they said right away that his level of care was too high for them.  He doesn't need Alzheimer's care now, just good nursing care.  When I had told them exactly at the facility what equipment etc. that he required, they assured me that "Oh we can do that!"  But God shut that door and at support group I found out how thankful I was that He did, as one of the other ladies had had her husband there, and couldn't wait to bring him home.  I knew bringing Bob home wasn't an option, as I would have died before he did.  My mind would run wild at night.  I thought of bringing him home and putting the hospice bed in the living room, and hiring my favorite CNA from The Piper to care for her and she could live in the spare bedroom.  But then who would take care of the residents at The Piper!? 
But then one day God flung the door open wide, just in time as I was getting exhausted and depressed.  Another friend that was looking frantically also for a place for her mom with Alzheimer's told me she was going to go visit a place in Desoto, KS.  She was given 3 days to find a place for her mom after she went off rehab.  The hospice nurse practitioner had casually mentioned this place, but I had crossed it off my list as it is further away than even the drive I had to The Piper.  It takes 25 minutes to get there and it is 25 miles away, but through beautiful Kansas farmland.  Oops, no more zipping down the interstate at 80 mph....The name of the facility is Hillside Village of Desoto.  I don't know why, as it isn't on a hillside, but the grounds are beautiful, and Bob has a beautiful view out his window instead of parked cars.  The OWNER of the facility met us to give us the tour.  There 87 beds, 49 on the rehab and long term care side and 38 on the assisted living side.  We started off on the assisted living side where his mom is a resident, after fighting him when he had to move her from DesMoines, Iowa.  As we continued the tour, I knew immediately that this was the place I wanted Bob.  There was staff EVERYWHERE!  There was a nursing station ON THE UNIT!  Activities were going on, the place was being CLEANED!  I asked the owner about halfway through if there were any private rooms available and shut my eyes and prayed while he was thinking.  He messaged the director of nursing whose office was ON THE UNIT!  Soon she came running down the hall, and told us at first she didn't think they did, but she had found a way to make it work.  I immediately said "I'll take it!"  It took a couple of days to do the paperwork, and they WORKED WITH hospice (instead of against them as before) to coordinate the move.  Hospice got their new bed with an alternating pressure mattress to the new facility, picked up their old equipment at The Piper, and the facility picked Bob up in their transport van Thursday.  I met him there, and it was lunchtime.  They asked if he was hungry, and he said "YES!"  They have since remarked how good an eater he is!  And I took his prune juice along, and they looked at me funny and said "Why are you bringing that?  We have plenty of that here!" 
I am not going there today because of the weather.  But I don't feel that I have to, and I can rest knowing he is being well cared for.  When folks ask where he is and I tell them, EVERYONE says nothing but good about it.  The director of nurses is roaming the halls, if you can believe that.  She is friendly, the staff are friendly and everyone asks if you are looking bewildered "Can I help you?"  Maybe they have been taught to do that, but they have been taught well.  I can't help but think that maybe because it is a small town, and the workers are mostly from around there, that maybe it gives them a sense of community, and a desire to work together.  Everyone from the shift nurse to the CNAs come in and sit down and chat to get acquainted.  The OWNER roams the halls!  He saw me as I was leaving the other day and gave me a big hug and said "You did it!"  I said, "No, God did it!"
The administrator was wearing a Chiefs shirt yesterday.  His office is right down the hall from Bob's room.  You have heard that the Chiefs are in the playoffs Sunday, right?  The director of nursing was wearing a Chief's shirt.  Her office is also right on the unit.  The nurse's office is 2 rooms down from Bob.  His evening CNA had a Chief's shirt on.  He is going to the game Sunday and tailgate.  OK, maybe there are a FEW crazy people that work there.....
Thanks to all my friends who have supported me through all of this.  I think this was even more traumatic than it will be when Bob dies.  I am somewhat prepared for that.  I was not prepared for this and the stress it would cause.  But again, if it can be helpful to someone else, it was worth it.
Go Chiefs!
Betty