I didn't write a blog during the month of June.  My mother used to write articles, mainly for children's magazines, and she had many published!  She would say that she couldn't write until the "muse" hit.  I heartily agree and the muse didn't hit in June!

First of all, granddaughter Libby came to visit and that was a highlight of the month.  She could only stay 2 weeks this year, as she was busy at home with all the activities a pre-teen girl is involved with.  But she saw Pop Pop several times when she was here, and as usual can get him to react in ways that no one else can!  She played with balloons with him (an old game of theirs) and he would try to bat it back with his hands, but he found that hitting it back with his head like a soccer ball worked better!  And she was able to feed him some strawberries, a favorite of both of them.  And of course there were M&Ms which they shared.  My friend Judie and I drove her home and it was a fun trip for all of us.

Bob developed an ominous rattle in his chest about the middle of June but so far it has remained bronchial and he has had the strength to cough up the crud, so it hasn't developed into pneumonia yet.  Daughter Valerie and family came for Father's Day and we went to see him and took pictures in case his condition suddenly got worse.  He developed a slight fever, but seemed to shake it off.  Again, as with earlier infections, I agonized about antibiotics.  I didn't have to make a decision, but this time I think I would have said "no".  He is not eating, and visibly declining, so I don't want to prolong it.

I have been going out to see Bob frequently since I returned from the trip.  I have quit asking if he is eating or not, because it is so sporadic that I can't handle the emotional roller coaster it was causing to know one way or the other.  But he has lost 9 pounds in the last month, so it is consistently a downward spiral.  I have gotten to feed him in his room twice this week.  He still will take thickened liquids, but chokes on them sometimes.  He just takes a few bites, and that is it.  He doesn't even want the Magic Cups, which are like ice cream.  BUT, sneak a few M&Ms in between his lips, and he eats them with obvious relish!  Usually I just sit and hold his hand.  Today he stroked my hand with his other hand.  

I found this in my file and it seems like an appropriate time to use it.  The last 3 paragraphs are mine.

I believe that when a loved one has dementia you experience many layers of grief.

The first wave of grief comes with the diagnosis.  The realization that the person who has supported you all your life, will no longer be able to do so, no matter how hard they try.

Grief the first time they struggle to remember your name or your relationship to each other.

Grief when you have to accept that you no longer can keep them at home.

Grief as they lost the ability to communicate, as another piece of the jigsaw is lost.

Grief as you watch the body deteriorate, along with the mind, and you rave at the injustice of it all.

Grief when you know, but you want to deny, that the inevitable is happening to you and your loved one, and you will be separated.  

But you ask, as so many in my support group have tearfully asked, "How much longer can this go on?"

I wish I could answer that question.  But I can't.  Only God knows, and it is all in His hands.

Until next time,

Betty

 We are having a rainy, grey month of May, but there is sunshine in my heart!  I try to go see Bob about every other day, and it is a joy just to sit and hold his hand.  Last week I took his long time secretary, Judie Royer and another long time worker from Environmental Services, Fred DeSieghardt.  Bob was in charge of ES and Laundry when we moved here, and Fred had worked for Bob since he graduated high school and his father came to Bob and asked if he had a job for Fred.  Since Bob was afflicted with cerebral palsy as a child, he had a special place in his heart for the handicapped.  They became buddies, loyal friends, and Fred worked in ES until he retired and now volunteers in the laundry 2 days a week.  He is an amazing person with his recall of names, dates, figures, and especially statistics of the KC Royals and Chiefs.  One day Bob came home from work really worked up.  He found out that Fred was being teased by his co-workers when the Royals or Chiefs lost.  He had gathered the department together and asked them why, if they called themselves Christian, they were treating someone less fortunate in that manner?  Bob always stuck up for the underdog.  So when Fred and Judy walked in Bob's room last week, the joy on Bob's face was indescribable.  He reached out his arms to Fred, and was almost crying he was so happy.  He might not have remembered his name, but it was obviously someone he loved.  It was such a blessing to have him so alert that day, as he also reacted to Judie and I a lot and he told me he loved me.  Of course, I was saying that to him, but it was a joy to have him repeat it back!

Then two days later I got a call from Hillside Village while I was eating breakfast.  It is never a good thing to see "Nurse at Hillside Village" on your caller ID.  She said Bob had a seizure during breakfast that lasted 5 minutes.  They got him back to bed, but she said he was chalky white, his skin looked like wax, and he wasn't breathing.  She told me they thought he was gone, but then he took a breath, and started breathing again.  When I got out there, he was starting to respond, but he was pretty much out of it for the rest of the day.  And then, per usual after a seizure, he was much more alert the next day.  As much as I want to be with him when he passes, this episode made me realize I may not get that wish.  He started eating again Mother's Day weekend.  They had been giving him the house formula high protein shakes, and he eats the Magic Cups well for me now.  It is a frozen cup that looks like ice cream, but when thawed it looks like pudding.  And of course both of them satisfy his sweet tooth.  The evening nurses dips his grilled cheese sandwiches in cranberry juice.  He loves both of those and does well eating the softened combo!  And I still give him M&M treats when I am there!

In closing,  I want to talk about a term I saw on Facebook recently.  It was "holding space".  (Thanks Kandy!)  I had never heard that term before, have you?  Maybe because I don't have to go to the endless seminars that are required for nurses to renew their licenses.  But I was curious to see what it meant, so I asked my friend Google, and this is what I found:  "At the end of the day, it means to not make it about you.  That's it.  Holding space means to make it about someone else.  Plain and simple..  But most people can not do this.  Why?  Because we're used to high jacking spaces.  We're wired to take.  To want.  To seek from others.  We don't want to accept someone's opinions and worldviews if they don't match ours.  It means to accept someone without judgment.  To donate your ears and heart without wanting anything back.  To practice empathy and compassion.  To accept someone's truth, no matter what they are.  To allow and accept.  Embrace with two hands instead of pointing with one finger.  Holding space means to put your needs and opinions aside and allow someone to just be. Themselves."  Thanks Bob for being an example of that, but I am still trying.

Another buddy of his is coming next month--our granddaughter Libby, who holds space very well.  She loves her Pop Pop and will get to hug him this time when she see him, not just see him through a window!  What a joy that will be!

Until we meet again, lets do our best to hold space for someone!

Betty

 As I promised last month, in this blog we will talk about something very important--the financial impact of Alzheimer's.  But first I will bring you up to date with what is happening with Bob.  First of all, I am so grateful that I can go visit him every day if I want to.  I am so glad I can again be with him in this part of the journey, and I am praying that the virus doesn't surge  and shut things down again.  I go there about every other day, and usually just sit and hold his hand.  He still has a very strong grip, and will not release when it is time for me to go!  He seems very engaged and tries to get some words out without success.  Except the other day after I brushed his teeth he said "Feels good" and one day when I told him I loved him he responded "I love you too."  But the main problem right now is that it seems like his brain is not telling him to eat.  I take his favorite treats for him, such as raspberries and vanilla ice cream, but he just will not open his mouth, even when I touch the ice cream to his lips.  The staff at Hillside concur that they are having the same problem, and even when he gets it in his mouth, he just holds it there.  Now I have found that when I can sneak an M and M in his mouth, he will chew it with relish!  He has started losing weight, and now weighs less than when we got married.  Now he is taking a long time to feed, as opposed to when he ate heartily, and I so appreciate the patience of the caregivers that feed him.  He still is taking liquids fairly well, but they have to be thickened, or he will choke on them.   As Bob and I discussed many years ago when we made our living will, there will not be a feeding tube.  This just seems to be an ongoing progression of the disease.  

Now for the meat!  First of all, I cannot highly recommend enough that you use and elder care attorney.  They are costly, but in the long run can help with your finances and will probably save you money in the end.  And it is important to find someone you are comfortable with.  Some will give you a free hour of consultation before you sign up.  The elder care attorney I had used for years dropped dead of a heart attack just before Christmas at age 65.  I was devastated, as he would have regular conferences once or twice a year with me, daughter and son-in-law and my financial planner.  That way, they could determine where we were and if we needed to do anything financially, like division of assets (which I will address later).  No one else in the firm was wanting to do that, so word of mouth led me to another lady that I have now signed on with, and I feel very confident with her. 

The division of assets is a very important thing to know, and I am forever grateful to the friend that first told me about them when she learned what I was facing.  This is why it is important to have an elder care attorney, as you can just get a form off the internet, or have anyone help you with it, and you could do it at a totally wrong time.  The attorney can look at your assets, and determine when it is time to divide the assets between the spouses.  I could then keep my half of the assets and just use Bob's assets for his care until he would spend down to $2000 (in Kansas) and then he would be eligible to go on Medicaid.  But it is so different in every state.  For instance, in Kansas, my IRA is protected, and in Missouri, just a few miles away, it isn't, and I would have to also use mine for pay for Bob's care.  Another thing to mention is that after death, when the house is sold (homes and cars are also protected) usually the money has to go to the state until the amount that was spent on Medicaid (Not Medicare!) has been repaid.  But an elder care attorney can help you with ways around that.

First let's talk about options that can be explored before dementia becomes a factor. Becoming more and more popular, at least in this area, are the CCRCs--continuing care retirement communities.  They are typically operated with a buy-in plan, though some are now offering monthly rent in their communities--to compete with other newer facilities, I imagine! The buy in plan covers your care from the time you move in independently, through assisted living, and then nursing home care.  Some also have dementia care and rehab.  And now I think they are more apt to help you set up a plan that would leave assets to your heirs upon your death than they used to be.  The ones I have toured typically want you to live in independent living for at least 2 years before you move to more care, so they will assess your mobility etc. before you move in.  They are very social, with a lot of amenities and activities and have meal plans.  You will also pay a monthly fee to cover utilities, cleaning, food, etc.  Be careful though!  Some stay at the monthly rate you sign in with though out your life there, with only cost of living increases.  Others, you start at one rate, and the the rate increases as your level of care increases.  So there is a lot to thing about.  If you should put down a deposit while you are on a waiting list or while you are thinking about it, be sure to ask if the deposit is refundable.  Unfortunately none of us has a crystal ball we can look into to see how our lives will end.  One can only hope you will die in your sleep!  But CCRCs can help give peace of mind that you won't have to move again.

There is also a huge boom in independent living facilities which may or may not have assisted living available that are month-to month rent.  There is no continuum of care.  They usually have meal plans, but there is a facility right down the street from me that does not.  These facilities all have beautiful amenities, opportunities for socialization, and come in all different price ranges. (And NO housework, as they do the cleaning!)  Also, home health agencies can come in these facilities and help with medical care for the short term, or longer term I imagine depending on your insurance.  A thought about these facilities is that you can put a deposit down while you are on the waiting list or just want to wait awhile until you make your final decision. Typically, you would get the deposit (usually about $500 ) back if you decide you don't want to move in, or it would be applied to your first month rent if you do move in.  So you could conceivably have deposits down in more than one place.  This is an overwhelming thing to think about, but  probably a year in advance of moving in is a good timeline to start thinking about it.  There is a real problem brewing however, and it will only increase as more of us age.  There are now so many of these facilities that they can't find staffing, and many places are working short, or using agency staff which is a downside for many reasons.  Workers are also constantly moving from place to place where they can maybe get 50 cents more an hour, so the loyalty and dedication, and consequently, resident care suffers.  

Now let's address what happens when there is the uneasiness  you feel when you realize "something" is happening to your loved one.  And then the terror of the Alzheimer's diagnosis happens.  Your spouse, your soulmate who you have so often relied on cannot help you make decisions, cannot make them anymore.  You suddenly realize you are on your own.  First of all there is the option of the one with Alzheimer's remaining in your home.  I had promised Bob I wouldn't put him in a facility.  "I'm a nurse.  I can do this, right?"  I really wrestled with this, and I know a lot of the friends in the support group do too.  But when it comes to the point where it is unsafe to have them in your home (Bob WAS going to fall down the stairs) and the caregiver is so worn out that they will die first, it is time to rethink things.  I know all of us in the support group asked the question "But how will I know when it is time?"  A sage member of the group, whose husband had had Alzheimer's for 18 years said, "Oh, you will know!"  And it was true!  But some of the group still have their loved ones at home (one moved him back home after being in a facility) and have agencies come in to help bathe, etc.  The Alzheimer's Association can assist you with this and make recommendations.  

Then  you finally realize and come to the conclusion that heartbreakingly you are going to have to look at other options.  It is so important to think about this while you still have the option to choose, and look around so you can have strategies (maybe several) in place, so you won't be unprepared and have to look frantically for a place at the last minute when there is a crisis.  If that happens you will probably end up at the only place that has a bed (and there is a reason that is the only place that has a bed.)  Or they will tell you they don't have a bed when they really do because you are coming in under Medicaid.  It has been SO difficult in the last year, with families not being able to tour facilities because of COVID and facilities not admitting new residents.

One thing I forgot the last time in my blog when I talked about finances is the veterans benefits.  This is a wonderful resource, and the spouses I know that have their loved ones in a veteran's home at least in this area, are very satisfied.

Another resource I can't recommend highly enough is hospice.  Bob was on such a downward spiral when he went into the facility that he qualified immediately.  You have to have a doctor's order, which is usually easy to get.  Hospice was such a blessing when Bob was in the facility, but some of the hospices come to the home as well and help with bathing, etc. It is covered by Medicare.  Bob remained on hospice for 3 years as you are allotted more time with dementia.  One of the big criteria for using hospice is weight loss and Bob had to go off hospice when he went to the new facility and he started gaining weight.  He may be eligible again, if he keeps losing weight.  Hospice doesn't pay for the facility, but they pay for a lot of the equipment and supplies, such as lifts, the Broda wheelchair and incontinent supplies (which they don't charge for at Hillside).

One thing that has been important to me as I looked for a place is that is has local ownership.  The owner is on site every day at Hillside, and I think that makes a huge difference.  Places that are a part of a big conglomerate just don't have the atmosphere I was looking for.

One thing to keep in mind is what happened with Bob.  At some point, he no longer needed dementia care and needed to be moved to a place where there was more physical care.  So where he is now at Hillside village is long term/skilled nursing, but there is also an assisted living wing.  And I have only seen one new face when I returned after COVID.  That speaks volumes!

Then there is the only recourse that some have and that is moving in with your children.  (Don't panic Valerie!)  and I think all of us would agree that option is not ideal.  The pace of the world today and the generational gap is such that the dream life like the Waltons had is no longer what it used to be.  There are the granny pods in the back yard, and the in-law suites now.  But as my dear friend Mac observes, there needs to be a contract drawn up between the two parties and each needs to state their expectations of what it will take to make it work.  The realities of how it would change everyone's lives, especially if there is dementia involved need to be addressed.

I am going to end this blog with the same quote I used when I wrote about this subject before.  I can't do any better now!  It is from Guiding Light Ministries International.

"There IS a place where we can abide, whatever external circumstances may come, where we can maintain a sense of peace and joy throughout whatever events may be unfolding in our lives.  And it is within each and every one of us.  You must find that place..for there is nothing else that can compare, and nothing else that will ever satisfy the soul of man!"

Whew!  I am exhausted just thinking about all this!  I just hope it is helpful to someone.

Betty

 We are now upon an auspicious anniversary--the one year anniversary of the shutdown from COVID and all the chaos it has caused.  On the typical anniversary you usually celebrate something, but this certainly isn't worth celebrating with the tragedy of over half a million Americans, and 2.5 million worldwide left dead in its wake. My heart just breaks for all the people that died without their families being able to be at their side.  And I say the same for the families that had to grieve the loss without being with their loved one.  The trauma that the caregivers have borne because of extreme fatigue and the sadness they have had to see and endure.  I think it is safe to say that things will never be the same as prepandemic.  I think of all the people whose heart or lungs are permanently damaged and who are suffering from a lot of strange symptoms.  And this is just the visible tip of the iceberg.  I hate to name them as I am sure I will leave some out, but just for starters there is the depression, loneliness, the loss of things we traditionally celebrate, like weddings, graduations, birthdays, even funerals and memorial services.  The loss of learning in a school environment, being able to be around other children, and even loss of school lunches.  The economic impact with loss of jobs, people going hungry and loss of homes and apartments from not being able to pay the rent or mortgage and the loss of income to the landlords that have to pay their mortgages.   The increase in domestic violence and any violence due to the pent up anxieties.  And the trickle down effects--I just heard that there are many semi trucks full of mail just sitting in Maryland because there is no one there qualified to drive them.  So that is where my Christmas cards from Maryland are!

But it seems that there is light at the end of the tunnel.  Three vaccines are out, and in spite of distribution moving frustratingly slowly, things are looking up.  I have had both of my Moderna vaccines, and the two weeks has passed since the second one, so hopefully I have some good immunity.  All the residents at Hillside Village where Bob is have received theirs, and 70% of the staff have gotten theirs, which is a commendable number, as other health care facilities and long term care facilities the number is more like 50-60% of the staff have received them, as it is on a voluntary basis.  It cannot be mandatory like the flu shots I have heard, because the vaccines are under emergency status.  I just hope that number will increase as more people see that whatever the side effects are, it is better than having COVID.  Bob recovered well from the COVID with the help of steroids, as did the other residents, and visits opened up again in the enclosed visiting pavilion.  But no sooner than that happened, and they had to be shut down again because of frigid cold.  There is about a 10 foot outside space between the building and the pavilion, and it was just too cold to take people out!  But I have seen him twice now in the pavilion and I had my hand on the glass, and he reached out like he wanted to take my hand!  And now things are looking even brighter!  The guidelines are changing day by day and soon they can open up in person visits again!  They asked for volunteers to help monitor the visit and guess who volunteered!  I think the visits at first will be socially distanced and with masks on, but they will be inside in the parlors, so not weather dependent.  I am so excited with this development, and will be even more excited when we can touch.  I asked for compensation that when I am there volunteering, I could stop in and see Bob for a few minutes before I left, and I promised to follow the guidelines.  Kind of hard to kiss with a mask on!

There is one more breakthrough that sounds exciting.  It is in the winter Alzheimer's Science News magazine.  It states "The Precivity AD test is now available in 45 states.  It does not involve any radiation and is noninvasive, requiring only a small blood sample.  The sample is sent to C2N's laboratory for analysis by mass spectrometry, and a healthcare provider will discuss the results with a patient.  These features make the test more accessible than other diagnostic methods that physicians use to evaluate issues with memory and thinking, and could pave the way for earlier diagnosis and treatment and greater enrollment in clinical trials."  And I have seen programs that because of all the funding and money put into helping develop the vaccines, other programs may benefit.  Some of the mRNA ingredient in the Pfizer and Moderna vaccines are thought to maybe be of benefit in curing cancer.  But it was difficult to get the funding for that study before.  And last week on the TV show 60 Minutes they reported on the unusual path fluvoxamine, (Luvox) a drug commonly used to treat obsessive-compulsive disorder, has had to be an early treatment candidate for COVID-19.  What great side effects these would be!

My brother has asked for me to revisit the financial aspect of Alzheimer's and dementia care.  I have not felt like addressing something so weighty during COVID as I felt everyone was struggling enough.  But it has been a sad year for that was well, as the Alzheimer's offices have been shut down (they will talk to you on the phone) and our support group has had to meet by Zoom.  That is nothing like meeting in person!  And people that are needed to place their loved ones in a facility can't go and look at them or can't admit them to a facility as they aren't accepting residents during COVID or the relatives couldn't visit after admission to reassure themselves and their loved ones as they would have to quarantine after admission.  So next month I will probably tackle that again, as it was early on in my blogs that I talked about it.  And it is such an important component!

When my arms can't reach people who are close to my heart, I always hug them with my prayers.

Hugs to you, Betty

 We are now in the dark dreary doldrums of winter.  We made it through the holidays which I was not looking forward to.  The other holidays that Bob had been in a facility at least I had been able to go see him and make things merry and bright.  But this Christmas I couldn't go see him and had to content myself with a picture of Santa giving him the present I had taken to him.  I finally joined a support group that Church of the Resurrection in this area was sponsoring for 4 weeks via Zoom called "Grief through the holidays."  It was opened with a short talk by one of the pastors and then we broke into groups with a group leader.  I was afraid it would not be appropriate for me since my spouse hadn't died, but I was welcomed with open arms.  As others shared their stories it was so helpful just to be able to talk about it, and the host was so comforting with his remarks.  I soon discovered they were in a much deeper grief than I, as most of the deaths were unexpected.  Several men were in my group, and it was so good to hear men express emotions that men sometimes hide, and will not traditionally seek help for.

Then after Christmas it happened.  The first person to test positive at Hillside Village was an employee.  I know everyone was worried what would happen with people getting together during the holidays, even if it was in small groups.  People maybe were getting so tired of being apart, and let their guard down for just one time, and someone in the group is positive and maybe doesn't even have symptoms.  And this time of year it is so hard to tell which may just be a seasonal sniffle or tickle in your throat and which may be COVID!  Hillside Village had been testing their employees when they came to work, but somehow one of those devil germs slipped through.  And they tested the residents whenever an employee tested positive.  The residents were given their first vaccines on a Thursday I believe and then the first resident tested positive the next Monday.  After that, more would test positive every day.  They were moving residents around to isolate and separate people.  The Director of Nurses is also the infection control nurse, so she was able to have a hands on approach as they tried to contain it.  Then she tested positive and had to  stay home and "rule from afar" as she put it.  Fortunately she has had mild symptoms as have all the residents.  They are wondering if the few days in between the vaccine and the outbreak helped.  I am impressed that they have worked as a team to contain this.  Residents are now being moved out of isolation.  The administrator has worked long hours, going home only sneak in an outside entrance to the basement and sleep in a bedroom there so he doesn't infect his family. But then the dreaded phone call came last Saturday.  The owner of the facility called and said that Bob had tested positive.  So far the only symptom he had was a slight cough.  I had barely hung up from him when the Director of Nurses called.  She said they were offering the option of the infusion of plasma with antibody cells to those that had tested positive, but they had to give it early in the course of the disease, so they had to know by Monday if I wanted to do that.  It would involve taking him out to an infusion center about 15 miles away.  The other option was to just "shelter in place" and treat the symptoms with tylenol, oxygen if needed, and the steroid dexamethasone orally if needed.  I talked with Ron and Valerie, and wrestled with, and prayed about, the decision overnight, and then texted her the next day and said I had decided not to send him out for the infusion.  It has been a week now, and fortunately his symptoms remain mild, he doesn't have a fever, and he is eating and drinking well.  He was next to the last person to test positive in the facility!  I am so thankful that as doctors have been treating the disease, they have found ways to treat it, and have found out what works and what doesn't work.  And fortunately a lot less are being put on ventilators because of it.  

The next bright spot was when the hospital emailed and said they were making the vaccine available to the retired nurses.  There were many of us there to get it, and so happy to be able to SEE someone in person that we had a great time chatting!  I will admit I was on the fence at first about getting the vaccine as we don't know long term side effects, how long it lasts etc. etc.  And I couldn't forget the image of a young man that I took care of in ICU that got Guillian Barre syndrome from the flu vaccine that year.  He was on the ventilator for months.  I never did find out what happened to him after he left the hospital and went to rehab where they took ventilator patients.  But I decided the alternatives and getting COVID outweigh the risks of getting the vaccine. Hearing about the long haul patients that are having symptoms for months later is scary.  And I want to be able to travel again.

So saying, we are not out of the woods yet, especially with the new mutations coming out.  And the end of wearing masks is months ahead of us, I am afraid.  The other worry I have is that since so many people refuse to wear masks, they will even more so refuse the vaccine.  I wish that people would have the mind set of caring for others, and in caring for others, be willing to help protect them.  But the nature of people is to only think of themselves, until maybe they lose someone they love.  But we have had so much tragedy through this with people dying alone and their loved ones grieving alone.  It breaks my heart.  So to everyone I would say:

May the Lord walk beside you to comfort you,  May the Lord walk above you to watch over you,  May the Lord walk beside you to keep you safe,  May the Lord walk before you to show you the way.

Stay safe and hang in there!  Spring will come!

Betty

 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