It has been said that "true love travels on a gravel road."  I can hear Elvis singing it now.  But since my last blog the road on this Alzheimer's journey has not been gravel, it has been rocky.  And not the delicious rocky road ice cream with all the little marshmallows!  

Yesterday when I visited Bob, he had had a grandmal seizure again, and was totally nonresponsive.  He hasn't had one in quite awhile.  But today I just came from feeding him lunch (not much success).  True to his usual form, he was much more alert after the seizure, and it usually remains that way for several days.  But the bigger problem is blood in his urine.  They got a urine specimen, with culture and sensitivity to see what antibiotics would help.  The results were that he had a big infection.  This is the third one he has had, which is amazing as he has been incontinent for a long time.  Antibiotics worked before, so I okayed a round of them to be given orally.  That has been my criteria before, as when an IV is started, it is sometimes the beginning of a slippery slope of going beyond measures that you want to do.  I remember when we filled out our advance directives (living wills), I put a big question mark where it said "would you want to be given antibiotics" and so he followed suit.  But now the round of antibiotics is over, and after a few days of clear urine there is blood in the urine again, and quite a lot of it.  I have been agonizing over whether to okay the start of another round of antibiotics and I have decided not to.  One of the big reasons is I know that Bob would not want to continue living like this.  I wish the decision would be made easier by him not being able to swallow, but he is still drinking well.  I have been taking big glasses of grapefruit juice (his favorite) and cranberry juice for him to drink.  Hillside Village has offered to call hospice, but I am so comfortable with their care, that I have opted not to.  He was on hospice for 3 years and they are wonderful. Under their guidelines, he would not be given antibiotics, and so now I will choose to let those help me. 

Another thing that makes me comfortable with my decision (and I know I alone have to be comfortable with it), is that Bob doesn't seem to be in any pain.  There may be something going on besides the infection, but I don't want him put through a battery of tests to find it.  A urinary tract infection is usually painful enough in its own right!  I have done an informal survey of others in my support group, other friends, hospice nurse friends, and they all say that they have never seen someone with Alzheimer's in pain.  Maybe the part of the brain that senses pain is numbed by Alzheimer's?  If so, that is the only good part of Alzheimer's I have found. 

So I end this month's blog by saying I have placed Bob in God's hands.  I have been praying for God to direct this path, so I must take one day and one step at a time.  Please keep us in your prayers.

Betty 

 I recently read a book "In Love"written by Amy Bloom and it inspired this blog.  The book was riveting to me and I read it in about 3 hours.  I couldn't put it down!  She married Brian Ameche, who had played football at Yale and then became a architect of renown. Their marriage was the second marriage for each of them and they were deeply in love.  They had been married for 14 years when they both started noticing subtle changes in Brian's personality and thought process.  After the devastating diagnosis of Alzheimer's, Brian immediately said he wanted to die on his feet, not kneeling down, and he was going to find a way to do it.  But then he told Amy he was putting her in charge of that, because he trusted her judgment so much.  And because she was a writer, he wanted her to write about it.  At first she told him she would do neither.  But he was so determined and so persistent, that she started researching ways for assisted suicide.  First she found that the 9 states in the United States that allow it have such stringent guidelines, such as being a resident of that state, that it made it next to impossible.  She researched other options such as drowning, but none of them seemed satisfactory, and she would have to be careful not to assist so she wouldn't be prosecuted as an accomplice.  In the end, she found Dignitas, a non profit organization in Zurich, Switzerland that would also help people from other countries, and that had already done over 1000 assisted suicides.  There were stringent guidelines, referrals, and paperwork to be completed that was daunting, along with the travel to Zurich and the $10,000 fee.  But they jumped through all the hoops, and the story of them saying good-bye to family (they told them what they were going to do), the trip there, and the days they spent together there are heart wrenching.  But then the day came, and Brian, still fully aware of what he was doing, drank the Sodium Pentobarbital concoction and died in her arms.  It makes me think of Jack Kevorkian, a pathologist in Michigan in the 1990s who helped at least 130 people commit assisted suicide, though probably from incurable diseases such as cancer.

The book stirred many emotions for me.  I am sure Bob knew what was happening long before he would admit it.  After he retired, I would come home and he would tell me who he talked to on the phone that day.  I was amazed at how he could track many of them down, with all the phone numbers.  Was he calling them to say good-bye?  And many people have told me in later years that he called them too, and just chatted for an hour (or two!)  And is his not eating now somehow in the back of his mind like an assisted suicide?  I can't really believe that he is able to reason that much, but who knows?  He is losing 2-3 pounds a month and is down to 128 pounds.  My mother, when she had to go to a nursing home decided she didn't want to live any more.  So she stopped eating.  But that didn't last long.  Maybe because the doctor asked me if I wanted a feeding tube placed.  I told him, "Ask her, she is totally with it!"  When he asked, she told him most definitely not!  And then she started eating again...Two nurses separately told me that when I wasn't there she was the life of the party.  She was just making me feel guilty for putting her in a nursing home.  But by now, I think I have worked through the guilt of putting both her and Bob in a facility.  To have done otherwise would have been impossible.

 I remember Robin Williams, who suffered alone with depression for many years.  He died by his own hand by hanging, when he found out he had Lewy Body dementia.  How could someone who made so many people laugh come to such a tragic end?  Even King David of Biblical fame probably suffered from depression.  I heard it said that if he had been on medication, the Psalms would never have been written.  One day he was "Oh Lord how mighty thou art" and the next day he was saying "Oh God where are you?"  I said much earlier in one of my blogs that I take medication for depression.  And to those who say that I don't have faith and trust in God because I take medication, I would say "God helps those who help themselves, and shows them how to navigate this complex life." My sister, on a high cycle, declared herself cured of bipolar disease, stopped taking her medication for it, plunged into the depths of despair and committed suicide within days.  

So, in closing, I ask that you be kind to those you come in contact with.  So many friends right now are trying to navigate the care of their spouse or loved one with dementia and they are overwhelmed.  The Alzheimer's office that was such a great help to me in the beginning has been closed since COVID started, and the caregivers don't even know where to start.  But everyone is fighting a battle that you don't know about, so please, just be kind. 

Betty

 Recently I listened to a series of 5 sermons about doubt from a local pastor.  Those sermons inspired the content of this blog.  I may repeat myself with some posts from earlier blogs, but some may not have been following the blog then.  Or it doesn't hurt any of us to be reminded of these things!  The series was on doubt.  The pastor stated from the beginning that doubt was a good thing, and asking questions and delving deeply could be a means to strengthen our faith.  He took a survey of the members and the things that most troubled them.  As you could guess, the overwhelming thing people asked was "If there is a God, why does He allow suffering?"  Of course, that question has probably been asked and debated about from the beginning of time.  I have read books about it.  The thing that troubles me most is the Holocaust.  Where was God when His chosen people, 6 million of them, were suffering and dying the most horrible deaths?  The pastor's postulation was that these kinds of questions either 1) turn you away from God or 2) turn you back to God.  

So, I would like to proceed to address those thoughts with the circumstances I find myself in.  If anyone deserves not to suffer, I believe it is Bob.  But thankfully, he doesn't seem to be suffering and his usual sweet self now shines through.  If you remember, at one time it didn't, when he was in a violent stage.  Now Bob has been the survivor of 2 Covid episodes, more than anyone else in the facility.  A friend was musing after he recovered that God must have a plan for Bob, since he is such a strong person and seems to be holding on for so long.  The usual course of Alzheimer's should have happened long ago since he has been on and off with his eating and losing so much weight.  Usually he would start choking on his food and get aspiration pneumonia.  More than once I have thought that was happening, only for him to turn it around again!  I lose track of when I had him anointed.  He was still at home then.  I love the hospice chaplain that anointed Bob, and he gently reminded me that sometimes God says no.  I told him that I wasn't asking for healing.  As a nurse I had seen whole churches come to the hospital to pray for a dying child and the child still died.  I told the chaplain that I was just placing Bob in God's hands for safekeeping.  And I gently reminded friends that told me if Bob didn't recover it was because I didn't have enough faith, as the chaplain reminded me, that God sometimes says no.  Our faith is necessary for our mental survival.  I have come a long way in this journey, but I still have a long ways to go.  Bad things happening are not a part of God's plan, but a result of the sinful world in which we live.  And if it is happening to you, God will be there to walk you through it, and I am encouraged by that promise.  Do I find myself in this situation so I can be of better service to others?

Lets look on the lighter side for awhile!  As I have said, just going to Hillside Village and holding his hand gives me strength, but my strength is nothing compared to his when I try to remove my hand to leave!  And I am afraid I have started something again.  I have been rubbing his head.  His grandmother told me when we were dating not to get that started or I'd be sorry, and I should have listened to her.  I asked him the other day if he liked it and he said "sure"!  Ask a dumb question and thats what you get!  It seems he is more alert now since he has recovered from Covid.  I don't have a reason why, except Valerie gave me a very plausible answer the other day.  He slept so much when he had Covid that he has been revived!  A new little CNA was caring for him the other day.  She had never heard him speak before, but he asked her "What time is it?"  She said she about jumped out of her skin!  And the other day we were watching Gunsmoke (his favorite) while I was feeding him.  I told him "thats Matt Dillon there."  He matter-of-factly said "I know it!"   

As I close this blog, I ask that you pray for the people of Ukraine.  Again, sin seems to be taking over, but in the end, good will triumph.  Emmanuel--God with us!

Betty

 January is a bittersweet month for me now.  It is my birthday month and Bob and I would always celebrate my birthday by taking a trip somewhere as he knew there is nothing I would like more for my birthday!  Usually we went to Arizona, where it was relatively warm, and we loved it there.  But now January also marks when Bob had to go to a facility, and he went in just around my birthday time.  I think I went home and slept for a week!  He has now been in a facility for 5 years.  He went on hospice care in May of that year, so at the time I was sure it wouldn't be that long, and hospice agreed.  

Just before Christmas he started eating again, after several months of sporadic eating.  As I wrote in last months blog, it was a wonderful day and I got to hold his hand after not being able to do so the Christmas before because of COVID.    On January 28, I gave myself a birthday present and traveled with a tour group, Road Scholar, to California to check another item off my bucket list.  It was 6 days of activities centered around the Rose Parade which included one day of actually working with the 52,000 roses that went on one float.  The highlight was the day after the parade (which was also spectacular) when our tour group got in the venue early to beat the crowds and be able to walk among the floats and see them up close. 

I had been so careful on the trip to wear masks, and the tour bus we were on only had 18 people on a 50 seat bus, and we also wore masks on the bus, even though everyone on the tour had to be fully vaccinated.  But just days after I got home, I went to breakfast with a group of friends, and the next day one of them called to say she had COVID.  I had already been to see Bob after I got back, but I started the 5 day quarantine period.  The last day of the quarantine, the facility called to say that Bob had tested positive for COVID.  He had survived having COVID last year in February and it was a mild case so I hoped this would be as well.  4 other residents and some of the staff also had it, as this seems to be a very contagious variant.   The staff was so good about calling and giving me updates.  And I got special permission to go in and see him.  As he was in isolation, I had to wear full Personal Protective Equipment.  10 days later he has now tested negative and is out of isolation.  This also appears to be a mild case and the main side effect of being sick was that he slept a lot.  But more concerning is that he has stopped eating again.  They said he would always take the oral liquids, so he kept hydrated, but he can't afford to lose more weight. 

As I watch the staff at Hillside work extra on their days off to cover shifts for co-workers who are out because of testing positive or to help when people couldn't get in because of bad weather, I am so thankful that Bob is where he is being well taken care of.  But I read articles of what nurses and caregivers across the country are faced with and I marvel at their strength and resilience.  I listen to stories of people still working at the hospital where I worked, and hear of the horrible things that are happening, and cannot begin to imagine what they are going through.  How long can this go on, and how long can they keep up their endurance?  They are experiencing burnout and leaving the profession they once loved.  There is no way they can keep up caring for the sheer numbers of sick people which of course includes diseases not associated with COVID that they cared for easily in non-COVID times. I pray for them several times a day and hope this soon slows down without another big wave on its heels.  For some, this variant has mild symptoms, but for others especially with underlying health problems it can be devastating and people are still dying from it.  So please take every safety precaution and do everything you can to protect yourself.  You cannot afford to go to a hospital for anything now as you will have to wait for hours in an ED to be seen.  And if you have to be admitted, you may have to wait in the ED for 48 hours or more for an inpatient bed to become available. If you have heart problems and need to be in ICU, your bed is probably taken by a patient with COVID.  Or the ICU nurse may have up to 4 patients where the maximum before COVID was two.  So it goes without saying that the standard of care cannot be met, and you will not receive optimum care.  Nurses from everywhere are being asked to work in situations where they have no experience and units where they haven't worked in years.  Simply put, there just aren't enough nurses to go around.  I am sorry to be so graphic, but I don't think people realize the depth of the problems.

As I close, I want to wish you the best of health.  In the midst of this crazy world in which we now live, I hope you find peace.  Please pray for the caregivers that they may have the strength to go on in the midst of this chaos.

Betty

 I an a little late writing this blog,  I just can't get in the holiday spirit.  But I went to see Bob today and played Christmas music for us on my phone, and that has helped!  I love Christmas music, both secular and sacred.  And Bob was bright and bushy tailed today.  That is the only way I can describe him!  He was laughing and talking, and though it was all gibberish, he was happy.  But when I rubbed his head, neck and shoulders, and asked him if he liked that, he grinned and said "I like" very plainly.  I half expected him to ask to ask me to rub his feet, as he always used to, but that is where I draw the line!  And he opened his mouth purposefully when I fed him, so it was a good visit.  He only lost a pound last month, so that has stabilized.  More teeth are breaking off at the gum line, and no one can figure out what that is about, except maybe his weight loss is affecting the gums as well.  

I looked back at my blog from last Christmas.   I said this last year, but I will say it again.  Christmas is not my favorite time of the year nor is it my favorite holiday.  Even if I am enjoying myself to the fullest on that day, I then think of others who are alone and lonesome on Christmas.  They may have lost all family members or they are estranged from them.  I also think of the servicemen overseas who cannot be home with family, especially if they have small children.  Whatever the circumstances, I am sad for them.  We had our Alzheimer's support group last week.  There are so many new people in the group.  I feel so bad for them dealing with everything with the holidays approaching.  And with the pandemic, a lot of the resources are gone, have closed, or won't let new people in.  I was in that circumstance 6 years ago and even without the pandemic, it was heartbreaking.  I was beginning to have to admit that things were unmanageable at home and I was going to have to admit Bob to a facility I had been looking at.  We had one last Christmas together at our daughters home in St. Louis and I lost him in the grocery store.  "How is that possible?" you ask?  Just ask someone else in these shoes!  You are looking at something on the shelf and you turn around, and they are gone--just vanished into thin air!

If any of you are new to my blog, I will spare you having to go back two years ago when I moved him from the previous facility to Hillside Village of DeSoto.  I moved him because his level of care had increased so much they could not handle him and they had hardly any staff left.  I have no doubt that God had a hand in the series of events that prompted me to move him, as he would not have survived Covid in that facility.  I lot of residents on his unit died, and he would have been one of them.  Now, 2 years later, and am really concerned about the shortage of staff everywhere.  Hillside is short like everyone else, but most of the staff is picking up extra shifts to cover, and I can't thank them enough.  Caretakers are burned out everywhere, and I can certainly see why.  I was not surprised when one of the new members in the support group shared that she had moved here from Indiana to be near family and had put her husband in a facility.  She had helped them put him to bed at 6pm, then she went home.  When she got back at noon the next day, he was still in bed, and had not been attended to.  That shortage of staff is happening in restaurants and hotels, from the cooks to the waiters and waitresses.  So please be patient and kind to everyone you meet that are doing their best in these times in which we now live.

I am sorry to be so downhearted  this month, but I like the saying I posted on Facebook today.  "This is not the year to get everything you want.  This is the year to appreciate everything you have."  I remember back to when I liked Christmas, when we were poor, both before I got married and after I got married.  The simple things meant so much.  It was a more family time, without all of todays commercialism.  Christmas advertising didn't start right after Halloween.  So today I am thankful for life.  I am thankful for health, at a time when it can be so tenuous.  So many people will be sad this Christmas because there will be an empty place at the table.  I am especially thankful for family and friends that mean so much to me.  And I am also thankful for a Savior, who is Christ the Lord.

Love to you this Christmas, 

Betty

 It is a beautiful fall afternoon and the leaves are turning gorgeous colors, so I am inspired to write this months blog.  I have been surrounded by Alzheimer's this past month, so needed to get out in nature today.  I sat in freezing and rainy weather this morning at grandson Jaden's soccer game.  What grandparents won't do for their grandchildren!  

The first Alzheimer's occasion was when a member of the support group finally was able to have the service for her beloved husband.  Because of COVID, she was sitting outside the window to his room on their 50th anniversary, and he died the next day.  Then because of COVID restrictions and family not being able to travel, she was unable to have closure until this month.  The service was at a beautiful venue in the woods and she had time to have everything as she wanted it to be.  

The second and third occasions was when 2 special couples came through and stopped in Kansas City on their way to new lives and new homes near their family so they could have the help and support they needed.  One of the couples used to come and stay with us one weekend a month so she could go to the support group with me.  We had such wonderful times;  Bob was still home when we started doing this and he really enjoyed the interaction as well.  The support group gave us an idea of what was down the road.

That support group has altogether changed.  During COVID most of the couples lost their spouses; the sons and daughters lost their parents, some due to COVID and some to natural progression of the disease.  They all came to the first in person meeting we were allowed to have and said their emotional goodbyes.  We had become a family.  Typically by Alzheimer's Association guidelines they are supposed to move on to a grief group which some of them did, others remained with the group for awhile and our coordinator graciously allowed them to do so.  Now they have formed a lunch group which they have invited me to be a part of.  We meet once a month just to have fun.  I still go to the original support group, now the oldest in terms of how long I have been attending.  It is heartbreaking to see new attendees sobbing their hearts out, realizing they now can get help when they had no clue of what to do or how to begin going down this path.  Our coordinator is such a helpful resource to get them started.  I pray the couples that stopped here will find support groups as wonderful as this one.  But one warning--I attended a couple before I found one I was comfortable with.

Bob is about the same.  He lost 2 more pounds last month.  His teeth are breaking off down to the gumline in the front.  I don't know what that is about, but I heard the dentist in the hall one day and grabbed him to come in and look at Bob.  He said there wasn't much he could do.  I thought about getting his teeth cleaned, but he won't open his mouth for food, so why would he open his mouth for that?!  When I brush his teeth with an electric toothbrush, he doesn't act like they hurt him at all, so I am not going to worry about it.  Pain is not what is keeping him from eating.  Daughter Valerie and her husband came to see him and he ate the homemade pumpkin bread she brought with only a little urging!  

In this season of thanksgiving I would like to leave you with a quote I got from the "Grace and Mercy" website.  "Life is so short.  We spend so much time sweating the small stuff, worrying, complaining, gossiping, comparing, wishing, wanting and waiting for something bigger and better instead of focusing on all the simple blessings that surround us everyday.  Life is so fragile and all it takes is a single moment to change everything you take for granted.  Focus on what's important and be grateful!  You are blessed!  Believe it!  Live your life and leave no regrets."

And finally, I would like to thank all the friends and family who are supporting me day after day.   I had no idea it would be this long of a journey.  I thought the end was coming this summer.  But I just ask God to please not let Bob suffer, and Bob appears comfortable, and I am thankful for that.

Love to all of you,  

Betty 

 Bob and I just celebrated our 58th wedding anniversary.  He celebrates his eighty first birthday next week.  We wanted to get married on his birthday, but there was too much time to wait between my nursing graduation and his birthday for those that were coming from out of town for the two events.  Even if I know what I know now about how his life would end, I would do it all over again!  We had 50 wonderful years before Alzheimer's started stealing him away.  Our last overseas vacation together was a river cruise in France, and it was perfect.  It was so relaxing, and he was able to participate in most of the extra activities.  For a boy from Baltimore who had never been out of Maryland before we met, he has lived an extra full life.  I believe his motto, if he could express it now would be "Life's a journey, how you live is your adventure."  

I have also been on a journey since I last wrote.  I went with our daughter and her family on a trip to Washington state.  You may have seen it on Facebook.  I was born and raised in Washington state, and it was just like going home.  The people were so friendly, and the air was so crisp and clean with no humidity.  I have been back several times with Bob and thought he would be mesmerized by the beauty.  But he didn't see Mt. Rainier until our 3rd trip there, as every time it was covered with clouds.  But when he did see it, he admitted it was gorgeous!  This last trip was to hike in the National Parks in Washington state, as the Stricker family is trying to get to as many national parks as they can before their son Jaden leaves the nest.  I knew I couldn't do the rigorous hikes straight up the mountains like they were doing, so we would go to the visitor center in each park, they would choose their trail, and I would choose mine.  It was so wonderful to be out in the fresh air (and it didn't rain once while we were there) and I could just go at the pace I wanted, look at the profusion of wildflowers and just get away from everything.  For years, travel has been my therapy, but the virus had taken that away, and I knew I was wasting precious time to travel while I still physically could.  Even just planning a trip even if it is several months away is therapeutic for me!  I have something to look forward to!  So while I am very hesitant to travel overseas again, there are so many places in the US that I haven't seen, and so many I want to revisit.  But this trip was preplanned for me, so all I had to do was sit back and enjoy it!

When I got back I was anxious to see Bob again.  The cases of the Delta variant were ramping up and I was afraid things would start shutting down again.  I got to see him a few times, and then there was an exposure at Hillside Village where he is, from an employee.  So they closed to visitors for 2 weeks per Johnson County Health department guidelines until staff and residents tested negative twice.  But I couldn't bear the thought of not being able to see Bob again for an extended time at the end of his life, since we didn't know how long they would be closed.  So I appealed to the administration at Hillside and they were so wonderful to give me end of life compassionate care visits.  But I only went once a week on Saturdays when they were less busy.  I got to try to feed him lunches in his room,  but as been the pattern, usually he will take a few bites, and sometimes he will eat fairly well.  It just seems like his brain won't tell his mouth to open.  I am going to take birthday cake next week to see if that will awaken his sweet tooth.  I can still sneak M&Ms in through his lips!  He is still taking thickened liquids (so he won't choke) in a glass, and they are giving him a high protein drink, so evidently that is what is keeping him alive, plus his reserves, which are dwindling.  I was so happy to be with him on our anniversary, and whether he knows me or not, he sure has a tight grip on my hand!  But he does that with others as well.  He did purse his lips last week like he wanted to kiss me and he leaned over, but of course I had the darn mask on!  If you remembered me saying he exercised like a fiend, so his heart and lungs are still strong.

So, I challenge you to live your life so you will have no regrets when you come to the end of your journey.  None of us knows what lies ahead.  I could not have imagined this scenario for us.                    "Someday you will die and leave this earth behind.  But on all the other days you won't.  So live them.  Live them like the priceless gift they are.  Live each new today with eyes wide open.  See the beauty.  Focus on the good.  Feel the sun, snow, wind, rain, and elements of your planet on your skin.  Walk your feet upon earth's ground.  Star gaze.  Climb trees.  Go for drives.  Look at other peoples homes and say to yourself, 'There are people living their lives in there.'  Be aware that every person in humanity is going through their own thing.  Be thankful.  See your blessings, not only your problems.  Life is too precious to live any other way."  Sheri Eckert       

Until we meet again,                                                                                                                                       Betty