It is My Fault. I Let It Happen...

 I am not doing this grieving thing very well.  It is not getting any easier.  After living together for over fifty years, living alone just plain sucks!   In the last few years together, we had some really good times.  We made some good friends taking my car to car shows.  We had wonderful experiences visiting Prince Edward Island and Boothbay Harbor.  We had a great visit with our friends in Morgantown, PA.  and my niece in Georgia.  There are plenty of good memories.  But we did those things together and she is not here any more.  I can't change that.  I feel completely unmotivated.  A piece of me was taken away and I almost feel paralyzed.  It is not good.

The fact is, I am slowly killing myself.  It is not that I want to, but I am not able to stop myself.  That will be my opening line when I meet with my counselor next week.  The regular readers of this blog know that I am grieving the lose of my wife of almost 52 years.  She suffered from Lewy Body dementia and I was her primary caregiver.  We had begun a two-years stint traveling the country in our motor home.  After snow-birding in Silver Springs, Florida to wait out the pandemic, we were about to embark on a one-year journey across the upper US, visit the major National Parks in Utah and head to Quartzite, Arizona for the winter.  That is when the symptoms , which had to be there for years, became evident to me.

Pam did not want to be put into a memory-care or nursing home.  She wanted to stay at home.  I was determined to live up to the promises that we made to each other when we got married.  I did not understand the difficulty that lay ahead.  The physical demands were not bad, even as she was no longer able to maintain the activities of daily living, like feeding herself, and dressing herself, and the sanitary needs.  I was retired and had the time to provide those.  The emotional demands were overwhelming.  You are watching your loved one slowly drift into the abyss of dementia.  You begin to grieve the lose of your future plans.  You feel the pain caused by your partners suffering.  You begin to anticipate the grief that will come when they pass.   You get frustrated having to deal with the random and erratic resistance to your help and sometimes even outright anger or aggression.  If that is not enough, you suffer from the loss of intimacy and eventually sleeping in separate  beds.

 As the emotional toll accumulated, I began to respond.  The substance abuse began, and continues to this day.  My substance of choice.... food.  I can not seem to control it.  I am a 'grazer'.  I wander through the kitchen every few hours, like an infant on a bottle, looking to find something to eat.  The abuse began in April 2023.  Pam passed away sixteen months later.  So we were in the most difficult time as a caregiver.  My weight began a slow, steady climb.  I put on fifty pounds in sixteen months.  My medical chart calls it morbidly obese.  Yet I can not stop.   I was walking two miles at least four days a week up until that point.  Now I can not get more than a third of a mile.  Edema appeared and gradually got worse.  They played with my meds, with minimal results.  All of my doctors say that I need to lose weight, then they all say "see you in a year".  I feel like I have been written off by them.

Making my problem worse is that I love to cook.  For many years, I  cooked for our family of five.  Then I was cooking for two of us.  Now I am cooking for one.  The recipes are not recipes for one.  But honestly, I understand that it is really a problem of self-control.  I am not trying to blame anyone but myself.  It is my fault and it is my responsibility to fix it.  But I am still captured by the grieving process.   I miss Pam.  After living together for over 50 years, I don't like living alone.  I am completely unmotivated.  Yesterday I never got out of my bathrobe.  I spent the day on the computer and watching YouTube.  Not very productive.  I am not finding anything to get excited about.  I am trying to spend time writing.  Telling stories of our 50 years together.  I am also trying to finish a second edition of a cookbook I had printed a few years ago.  It was really a collection of the recipes I cooked while the girls were growing up.  I am trying to expand it.  But that stuff can only go so far.  Every few hours I get up from the chair and make a pass through the kitchen.

There is one shining light on the horizon.  There are a number of drugs on the market that were released to treat diabetes, which were found to have significant impact on weight loss.  But unless you have been diagnosed with diabetes, the insurance companies will not pay for them.  I have not been diagnosed and my blood tests supported that.  Earlier this month, the FDA approved one of those drugs for the treatment of Sleep Apnea.  Well, guess what I have.... moderate obstructive sleep apnea.  Medicare announced that they will cover the drug after meeting certain specific criteria and it appears that I do.  So I need to meet with my PCP to submit to Medicare for approval.  Lets keep our fingers crossed.

Until the Twelfth of Never....

Sitting here looking at a few Facebook Memories that have popped up.   I feel blessed.  As tough as things got caring for Pam, I knew that we had a lot of good years together and three girls to be proud of.  Not to mention five grandsons.  This picture says a lot.  When she smiled, I knew that she was happy and we were doing the right things.  Maybe now I can stop worrying about that very thing.  Did I do enough?  What should I have done differently?  Did she even know that I was trying to take good care of here?  For some reason, these questions have been gnawing at me. Did SHE feel like I was taking good care of her?  I hope she did.  I don't understand why I am second guessing myself now.  I can't change it, but it is so important to me to know how she felt.  That is the hard part of providing for a dementia patient.  They are not the same person that you spent your life with because of the brain damage.  But I worried about it anyway.  She had a wonderful smile.  When you saw that smile, you knew she was happy.  

I am feeling blessed.  It could have been much worse.  We had some quality time together despite the dementia.  Our hugs every morning.  We both felt the love.  During all of her years in retail, she always had her nails and her hair done.  That meant so much to her.  Once she was housebound, I had a hairdresser come in and do her hair and her nails.  She was so happy with that despite the dementia.  Little things often brought out that smile.  I shouldn't worry any more.  She got her wish, to stay at home.  And I know that we took good care of her.  We saw her smile on the days that Laura arrived to help care for her.  You knew that she was happy to see her.  I was blessed.

Now, while I am struggling to resume a 'normal' life without her, seeing the pictures of her smile mean so much.  I am sure that she would be happy with the Christmas present that I gave her this year.  Probably her last.  One last Santa to add to her collection.   There was a lot of anticipation as we approached the first Christmas celebration without her.  I think we did get through it successfully.  There were a few times during the day that I was in tears, but much of it went unnoticed by the others.  Just as well.  I found out that a couple of our daughters were very worried about what I would do (to myself) if Pam went first.  I never knew that.  But those thoughts never crossed my mind.   At least not then.  I have advised them that if I were ever diagnosed with dementia, that I would not put them through what I went through.  While I was not specific, I was adamant.

So life goes on.  I am trying to figure out what I want to do to keep myself occupied.  There are no social or political issues that I care that much about any more.  I served my three terms as an elected Selectman.  I have done my civic duty.  I'm done with that stuff.  I have thought about buying another Challenger and going back to doing car shows.   But I don't think the girls are too keen on that idea.  And my neighbors might not appreciate it either.  Sitting around, unmotivated, and watching YouTube doesn't seem to be working either.  Maybe I should just focus on my health, like lose some weight and resume walking?  But there is little fun in that.  Or I can just procrastinate some more and hope that something pops up.

One last look at Pam's Santa collection before it gets packed up until next year... when she won't be here... 💔  Oh, and if you are wondering about the title of this edition, it is from the lyrics to a Johnny Mathis song of the same name.  We danced to it at our wedding.  Look it up.

Is it Ho, Ho, Ho or Bah Humbug..... Depends on the Day

Thanksgiving dinner at the condo went better than I expected.  Everyone was here, which made me very happy.  Most of the boys were having a great time playing a new game that I bought called Magnetic Chess.  It involves magnetic stones placed into a circle formed by a string.  It was great seeing them playing together like that.  I did set a place for Pam at the table .  I had a few spells of tears, but overall got through it well.  I had already purchased a Christmas present for Pam and I got that wrapped after the table was cleared.  One final Santa for her collection.

I am still having a difficult time being here without her.   I miss her a lot.  I still feel like a piece of me is missing.   I don't feel like I am lonely or anything.   I just miss talking to her, and hugs, and cooking her dinner.  I just don't like living alone.  Many days I am very unmotivated.  I update my to-do list every day, but I just don't feel motivated to get things done.    And odd things come to mind every once in a while, like my beard.  I began my beard before Pam and I met.  So, she never saw me without it.  I always told her that the day after I die, she is welcome to shave it off and see what I really looked like.  I just never thought that she would go first.   And  that causes me to think about what her world would have been like if I did go first.  How would she be feeling?  How well would she cope?     We never think of these things while we are alive and we should.

The Bereavement Group that I had joined has run it's eight-week course.  That program is run three times a year by the hospice folks in Merrimack.  Some find it helpful to repeat the program, but I don't think I will.  I thought that there were some parts of the program that were helpful to me.  One involved writing a letter to your deceased spouse and then reading it to the group.  That part was a little difficult, but it has only been six months.  The last week involved you describing your spouse to the group.  I figure that was an exercise in bringing out the good memories.  Overall, I thought that it was helpful. 

Speaking of good memories, some of the family were here this past weekend to do the Christmas decorating.    That was a good thing.  I probably would not have done it by myself.  Christmas was Pam's time of year.  She went out of her way to decorate the entire house for the holiday.  And especially her Santa collection.  Courtney and Ally did a fantastic job getting that in place and the tree looks awesome.  

Christmas is going to be especially difficult for me.   Not only the fact that Pam is no longer with us to celebrate, but this year the family will not be all together.  That is very painful for me.   I understand that most families have their issues.  But that is not OK with me.  There are times when everyone must set their issues and hurts aside and come together as a family.  To me, this is one of them.   I will be preparing our family traditional meal of spiral ham with brown sugar and pineapple glaze, Au gratin potatoes,  green beans almondine, and butternut squash.  But this year I will be cooking it at the condo and taking it over to Kendra's house.

Recently, I have been looking at photos and videos of Pam.  One thing that strikes me is the physical change in her appearance in the final six months.  Given that dementia is the loss of brain cells, I just never thought about the physical changes.   It is so sad to see how her smile disappeared from her face.   While caring for her day-to-day, I didn't see the small changes as much as I notice them now.  I found a couple of videos showing the strange behaviors caused by the dementia.  It is hard to watch them and seeing what this insidious disease actually does to people that we love.

Enough for now.  I want to wish all of my friends and relatives a very Merry Christmas, a Happy Hanukkah, or a nice winter solstice depending on your preference.  And I want especially thank the followers of my blog.  It became a much bigger endeavor than I had originally planned.  A number of people have suggested turning the blog into a book to be printed.  I have heeded those suggestions and I am the process of trying to proof-read the result.  It is an enormous endeavor.  At almost 300 pages, I am not yet sure about the printing part.  But I will have a draft that should be ready to print.

Merry Christmas.

All Things Must Pass.... including this blog???

 I think we may have reached the end of the line for this blog.  I have 130 entries, not including this one.  There have been 270 comments made by the viewers.  Since it began in December 2019, there have been over 48,000 page views.  But I feel like I have run out of things to say.  

Let there be no mistake, I am grieving Pam's loss.   I miss her every day.  I miss getting hugs every morning.  I am learning to live with the fact that she is gone... except for all my memories.  I am sure that I will always have those moments when I see a picture, or hear a song, or have a thought run through my head and I will tear up.  But life will go on.  The pain of her loss will diminish.  The inability to concentrate, the up and down sleep pattern, and the days of little motivation will all start to go away.  

But in the last couple of weeks I have realized that my issue, my Achilles if you will, will be living alone.  I never, ever thought about being retired and living alone.  I have not yet come to grips with that idea.   I think the psych-types will equate this with loneliness.  Psychology Today has a number of good articles on the subject.  I guess that should be a topic of discussion with my counselor after Thanksgiving.  So far, I am not liking it at all.

As Thanksgiving approaches, I am not looking forward to it.  This will be the first holiday without her.  I know... I should be focused on the family that will be gathered with me around the table.   I am very grateful for those that  will be sharing their time with me.  I am sure they will understand why I will be setting a place for Pam at the head of the table where she usually sat.  I expect that I will need to leave the table and go to a private place to be alone.   But we will get through it and enjoy the holiday.

Christmas will be especially hard.  That was her season.  She always had the house decorated so well.  I think the boys are going to do that for her this year.  I bought her a Christmas present.  Last Christmas we had to show her how to unwrap her presents because she did not remember.  Such a horrible disease.

Now, some good memories.  One of our favorite places to visit was Bermuda.  Pam booked the first cruise there with a few couples from her bowling league.  We had such a good time that we cruised back again the next two years, only we brought the girls with us.  At the time, Norwegian Cruise Lines was using the Norwegian Majesty for the Boston to Bermuda run.  The Majesty was small enough that it could fit through a channel in the stone cliff outside of St. George's.  So the ship was our hotel for the duration of our stay.   The people of St. George's were wonderful.  The old community, founded in 1612, was safe and welcoming.  We did several guided walks around the area and a horse-drawn carriage ride.  We all had a wonderful time there.  Pam and I returned to Bermuda four or five more time by air.  Our last visit was the destination wedding of our youngest daughter.  Enjoy the photos.

I Hope This Lettter Finds You Well...

 Get on with your life.  That is what I am supposed to do.   You are gone.  You are not coming back.  So I am supposed to get on with my life.  That is awful easy to say.  But I am not having much luck actually doing it. We did almost everything together.  We traveled in our motorhome.  We took the Red Hemi to car shows.  We shopped at JC Penney.  The Red Hemi is gone and the RV will be soon.  I guess I could go shopping.  But you know me..... that just means me sitting at the computer and choosing what I want and hitting the button.

I can't remember what life is without you.  The choice of life with or without you was one we made over fifty years ago.  We made the right choice!  <tears>  I am on my second box of kleenex since you left.  And it is not just me.  The boys miss Gmom, especially Noah and Elijah.  You would be so proud of them.  They are fine young men.  Noah traded the pickup you helped him buy and has gotten a bigger one.  His plates are SLVRHEMI.  I wonder where that idea came from.   Elijah is doing great in his job and bought himself a car.  It is a reflection of their mothers, which is really a reflection of us.  We did good.  Even though you wanted boys, we have three daughters that anyone would be proud of.  I am going to watch Jacoby later today.  He is doing what he loves, playing football for Central.  Maybe you can come and watch him tonight too.  Watch over him.  Ryder will be there playing in the band.

The holidays are coming.  This will be the first year that we are not together.  I thought that being alone might be better choice for me this year.  But Courtney said "Absolutely not!".  They want my cornbread stuffing so I have to be there.  You don't need to worry.  They are looking after me.  After the Thanksgiving dishes are cleared, I am going to be wrapping the present I bought you for Christmas.  I hope that you will like it.  It should fit nicely into your collection.  Sadly, I am returning that nice wool coat I bought you last Christmas.  You never got to wear it.  

You would be happy that all of your beautiful clothes are going to a women's shelter.  I know that they will appreciate them as much as you did.   I did keep your favorite winter hat.  It makes me smile every time I look at it.  I think I may put it next to my grandmother's cookie jar.  It will be the start of the Make Me Smile collection.   I do wish you could tell me where the emerald bracelet is because we can't find it.

I will be going to the condo's Coffee Hour in  little while.  I am trying to stay connected with other people, even though I would rather just be alone with the kleenex.

Please take care of yourself.  I am looking forward to that next dance.  Until the twelfth of never.....