My 46th Valentine

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I was working on the next installment in the series that started with What I wanted in a Husband and what I Got and realized that Valentine’s Day was right around the corner and this year is a special year ~ after 45 years together, he is buying me a present for Valentine’s Day.

When we were first married, I should have known that he would not be giving me presents.   My first clue was when he told me to go pick out the wedding rings myself.   After all, he was paying for the honeymoon.

For the first ten years, I was emotionally hurt that he did not physically pick out a present and hand it to me.   I was told to go and get something.   After ten years, {I’m a bit of a slow learner} I realized that I actually was getting the best of presents because there was no limit on what I could buy for myself.  Who better to pick out what I wanted than me, myself?!

{Exception was our first year together, for my birthday, he gave me a dozen diapers; I was pregnant.  He says he gave me a sweater too but I don’t remember the sweater – I wonder why?}

Not that I broke the bank on my gifts anymore than I did when giving gifts to others.  I always tried to find out likes and wants and what I could afford was hopefully a gift that pleased.

For myself, when I was younger, it was art supplies or supplies for the hobby of the moment; as I got older, it was jewelry, or scarves, or hats. Or shoes!  My husband says I have as many as that Marco woman but he is very wrong ~ I have a pair for each day of the month but since that’s all seasons, that breaks down into one for each day for a week.

After the second bout of breast cancer {I refuse to capitalize that monster} I found living with lymph edema, I am unable to wear my rings or necklaces; that includes my wedding ring that I picked out and the second set of rings we picked out together for our 25th anniversary which our children mostly paid for ~ making those a family gift.

Most of the shoes, I presently am unable to wear because I recently had a bone broken in my left foot and even after healing, having flair ups of the edema makes it hard to wear any but clogs.  Avon has ones that can be worn during the winter {sheepskin-like inserts} and bare for the summer.  Not quite a chic pick but certainly one that works well for me.  Presently then, I am down to one pair of basic black shoes with warm inserts.

In our middle years together we did exchange Valentine Cards but never on the same year.  I’d give one year but he didn’t so the next year he would and I wouldn’t.  Then there was a five year stretch where we both gave cards BUT I only bought one card and gave it to him for five years in a row; until he said to me, “This card looks familiar.  Didn’t you give this to me last year?”  “Yup, and the previous three before that too.”  One thing my husband always did was put cards or presents away.

During those five years, the card was not put away but left where opened.  I don’t truly know what ran through his head or why his spirit seemed to reject my offering {maybe mid life man-on-pause} but since it was the most expensive card I had ever bought for him, back into the envelope it went, to see if next year it would not be rejected.  Five years to my ten to wake up ~ well, he is older.

A little over three years ago my husband was diagnosed with Lewy Body Dementia, akin to Alzheimer’s.  He was started on a regimen of psychotropic drugs that caused him to have Parkinson like symptoms.  I then went looking on line for all I could find on his condition {they do not call it a disease} and also investigated each drug he was taking. I found, to my horror, these drugs hasten death in the elderly; especially someone diagnosed with dementia.  The FDA released this finding in 2005.

I called his doctor and told her I was removing him from the drugs, knew it would need to be done slowly and needed her input.  She said he must remain on them.  I repeated three times what I told her {she apparently is a slow learner too} and added I would do it without her if I must, but it would be done.  She then agreed, and we entered into a year of hell named detoxification.

I wrote a short story about that as we went through it ~ Lewy vs Al ~ for the adult view and a book called ~ There’s Something Strange… ~ which is part of our 7-12 year old children’s series, The Chronicles of The K-9 Boys and Girls on Locus Street. Writing these stories was to insure my sanity and to share what it is ‘like on the inside.’  The children’s book is written with humor.

Finally, this past year it was discovered he also has sleep apnea which may be contributing to his lucid dreaming, his sleep walking, and his REM disorder.  Since I have not had a good nights sleep since the drug treatment was started and then stopped, I can testify, first hand, living in a sleep deprived state does cause a dementia, whether you are the  diagnosed or the caregiver coping.

My husband has wonderful days and days that he really is not my husband.  Sort of a perverse take on my seeing him as Superman when he took his glasses off when young.  Now he sees through dimensions into parallel worlds populated by strange looking people who usually are fellow passengers on a train, plane, or ship; thankfully, not all in one night.

But in all times, he still loves his wife.  He may not recognize me but he tells me about ‘her’ and fortunately, so far, all he has told has been positive.  So getting a gift, handpicked from loving hands will be truly heartfelt, be he in our true existence or on a fantasy trip when given.

10 Comments
  1. Jack Eason says

    I feel for you Paula. It can’t be easy watching your loved one when he is in the grip of his ilness. Like you, I had my first novel published in my sixty-second year.

    Take care,

    Jack

  2. Nancy Duci Denofio says

    Your story is so real, it is life, and unfortunately a part of life we hope we don’t face and I honor you for your strength it takes to write about it, talk about it, and live with the one you love, who is changing. I too have a relative, not my husband but a close relative who was in her forties when her family learned she has Picks Disease. So when it comes to Valentines Day, I wonder if she will remember the heart – but she will enjoy the candy. Sincerely, with great respect for you and your life – now and ahead of you, Nancy

  3. Paula Shene says

    Thank you Jack and thank you Nancy for your feedback. It is true that it is difficult to deal on a daily basis with one whom you have known as extremely focused and intelligent slipping away into a land unfathomable to the rational mind; but, there are flashes of the person and that is the time one lives and reaches for.

    Nancy, I am sorry to hear about your relative and from the standpoint of a person who has had several strokes and having also had aphasia ~ it is frustrating to the spirit living within the body experiencing this disability, it is unthinkable knowing she will have small hope of recovery because of the added disease.

    My husband enjoys his candy too and for now he knows reality more than not , so for now I have not given up on helping him cope with his alternate reality.

  4. Ginia says

    This was a great story, I wish you could reach out to Joan as George is progressing downhill rapidly, and I know it scares her. Love you Paula, Bugger, Joan and George!

  5. Cynthia Emily Griggs - Niswonger says

    I enjoyed reading this Paula. I flowed easily along with your thoughts. As a caregiver to an Autistic child I recognize some of the strength, some of the weary warrior spirit in you. Though I know our stories are different, I felt a kinship. There is a certain non flashy sort of beauty found even in the every day mundane of long marriages–you managed to tell it well. Thank you for sharing this story.

  6. Patty Wiseman says

    Paula, I am slow at catching up on my reading, but this story touched me so profoundly. I know it’s past Valentine’s day, but your story is for ALL days. Bless you as you continue your journey and may every day find a silver lining for you. I was especially touched by the reference to your lymph edema for it is what my 18 yr old grandson has just suffered through from an injury. It’s been harrowing. The infection was out of control. You are an inspiration and I am proud to call you friend! Patty

  7. Paula Shene says

    I think Cynthia, dealing with Autism is an exhausting a job as dealing with dementia. Anything to do with brain function causing an abnormal {to us} state of being is heartbreaking. My heart goes out to you with prayers for strength in your spirit as you walk this road with love.

    I am sorry Patty to hear your grandson has Lymph Edema as it is something that makes physical work very difficult even when the infection is under control. The only advice I can give is to never give up; each day will bring a victory and exalt in it, no matter how small. It took me almost two years to be able to advance from handling 4 ounces { 1/2 cup of coffee} to pouring coffee from a 12 cup pot. Physical therapy and determination will win the battle but caution will always be a sidekick…the best for him and you…

  8. Ann says

    Ah… this fills up my heart! You show how important it is to look for the sliver lining. ♥️♥️♥️

  9. Sandra Kay says

    Thank you, Paula. My husband’s diagnosis is Lewy Body Dementia with Parkinson’s Syndrome and REM sleep disorder. His dreams became so aggressive and violent that his doctor insisted that I sleep in a different bedroom. She said too many caregivers have been unintentionally hurt, and I have been. I woke up one night and he was standing at my side of the bed just staring at me. He was asleep and I was terrified to move because I didn’t know what he was dreaming or if he knew that was me lying there. I just kept talking to him and trying to wake him up. This was just two nights after he had hurt me to the point of crying. My husband, who in 45 years of marriage had never hurt me or touched me in anger.

    He was originally diagnosed with MCI and Parkinson’s in 2010. Eventually, they settled on LBD. Over the last year, the progression has been very fast. I asked him the other night where he was and he didn’t know. It’s very difficult being a caregiver for your spouse and watching him decline and lose his memories. So far, he still recognizes me although he doesn’t remember our grandkids names. Like you said, though, he always loves me.

    God bless you, Paula.

  10. Paula Shene says

    The silver lining is the impetus to keep going forward. Thank you, Ann.

    Sandra, my heart aches for you and for your husband. This is a hard road to walk, but love will sustain you. I just pray you have some help to give you the time to sleep and recoup your physical strength to go on.

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