A DAUGHTER'S DIARY -Part 1

July 2020

Since the pandemic took over the world, life for all of us is quite different. This certainly includes caring for our loved ones. For me, my mom has Alzheimer's for the last 16 years and lives in a nursing home. She has been in the last stages for the last 3 years, yet somehow sadly enough she will not let go.

I live in New York and every year fortunately I have been able to spend a few months with mom. I arrived in Florida this year on Jan 14th planning to be there for nine weeks. My nine weeks turned into four months yet my visits to mom's nursing home abruptly ended on March 10th. Like many of us that have a loved one in a facility we are still not able to enter to see them.

What follows are my actual notes of when I first visited mom till Covid19 hit the United States.

First visit:
Mom spoke(non stop) gibberish with her eyes mostly closed as she also spoke about her mom. I wondered if I was her mom since she also said to me "I love you". After observing her on my first day I now questioned how anyone including myself can think that those with Alzheimer's are not suffering. I will never know the real answer since she cannot tell me. Yet as I observe her I believe that she is locked in a prison with 4 walls that she never can escape from. To me it is like a living hell.

The only saving grace is that she doesn’t realize what has happened and thankfully she appears not to be in physical pain. What I have witnessed through the years which is more deadly is a slow mental death. I believe that she’s aware just that any thoughts she may have disappear as quickly as they come.

Third visit:
Mom looks so sad. Her face appears to look like skeleton, her eyes are sunken in and red. Today her mouth seemed somewhat twisted. My brother several months ago had noticed it & we questioned if she had a minor stroke. I so deeply felt that she wanted to say something to me but was unable to speak. Her eyes as she looked at me with a blank stare told me she wanted to say something but was unable. I now feel certain that she knows it’s me.  I pray that she hears my words of love to her .

My best friend whose mom passed away years ago from Alzheimer's askes me how my visit went. My response is " I tried to distance myself from being emotional about my mom. There were times I looked at her and was heartbroken". I think that I am immune from the situation yet as the evening comes to a close I can't stop thinking of her.

Fourth visit:
I believe she hears my words so as I was saying goodbye I quietly whispered that it was okay for her to go to sleep. I whispered that I think she would be happier. With her blank stare she just looked at me with a face that appeared empty. One that cried out in silence for someone (me) to help her. Years ago after being in the facility she said to me “kill me” which at the time I thought she perhaps had just made a mistake with what she wanted to say.... now that I look back & think about it I believe that was exactly what she was asking.

End of first week:
I found through the years that many times after seeing mom I needed my own escape. Many days  I would take a walk on the beach and once a week go to a movie just to clear my head from thinking. This week I went to see "Little Woman".

While watching Jo says to sister Amy, "when did you become so wise”? Amy answers "maybe I always was but you were too busy noticing all my faults". This strikes a nerve and has me remember that years ago after explaining my early relationship with mom to a friend she answered, "maybe your mom was always like this but you never noticed". I leave the theatre feeling sad wondering how many years I might have wasted.

Week 2:
Today mom's eyes with a blank stare remain open. She shakes her head yes or no when you ask her a question. She holds my hand so tightly & if not mine, then her own. She moves her arms to wipe her eyes. Today she blows me a kiss. Her eyes continue to cry out in sorrow. She seems unable to speak yet her eyes say it all. I am so certain that she sees( although she has macular degeneration) & understands what I say. She knows I am here.

Week 3:
This is not fair. I see and can feel her pain. I see it within her face. Are the words that remain unspoken crying out to help her? Today her eyes remain open and her lips remain silent as if they are forever sealed .Each and every time that I come and visit my mom it never gets easier.

Week 4:
Saw mommy at 11AM(she's better in the mornings). Showed her a picture of her great grandson(sad because she can't see images) & tried to explain who he was. I believe that she understood for her eyes opened a little wider as I spoke & then suddenly she looked at me as if to say.....then she closed her eyes and slept for the rest of our visit.

Week 5:
As I leave now to go see my mom I feel sick and have numerous sad feelings. Feelings of I can’t keep doing this. My stomach churns, I feel nauseous & I have a headache. Maybe I have been in denial.

Seeing my husband's cousin earlier in the week he had asked how my mom was doing. I responded with how this year seems so much better. He so wisely said "not really you’re just getting use to it".  My answer..."I doubt that for it is something you never get use to."

A Day of Miracles (maybe?)
Today my husband and I accidently ran into moms doctor & the social worker from hospice. Mom has been stable since they have been giving her supplements (Ensure) which is against her wishes. We also find out that the doctor has her on Synthroid(for thyroid) and he claims that both of these are partially keeping her from declining.

We state her & our wishes to get her off of both. We win (hooray)doctors orders are given to remove both. Let’s see how long this lasts before NH doctor intervenes & reissues both. Director of Hospice says we need a symptom to remove mom from nursing facility. Praying that this will cause a symptom so mom can be moved to hospices own facility to fulfill her wishes. Only the next few weeks will tell.

I go to moms room and whisper in her ear that I am trying to make her wishes come true. With tears in my eyes I share that next week I will be leaving (March 19th)to go back to NY. Oh g-d how I wish that I could give mom the peace she so desperately wants and especially before I leave.

Next day:
Mom opened her eyes & threw me a kiss then her eyes shut closed. Before I leave each year almost as she senses it she does something unusual. I know for certain that every time that I come to see her she knows that it’s me.

For the last few days my tears are tears of what I believe will be my final goodbye to my mother.

Yesterday again my mom threw me two kisses. Another miracle.

Just received unexpected call from NH. They are on lockdown. Happened right after the tragedy in Washington State. No cases but no visitors to further notice. Sad because I was going to go starting tomorrow everyday to say my goodbyes; believing that next year she will not be alive & that I will never see her again. Just hung up w my brother crying.

 Part 2 to be continued …….next week.

"Letter To My Mom" & My Mom My Hero are both available on Amazon worldwide. Ebook, Audio, Paperback.

https://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=lisa+hirsch