JOAN’S BLOG – MONDAY, FEBRUARY 25, 2013 – IN OUR SHOES

When Sid and I moved from our home in Massachusetts in 2006 for a life in Florida without snow shovels, ice, and freezing weather, we left behind some wonderful friends. We had spent 30 years with these friends; our children were best friends; we saw each other through job losses, job changes, raising children, birthdays, Bar Mitzvahs, First Communions, Confirmations, graduations, funerals, weddings, divorces – everything life brings. They remain today, my best friends and staunch supporters through my Alzheimer nightmare. All three of these couples have visited us in Florida at least once, and one couple comes every year. We talk on the phone often. 

It was two of these phone calls this weekend that emphasized to me that no matter how supportive friends are, no one knows what we Alzheimer Spouses go through emotionally, mentally, and physically, unless they experience it themselves.

My friend’s husband hurt his back. He is apparently on the same medication regimen as me, and has the same orders from his doctor as I have from mine – do nothing but rest and take the medication until the acute inflammation eases. Then back injections. I was talking to my friend this weekend, and she was tired and engaging in a wee bit of complaining, as she told me that he does everything for her, and she had to take out the garbage, go grocery shopping, bring in the bundles, put everything away. She could not wait until he was better. I said to her – “Welcome to my world.”

Regardless of the fact that she was here and saw Sid’s condition and what I do, and had plenty of sympathy for me, it wasn’t until she got a small taste of it, did she realize what it is like to be a 24/7 caregiver. She is one of the best people I know. I love her dearly. She has been by my side through some of my most trying times, but even for her, it took an immersion into caregiving to truly understand.

The mother of one of my other friends died from Alzheimer’s Disease. I remember being totally ignorant of the situation when she was going through it with her mother. I could do nothing but offer a sympathetic ear. At the time, she was angry at her father’s seeming indifference to her mother. She could not understand how he could go off and leave her alone. When the family made the decision to place her mother in a nursing home, my friend was upset with her father, who did not visit often, and had a “lady friend”. I, too, shared her anger at her father. It is true, that from her perspective, their marriage was never the best, but no one, not even the children, know what really goes on in their parents’ marriage. In any case, she was not pleased with her father’s reaction to her mother’s Alzheimer’s Disease.

This friend has been by my side, although not locally, but certainly in spirit, love, empathy, and support, from the beginning of my Alzheimer journey. She reads my website and the message boards religiously. She told me this weekend that she now has a different perspective of her father than she did, because of everything she has read on the website, and all that I have been going through. She said that there is absolutely no comparison between the emotions and issues an adult child experiences and those experienced by an Alzheimer Spouse.

I am writing of these two examples because I want to emphasize to Alzheimer Spouses everywhere that “our issues are unique”, as the website logo states, and no one, not even someone who has had a family member with Alzheimer’s Disease, can understand what Hell we live through. It can only be understood by other Alzheimer Spouses. I also want to emphasize that no one can know what 24/7 caregiving entails unless they do it.

Although sometimes it is difficult, I ask that you not judge those “friends” who have left you or who do not understand. My heart is full of love and gratitude for my fabulous Northern friends. I am so lucky to have them. But even with their support, I was alone with my thoughts, my emotions, my guilt, my pain, until I started this website, which has allowed me to share my experiences with those who understand - other Alzheimer Spouses.

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©Copyright 2013 Joan Gershman
The Alzheimer Spouse LLC
2013 All Rights Reserved
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RECENT BLOGS:

Alzheimer's Disease is Destroying My Life - November 6/7, 2012

Finding Joan - After a week's respite at my sister's house for Thanksgiving, I found out that I still exist outside of Alzheimer's Disease - November 26/27, 2012

The Torture of the Placement Decision - The time has come to save one of us - December 3/4, 2012

Alone - Dealing with my father's death without the comfort of my husband made me realize how alone I am -December 27,28, 2012

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