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SCROLL DOWN FOR JOAN'S BLOG - WHERE DO I GO FROM HERE?

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JOAN’S BLOG – JANUARY 20, 2015 – WHERE DO I GO FROM HERE?


The year is 2015. I am entering my 13th year in the Alzheimer World. During the first 3 years, due to frustrating misdiagnoses, I had no idea that I was crossing the threshold into a world of Hell from which there would seem to be no return. As I enter this 13th year, I feel that it is time for me to do some evaluating of where I have been and where I am going in both the Alzheimer World and the “normal” world.

My blogs chronicle my journey as an Alzheimer Spouse, and mirror yours in many cases, from the initial shock of realizing that a disease can alter a solid marriage built on love and trust to where I find myself now – a single woman living  “in limbo” as a widow with a living husband who resides in an Alzheimer Unit of a nursing home. I am not a wife; I am not a widow; I am legally married, but have no marriage, if one defines marriage as a bond of passion, friendship, trust, companionship, communication, and love between two people living under the same roof.

The husband I knew who was both gentle and strong, loving, kind, passionate, capable, an electronics whiz, and truly “the wind beneath my wings”,  is now trapped in a confused, angry, depressed, deteriorating mind. It is heart wrenching to watch him struggle to find words to express himself; to recall words I uttered barely a minute before; to scream for me to help him dress, rather than the aide assigned to him. This is what I face when I visit him, and this is what he lives. Because there is no cure, and because he is only going to get worse and less capable, I can do nothing for him but hold his hand and hug him.

So now we turn to me. Where do I go from here? I have accepted that I am “single”, need “single” friends, and desperately need activities that nurture my both my mind and fun side. (There is still a “fun” side buried deep inside of me, begging to come out and play)

For the last 10 months, based upon advice given me by my grief counselor, relatives, and friends, I have been trying to build that single life with new friends and activities. In Part III of my Isolation Series, I discussed how surprised I was to find how extremely difficult it is to find new single friends and activities, unless you live in an “over 55” active development that has a clubhouse and an activity and club for every interest on the planet. For 10 months, I have done things completely out of my comfort zone in the name of building a new life. Who can forget my 2 hour drive to Orlando last summer and subsequent overnight hotel stay because I wanted to see Blake Shelton in concert and no one else I knew did? Or my drive by myself to a Rascal Flatts outdoor concert an hour away, as well as my drive home in the pouring rain and darkness?

I have had hits and misses. On many occasions, I have taken two steps forward and three steps backward. I attended a luncheon for a “newcomers group”, the purpose of which was to find friendships and activities. I came home more depressed than I had been before I went, as I felt surrounded by souls as lonely as myself, looking for friends. I was uncomfortable. It was not a right fit for me. I attended a group for writers that had a different outcome. Our commonality was love of writing, interest in getting published, and helping each other through the processes, rather than a “lonely hearts” club. I loved it, and will be returning.

Walking into a room full of strangers, introducing myself, and trying to make conversation is not something that is natural for me. I am more of a one-to-one type of person, but necessity has forced me to learn to dive in and start, rather than join, a conversation. I look at it as a practice session for socializing on my own. Last month, I attended a party with a long time friend and her husband. Determined to “practice” my new skills and not stay attached to my friend all night, I spent the evening venturing into various groups of people and starting conversations, by asking about them and their interests rather than focusing on myself – a trick I learned from an outgoing, friendly cousin. Much to my surprise, it worked. People talked to me all night. When we returned home, I told my friend that I had been worried that my social skills were rusty, and I would be a wallflower all evening. She responded with – “No, you did GREAT!” One step forward.

This group socializing is out of my comfort zone. I am used to, and prefer, a small niche of long time friends, with whom I can go to dinner, travel, attend movies, and theater. Moving to Florida away from a home I had known for 36 years, and being thrust into the Alzheimer World upon arrival, threw my old methods of social interaction out the window. Since I am being given no choice but to live this involuntary single life, and I want to live it in the “normal” world, I must change my ways of meeting, socializing, and interacting with people.  

I will have successes and I will have failures. I will probably find myself in more situations out of my comfort zone than in it, but all I can do is forge ahead, with the pain of a love lost to Alzheimer’s Disease forever in my heart.

MESSAGE BOARDS: Joan's Blog - Where do I go from here?

Feedback to joan@thealzheimerspouse.com
©Copyright 2015Joan Gershman
The Alzheimer Spouse LLC
2015All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken.

 

 

JOAN’S 2015 NEW YEAR’S BLOG – DECEMBER 30, 2014- JANUARY 2, 2015


As another year as an Alzheimer Spouse comes to a close, I must dig deep to find a way to wish us all a Happy New Year.

What constitutes “happiness” next year (or any year) for an Alzheimer Spouse? What does “Happy” in the New Year mean to you?

Does it mean regular respite from the rigors of daily caregiving?

Does it mean in home help to relieve you of some of the “heavy” lifting of caregiving?

Does it mean a wish for acceptance and patience on your part?

Is it the desire for a support system to call upon for understanding?

To me, Happy New Year means:

That Sid will finally be far enough advanced into Alzheimer’s Disease that he will find his own peace and happiness. It may sound odd that I want my husband’s disease to progress further, but he is “aware” enough often enough to be lonely, angry, and miserably sad about his situation. I would rather he be unaware and peaceful than to see him as he is now – struggling to “get back to normal”, as he says, and deeply depressed because he cannot find his way back.

That Sid will pass serenely before he has to endure the lengthy horrors of end stage Alzheimer’s Disease.

That I will have some semblance of calm without constant crises knocking the wind out of me.

That I will advance in my quest to establish a new single life for myself.

Whatever “Happy” in the Happy New Year means to you, it is my wish that you find it in 2015. Please share your wishes for the new year with us on the MESSAGE BOARDS: Joan's New Year's Blog

Let us look back with love and remember those who were released from Alzheimer’s Disease in 2014. This list may not be complete. I have requested help from our members in finishing it via the message boards or email to joan@thealzheimerspouse.com
http://crooksandliars.com/files/primary_image/14/04/in-memoriam.jpg
Julia – Husband Reno – 1/3/14

MarilyninMD – Husband Steve – 1/28/14

MaryinPA – Husband Ron – 7/24/14

Coco – Husband Dado – 7/23/14

Hildann - Husband - 7/26/14

Joy - Husband Andy - 10/17/14

Clf – Husband – 10/22/14

Elizabeth – Husband Lawrence – 9/2/14

Divvi – Husband Jack – 12/14

Katiemikaelian – Husband Chuck – 12/14


Feedback to joan@thealzheimerspouse.com
©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken

JOAN'S HOLIDAY NOTICE - DECEMBER 24, 2014

Whether we celebrate Christmas, Hanukkah, Kwanzaa, or nothing at all, we cannot deny the festiveness of this season. It is a time of sharing, worship, love, hope, and joy with family and friends.

Rather than focus on the stress and exhaustion of caregiving and the heartbreak of losing our spouses to to the dark abyss that is Alzheimer's Disease, I am asking you to do as I am doing - choosing to focus on what I have instead of what I have lost. Many of you have children and grandchildren who bring light into your lives. Cherish and enjoy them this season.

Although I have no grandchildren, I do have an emotionally supportive son, and friends and family who are always there when I need them.

I am sure that, in spite of the intrusion of Alzheimer's Disease into your life, you have other blessings that are important to you. Please try to glean some peace and enjoyment from them.

Stay tuned for my New Year's Blog and annual "In Memoriam" when I return from a little time away with my dearest friend and her husband. They never allow me to be alone on a holiday.

To all of you and your families - I wish you Happy Holidays and a Happy New Year.

Feedback to joan@thealzheimerspouse.com
©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken

JOAN’S BLOG – DECEMBER 15, 2014 – IS IT SEXUAL ASSAULT?

An incident has come to my attention that I feel strongly is appropriate for discussion on this website dedicated to spousal issues related to Alzheimer’s Disease/dementia. I ask that you read the article in this LINK and my comments very thoroughly and carefully before posting your opinions and comments on the Message Boards. Please be sure to read the family statement that appears after the article.

The situation of sexual consent between a “well” and “demented” spouse has been discussed previously on this website. To simplify a very complex matter, our discussions boiled down to this:

  • “Well” husbands vs. “demented” wives- Some of our “well” husbands felt that their wives were willing and able to give consent, and continued to engage in sexual relations. Other “well” husbands deemed their wives to be “childlike” and felt that they would be taking advantage of someone incapable of giving informed consent, so they did not pursue it.
  • “Well” wives generally lost interest in sex with their husbands after providing care for them as one would a child – changing diapers being the biggest turn off. To many, it was a non-issue, as their husbands had lost the ability to perform. There were some women who were relentlessly pursued by husbands who were “hyper-sexual”, usually those with FTD. Solutions varied from the women moving to a different locked bedroom to moving out, to placing the husband in a facility.
  •  In some cases, occasional sexual encounters were loving and welcomed.
  • The subject of intimacy with one’s spouse in a long term care facility was mentioned only briefly, and not really expanded upon.

Let’s assume, for the purpose of this discussion, that the wife of the man in the article was cognitively able to consent. If that was the case, what do you think about his prosecution? Who decides and how is it decided if a demented woman is capable of consent? Should demented spouses living in a facility be allowed “private time” with their “well” spouse?

What if the demented spouse is a man, and his wife would like private “cuddle” time with him? I am NOT using “cuddle” as a euphemism for sex. I mean what the word implies – intimate hugging and cuddling. What if the man is capable of more than cuddling, and the wife desires it? The question is the same (or should be) as in the case of a demented wife. Who decides and how is it decided if the demented person is capable of consenting? Should husbands and wives be prosecuted if someone decides that the demented spouse is cognitively incapable of giving consent?

What about the strong bond between longtime spouses who are still capable of “reading” each other’s unspoken emotions and desires? Only those who have experienced it can understand and acknowledge that such a bond exists. My own husband can barely complete a sentence because he cannot hold a thought in his head long enough to remember what he wants to say. Yet there are times when my old Sid appears with a word, a gesture, a look that only I can interpret.

I know from experience that my readers are intelligent, articulate, and thoughtful, so let’s tackle this complex subject with the intellect and respect it deserves.

MESSAGE BOARDS: Joan’s Blog – Is it sexual assault?

Feedback to joan@thealzheimerspouse.com
©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken

 

 

 

STARRECENT BLOGS:

Series - Caregiver Isolation - Part I - November 14, 2014

Caregiver Isolation - Part II - Is there a solution? - November 18, 2014

Caregiver Isolation - Part III - Spouse in a facility or has passed on - November 24, 2014

 

 

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The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.           

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