JOAN’S BLOG  - MONDAY, AUGUST 25, 2008 – IT’S DIFFERENT WHEN IT’S A SPOUSE – PART II

The motto of this website is “Our Issues are Unique”. That was the main reason I started this site; I knew it; you knew it. You flocked here in droves to discuss the ways in which Alzheimer’s Disease affects marriage that no one but a spouse could possibly understand. My Blogs and message boards are filled with stories of loneliness, emotional pain, hurt, fear, resentment, loss of companionship, and guilt that all spouses of Alzheimer patients face. And beautiful, heartwarming memories of love. When Alzheimer’s Disease has stolen every piece of the personality and essence of the spouse we loved, we have the memories of a deep love that once was; we hold onto it, cherish it, and are grateful for having had it.

Last March, I wrote a blog entitled, “It’s Different When it’s a Spouse”, which I will reprint today, but I have noticed some slow, subtle changes in the public’s perception since then. Maybe it is because I cannot keep my mouth shut; I am preparing to do my third radio interview about spousal issues; Sid and I have discussed it on two conference panels; I talk about it at every conference I attend; I have brought our situation, in person, to the legislators in Washington DC, and your message board stories are now reaching hundreds of thousands of people in at least 3 countries of which I am aware.

People are beginning to understand that spousal issues ARE different, and we do need specialized support and counseling to help us through this journey. Just recently, I was speaking about the emotional stress of living with an angry, verbally abusive, vindictive Alzheimer’s Disease possessed spouse, when a woman who was caring for her AD mother, came up to me and said, “I never realized what spouses go through. Not that there isn’t emotional pain in caring for a parent; of course there is. It is just that the emotional pain is so very DIFFERENT when caring for a spouse.”  One of my oldest friends lost her mother to Alzheimer’s Disease. She reads this website faithfully every day, and repeatedly says to me, “What you and other spouses go through is COMPLETELY DIFFERENT than what I went through with my mother.” A very young reporter, who is doing a documentary on care giving, told me last week that she had interviewed a woman caring for her mother-in-law, and after interviewing me, she could see that the emotional issues were completely DIFFERENT.

And that is the point of this website. Alzheimer’s Disease is devastating to every patient and caregiver. But when it is a spouse, the “issues are unique”.  It is my fervent desire that doctors, counselors, and social workers will not only recognize this difference, but start support groups that address the specific emotional issues – loss of companionship; loneliness; the difficulty of living with the stranger Alzheimer’s Disease has put in our spouses’ place; and offer validation and support, even if there are no solutions.

For our many new members, who have not read it, please see below for March’s Blog on this same subject:

IT’S DIFFERENT WHEN IT’S A SPOUSE – From March, 2008 - Reprinted on August 25, 2008

Do not misunderstand. I acknowledge the pain every family caregiver feels when watching a loved one slip away to Alzheimer’s Disease.  But I created this website because it’s different when it’s a spouse. That difference is on the face and in the tears of every spouse I have talked with this week. The predominant emotion is grief – that the husband or wife with whom we have shared our life, pillow talk in the darkness at the end of a day; excitement at the birth of our children;  passion; the deepest of emotional connections; and all of the triumphs and tragedies of a lifetime union, has disappeared.  They haven’t died in the physical sense; the essence of their being, the person we loved, has died within them, leaving a confused, cognitively impaired, childlike figure in their place. And the worst of it is that it hasn’t happened all at once. The agony of Alzheimer’s Disease is that they die a little at a time; each year of this dreadful nightmare takes another piece of them, so we are forced to grieve and mourn over and over again.

Nothing that I have ever seen or experienced can compare to the pain of losing a spouse in this manner. When we look at our husband or wife, we are awash in loneliness and longing, and we think  “Where is my husband? Where is my wife? Where did you go? Where are you? I miss you. I want you here with me.”
To those of you who continue to suffer in silence and isolation, I tell you that you are not alone. We share this journey with you, understand, and are here to give you support. All you have to do is reach out and accept it, either in person at one of those support groups we discussed this week, or here on this website. To those of you who have learned the value of sharing difficult emotions with one another, I thank you for being there for all of us when we have needed you.

Although there was a message board topic related to this issue, I have started a new one dated 8/25/08 – Please post comments under – Joan’s Blog – 8/25/08 – Spousal Issues are Unique.

Feedback to joan@thealzheimerspouse.com

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