JOAN’S BLOG – WEDNESDAY, AUGUST 20, 2014 – DESPERATELY SEEKING HELP

I am not very good at this. The “this” of which I write is watching my beloved husband of 44 years, who is now under Hospice care, slip deeper and deeper into the abyss of Alzheimer’s Disease.

When I visit with him, although still happy to see me, he now has little affect, is perpetually fatigued, and has difficulty organizing his thoughts enough to be able to answer a question coherently. He is so exhausted that most afternoons he asks to be put into bed, so he can take a nap. When settled into bed, he looks over at me with sad eyes and tells me how much he loves and misses me. With all the strength I have left in me, I hold back the tears and quietly tell him that I love and miss him too. Two days ago, as I was sitting by his bed, I added – But I can’t take care of you anymore. To my amazement, he softly said – I know. The countless pieces of my already shattered heart were pulverized into dust when I heard him speak so lucidly. Somewhere inside his Alzheimer imprisoned brain, my Sid still exists. It was my Sid who spoke those words, not the angry, irrational, confused person Alzheimer’s Disease has left in his place. It cuts deeply into my soul to glimpse a tangible piece of who he used to be. Is it a welcome relief or another jagged knife piercing into a wound that does not heal? Would it be better to never see a piece of the old Sid than to catch a fleeting glance of who he was and will never be again? I have no answers to these questions, only deep emotional pain.

Whether asleep at night or awake during the day, my head is filled with nightmares of the total devastation I will experience when he takes his final breath. I cannot imagine my world without him in it. I cannot imagine my husband being dead.

Conversely, my rational mind wants this pain and suffering to be over for him. No one deserves this staggeringly ghastly disease that destroys both patient and caregiving spouse.

Why is this so difficult, I ask myself. After all, I have been doing this for over 10 years now, haven’t I? I have endured his personality changes, mood swings, temper tantrums, violence, confusion, forgetfulness, misunderstanding, loss of cognitive function, loss of physical abilities. I have read all of the books. I have read all of the “end stage” stories you have shared on the message boards. I know that Alzheimer’s Disease takes no prisoners. It is a long, slow, torturous death, but death is always the outcome. None of my knowledge or experience is helping me now. I am no good at this.

In the midst of trying to cope with the impending death of my husband, I have been trying to take the expert’s advice and build a single life for myself. I have been looking for activity based groups to join, events to attend, people to meet. I have been repeatedly asked by well meaning friends if I have made a decision on moving “after” and where that will be.

It has all been too much for me, sending me into a deeper well of depression than I have been. In desperation, I reached out to the Hospice Social Worker, telling her that I cannot do this; I don’t know how to do it; I don’t know what kind of help I need, but I need help. She told me that Hospice offers a support group (I’ve had my fill of support groups – I knew that was not what I needed). They also offer one on one grief counseling. That was it! That is what I needed. I did not “click” with the psychologist I saw two years ago, and I found her to be minimal to no help at all. But I was willing to give the Hospice counselor a try.

My first meeting with her was on Monday of this week. I found her to be warm, nurturing, knowledgeable, understanding, and extremely helpful. In a little over an hour, she had me feeling better than I have felt in years.

Did she give me a magic bullet that I can share with you to help ease the pain of those of you who are at this stage with me? No, she did not. We talked about feelings of guilt, conflict in wanting him to stay and wanting this to be over, love, loyalty, my right to a life, trying to do too much at once during a time of “limbo”. In the end, I was given a coping prescription until I meet with her again in two weeks. She encouraged me to stop dwelling on what is to come; to stop making myself sick about the inevitable, and just live one day at a time. She strongly suggested that I do not make Sid the entire focus of every day. She said that I should make sure he is well cared for, visit a few times a week, but do not obsess over his fate. Get up in the morning, and think -What am I going to do TODAY – for ME? She gave me a list of 3 groups she thought had activities that would interest me, and urged me to try each at least once.

I am making an extreme effort to follow her advice, particularly the part about not obsessing and dwelling on what is to come. Relieving myself of that burden has already helped me feel better.

If any of you share my stage of the journey and/or my feelings of conflict and depression, I hope this blog has been of some help to you. If you do have Hospice social workers available, I urge you to utilize their services. These people “know their stuff”.

MESSAGE BOARDS: Joan's Blog - Desperately Seeking Help

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

CUSTOM DESIGNED SCARVES AND MORE

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.           

The Alzheimer Spouse LLC 2010 All Rights Reserved