JOAN’S BLOG – THURSDAY, FEBRUARY 17, 2011 – GUEST BLOG – I AM AN ALZHEIMER SPOUSE

Recently, a member sent me an essay he/she had written about life as an Alzheimer Spouse. I felt that it captured everything I have written about and we have discussed on this website since its inception in 2007. I would like to share it with you today:

When we are young and newly wed, our lives lie before us like an endless road. The thought of future infirmities, of being apart forever cannot even be understood, should it fleetingly enter our minds. We are young; we are invincible. 

Later, when we have children and other responsibilities, the subject of mortality may peek out at us from the far, far side of that endless road, for we have responsibilities now…children, a house, a spouse.  So, we buy some life insurance, schedule our annual physical, vow to exercise daily, and move on.  The end of days is still a foreign, distant concept.   

As we age, there is still no answer to that question of, “What will become of US?”  I know the answer to that question now.  It has been thrust upon me like a bolt of lightning through my brain.  My personal fate is still a mystery, but for my spouse, it is a not too distant certainty.  My spouse has Early Onset Alzheimer’s Disease...his/her fate is sealed…it is simply a matter of time to see the cruel, ignoble death that will be his/her fate.  And for me, the “unaffected” one of our “endless” duo, I soldier on, because I must; for you see… 

I am an Alzheimer’s Spouse.  My name might be Betty, Samira, or O-Lan; it could be Sam, Hakim or Hong-Li. My name is as irrelevant as is my gender.  Alzheimer’s is an equal opportunity affliction; neither race, color, sex nor creed matters.  I am an Alzheimer’s Spouse, and I have issues. 

I am an Alzheimer’s Spouse, and I’m tired.  I’m tired of cooking, washing, ironing, picking clothes up off the floor, setting clothes out, putting clothes away, washing dishes, drying dishes, cooking meals, cleaning up after meals, all the while trying to direct my spouse and keep him/her on track.  I’m tired of answering the same question 5 times in a row; I’m tired of being the taxi service; I’m tired of keeping my calendar & his/her calendar; I’m tired of being the home pharmacist, diagnostician, therapist and counselor; I’m tired of being a parent and supervisor to someone who used to be my partner; I’m tired of being alone. 

I am an Alzheimer’s Spouse, and I still want intimacy.  When my spouse was diagnosed, I had already known things had changed, but I didn’t know why.  Once the diagnosis came, I eventually transferred from lover to caregiver mode.  My own fault, right?  Not really.  I found that to keep my sanity, I had to divorce myself from that intimate bond that my spouse and I used to share, otherwise, I would not be able to function, because my lover had now become this still very pleasant person who might even still want to share some sort of intimacy with me, but I could not walk that path at night, and then assume my role of caregiver in the morning.  Then too, as he/she progressed, one wonders how much consent he/she can give to “The Act”, and if he/she still enjoys it, or can function in that capacity any more.  Maybe it is selfish, but I have chosen the life of a celibate in order to keep from becoming an emotional wreck.  Above all, I am learning, the Alzheimer’s Spouse must remain strong. 

I am an Alzheimer’s Spouse, and I am disappointed.  The “Golden Years” for which we planned, the trips with the kids and grandkids, the babysitting, the family get-togethers, the travel in our retirement; our future…all unexpectedly gone.  I know my spouse will never know some of his/her grandchildren; those that are old enough now to remember will always wonder, “What was wrong with grandpa/grandma…he/she couldn’t play that board game with me”. 

I am an Alzheimer’s Spouse, and I’m ANGRY!!  I may have somehow deserved this in my sorry life, but my dear spouse surely didn’t.  I’m angry at God, I’m angry at nature…damn it…I’m just ANGRY!  If there ever was a test of faith, this disease surely must be it, both for the afflicted and for the afflicted’s spouse, and I’m not sure it’s a test I want to or can pass! 

I am an Alzheimer’s Spouse, and I’m bitter.  Like so many of the “boomer”generation, our marriage was solid, but not without its challenges.  At one time, my spouse strayed, and I was left with the situation of ending the marriage and letting him/her join his/her lover, or tough it out, reconcile, and keep the marriage and family together.  I chose the latter, which seemed the best course at the time.  One can only wonder, in hindsight, what the road not taken would have brought. 
I am an Alzheimer’s Spouse, and I am scared.  I am scared every day, as I see a new failing in my spouse.  The fear of the present is only surpassed by the utter terror of the future.  How bad will my spouse get?  Will I be able to still support and care for him/her?  And, when the inevitable occurs, will I have the strength to combat the all-consuming loneliness that will be mine alone?

I am an Alzheimer’s Spouse, and I’m exhausted.  Repetitive?  Already covered under “tired” above?  Not really.  There is a difference, quite large I’m finding, between “tired” and truly “exhausted”.  Tired is when you’ve taken a long hike in the beautiful woods and sunshine, and returned to camp to a warm welcome, friends, a cool drink and camaraderie; tired is when you’ve stayed up until 2:00 AM Christmas morning to put the kids’ or grandkids’ toys together, just fallen into bed, only to be awaken at 5:30 AM by little, excited feet running down the stairs; tired is that feeling just before you doze off in your lover’s arms after a long, hard day at work, whether it be home, office, or whatever, and marvel at the energy and calm that the act of love has brought you both.  Tired always ends well; exhaustion…not so much.  Exhaustion is an abyss that, unless you’re careful, becomes all-consuming and all-powerful.  It exists to eat your spirit, mind and soul, leaving you a hollow shell.  Ungoverned, it can suck the passion, spirit, joy and, finally, the very life out of you.  It is a merciless, unrelenting foe, and it is the constant companion of every Alzheimer’s Spouse.  Recognize its signs, and defend against it.  It will eventually kill you and poison all those important around you, if you let it.

I am an Alzheimer’s Spouse, and I am depressed.  From opening my eyes after another fitful night of sleep spent worrying about my mate and our future, to the end of the day when I drag myself into bed, the cloud of Alzheimer’s hangs over me heavily.  The worst is at 2:00 AM, when the mind is free to wander and explore the depths of my utmost fears unchecked.  That is when, with my spouse breathing softly beside me, that sometimes the silent tears come and refuse to stop.  What will it be like at this point in our lives when he/she is not there beside me anymore?  Will my mate have a gentle ending to his/her good life, or will he/she end up in a facility, days spent in a wheelchair, not knowing me or anyone around him/her, drooling and staring into space?  I might consider a pill to help me sleep and another to help my mood, but an Alzheimer’s spouse must remain vigilant and sharp of mind, so that becomes a fleeting, unpractical solution. 

I am an Alzheimer’s Spouse, and I am lonely.  The partner I had that made decisions with me, listened to my problems, as I listened to his/hers, guided me or lovingly cajoled me  when I needed it is still here, physically, but he/she cannot pick out his/her clothes to wear for the day or make a choice from a menu, let alone participate in the daily back and forth banter that makes a couple a couple.  The pleasure of going out occasionally for a nice meal can turn into a frustrating exercise in patience and good humor.  I do not always do well at that exercise.  One wonders just how different the loneliness will be when he/she isn’t here anymore.  Will it be worse, or just put in the back if my mind, because he/she might go on for years in a vegetative state in a facility somewhere.  What then will become of me and my life?  Will I find a companion who will understand my situation, or will I simple die of loneliness and the frustration of knowing it will not end?

And after all that, I am an Alzheimer’s Spouse, and I am grateful.  I am grateful to our friends who have not abandoned us, I am grateful to the professionals we have sought out and the support and guidance they have given us both; and, although I rail against Him, I am grateful to God for having given me the strength and health (so far) to care for my dearest one. 

I am an Alzheimer’s Spouse; I have issues.  I am tired, wanting, disappointed, angry, bitter, scared, exhausted, depressed and lonely.  I am an Alzheimer’s Spouse, but I still have hope.

 ©Copyright 2011 NcCaregiver

 I was especially moved by the paragraph that states his/her name, gender, or nationality do not matter. It speaks to the universality of the Alzheimer Spouse experience. Please post comments on the message board:  Guest Blog – I am an Alzheimer Spouse

©Copyright 2011 Joan Gershman 
The Alzheimer Spouse LLC
2011 All Rights Reserved
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