JOAN’S WEEKEND BLOG – MARCH 2-4, 2012 – FEELING EXHAUSTED AND GUILTY

It has been a week since I have written a blog. That is unusual, as I generally manage at least two a week, sometimes three, when I am not totally overwhelmed. Although I am overwhelmed and exhausted, those are not the reasons for this week’s ‘bloglessness’.  The simple, honest reason is that no matter what I sit down to write, it comes out as a complaint/whine. My humorous blog of last week was written to avoid the whining.

So many spousal caregivers have it worse than I do. At least my husband is able, haltingly and slowly, but is able, to take care of his own ADL’s. At least I do not have to cook a meal every night, nor clean my house, as my monthly Villa fee includes those services. But the fact remains, for me, perhaps because I am just not hearty enough, what I am doing is wearing me out physically as well as emotionally.

Apparently, I was born a ‘feminist’ long before any bra was ever burned. What this meant was that from as far back as I can remember, regardless of the 1950’s mindset, and what I witnessed all around me in my friends’ homes, I thought marriage should be a “partnership”. I believed that husbands should help wives handle the house and raise the children. I believed that husbands and wives should support each other emotionally. Husbands should help shop for and put away groceries. When husbands were tired, wives should cook and serve them dinner. Conversely, when wives were tired, husbands should wait on them. Maybe that is not the way the world worked in the decade of the 1950’s and into the 60’s, but I saw it work for my parents, who were apparently way ahead of their time.  When I married Sid,  I managed to “show him the light” out of  the “woman wait on man” mentality with which he was brought up. Our partnership worked for us.

Almost 8 years into Alzheimer’s Disease, now complicated by physically debilitating Diabetes, this woman who believed marriage was a “partnership”,  has lost her partner. I am alone, and I am doing it all. I am waiting on my husband, thinking for him, making all of the decisions, suffocating under his total dependence upon me, driving constantly to doctor appointments and tests - $120 in gas in less than 2 weeks.  When I finally sit down at night to watch TV with him in the den, I cannot even ask him to get me a glass of water. The simple act of getting out of his lift chair and trying to walk to the kitchen is painful for him, because of his physical disabilities. If he needs the blinds closed, a drink, a snack, anything, I have to get it. (Although the truth is that sometimes, I do make him get up when I simply cannot move another muscle)

Alzheimer spouses who care for their husbands/wives are different from any other family caregiver. Although all family caregivers are burdened with the overwhelming, unrelenting physical aspects of the job, as well as their own professional and house work to do, they often have their spouses, their partners, to rely on for help. An Alzheimer spouse has lost the most important piece of their life – their best friend and partner – their spouse, with whom they are no longer able to share the burdens, joys, worries, or news.

I am lonely. I am tired. And the truth, however unpleasant and selfish, is that I am sick to death of this job. I hate being a 24/7 nursemaid. I hate driving everywhere. I hate being a caregiver and not a wife.

Yes, I am well aware that I am suffering from a serious case of caregiver burnout. My name is on the list for in-home help when there is money available from the State to pay for it. In the meantime, I must learn to leave everything when Sid is at Day Care, and concentrate only on allowing myself time to do nothing but lounge at the pool or the beach. It is very difficult to do, when so much work beckons me from home, but I either take those few hours for myself, or I am going to end up with a forced rest – in a hospital.

I feel guilty for complaining, especially when I know, as I mentioned in the beginning, that I do not do as much as many of you. I feel guilty that I do not consider this job a “privilege” as many of you do. I feel especially guilty for wishing this whole thing was over so I could have a little bit of a life. But I tell the truth, and that is the truth from this Alzheimer Spouse.

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