JOAN’S BLOG – MON/TUE, JULY 19/20, 2010 – GUILT, GUILT, GUILT - A Spousal Caregiver's Guilt

This blog is not about the usual – “I could be a better caregiver; I feel guilty because I lost my temper” type of guilt. It tackles deeper guilt issues that are more relevant to spousal rather than other type caregivers.

It came about because I had a truly honest conversation with a relative whose husband had died a few years ago from Alzheimer’s disease. AD spousal caregivers share many common emotions, but not every single one.  Maybe this does not apply to you. But for those to whom it does, take heart in the knowledge that you are not alone.

She spoke the unspeakable:

She felt guilty because………… she was unable to love her husband as she used to love him. She felt no sexual attraction for him. Alzheimer’s Disease had taken away the essence, the personality, the man she fell in love with. She loved the memories; she cared for and loved him as a child, but the husband/wife love was gone.

She felt guilty because………she was repulsed by having to change the diapers of a grown man, husband or not, and waking up in a bed soaked in urine. Not having the money to hire professional help, she moved her husband to the second bedroom, so, although she had to clean the mess every morning, she did not have to sleep in it.

She felt guilty because…………..after the first 5 years, she felt trapped, and wanted out of the caregiving role. She kept her husband home another 3 years, out of guilt, and then placed him in a Medicaid approved nursing home, which made her feel even more guilty.

She felt guilty because…………….she could not live up to the sacrifices of the other wives and husbands in her support group. They changed the diapers, endured the verbal and sometimes physical abuse, showered, shaved, dressed, spoon fed their spouses with little or no complaints other than tiredness.

She felt guilty because…………….she did not see caregiving as a blessing. She hated it. She resented having spent what ended up being 10 years of her life placing her own emotional, physical, mental, and health needs on the back burner. 

She felt guilty because……………when he died, she felt free, not grief-stricken. She had been through all the emotions of shock, loss, loneliness, grief. She had been through all of that during his disease. Now she was ready to live a new life – she wanted to be free to go where she wanted, when she wanted, with whom she wanted. She wanted to run and dance in the rain, sleep, rest, and take care of one person – herself. And for that, she felt guilty.

I sat in shock, listening to all of this. The shock was not in what she said, but that she verbalized it so clearly; that she STILL FELT THE GUILT; and some, although not all, of what she said, applied to me.

We have discussed guilt at various times on this website, and I have written two blogs about it, but I had never heard all of it expressed quite so succinctly by one person. It made me think – if we do the best we can for our spouses, whether we enjoy the caregiving role or not, whether we are cut out for it or not, but we still DO THE BEST WE ARE ABLE for our spouses, should we feel guilty about any of the above as she did and still does?

MESSAGE BOARD TOPIC: Guilt, Guilt, Guilt - Spousal Caregiver Guilt   
 

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The Alzheimer Spouse LLC
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