JOAN’S BLOG – WEDNESDAY, JULY 31, 2013 – OPPOSING EMOTIONS AS PLACEMENT NEARS

Here I sit, struggling to move a body that is being strangled by miles of Medicaid red tape.  It has encircled my arms, legs, feet, and hands. Each time I think that a little pinkie is wiggling its way out, the strands of tape pull tighter around a different body part. I have been fighting the system for 6 months, desperately trying to get my husband, debilitated by Alzheimer’s Disease, bone on bone arthritis, and Diabetic neuropathy, admitted to a nursing home, where his physical and mental needs can be met by a rotating staff of rested professionals, rather than one burned out, physically, mentally and emotionally exhausted Alzheimer Spouse, aka – ME.

My husband’s Primary Care Doctor has wholeheartedly agreed that he needs nursing home placement, and has filled out the forms attesting to that fact. HOWEVER, it took innumerable visits to facilities, countless phone calls, as well as assessments by nurses from Medicaid and nursing home facilities to get to the point where I am now working with a facility that has a bed for him, and is willing to take him when the Medicaid red tape is untangled. Despite doctor’s orders, Medicaid is fighting nursing home placement to the end. So I sit and wait, as my husband’s condition deteriorates daily.

The subject of this blog, however, is NOT the nightmare called Medicaid. It is the nightmare of the struggling opposing emotions of the Alzheimer Spouse as she approaches the day of  permanently placing her husband of 43 years into a nursing home.

Counting from the year we knew something was drastically wrong with Sid, I have been taking care of him for 10 years. 10 years ago, he was walking, driving, working, and 75% of the time, he was still the husband I had known and loved for 37 years. Since then, we have been through an incorrect diagnosis and medication, appropriate diagnosis (Alzheimer’s Disease) and medication, personality changes, rages, verbal abuse, continued loss of cognition, comprehension, judgment, reasoning, awareness, short and long term memory, and debilitating physical decline. He is now 95% wheelchair bound, unable to dress or undress without maximum assistance. He cannot shower himself at all. He is twice my size, and I have crippling chronic back pain from wheelchair lifting, pushing, and pulling. If I did not have a nightly aide to clean, undress, change, and put him to bed, I cannot imagine how either of us would manage.

Given the situation I have described, I had no choice but to make the decision to place him. I will lose my mind, my mobility, and my life, if I am not permanently relieved of this caregiving. I personally have watched other spouses in my position, and could not understand why they hesitated to place their husbands. The need was obvious to anyone with eyes. Why are they vacillating with this decision, I used to wonder. Now I know.

As much as I want and need a full time staff to care for him, and he desperately needs full time care in a professional facility, the idea of leaving him there without me by his side, as I have been for 43 years, is tearing me to shreds. I am sick to my stomach; I am shaking and nervous; I am currently too numb to feel the full effect of the heartbreak. I dread taking him and seeing the hurt and anger on his face when he realizes we are going to be living apart for the first time in 4 decades.

Since I have help at night, mornings are the toughest. It can take over 2 hours to get him changed, cleaned, dressed, and fed. And that is if there are no incontinence accidents. Then the process starts all over again. It is during these times that I tell myself he has to go. I cannot keep this up.

Then there is the quiet in the middle of the night, as he sleeps soundly next to me. I reach over to touch him; to feel his presence; to remember the intimacy and closeness we have shared; to remember his once strong hands rubbing the tension out of my shoulders. I think to myself – How can it be that our life together is going to end with him in a nursing home, and me in a king sized, cold, empty bed?

But at 5 AM, he wakes me up to tell me that he did not make it to the bathroom in time, and as my back is breaking from the changing and cleaning, I tell myself once again – He has to go. I cannot keep this up.

And so it goes. Back and forth. The heartbreak of an Alzheimer Spouse as she awaits imminent placement of her husband into a nursing home.

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