JOAN’S BLOG – TUESDAY, OCTOBER 1, 2013 – CLIMBING OUT OF THE ABYSS

It has been 7 full weeks since I placed Sid in a nursing home. 7 full weeks since our separation. The night before he left, I remember lying in bed next to him, touching his hand and face, thinking how was it possible that this would be the last night of our lives that we would share the same bed?  How was it possible that after 43 years together, we would be living apart? I could not wrap my mind and heart around such a scenario. As you know from reading my blogs, neither of us has done well with this situation.

For the first two weeks, when I wasn’t visiting him, I was lying in bed crying and sleeping. For the first 5 weeks, he ranted, raved, and screamed at me every time I saw him that I had to get him out of  “this prison”. When he wasn’t screaming at me, he was crying that he could not bear living apart from me. As if placing him did not tear me to pieces emotionally enough, being the recipient of his frustration and anger sent me into an abyss of stress and spiraling depression.

There are many veteran members of this website who have placed their spouses’ into facilities. Many of you reached out to me, telling me that it does get better; that both of us will eventually accept it; that both of us will adjust; that I will make a new single life for myself; I confess that I did not believe you. 

Then one day while visiting Sid, there was an incontinent situation that required a complete change of clothes, washing, drying, and redressing. As I waited in the sunroom for the aide to do what needed to be done, I had an epiphany. I realized that what the aide was being paid to handle was the reason he was there. She was doing what I had done for years, what had almost broken my back and emotional spirit. In that moment, reality and reason overtook emotion, and I knew that he was where he needed to be for both of our sakes, and that I was thankful and grateful that I was not the one in the bathroom doing the dirty work. That is when I started to turn the corner from despair to acceptance.

I still hate that we are living this life of separation. I still hate that Alzheimer’s Disease is taking more of my husband each day. I still grieve and cry for the man that was and the shadow of the man Alzheimer’s Disease has made him. But I now truly understand that there is nothing I can do about it, so I either lie curled up in bed every day or I try to make some sort of life for myself.

However silly and insignificant this may sound to others, it was monumental to me. The first big step I took towards beginning a life of my own was to reclaim my side of the bed. For our entire life together, I slept on the left side of the bed. It just happened that in this house, the master bathroom is 3 steps from my side of the bed. Last year, Sid begged me to change sides, so he could be close to the bathroom, as he was finding it almost impossible to walk from his side, around the bed, to the bathroom, even with the aid of his walker. I relented, changing our nightstand drawers, lamps, and clock radios. I was never comfortable on the new side, but it was the best move for him, as toward the end of his time at home, he was unable to even walk the 3 steps to the bathroom without holding onto the nightstand and wall.

From the day he left the house to move into the Nursing Home until this past weekend, I have continued to sleep on the “wrong” side of the bed. I think I felt that changing back would signal the permanence of his move. Last weekend, I moved everything back to its original position, including me. Although it felt “right”, and I was more comfortable on “my” side of the bed, I still have the uneasy feeling that each step I take for myself is erasing him from my life. Cognitively, I know that if any erasing was done, it was done by Alzheimer’s Disease, but emotionally, I cannot help how I feel.

My next big step will be to change the supplies under the bathroom vanities.  What is called a master bathroom in this villa is so tiny, it is barely large enough for one person. Because of his mobility issues, I gave that bathroom to Sid, and I took the guest bathroom at the other end of the house. All of our toiletries and a variety of other grooming aids are under each vanity. There is no reason for me to use the guest bathroom anymore, but as with the bed sides, I have hesitated changing the supplies. I again felt that I was erasing him.

I have finally come to the conclusion that it makes more sense to remove Sid’s supplies and replace them with mine, than to keep adding a few of mine at a time, which has resulted in a jumble of toiletries falling on the floor every time I open the vanity door.

Now, when I come home from wherever I have been – nursing home, grocery shopping, lunch with a friend – I feel relief when I open the door, that I am beholden to no one. If I am tired, I am able to lie down. If I feel like playing a mindless computer game for hours, there are no caregiving responsibilities to stop me. Whatever I feel like doing or not doing, I know that there will be no incontinent accidents, medication dispensing, dressing/undressing, confusion, endless questions, wheelchair pushing, or anything else that goes with caregiving for me to have to deal with. I do admit that for all of the heartache involved in the separation caused by placement, this liberation from caregiving is a huge positive.

My climb is being taken with slow, baby steps. Little by little, I feel that I am climbing out of the abyss and accepting the challenge of making a life for myself, even if the first steps are as simple as changing bathrooms and the side of the bed.

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