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Caregiving: Separation that breaks the heart

It has been two months since my wife, Sheila, was placed in a local long-term care facility and I really had myself convinced this was a good move, and that the pain of making that decision would subside in a short period of time. However, that is not the case.

The act of walking out of her spacious room never gets easier. To say that it is painful is an understatement. I dread that time from the moment I walk in, knowing what I will face when it is time for me to leave. I don't use the term "painful" lightly as it literally hurts. I feel the pain from the moment I get up out of the plain chair that sits beside her hospital bed and by the time I get to the doorway and wave to her and watch her wave back I cannot move myself so I duck out of her sight and lean against the wall in the hallway for a few minutes.

One of the residents who has a room just down the hall has noticed this and watches me as I straighten myself, gathering the torn up pieces that used to be strong and motions for me to visit with her. There are times that I take her up on her offer and sit and talk for a few minutes, but most of the time I have errands or appointments to get to. She tells me that I'm lonely and that in time I will feel better, but I'm not convinced.

Sheila loves to reminisce and laugh about old times, even the hard times, but I keep her informed about current events as well, including my own health issues. I believe that life must go on as normal as possible and by doing this, she is assured that she still an important part of my life; that she's not just somebody I feel obliged to visit, but rather a person that is vital to my well being.

There's not much she can do to be that comfort that she was for so many years and yet she compensates and sometimes amazes me in how she will express that concern for me. Here she is a woman in late-stage Huntington's Disease, bedridden, unable to speak clearly but yet so easily she can reach out and touch my arm and say "Give me a kiss," and when I sat on the bed she scratched my back, knowing this would relax me. It was meant to be intimate and caring.

I love these times with her and yet the guilt is overwhelming each time I visit, which is usually every day.

She is getting happier now that two dogs take turns visiting her a couple of times a week and it is a subject she loves to talk about. She says they're "good dogs" and looks forward to them coming in. The facility is still trying to get a proper wheelchair for her condition and have assured me that it will happen soon so she will be going to different functions throughout the week.

A highlight for her is when our new granddaughter, Sadie visits and on those days it isn't so difficult to leave as I know that she is tired from the excitement and that her day was so bright.

I find that I avoid places we used to go that were special to her. She loved the beach and stopping to get a Ginger ice cream cone or drinking a nice Sauvignon Blanc. I avoid those like the plague. I no longer play the Eagles at home, but I do when I'm with her.

There are some things that I cannot avoid. We always did our shopping together. I don't know if I'm a rarity or not, but I always enjoyed grocery shopping with Sheila. She loved to bake and cook beautiful meals and would often experiment with different foods that we hadn't experienced yet. It is now a chore and one that I don't care for. I find I have no idea what I'm doing; like a part of my brain is gone so for the life of me I have no imagination. That was her, and now that she is not by my side it's like I've lost appendages and even organs. I feel crippled with no way to compensate.

The worst emotion though that presents itself physically, is that sickening, heavy feeling in the bottom of my stomach that never ceases.

I watched a woman cry last night as she poured her heart out from missing her husband and I felt her pain. I tell my story of what I'm feeling as I know I'm not alone. Many of us in the HD community and others are going through the same emotional roller coaster ride. Our circumstances may differ, and no one's ride is the same, but when we listen to each other's stories we nod in a knowing way. We find no comfort in someone else's pain, but we do find some solace in the fact that someone out there truly understands our pain.

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