As previously mentioned, I am a caregiver for my wife, who has been dealing with Stage IV Lung Cancer for 6 years. They originally gave her 18 months to live. She has had her brain zapped 30 times in the past six years (stereotactic and gamma knife), had one lung removed 6 years ago, had a course of radiation to her chest 3 years ago, had major intravenous chemo twice, had brain surgery a year ago, was on the daily chemo pill Tarceva for two years and has recently switched to a new daily chemo pill, Tagrisso. That is 6 years of poisoning and invasive surgery. She has also been dealing with very painful muscle spasms on a daily basis, which 3 muscle specialists have yet to diagnose or treat properly, and now has kidney stones that cause grief when they decide to move.
When we first reestablished our friendship, 10 years ago, her wants were to finally have some true romance in her life and see her kids happy. Her son at the time was still living at home in his 20’s and her daughter was still living with an ex-partner and had just turned 30. Four years ago I brought her that romance. Since then her son, now 36, finally married the woman he had been dating for 5 years and recently produced her first grandchild. Her daughter, now 40, has settled in with a new partner and they are very happy together. Check, check, and check.
Now I watch her struggle on a daily basis with this body of hers. Thankfully, the last two rounds of brain MRIs have shown things are quiet, as have the petscans. But the kidney stones of the past 4 months have destroyed the breather we used to get between scans. Every day I see her doubled-over in pain whenever one of those muscle spasms occur, in whatever part of her body they choose to show up in, without rhyme or reason. And her level of fatigue from all the radiation just keeps growing. We used to take walks around the park together, she can’t even make it half way round the park anymore.
I grieve for what might have been. We are so good together when she is present, when she is not distracted by some part of her body. Those moments show me what we could have shared over a lifetime that we are not going to have together. I feel robbed. I miss her terribly between those moments. Yet I know I would miss her even more should she not be here anymore.
And somewhere along the way, I have lost myself. I have spent the past two years since we have been living together giving everything to her. All my decisions have been based on her needs. I stay in my current job because it has great insurance for her and I do not have the energy to find a different job. I am mentally and emotionally exhausted all the time. I put on weight that I am not motivated to take off even though I have never weighed this much in my life and feel very uncomfortable. I simply can’t seem to find the time to just work out for 5 minutes 3 times a week in my own gym downstairs. No excuses.
I realize that I took it upon myself to give her a reason to keep on living by bringing her that romance. Of course it also brought me that romance as well. But that decision is slowly doing me in. And that will not help her. I realize that she needs to find her own reason to live. I cannot do that for her. It is not good for either of us. I have to step back and have some Me time or their won’t be any Me to help take care of her.
She still drives, is still mentally all here. She does the shopping and coordinates all the people who help maintain our home, in between coordinating all of her doctor appointments. I know there are other caregivers who have totally disabled spouses. But it is all relative. I work 40 hours a week and drive 40 minutes each way every day to get there and back. Lots of caregivers are retired. She is retired on disability.
She moved 3 hours north of where she lived her whole life just to be with me. And she is home alone all day with her thoughts while I am at work. Now she is going back down there once a month to visit with her grandchild and family and friends. It has created a balance for her that cheers her up. She is finding her own reasons to live. It is not my job. I love her more than anyone ever. I am here, in it, with her, every single day. She is not alone. But there are days when I feel totally alone.