Long-term caregiving: need a place to vent

Posted by bradmm @bradmm, Mar 12, 2019

So I’m copying an email from the Blood Cancer group.

I guess on one level, having to cope with long term cancer is better than the alternative. 🙂 However, my wife was diagnosed with CLL in 2006, had chemo, remission 2010, and started Procrit shots for MDS, caused by the chemo, in 2013. I have played cheerleader since the beginning and am constantly trying to point out the good side of things but we’re both wearing down. She was getting Procrit shots stating in 2013 every three weeks but her HGB has gotten as low as 6.2 as of last week so now she’s having weekly injections. This is dominating our lives and, whereas she used to be down the day of injection and a couple of days following, now she’s getting down several days before and after meaning it’s near constant. I have gotten her to do therapy with a psych but that was not helpful. Her other main issue is insomnia so that can have a big impact on her state of mind as well and, in reality, she has her bright moments but all this is always right under the surface. We both retired last year so we’re both at home together a lot. Although we have gotten involved with some stuff outside of the home, it doesn’t negate the underlying stress. Our kids/grandkids are not close by. I feel that my role in just holding things together has grown larger since she’s retired and doesn’t have the constant distraction to change her focus. I joined this forum, in part, just to have a place to vent so thanks for that.

@rmftucker You have a heavy load. You are so thoughtful thinking of your family and wanting to do as much as you can to downsize. I have been left to deal with a five generation farmstead. It is so hard, I get why previous generations didn’t do it. But I’m going to get this done if it kills me. I worked in a care facility and the situation as you describe it is often the case. That is a long trek for you to make every other day to visit. Please give yourself permission to look after yourself too.

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