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.

Interested in more discussions like this? Go to the Caregivers Support Group.

bradmm | @bradmm | Mar 26, 2019

Susan2018, I was just venting. 🙂 My wife FEELS pretty good most of the time despite years of first chemo and now weekly, sometimes 2X/week, procrit shots to try to keep her blood count up. The only wearing part is that it's always on her mind and, thus, always being talked about. I always tell her that nobody knows when the end will come, it could happen to me tomorrow, so let's focus more on the good part of today! It can always get worse. I can't judge her for thinking that way, I haven't walked a mile in her moccasins, I just try to promote a more positive outlook. Thanks!

rmftucker | @rmftucker | Mar 26, 2019

Those of us experiencing long term caregiving all have those times when we can hardly get out of bed or visit again. My husband has been in care center for going on two years. He was always a very active friendly person and his personality has totally changed. He is so agitated, angry, etc, so much of the time, but the people at the care center are so patient and caring toward him, that it helps me to handle the stress when I visit. They have been on stringent visiting for about 3 weeks and I haven't been able to visit only a few times. His 89th birthday was March 17, and I did go but we had to cancel our plans for cake and ice cream, and that was hard. I did take a decorated cupcake for him and he enjoyed it but I don't think it registered why I had done that. He sleeps most of the time, and I try to visit 2 hours every other day as it is 42 miles one way.

I don't visit him at meal time anymore as he becomes so agitated if any man looks at me, and I can't handle that. He was never that way before. I just have to keep saying it is the disease and not him. He needs total care now so there is no way I could care for him at home. My son and daughter who live close help me to stay in my own home, but it is getting harder so that is another hurdle I will have to face in the near future. Downsizing 60+ years of reminders of memories is hard. But I am determined to try to sort and give away things, so my family doesn't need to do that. I have helped empty apartments of 2 aunts, my mother-in-law, and my parents, and I don't want to leave that to my children.

susan2018 | @susan2018 | Mar 26, 2019

@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.