I had an interesting conversation the other day that served as yet another reminder that none of us are truly alone, even when nobody else is in the room.
A friend of mine, who is the primary presence in his parent’s life, told me, “I get tired of feeling upset all the time. I get tired of feeling like nobody really understands. I get tired of every mention of my father being viewed as loaded.”
We went on to talk about support groups, family support, friends, and all the other options out there. Neither of us like going to the support groups at the facilities where our parents live because we want at least a little bit of a curtain of emotional privacy separating us from the caregivers and other staff. We both agreed we also tire of hearing, “That’s the nature of the disease,” over and over again from staff.
We both agreed that facilities could better serve their populations and the families by having qualified social workers on staff. It’s one thing to talk to a staff nurse or a director, it’s another thing to speak to a trained counselor who is bound by the rules of confidentiality and is experienced in the issues surrounding emotional communication.
Then, he said something that really struck home. “Nobody gets it. My brothers and sisters don’t get it. My wife doesn’t get it. Everybody acts like they get it but they don’t and I don’t know how to explain it. I carry sadness around all day everyday. I carry a little bit of guilt with me everywhere I go because I’m not always there. Besides staff, I’m all he has. I never get a break even when I’m away from him because I care so much about what he is going through. I want and need to talk about it but nobody wants to hear it as much as I need to say it. I’m sorry. I sound like such a whiner.”
I laughed when he finished because I think many caregivers feel like whiners. I think many caregivers feel like they are sometimes labeled as whiners. I think some people do label caregivers as whiners.
Here are a few things we came up with that may help.
- Try to find the extraordinary in the ordinary because every little bit helps.
- Find several outlets be they people or activities. Support groups, friends, hobbies can all help alleviate stress even if they don’t change the circumstances. Switch it up so nobody gets too much.
- Use what you’ve learned to help others whether you become another caregiver’s ear and shoulder or you blog about it.
- If you really feel like you’re not doing the right thing, or not spending enough time with your loved one, change it. Then see how you feel.
- Treat your loved one the way you want to be treated. When we do this, it sure seems to help alleviate some of the feelings of guilt.
- Avoid alcohol or other drugs. They really only makes things worse in the long run.