It is not easy for Mike to speak with his wife about his needs; he doesn’t want to make her feel guilty.
I think she wants more time at this time to do more things on her own, than with my being here. That’s my thoughts. It’s terrible to say. And again, caregivers don’t seem to talk that much back and forth with [the] person that they’re taking care of about those types of things, because you don’t want to insult them, you don’t make them feel bad, you don’t want them to feel guilty because you’re not doing something. But if you tell them, then you’re going to feel guilty because you make them feel guilty. It becomes this cycle, and that’s why I say it just takes time to roll with it. A lot of that stuff is now getting past me. I’m able to say, “Well, I’m going to go golf.” And I practiced today. I went down and had golf lessons today. I come through the door, “how was the golf lesson did you do okay?” I mean, Judy’s right up on that.
What I’m looking at, depending on how this disease goes with my wife, I know at some point—another five, hopefully five years from now, or even longer, and maybe [it] never happens—I’m going to have to spend more time here, because […] she’s still walking, but with difficulty and pretty soon—I shouldn’t say pretty soon, but it will be eventually—she’ll need a wheelchair to get from here to the bedroom. I know that’s coming, so I try to get as much time as I can away, but I can’t have too much time away either. But I do know that now and she knows that too—that that will eventually come. So, we’ll have to handle that when the time comes and I am not looking forward to that, because I need my time by myself. Every caregiver does.
More from: Mike
- Navigating the system – MikeAt some point you have to ruffle feathers. Mike went right back to the emergency department with his wife after she was discharged.
- Interaction with professionals – MikeMike describes what he appreciates about his interaction with the specialist.
- Health system issues – MikeMike would appreciate an information service for caregivers.
- Hospitals and facilities – MikeWhen Mike’s wife was discharged, he sent her straight back to the emergency as he felt she was too sick to come home.
- Trying to find the right balance – MikeIt is not easy for Mike to speak with his wife about his needs; he doesn’t want to make her feel guilty.
- Legal issues – MikeMike’s wife started a journal and wrote about every meeting and person she dealt with. The journal was very useful later when the insurance company came to assess her situation.
- Personal growth and transformation – MikeWhen things aren’t being done correctly, Mike says you have the right to stand up and say “No, we have to find another way.”
- Support from family and friends – MikeEven though Mike’s wife has a strong family, they did not remain in contact when Judy was diagnosed with MS.
- What is it like to be a caregiver? – MikeMike is always looking to see what is going on around him to keep his wife safe.