Even though Mike’s wife has a strong family, they did not remain in contact when Judy was diagnosed with MS.
Transcript
When you’re diagnosed with MS, one of the first things they tell you in some of the meetings is that you’ll find out who your friends are real fast, because it’s such a long term, and then they start reading about it. And you’ll find out who your true family is real fast. Oh yeah, right. Judy has a very strong family. She comes from a family of nine and I come from a family of six, and I can’t say they’re like scalded rats running off a ship, but it took a time— I was very surprised over one in particular, and some of the other ones just basically don’t have a lot to do with her. And she said, “I don’t need this in my life. I’ve got my family. I’ve got my own friends, and that’s it. If they don’t want to deal with me, that’s fine.”
Now, we were to her mother’s 95th birthday this July—not July, May—and the family was all together; it was no problems or anything, but they don’t communicate with her. And that’s what I find really hard to take. But I feel sorry for her because they were a close family. And that’s not uncommon with the disease of MS because of all the ramifications. I mean, there’s some people that are dead within a year, and other people who live for 25 years and you’d never know they have MS.
And when they… and I guess it’s the way it goes with Alzheimer’s; you start with dementia. Most people start sliding away as they’re not comfortable with it. I am certainly not comfortable with it. I mean, I’ve dealt with it in my mother, and I had to because that was it—both my sister and I. And so, I got into that role and worked with it. I’m still a little antsy around people that have dementia problems. I can’t say that I run from them, but it’s difficult at times when I see family that tend to walk away.
But, and to be fair too, you don’t know what’s going on in their mind. How are they accepting this? Why are they doing what they’re doing? Are they afraid that they might get it because it does run in families? They don’t find that, but when you lose a brother to it, and then your sister gets it, and your mother possibly might have had it as part of the—I mean if you saw my mother walk in here today on her own, you wouldn’t know there was anything wrong with her. So, is that sitting in the back of their mind? Do they put it away; they don’t want to deal with it? And outside of that, family wise, that’s basically it. Other than our children—we have support from them—but outside of that, not a whole lot of support from others.
More from: Mike
More content
- 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.