By mario lobo
I’ve been caring for my wife at home for many years, during which time her MS has progressed and her level of disability, both physical and cognitive, has increased. She was diagnosed in 1985, but managed to live a relatively normal, independent life until around the year 2000. Since then it’s been a struggle and I do my best to make it all work. She now gets around only using a wheelchair and struggles with making transfers independently and has falls from time to time, none of which have resulted in any injuries worse than bruises. I’ve made many safety and accessibility modifications to the house. I work full time. We have in-house help and/or visitors for about 8 hours a day.
Yet, I know, that as her disability worsens, there will come a point when her living at home will no longer be a safe or feasible option. The problem is, as the old saying goes, you can’t see the forest through the trees. I’m so close to the situation, and it evolves and deteriorates so gradually, I don’t know if I’m really equipped to make the decision to change her living situation on my own. Will I be too late, and something horrible happens to her while she’s at home? Will I be too early, and will she ending up living in a nursing home for a long time when she could have been perfectly OK at home?
So I’m reaching out to you all, the community of care givers, as to how you’ve made those kinds of decisions. Have there been professionals who’ve helped you in this process? Neurologists, social workers, some other kind of professional or specialist?
Please share your thoughts about this.