I've been married for over 40 years. For the past 15 years I've been my wife's caregiver. She has advanced multiple sclerosis and her symptoms keep getting worse, gradually taking away more and more of her already limited independence. As her disease has progressed, I've made home and lifestyle adaptations to make it possible and as pleasant as possible for my wife to remain at home. This runs the gamut from home accessibility modifications, to arranging for visitors who spend time with her, and work with her on art, writing and cooking projects.
While we're not there yet, unless her disease stops advancing, I can foresee a time in the not too distant future when it will no longer be feasible for her to remain at the house. She'll need to live somewhere where she has 24 hour care under the supervision of professionals.
Because 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 from home to an institution on my own. My worries are that I'll either be too late, and something horrible happens to her while she’s at home, or I'll be too early, and she'll ending up living in a nursing home or some other institutional setting for a long time when she could have been OK at home. So I’m reaching out to this community of care givers, to ask how you’ve made those kinds of decisions. Have there been professionals who’ve helped you in this process? Have you receive this kind of guidance from doctors, social workers or some other kind of professional or specialist?
Any suggestions you have will be greatly appreciated!
Not a Chicken Souper
Hi Not a Chicken Souper, you sound like a wonderful partner to your wife! Is your wife still cognitively aware? Is she able to have this conversation with you? I think a lot of times, as caregivers, we tend to want to shoulder everything, thinking we have to be the ones to make all the decisions and keep our loved ones safe, so much so that we forget that many of these conversations are to be had with our loved one themselves. Has she also filled out an advanced care directive yet? If not, I highly suggest doing that as soon as possible so that all of her wishes are made explicitly clear. I hope that helps. When my mother moved my grandparents to a senior living condo, he basically had no choice. He totaled his car when his heart stopped while driving, badly injuring himself and my grandmother. So my mother quickly packed up the entire house and moved them to the condo. It was quite a traumatic experience for everyone involved, so I always advocate for these discussions to be had when it's still possible. I hope that helps. Another resource you can try is to call senior care or palliative care referral consultant (something like A Place for Mom - you can also look for individuals online who work in your area) to discuss the best options available in your price range that also fit your wife's needs. They can be a huge source of comfort too. Hope that helps, and please let me know if there's anything else I can answer.