Jan
13
I haven’t posted a blog for more than six weeks.
Not sure how committed I am to this blog any more. I often have a comment, an anecdote, some musings, that I think I will put into a blog, but then wonder if it is too personal and too public. This isn’t just my story, it is primarily Don’s story, and our relationship. Have I the right to make so much of our lives so public? I am increasingly uncomfortable with it.
Also I think Don is starting to deteriorate, and if that’s the case then it doesn’t seem fair for me to be documenting the sad details for all and sundry.
Hopefully that is not the case and we are just going through the normal ups and downs.
Hi Barb
My husband also has a progressive neurological condition originally though to be MS but after four years still undiagnosed. Symptoms are the same.
I know it is Don’s story you are telling, but it is also your story. It is difficult coming to terms with being a carer. We are selling our home this year to build one that is wheelchair friendly, I’m not sure how long my husband will be able to continue working so the future looks a bit scarey financially. My husband has a great attitude and we have a beautiful family.
I have been reading your blog for about three years and there are probably many more like me out there who relate to your situation. Thank you for your honesty and what you have shared. It helps to know my feelings and emotions are normal. If you do decide to stop your blog, I wish you and your husband well.
Barb, I believe I understand and whatever you decide please know your blog of yours and Don’s story of living with MS has mattered to me. I find myself often reevaluating the decision to share. … I do agree with Carolyn’s comment that “it is also your story”.
Caregivingly Yours, Patrick
I am certain others want to hear your story. I searched for someone who understood what it was like being a caregiver and a wife, and of course, avoiding being his mother, when I was beyond frustration. Once things settle down, it would be lovely to read how things are in your journey. I have started a blog myself this month. Not sure how things will go, just playing it by my heart and hoping it is as effective as therapy.
Hi Barb, I have am also a caregiver for my sister who has advanced MS and lives in a care facility. I always read your blog with interest and have appreciated you sharing your trials, tribulations, joy and sadness. Your Blog has often kept me going as its comforting to know there are others who are experiencing similar issues and feelings. I wish you both the very best and hope that we can continue to share the journey with you.
Sharon, that is just so encouraging, you have no idea. I am humbled to learn that others do read my blog and get something out of it. Guess I’ll keep blogging after all …
Thanks Patrick, I have to say I really like to read your blog, as there is so much in common between us, and you often motivate me when things start to get me down.
Thanks so much for that comment Carolyn. Yes, the future is scary with MS, and I find myself unable to even contemplate what might happen in the future. But, of course one has to look ahead to some extent because there are decisions to make – big decisions – like your housing situation. It happened with us too. We moved out of our split-level house with its 10 steps to the front door, and had to do it at such short notice that we decided to rent instead. It’s a good house and I’m still in it, even though Don is not.
Wow, DGardner, I just read your blog and it is amazing. We have a lot in common as to how the MS first revealed itself (falls etc) and some other things that have happened with your David really resonate. But you have been through so much more than just the MS (did I really say, “JUST” the MS??) all at about the same time, bereavement, medical complications. And with a young family. May God give you strength through these hard times.