We were running late for a Christmas concert in which a friend of ours was performing. My wife Mary Elizabeth, 10-year old daugher Charlotte, and I were in London for a week – (part work and part vacation) – heading for a southbound DLR train headed to Island Gardens, on the Isle of Dogs.
As we reached the top of the stairs, Mary Elizabeth complained of being dizzy and off balance. She was keeling over to the left and wasn’t able to stand upright. I noticed that one of her eyes was crossed as well. We boarded the train, thinking that it was a passing spell and already a little late for the concert. When we got off at our stop, she was still off-balance and her eye was still crossed. Other than that, she seemed fine – cogent and speaking perfectly well. Because her father died from a stroke at 48 (her age at the time) she was hyper-sensitive about that possibility. Yet, she was able to raise both her arms up and her beautiful smile was perfectly symmetrical.
I was worried however and we made our way to the ticket office and asked for help. They brought us inside, gave Mary Elizabeth a seat and called for an ambulance, which arrived shortly thereafter. As the EMTs got her vitals, she lay calmly on the gurney, with me next to her and Charlotte at her head. She was chatty and charming as usual as we headed, sirens blaring, towards Whitechapel, and the Royal London Hospital.
They admitted her to A&E (Accident and Emergency – the equivalent of the ER) and as she was headed in the EMT said, “Sorry Love, it’s a bit of a mess in here!” to which Mary Elizabeth responded, “That’s ok, I can’t really see it anyway!”
About 20 minutes later, a young doctor came out and told us how charming and chatty my wife was and that they were monitoring the situation. Ten minutes later, people started running around, talking about an emergency CT scan. The doctor reappeared and told us that while they were chatting, Mary Elizabeth lost consciousness and stopped breathing. They intubated her and sent for the CT scan to see what was happening. They moved us into one of the little private family rooms.
Shortly thereafter the doctor came back with several other doctors and nurses and crowded into the room with me and Charlotte. He was crying and his voice was cracking. The news was not good. Mary Elizabeth had suffered a massive bleed in her brain stem and was critically ill. They didn’t expect her to survive the night and advised us to call home, and get ready to make some very difficult decisions. I was stunned and uncomprehending, but Charlotte understood immediately and began sobbing. It was our darkest hour.
That night – December 5, 2009 – was the beginning of an incredible journey, which is still unfolding. Mary Elizabeth did not die that night, but remained in a coma in London for another 2 months and wouldn’t be able to return home until mid-March to New York, where she would be hospitalized for another 5 weeks.
A vice president at a Wall Street firm, Mary Elizabeth at first didn’t know how old her children were, what year it was or where she was. In the 18 months since the stroke, she’s made a significant recovery, but is still incapacitated in many ways, and continues to work hard to cope with changes to her vision, speech, ability to walk and other more subtle changes.
I continue to work full-time on Wall Street, and care for her in the evenings and on weekends – in addition to our three children, now aged 12, 10 and 10 (that’s right – twins!).
People keep telling me how grateful I should be that she has survived and is still with us – and I am profoundly and deeply glad that she is here. But it is hard to feel grateful and happy about what has happened to us.
I’ve kept up a blog since the very beginning and initially it was very helpful to our friends and family, 3,000 miles away in the States to keep apprised of her progress. Now the blog serves more as a platform for me to explore issues around her recovery, and to share my reflections and perceptions on being a caregiver.
I’ve attended several caregiver support groups locally, but have yet to find anybody in my demographic – late 40s (well, alright, 50) and caring for a profoundly disabled spouse, while working and supporting three school-aged children (and a mother-in-law).
I’m looking forward to hearing from others on this site and welcome your visits and comments to my blog at www.getbettermaryelizabeth.wordpress.com
Many thanks.
Thanks for your kind, wise words. They really resonate with me. I’m glad that our mutual friend Pam B suggested I visit this site – I’ve bookmarked it and will return often. It is the first time I’ve thought about caregiving in the context of PTSD – very helpful indeed! Thank you for creating this site.
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Hi Scott,
I have just read your post M.E. and Me, you are a wonderful caregiver, husband, father, and bottle washer. Your journey has been a tough one, and as you said is a new way of life.
As caregiver to my 91 year old mom and physically disabled husband, and part time caregiver to my mentally disabled nephew, working full time is the hardest role I have at the moment, as my duties change from day to day, with their needs.
“But it is hard to feel grateful and happy about what has happened to us.”
Boy, this line really hit home to me, many days I am, as Jean stated, moody, depressed, talk to much, don’t talk at all, well you get the picture. I feel so grateful to be given this opportunity to “talk” with others in similar situations. So, welcome in Scott, please stop back, when time allows. I hope you start to make time for yourself, but I understand how hard that is to do and fit into a 24 hour day, if only there were 8 days of the week!
All in all, I have come to accept my role, grateful for it, NOT… but many days, and today I hope will be one, able to cope, and talk (hopefully not too much)
Thank you for taking the time to share your story, and photo of your beautiful family.
~Char
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Scott, thank you so much for sharing your story with us. What a beautiful family you have. Kudos for searching for a support group – it’s a lousy demographic to be in, right? In many caregiver’s cases it’s more of a “demongraphic”. I read your blog, it’s wonderful. You’re such a good writer, and, as usual, it’s comforting to see others expressing many of the same feelings we ourselves have felt. In it, you mention the feeling of standing (and falling down) on shifting sands, and also the “super power” of being invisible to your friends. You’re very understanding about your friends, as a caregiver has to be, if they want to keep those friends. Because caregivers are not the most desirable of friends, are we?
We’re too tired for long, deep conversations; we lead an insular life so the conversations we do have tend revolve around the same things all the time; we have a lot going on (that non-caregivers can’t possibly be aware of) all the time, so socializing usually has to be on our schedule; we’re emotionally tippy (standing on shifting sands all the time will do that to you) so we can be unexpectedly teary or cranky, or both; and we have so much drama in our lives, our friend’s troubles pale in comparison so they don’t really feel they can dump on us. On top of all that, we are very vulnerable, which can make us appear needy, and to try to compensate for “being a downer”, we sometimes overdo it and end up saying things that are completely inappropriate and out of character for us. We’re the “What About Bob’s” of friends, really, to all but the most understanding of souls or those who have been there themselves.
Thank goodness for the special friends who “see” us through the tough times, and for those lovely “whispered conversations” with sympathetic strangers who recognize a fellow struggling caregiver. We’re not all that hard to spot – we’re the ones with sand on the back of our pants.
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