Aug 10, 2020 Latest post:
Oct 15, 2020
Welcome everyone, thanks for visiting. We thought it was a good idea for people to have more info and updates on Sue and Bob lately so here we are. As many of you know, this year has been pretty awful for our family. Last November Papa had a pretty significant stroke, air lifted to the Brigham where he stayed for about a week, then transferred to Spaulding rehab, then to 2 more rehab facilities and now he is at home with 24 hour care. Physically he is okay, however his speech and cognition in some areas have been significantly hindered. Almost 9 months later with physical and speech therapists, his speech and communication has plateaued and unfortunately as the doctors told us after our 6 month visit, it looks like he is where he will be. You can understand him if you spend time with him enough, take classes in "Papa-lingo" but he is frustrated beyond belief, often depressed that he will not be able to return to his normal routine and been faced with an epidemic and the limitations this brings as well as having to care for and worry about Sue....which leads us to the other half of double trouble....
Many of you know that 6 weeks into Papa's stroke recovery, Sue had emergency open heart surgery to repair a seemingly sudden aneurysm in her aorta that was thought to be caused by an unknown systemic rheumatoid disease that caused inflammation around her heart (in many words or less). Led by an incredible team at the Brigham and an excellent surgeon, her 3 week stay led to a successful surgery for heart repair. However unfortunately during the surgery she was the 1% that suffered a stroke that affected many small parts of her brain.
Post surgery was the worst time of our lives being that she did not wake up from surgery for 2 weeks, remained in ICU and close to the end of the third week only did she start to open her eyes. Sparing you all medical meetings, communications, calls, bedside urges for her to open her eyes and endless sleepless nights, Sue was transferred to Spaulding in Cambridge and then to Mayflower Skilled Nursing Facility where she could be with Bob at the time to learn to talk, swallow, eat, and pretty much regain all major basic function back again.
Then...a global epidemic hit. Which....as you all know sent the world and us into a panic. We brought Papa home with 24 hour care which left Sue in isolation for about a month. It became clear fast that we needed to get her home for her safety as well as her mental status and ours.
So...for the past 3-ish months, the both of them have been home with round the clock 24 hour care that is very complicated and hard and also the best thing for them both. None of it is easy and managing care that is good and trustworthy is half the battle, let alone trying to keep them both safe in a very tricky unknown time as well as dealing with all of the ups and downs, good days, terrible days and great days in between.
Since Papa has been home he has been sent to the ER by 911 calls for various issues, drops in blood pressure mainly due to him insisting on walking on really hot days. He hates the fact that he has aides and wants independence without realizing he's not safe otherwise. He certainly is having a harder time than Sue, who is steadily slowly progressing....walking, getting outside in her wheelchair and walker and although confused and often not herself, she is slowly returning to her old self.
Neither will ever be the same and the future of what is ahead will be far from easy.
But we're grateful for the support, the help when it is safe to give and for all prayers and love. We are hoping to set up a visiting schedule while the warmer months are still here. If you do plan to visit, please let us know as the time of day and schedule is critical to maintain for them both. Thanks very much, Love Justin and Lindsey