Stroke
Sunday 23 July 2017...the day of the stroke: a day that is painfully engraved in our memories. Together with my husband Joost and our dog Bo I was on holiday with the motorhome and at that moment I was staying on Lake Constance in Germany. The next day we would travel on to Austria.
During breakfast Joost suddenly choked, I look up and see him crookedly sagging in his chair with drooping corners of his mouth. A moment of panic broke out. I was so happy (now that I look back on it) that our friends were there. I immediately recognized the symptoms of a stroke, as I was there when the same thing happened to my father. But at the same time my head was haunted..."That can't be true, Joost is still so young".
Alone in the world
A neighbour on the campsite immediately called the emergency number and in just 10 minutes the MUG-doctor and the ambulance were already there. I experienced it all literally and figuratively in a "rush". With roaring sirens and a hellish speed to the nearby hospital of Ludwighaven. There was a team waiting for us with a stroke-kit, injections, scanner and then the verdict..... "There are too big lumps in the brain that don't dissolve". Joost had to go straight to the hospital in Ravensburg where there is a specialized stroke department. Joost couldn't talk, but the look in his eyes I'll never forget.... "That look of agony".
A few minutes later, the helicopter took off... I couldn't go. There I was.... Only in my shorts and t-shirt. I felt "alone in the world". I called my friends at the campsite and they came to get me.... In the meantime I made some phone calls to the home front. How do you explain that to your family who is so far away at that moment.
That same afternoon we drove to Ravensburg where I was briefly allowed to visit Joost. He was kept asleep. The lumps had been removed. They assured me that they would keep him asleep for another 48 hours.
This gave me the chance to come to Belgium with the dog and the motorhome. Coming home at night, delivering the dog to the neighbours, informing the sickbay and Mutas and then back to Ravensburg by car. We are lucky to have good friends who live near Ravensburg, where I could stay that week. In the meantime, the whole procedure at Mutas was started to arrange the repatriation. Every day they were in contact with me to monitor the situation.
Joost was not allowed to be repatriated by plane because of the pressure in his head. By the end of the week his condition was stable enough to be transported. On Thursday evening an ambulance with nurses left Bruges to drive all night long and then pick up Joost on Friday morning and return to Bruges.
The start of intensive rehabilitation
Joost ended up in the stroke department of St. Luke's - Bruges.
I will never forget our arrival there. Well, he was in Belgium, in safe hands, and then I crashed. I am eternally grateful to the nurses for how they received us.
The first month did not bode well.... In the meantime, I had studied the matter and knew that "time" was the most important factor. Joost stayed there, paralysed. It was almost impossible to swallow. Everything had to be thickened. Coffee with a powder in, water with a powder in .... They say it's smell and tasteless, but tasty is different.
I never forget the day I met one of the neurologists at the bottom of the elevator in the hospital.... He told me that impulses had been established on the legs and that there was still hope. I could cry with happiness.
But I kept on worrying and asking myself questions... "and what about after his hospitalization"? The neurologists indicated that after the hospitalisation there would still be a long time in a rehabilitation centre, and that I didn't have to worry. As long as there was no room available, Joost would be allowed to stay in Bruges. Days turned into weeks, weeks into months.... In small steps we saw an improvement in Joost's situation. Can sit upright, can go to the toilet for once. First with a hoist, and as his legs became more powerful, he could already stand up himself.
Everyone was enthusiastic.... Except Joost....
Our psychologist who supported us was very helpful. We had to be enthusiastic about all those small steps, but in such moments a person only sees those 200 steps that you fell back. From an active man who worked a lot, to someone who needs help for everything. Help that we all want to give him, but still with the fear in the back of my mind of "will I be able to do that"? To what extent will there be progress and above all: how will I get everything practically arranged at home...Nobody could answer this question.
After being admitted to hospital, Joost was allowed to come home every weekend in a rehabilitation centre for several months.
That Friday night was always a pleasure. When we came home our dog jumped with joy on Joost's lap in the wheelchair. In the meantime a hospital bed had been installed in the living room, because it is not yet possible to climb stairs. The applications at the FPS and VAPH were all done, but with these agencies there are long waiting times.
Suicidal thoughts were emerging
Sunday night was always hell... Joost had to go back to the rehabilitation centre.... "The prison, as he called it, was not a pleasant experience for him and gave me a lot of guilt. He didn't want to go back, but what else could I do? The household, the dog, the work, the daily back and forth to the rehabilitation centre in the UZ Gent... At one point I couldn't do it anymore and I had to find professional help myself. I was "up".
But Joost's mind also went deeper and deeper and suicidal thoughts arose. I had to raise the alarm because the medical team didn't even notice it. The only ray of hope that Joost had were some young fellow sufferers in the center, from which a close friendship has developed. To this day I am very grateful to them. Because it is their friendship that has mentally pulled Joost through.
The week before Joost was finally allowed to come home, I had a collision with a nurse from the rehabilitation centre on Friday evening. I was a quarter of an hour early and was not allowed to take Joost with me. The bomb then burst at my place and I called in the departmental doctor and asked for Joost's discharge papers. It wouldn't arrive that week.
From caring back to husband
But then... "back home". A challenge! I always hear from young mothers who come home with their first baby and have the fear that they will do everything right. That's the same feeling I had. I wanted to do everything and do everything right. My environment told me that I had to hand things over. That I had to have nurses come to wash Joost instead of doing it myself. But that felt like "failure" to me. To have it done by someone else, because I can't do it well enough myself. Our psychologist told me that this was absolutely not the case and that I also had to think about myself. As said, as done.
Nursing at home was addressed for the daily care, via service cheques we took someone into our house to do the housework, and so, step by step, I became a husband instead of a nurse.
In the meantime, a lot of adaptation work has been carried out at home. Placing a necessary stairlift, brackets in the bathroom, an adapted kitchen... In the meantime, Joost also had an electric mobility scooter with which he could move around.
From here on, we'll move on with our lives.
Summer 2018... A year after Joost's stroke. Joost had one wish: "he wanted to go back to the place where he had his stroke".
I have to be honest, I had my doubts about the choice of destination, but we did it. Arriving at the same campsite, we were on the same spot as the year before. I was having a hard time emotionally. But for Joost it was a new start. He needed that place and that moment to give everything a place.
"This is where our journey ended last year, from here we go back to our lives" !
And now
So slowly our lives took shape again. Joost still continues to go to rehabilitation outpatient in Bruges and a few times a week with our local physiotherapist. He also gave us the tip to contact "So Yes". After a year of not being able to wear "normal" clothing because of the half-sided paralysis, Joost was more than fed up with those training pants.
Going to a clothing shop in a fitting room is not easy. We were so happy with the personal service of the team "So Yes". Joost was able to fit at home in all ease and returned to the track with normal comfortable clothes.
At the moment we are planning our next trip again. In recent years we have learned not to look back too much. We no longer focus on "what is no longer possible", but we enjoy more and more of the things we can still do. Enjoying the little things and learning to let go of things.
"Live and enjoy", yes.... Even after a stroke it's still possible!
Joost, Dieter and our dog Bo
Want to stay up to date with our latest developments? Subscribe to our newsletter.
