PEOPLE WHO INSPIRE
Living with ALS
During the holidays we were welcomed by the family Destoop and Donnay.
We talked about challenges and problems a family can encounter when one of them is an ALS patient.
text & photo: Aldijana Cosic
When Wim Destoop (46) from Duisburg and his wife Natacha Donnay came out of the hospital about a year and a half ago, a sense of anger prevailed. Wim had received the diagnosis of ALS and now their world was upside down.
First Wim and Natacha were secondary school sweethearts, then they went to the university together and ultimately they both got a job at the head office of the KBC bank in Leuven. A team. In every day life they always speak about ‘us’. In the meantime they aim at a perfect life with their three daughters.
Suddenly, out of the blue, their future vision had to be altered entirely -and irrevocably so. First the parents of Lise (16), Britt (14) and Xanthe (11) had to explain to their daughters that there was this desease. Their dad … For the children this was really difficult, but in fact they managed to handle things rather well, each of them in her own way.
‘You know, 16 year old, Lise .. she knows alright, what with internet, Doctor Google and stuff. Xanthe, eleven … still a kid. You just have to be plain in what you say. Don’t say that daddy is ill, but that maybe he will die: you just have to use those words. Because … we fight and continue to do so, but at the same time you have to be realistic.’ (Natacha)
While continuing to struggle on an emotional level every day tasks pile up quickly and all the time practical problems ask for solutions. Unfortunately ALS is characterised in most cases by a quick progression. Moreover this rapid evolution changes the way Wim is functioning. Slowly but surely his situation will deteriorate. In order to make normal life possible a lot of adaptations are necessary.
‘Last year in June Wim could still walk, I think he started to support himself in September and then, around Christmas, a manual wheelchair. In March the electric wheelchair: things went really fast. In the meantime we rebuilt the whole house, installed an elevator, an adapted shower, an adapted bed… and then, starting from June, we had to support his head, as he couldn’t do it himself anymore. In August we made the application for a speech computer, because his voice was faltering.’
While Natacha is busying herself, we hear a computer voice: ‘You have to anticipate all the time.’ With this short sentence Wim possibly formulates best the heart of the matter when it comes to dealing with this desease. As the changes occur practically on a daily basis, you always have to keep ahead a few steps, think ahead, in order to deal with the problems coming your way. That appears to be quite difficult: ALS patients often don’t understand well how the desease progresses, what they can expect -or so people tell us. Their family gives a good example as to the importance of taking the appropriate actions: ‘Wim is fed by a stomach tube now… he can still eat normally, but slowly. Therefore a stomach tube is used to give the extra nourishment, as prognosis for the phase where he won’t be able to eat sufficiently.’
Thinking ahead is essential as the application procedures for the necessary resources usually take a long time. ‘You see, all those resources, they exist, but those huge procedures and ways of application in order to get them… And all the time the ALS League was helping us superbly: they are much faster when it comes to renting resources. For instance, we could rent an electric wheelchair from the ALS League, 3-4 months, in anticipation of Wim’s actual electric wheelchair. Otherwise it had been hopeless. The VAPH (Vlaams Agentschap voor Personen met een Handicap – Flemish Agency for Persons with Disabilities) is super, but although adaptations of cars or the installation of elevators are always payed for, you still have to pay for them in advance. Indeed, we cannot wait until it’s payback time, because that’s 8 months later! Such a thing would be impossible. So we started to install the elevator last year in September. In January it was put in place and I think that that very day it was only half finished but still we had to use it, as Wim couldn’t get down the stairs any longer. And we got repaid for the elevator 8 months later.’
Even though they are both still working, Wim for 60% and Natacha for 80%, all the necessary adaptations form a huge assault on the family budget. ‘Both my parents and Wim’s have helped us because you have to pay everything in advance. Renovations around the house, the elevator, the shower unit and then buying an adapted car… I just hesitate to make a guess, but I’d say 50,000 euro minimum, everything included, you can’t have that for less. And all that in just a year and a half. For a young family with 3 children. So, if it wasn’t for the help of our parents and colleagues who organized a number of benefits for us, we would never have succeeded.’
In spite of all these difficulties they try to lead a family life that is as normal as possible. This year they will celebrate New Year’s Eve with a group of regular friends and at home so as to give Wim the possibility to be with his family, with all his resources nearby. They consider it important that there is a real celebration for the children, with fireworks and all. And talking about their wishes for the new year Natacha says: ‘Especially Wim and the children, that I’ll be able to keep on putting up with everything for them and the children too, I hope they will be able to handle the situation … that I will be able to do so.’ And the computer voice adds: ‘I still believe something will be found. I follow the medical science closely. Finally I just want some happy moments with my family.’ The voice sounds mechanical, but the words are deeply human. Never give up, that’s their message to everybody else in a similar situation.
‘Don’t give up, continue. Keep hoping, keep believing. Watching ‘Thuis’ in the evening with the five of us on the sofa, so as to keep these family moments, never at our wit’s end. There is a life before ALS and then there is the life with ALS, but you should never give up. Laugh along, it’s necessary, and quarrel along too, it’s part of the game. And tell your kids they can cry or be sad. Show some wit and make jokes’.
This attitude makes it all more bearable and viable for the family. Obviously they don’t give in to ALS. The tree is present, the parcels are underneath, light bulbs are hanging outside.
24 hours is not enough
The family used to have a very active social life. Every one of them had a separate hobby like volleyball, soccer, running, hockey, gymnastics in a club. A busy young family. In those days every day was too short already. In the meantime tasks have grown much bigger. Therefore help by a third party has become necessary. Every morning and every evening the Wit-Gele Kruis (White and Yellow Cross) is helping with washing, showering, shaving… Every day the Family Support presented by the OCMW (Public Centre for Social Welfare) is ready to support Wim in the afternoon when he returns from his job. Both the physician and the speech therapist are always calling at home. Friends come around regularly and bring a delicious meal. Natacha says that 24 hours is just too short, because in spite of all that help you tend to run ahead of yourself. While for now she has to give up some of her hobbies, the family still tries to make it possible for the children to have all their hobbies, thanks to the help they get from other parents, friends and family members who drive them back and forth numerous times.
Christmas and friends visiting
The family has decided that this year Christmas had to be something special. There were a few nice family moments and there was a lot of hugging, and Wim sent a message to friends and acquaintances asking them if they could, in turn, be visiting them and having dinner with them the week before Christmas, the Warmest Week, so as to give them a hand. There were many reactions to this request, more than was expected. A week was planned but one week became two weeks, with another waiting list of people who really wanted to be of any help in the near future. The fact that Wim uses his speech computer nowadays makes it again easier for us -and for friends and family- to communicate with him. Before that people were rather reticent, they didn’t dare to do so, because they were afraid that maybe they wouldn’t understand Wim, but with the speech computer communication fortunately became easier again.
Translation: André De Laet