“What will happen once we’re not there anymore – we think a lot about it”
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Marianne Pinomaa and her husband, our president Jyrki Pinomaa, have two sons with intellectual disabilities who need round-the-clock care. Markus (32 years) and Robin (27 years) moved out of their childhood home six years ago. How does ageing affect their parents? We asked them:
“Markus and Robin attend a centre for special activities every morning. They work there until 14.30h and then head back home. They both have their own apartments, with a service provider organised by the municipality providing the services they need.
Even though they don’t live at our place anymore, we still take care of a lot of their everyday issues, like medication, appointments with neurologists or dentists, therapies, equipment such as wheelchairs and paper work.
Markus and Robin come home for one night every Thursday. These visits are extremely important to them, but we are afraid to not be able to do this type of care anymore at one point.
Partly it already is physically very difficult – for example, dealing with situations like epileptic seizures, especially if one of us is not at home at that time. For the moment, we do not get any support for the time they spend at home. And we are hesitant to request it, as we would prefer these Thursday evenings to be our ‘family time’.
We regularly meet with a group of parents who have children living at the same place as Markus and Robin. The future, what will happen once we’re not there anymore – this is a recurring topic in our discussions. We think a lot about it.
We never wanted to oblige our other children to take care of our disabled sons’ issues. Their youth was very much affected by the disabilities of their brothers, and they grew up as children of parents busy with caring for them. This was not their choice, so we do not want to pass down the responsibility to them now. Of course, they care a lot about their brothers, but they must have a right to be just family members, nothing more.
Even though there is progress now in Finland, institutional structures are still widespread. For a long time, this was the reason why we never trusted anyone else to manage all the administration that is needed for Markus’ and Robin’s wellbeing. At the moment, we are a bit more hopeful that a solution can be found. But it is a difficult path. Indeed, we have the same thoughts as the parents we meet with regularly: “I wish I could live one day longer than my child.”
This article was originally written for AGE Platform Europe’s “Ageing Equal” campaign.
Click on a word which is in bold to read what it means.
“Parents of people with intellectual disabilities
think a lot about one question:
Who will take care of their children
when the parents cannot do it anymore?”
Jyrki Pinomaa is the president of Inclusion Europe.
Jyrki has a wife called Marianne.
They have two sons with intellectual disabilities.
Their sons need support all the time.
The names of the two sons are:
- He is is 32 years old.
- He is 27 years old.
Six years ago, Markus and Robin moved out
of their parents’ house.
Jyrki and Marianne are getting older.
So they find it harder to look after their sons.
Markus and Robin have a job
that keeps them busy until 14.30 h in the afternoon.
Then they go back home.
They each have their own flat.
They get support in their daily life.
But their parents still help them with many things.
- taking pills,
- going to the doctor,
- buying things that they need,
- filling out forms.
Once a week, Markus and Robin spend one night
at their parents’ place.
They are always very happy to see their parents.
But if Markus or Robin need medical help,
it is hard for the parents
to look after them.
The parents don’t have support
for when Markus and Robin come over to visit.
The parents do not want to get support at the moment.
They just want to have family members around
when Markus and Robin are visiting.
The parents are afraid that
sometime they will not be able
to support their sons anymore
when they come visit.
The parents meet other parents of people
with intellectual disabilities who live close to their sons.
All the parents talk a lot
about who will look after their children
when they are not able to do it anymore.
This is a big issue for them.
Jyrki and Marianne also have other children.
They don’t want their other children to feel like
they have to look after their brothers all the time.
The parents used to be very busy
looking after the two boys.
So the other children felt left out sometimes.
The other children love their brothers.
But they should not feel responsible
for looking after Markus and Robin.
They should be able to be just part of the family.
There are still a lot of institutions in Finland.
Many of the institutions don’t take good care
of the people living there.
That’s why Jyrki and Marianne never wanted
to ask for help to these institutions.
They managed everything on their own.
But now they hope that they will find
support outside the family.
So they can get help their sons.
Many parents of children with intellectual disabilities
say the same thing:
They would like to live at least one day longer than their children.
So they can support them.