Being a caregiver is tough. Trea Boekhorst (79) from Balloo notices this every day and every night. She cares for her husband Herman (80), who suffers from dementia. “You have to find your way, but that is difficult.”
Trea is always there. She lays out his clothes, makes his food, gives his medicine. She pays attention to whether Herman really puts the tablet in his mouth and swallows it, before she looks away. She tries to chat with him during the day. In the evening she chooses a program on TV for Herman. Something about nature, because he likes that.
Herman has diabetes and vascular dementia. Trea has been an informal caregiver for about three years now. “It’s slowly creeping in, it’s becoming more and more,” she says with Herman next to her on the couch. “In the beginning he did something, such as helping with cutting vegetables, loading the dishwasher or grabbing a cup from the cupboard. But everything went wrong the last time. He doesn’t know anymore.”
Vascular dementia is caused by problems with blood flow in the brain. Sometimes Herman seems to feel the vascular damage. “Then he grabs his head,” says Trea. Herman demonstrates: “My head doesn’t work anymore.”
At certain times Herman can also be very sad. About how he can’t do anything anymore. And what he is still doing here. “I also get very sad sometimes. Then I think: what can I do with this?,” says Trea. She also feels lonely. “Most people don’t understand it. I sometimes find it a very lonely road. But I shouldn’t say that out loud, then I’ll start crying.”
Trea and Herman can talk to each other very openly and directly. “If we don’t want to, we will tell each other. And then we hold each other. Herman is very sweet,” she says. “We sometimes stay in bed for a while in the morning. Then we give each other a hug.”
Trea also has a lot of patience. “I’m surprised at how patient I am,” she laughs. When Herman asks the same thing ten times, Trea calmly gives the same answer ten times. “Then he says to me, you’re doing so well.” Herman laughs back.
Request home care
Three years ago, Trea was faced with a lot at once. Trea and Herman have two daughters and five grandchildren; her daughters helped Trea with the arrangements.
They received a case manager, who guides Trea and Herman. A home care nurse comes by twice a day to help him with his medications; Trea has to do it herself early in the morning and in the evening. And a domestic helper comes once a week.
On Wednesdays and Fridays, Herman goes to day care, which they have also arranged through the Social Support Act (Wmo). “He will be picked up around 9:30 am and he will be back around 4 pm. Then I have to make sure his sandwich is in his bag and that he has his medicine and phone with him.” On those days, a nurse also comes to help Herman shower. The daytime activities are mainly intended for Trea: then she has a break.
Applying for home care was emotionally difficult for Trea. “I hated having to ask that. I waited a few weeks to do that: is that necessary? Do I want that? You’re hiccuping at it. These are all steps backwards.”
Now Trea is mainly confronted with the care plan. This contains the agreements about the care and guidance by the nurse. “I recently had a bad case of the flu, and all I could do was lie in bed. I asked the nurse if she could heat up some soup for Herman. But when I came down around 9 p.m., he had had no food and no medicine. “That is not in the care plan,” she said,” says Trea.
“I’m quite bothered by that. I always do it myself, I ask for it out of necessity. But they are not yet allowed to make a sandwich.”
Tricycle
And then there are the rules and solutions that Trea actually discovered by chance. “There is a lot of uncertainty in the beginning, you have to figure everything out,” she says. When Herman could no longer cycle, two nephews – owners of a bicycle shop in Borger – advised purchasing a tricycle through the Wmo.
And when Herman fell behind the bed in the middle of the night, she heard that ‘there are lights for that’. Trea didn’t know that at all. “Now we have a light in the shower. And afterwards I thought, oh yes, when our children were small we also had a night light like that.”
Finding all the support takes energy. “It would be nice if it was all just one package. But the Wmo is something different from welfare, and welfare is something different from the Long-term Care Act (Wlz), and so on. That could be a bit easier.”
Volunteer help
Trea has also been attending a contact group for informal caregivers at the welfare organization Impuls for a year now. Informal caregivers with a partner with dementia advise and support each other. Actually, Trea didn’t want to go there. “In the beginning I found it very confrontational, I didn’t want to know anything about it. I was angry,” she says. “And I didn’t understand why I had to listen to those miserable stories from other people.”
Still she went. And she decided to tell her own story. Once she was so sad that she cried. And the other informal caregivers understood that. “It’s useful to you,” she says. Now Trea goes every month.
She also heard about respite care through Impuls: someone else temporarily takes over your care tasks. In Trea’s case, this is volunteer Trieneke Brink (62) from Gasselte. Once a month Trieneke comes by to drink coffee and chat with Herman, so that Trea can get away for a few hours. Trea can, for example, go shopping, walk with a friend, or work in the garden.
“I think it’s great that there are such people,” says Trea.
“It also gives me satisfaction. All three of us are happy when I have been back,” says Trieneke. Because the click with Herman is good.
That always requires a wait and see: a volunteer usually comes by first to get acquainted before coming more often. “I have ‘babysat’ three times now and I have the feeling that he already recognizes me,” says Trieneke. “And if you have that trust on both sides, Trea leaves with a safe feeling.”
She herself cared for her mother who had dementia. “So I do have something with me in terms of baggage,” she says.
Trieneke has been doing this for about two years now. This is her third family: if a partner with dementia is admitted to a care home or dies, Trieneke’s volunteer work also stops. “In all three families I have been to, I notice that the husbands are very caring. I also sometimes fear that Trea is very heavy and that she will suffer from it. You try to keep your partner at home as long as possible.”
Overloaded
Trea’s children have arranged daytime activities and contacts at Impuls, because they feel that Trea is overloaded as an informal caregiver. And Trea actually thinks so too. “My children say: ‘You should indicate better when you need help. You do everything yourself and you want everything yourself.’ And maybe I am like that too.”
But, says Trea: “I also consider it nothing more than my duty. You’ve built a life together, so you have to do this. Even if it is sometimes to my own detriment.”
She actually wishes there was more help. But healthcare providers simply don’t have time for that, Trea thinks. “I think the saddest thing is that you can never completely leave again. Just a week away, for example. You can’t be missed, you can never be sick. It’s never quiet and you’re always walking on your toes.”
Trea has had to give up many of her hobbies and social life in recent years. “The desire for fun things is no longer there, because you are too tired besides caring,” she says.
She does have a creative hobby: she makes sheep from pebbles, which she sells at her house. “That is really my outlet.”
Trea will soon discuss with the case manager how she can apply for care under the Wlz, which she currently does under the Wmo: the transition from one law to another is necessary as care becomes more intensive. She learned that from the contact group. “Then you can think in advance what you want for when the time comes that he can no longer live at home,” Trea explains. That is her biggest fear. “I hope I don’t have to take him away.”
“No,” Herman soothes from the couch. “I’m going nowhere.”
‘Rise the alarm’
Welfare organization Impuls offers informal care support for residents of the municipality of Aa and Hunze. Impuls helps with filling out forms and provides training (such as mindfulness) and meetings.
Carin de Jonge is an informal care consultant at Impuls and also supervises Trea Boekhorst. “Informal caregivers can take good care of loved ones, but often neglect themselves,” she notes.
De Jonge leads, among other things, the contact group for informal caregivers with a partner with dementia. The group consists of eight informal caregivers. “They all come in the first time with the idea: ‘People say it is very good for me, but I don’t say anything and don’t participate,’” says De Jonge. “During the conversation they all have an emotional moment, in which they still feel supported.”
There are now seven respite volunteers like Trieneke Brink. “I actually have too few. It is often in difficult situations,” says De Jonge. She has little insight into the needs of informal caregivers, because they often ask for help (too) late.
She therefore has an appeal to informal caregivers: “Register with a welfare organization in your municipality, sound the alarm. It is free of charge and you do not need an indication. It is difficult, but ask for help, because then you can persevere longer.”
Informal Care Day
According to the MantelzorgNL association, 1 in 3 Dutch people aged 16 years and older provided informal care in 2019. That is approximately 5 million informal caregivers.
The association has declared November 10 as Informal Care Day. This year’s day is all about regulatory pressure: MantelzorgNL talks about letters with incomprehensible language, a mountain of forms, complicated rules, not knowing where exactly to go and having to deal with dozens of healthcare professionals and organizations.
According to the organization, informal caregivers are too busy making arrangements. It costs informal caregivers an average of 4 hours per week, says MantelzorgNL. The organization has therefore started a petition to simplify the regulations.