‘It was a strange process’: Vicki’s experience as an informal carer

Vicki is still working. As she cares for her husband with early dementia, she had to adapt her professional commitments accordingly. And yet nothing is being done to help her continue working. In a touching testimony, Vicki talks about the guilt she feels while nothing of this was her choice. Her story is the story of many informal carers, the story of many spouses, middle-aged daughters or daughters-in-law, aged 45 to 75.

“It was a strange process. My husband was diagnosed with Alzheimer a year ago. At that time, he was retired and at home. He did most of the work in the house: shopping, the laundry, gardening, etc., but I had to keep an eye on what he did in case there were problems. I left him to do as much as he could and respected his efforts in order to support his idea of self-worth. Soon after the diagnosis, he started to attend a day-care centre which specialised in younger people with dementia for 3 days per week. Combining this with my work created some problems. I usually leave at 8:00 in the morning and am home at 17:15. He was collected by taxi at 9:00 and was back home at 16:45. Without any warning, this was changed to 16:15. I tried to discuss that with the taxi driver but in fact I was just expected to be at home when he came back, whatever the time.

It is always a case of “a quick chat” or “Can you come?” at a time which suits the professional care-givers. I was shocked when the reaction of the contact at the day care centre to the news that I worked full-time was “We will talk about that later.” Without any knowledge of my situation, she had already made a judgement. I had a real dilemma – should I cut down my working hours, or even stop working altogether? I have been the breadwinner in our household since 2006, and I cannot just resign voluntarily as I would then have no right to any form of social security payments. My husband’s work-related pension disappeared when the company went bankrupt and his old-age pension is taken up by his care. I was only 60 at the time, and had at least 7 years to bridge before my state and company pension began. I have to work to support myself, but she made me feel that I was letting my husband down.

Less than 2 months later, my husband’s health suddenly deteriorated and he moved to a care-home in a different town. I had the same problem again: meetings with the team to discuss his care plan at 14:00, and the specialist dentist whose latest appointment is at 15:30. I had to leave work early to collect my husband and get him to the dentist in another care home in time, wait during the treatment and then take him back and get him settled again. In fact, these activities took a whole afternoon. Luckily my employer is very understanding, and I had some overtime which I could use, but this is a real problem if you do not have that option in your job.

People simply assume that you are always available, and the common reaction is “Oh, do you work, then?”. The popular, but incorrect, image of a carer is a spouse or family member who has no other commitments and can always fit in with the schedules of hospitals and care homes. Being torn between the necessity to work and the demands of the care organisations is a constant issue.”

Vicki Fritzsche, Netherlands