Cares for her husband
Age at interview: 61
Age at start of caregiving: 58
Rowdyneko (61 years) is married and has two grown children. Rowdyneko is the primary caregiver for her husband at home which she finds challenging. She works as a part-time outreach worker for people with mental health issues. Rowdyneko’s husband was diagnosed with chronic obstructive pulmonary disease (COPD) seven years ago. In the last two years, he has been admitted 21 times to hospital. Rowdyneko is currently on sick leave from work because of the stress and heavy workload associated with her caregiving responsibilities.
Although he had probably had the illness for many years, Rowdyneko’s husband was officially diagnosed with COPD seven years ago. His condition has deteriorated to the point that he is currently in hospital waiting for placement in a long-term care facility. Rowdyneko underlines how lucky she feels that her family has good medical coverage, without which she would not know how to get through this costly process.
The numerous ambulance experiences that Rowdyneko has had in connection with her husband’s hospital admissions have had a big impact on her. Before her husband was last hospitalised, every time she heard an ambulance, she was certain it was going to her house. She still wakes up stressed at night when she hears ambulance sirens.
On occasion, Rowdyneko has felt that the hospital staff decided to release her husband too soon, when he was still ill and fighting an infection. At first she did take him home without objecting, but more often than not he had to return to hospital shortly after his release. Later on, she refused to do this, and now she fights and advocates for her rights and the best possible care for her husband. In spite of the fact that she has had a lot of professional experience with similar cases, Rowdyneko finds it much more difficult to advocate for her husband than for the patients in her work caseload.
Aside from her work with people who suffer from mental health problems, Rowdyneko has disliked activities involving medical and nursing staff since a very young age. And, put simply, she does not like caregiving at all. Rowdyneko feels that medical and hospital staff have unrealistic expectations for caregivers. For instance, she was told by hospital staff that she should learn to do certain basic medical interventions for her husband, and to change her life drastically by moving closer to the hospital. The latter would mean moving away from her social network and her work to help with the medical care for her husband. These demands were impossible for her to put into practice.
Rowdyneko explains that caregiving has not only isolated her, but has also made her feel stressed and tired. In spite of her current sick leave, her situation at home has not improved because she misses the distraction offered by her work. Rowdyneko appreciates how some friends remain in contact by writing or going for walks with her, as she does not always have the energy to give them a call. All in all, caregiving has forced Rowdyneko to give up her longer-term plans and she lives hour to hour without knowing what will happen next.
Rowdyneko’s husband passed away in April 2012, shortly after the interview.
- Resources – RowdynekoRowdyneko told other patients about a free door-to-door transportation service to use instead of private ambulances.
- Providing support – RowdynekoAt times, Rowdyneko was asked to do medical tasks that she did not feel comfortable doing.
- Advice for friends and family – RowdynekoRowdyneko notices that people don’t call her or come over any more. She suggests that family and friends stay in contact.
- Financial impact 2 – RowdynekoRowdyneko is thankful that her husband’s medications are covered by the palliative pharmacare program.
- Financial impact – RowdynekoWithout extended medical coverage, Rowdyneko would have been under much more financial pressure.
- Uncovering how and why caregivers care – RowdynekoRowdyneko would love it if caregiving were fun, or brought her closer to her husband. Unfortunately, this is not the case for her.
- Travelling, holidays and respite – RowdynekoWhen Rowdyneko leaves for a cruise, her family tries not to disturb her.
- Support from family and friends – RowdynekoRowdyneko doesn't do the caregiving willingly, but her son surprises her every day with his unselfish support.
- Society and caregiving – RowdynekoRowdyneko has noticed that younger caregivers often have to stop working. There are not enough resources or support for them.
- Interaction with professionals – RowdynekoBeing expected to do things that you are unable to do is frustrating for Rowdyneko.