Marlyn (67 years old) lives with her husband who was diagnosed with multiple sclerosis (MS) about 20 years ago. The couple’s first child died in a car accident at age 33.Their two other grown children have moved out of the parental home. Marlyn cares for her husband, whose functioning was hardly affected by the illness at the time of diagnosis but has become much worse over the last few years.
Marlyn and her husband led such an active life that during the first 20 years of his illness, the couple did not notice anything obviously abnormal, even if the MS diagnosis had already been made. It was only after a few odd incidents in more recent years that Marlyn realized that the illness was actually starting to present itself more seriously. The illness gradually and intensely progressed to the point where they realized that they would require a wheelchair accessible place to live.
Marlyn and her husband then designed and built their new home. In an effort to not forget any details with regards to her husband’s future needs, they engaged an accessibility-design consultant. Nonetheless, eight years later and after entering a further phase of the disease, Marlyn’s husband still encounters problems with access to their home. Given this specific experience, Marlyn advises anyone who is considering moving homes to speak with people that are already in the advanced stages of the illness to obtain advice on the design for a new home.
Marlyn’s husband still lives at home thanks to the excellent public homecare services he receives five times a day. The caregivers prepare him for the day, help with incontinence issues and make the necessary transfers from bed to chair and vice versa. Marlyn has a back-up system in place in case her current homecare services are unable to find a caregiver for these fixed times. But this isn’t very useful on short notice. Occasionally, at bedtime for her husband, the couple has had to find help from neighbours. Prior to the homecare services, Marlyn did most of the physical caregiving work herself until she developed back pain while trying to lift her husband. Now, two and a half years later, she is still recovering from this injury.
Marlyn is especially affected at the emotional level by her caregiving situation. She feels somewhat trapped and guilty, which leads to feelings of depression or frustration. Marlyn is also in a situation where she feels that she may be judged by outsiders for the decisions she makes. Outsiders do not always realize the negative feelings a caregiver must deal with. However, Marlyn is now learning to care better for herself in order to deal with this psychological issue. She describes the invaluable support and advice she received from her doctor, such as the idea of taking a trip every three months. This kind of professional support has helped to reduce her feeling of guilt.
Marlyn and her husband prepare as much as they can for the future by continuously adjusting their lifestyle according to the changes in their lives brought about by his illness. This is a difficult, ever changing pathway.