Shoshana
Cares for her husband
Age at interview: 54
Age at start of caregiving: 24
Shoshana (54 years old) is married and has two grown children. Her husband was diagnosed with multiple sclerosis (MS) when she was 23 years old. They have remained together through different stages of his illness and care, even though the mental and social impacts of the disease have been particularly strong, with several negative consequences for Shoshana and her family.
Shoshana was in her third year of marriage when her husband developed blurred vision and numbness in one of his legs. The period prior to diagnosis was challenging for them, as the medical assessment could only be made through a process of elimination. A few years later, Shoshana’s husband had to give up his occupation as carpenter. He then became a volunteer in a school for mentally challenged children and was later hired as a teacher assistant in that same school. In the meantime, Shoshana has always worked as a clerk in a non-profit office. The period after Shoshana’s husband lost his well-paid job was financially very difficult for their family.
Shoshana describes the problems associated with this disease as “hidden symptoms” because they are hardly visible to other people. Such symptoms include chronic fatigue, bladder control issues and cognitive problems. Shoshana’s husband changed from being a patient and kind person before the illness into being someone with a short temper and a persistent anger directed towards his own wife. He also became easily engaged in socially unacceptable behaviour, which has had a very negative impact on Shoshana’s life. It is extremely difficult for Shoshana to deal with her husband’s criticism or unfriendly remarks, particularly when there are other people around. Shoshana, who enjoys socializing by nature, has now become hesitant to make new friends because she is worried about embarrassing situations involving her husband’s aggressive or unacceptable behaviour. She sometimes copes by leaving their home in the daytime for short periods, letting things blow over, and, with time, she has learned to choose her battles with him.
Although her situation is not easy at the moment, Shoshana explains that she has lived through other challenging periods when, as a result of illness, her husband was even more verbally abusive towards her. During those periods Shoshana felt like she was drowning and unable to come up for air. She had suicidal thoughts and considered divorce. Fortunately, Shoshana and her husband sought psychiatric help, which was covered by their insurance, and this intervention partially relieved the problem.
Shoshana advises caregivers and chronically ill people to look into practical arrangements for things such as power of attorney, advance directives for their family members’ care plans, life insurance and disability insurance. She and her husband have, for example, arranged for all medical decisions to made jointly between father and daughter in the event that anything should happen to Shoshana.
She also urges anybody with similar experiences (suicidal thoughts or psychological abuse) to find assistance as soon as possible by going to a doctor, a friend, or any others willing and qualified to help.
More content
- Interaction with professionals -ShoshanaShoshana disagreed with the diagnosis her husbands’ physician had given him, but later found out why the doctor had been cautious about being straightforward.
- Interaction with professionals -ShoshanaShoshana disagreed with the diagnosis her husbands’ physician had given him, but later found out why the doctor had been cautious about being straightforward.
- Resources -ShoshanaShoshana has maintained friendships with two other women who attended the support group.
- Effects of care recipients’ behaviour -ShoshanaShoshana’s husband has some behavioural issues and can be critical of her in public.
- Support from family and friends -ShoshanaThe support from Shoshana’s family-in-law was very poor, but she did receive great support from her sister.
- Social impact and lifestyle changes -ShoshanaShoshana is nervous about pursuing new friendships because her husband’s temperament has changed with his condition. She is worried about how others will perceive him.
- Providing support -ShoshanaFor Shoshana, caregiving is more about being a memory bank and a daily calendar.
- Legal issues -ShoshanaAfter her husband was mentally incapacitated, Shoshana wondered who could make decisions about her healthcare, should the need arise.
- Impact on health -ShoshanaShoshana advises anybody with suicidal thoughts to find a source of help.
- Advice for friends and family -ShoshanaShoshana suggests that for social events, people should always invite both the caregiver and care recipient; let them decide whether or not they are able to participate.