Shoshana

text only
Age at interview
54
Age at start of caregiving activities
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.

Text transcripts

Don’t exclude the couple because of a physical barrier like if that person was in a wheelchair and they can’t get in your home. Perhaps you could spend time in the yard. They could possibly get in your yard for the evening instead of inside the home if there’s steps involved, washroom problems, that type of thing. Let them say no. Offer it. Let them say no. Let them decide if they want to attempt this.

And if it’s not possible for the ill person, don’t discount the well spouse. “We’re having this get together with so and so and so and so. If your husband isn’t able to come, would… more

With his symptoms come behavioural issues. For someone who used to be very patient and very easy going, [he] is not anymore. That’s really hard to deal with because of the short temper, the anger that has changed over the years. And of course I would be the brunt of that. He would criticize, if we had someone here, he would criticize something I might have done. Lately what it is is I’m not doing things the way he would do things. And it’s like, “Big deal, right?” Like, it’s not a big deal. But it is to him. I don’t word sentences the way he would word them. He’ll say, “Like, you mean this… more

Find a source of help. Psychiatry is good except that often there’s a wait time. You might, if you’re expressing a suicide concern, go to your doctor and perhaps you can get into see a professional sooner because of that. Don’t be scared to say that you’re, you know—if you’ve got a good doctor they will react. Find someone who understands it. Find someone who’s been there, done that. Again, probably through a support group or through this website you can find someone possibly who’s been in that situation. But don’t let it go long like my situation with feeling like I was drowning. Don’t… more

The doctor we dealt with when my husband was first diagnosed, he gave my husband a name of [a diagnosis called neuritis] that he could say he had, and I felt that he was wrong. And I confronted the doctor, and the doctor said “I can’t go into it with you without him.” And I was concerned that it was something worse than what he was describing as an illness. So, he said “Then, I have to meet with both of you.” So, he told us that he believed it was MS, and the reason why he didn’t tell my husband that was because of what he thought his reaction would be. And he… more

The doctor we dealt with when my husband was first diagnosed, he gave my husband a name of [a diagnosis called neuritis] that he could say he had, and I felt that he was wrong. And I confronted the doctor, and the doctor said “I can’t go into it with you without him.” And I was concerned that it was something worse than what he was describing as an illness. So, he said “Then, I have to meet with both of you.” So, he told us that he believed it was MS, and the reason why he didn’t tell my husband that was because of what he thought his reaction would be. And he was right. It’s almost an… more

Get disability life insurance when you’re young and healthy, because if you have an illness, it is difficult to get it. And also, it costs a lot of money to have a policy. Often, people take them out when their children are very young and it’s usually just a term kind of policy. But anything is better than nothing. When you’re done you’re schooling and you’re out in your workforce, make sure to look into this, even if there is a policy with your work plan, it’s good to get your own private policies because your work situation could change and you may not be under benefits anymore. You… more

Well my caregiving task is not a typical caregiving task. I mean, he can still function with getting things ready. My thing is being a calendar, a memory bank for him right now. […] Most of my caregiving is reminding him of things, keeping track of things, like when the kids were little. You have this going on on this day. I make sure he doesn’t miss an appointment. He still has a bit of meds.  He’s still really good about looking after that. I don’t have to worry about that. It’s dealing with issues, but he’s fortunately able to deal with most of the stuff. I need to go along with… more

I went to this group and they had a speaker there. She was a nurse. Somehow she dealt with illnesses or whatever, and she was a very, very good speaker. She talked about a bouquet of balloons, and how there was strings, and each one would let go. And she says, “Don’t wait until you only have one or two balloons left to get help”. She said, “get help when you have a lot of strings to hold onto, because you may be too late for your help if you wait till you only have a couple strings left.” I remember her saying that, and that was when we went for professional help after that.

But… more

He would criticize… if we had someone here, he would criticize something I might have done. Lately what it is is I’m not doing things the way he would do things, and it’s like, “Big deal, right?” Like, it’s not a big deal. But it is to him. I don’t word sentences the way he would word them. He’ll say, “You mean this,” and I say, “No, I mean what I said originally” because I’m not wording it the way he would word it. And these are little things, but this is what it’s coming to. And he will criticize things when there are people here and that’s very embarrassing for me because some people… more

The support from my husband’s side of the family, in my opinion, was very poor. My husband comes from a large family. There are eleven children in the family. There’s a couple of them that are great because they’ve had their own experiences with illnesses. The rest are oblivious to what this illness involves and that type of thing. His parents are both deceased. His father passed away when the illness, I think, was only a year or 2 old. So, his mother was elderly, but she was a caregiver because she had a mentally challenged child. So, she was wrapped up. Her support was concern for a son… more