More than half of the partners of a person with MS experience clinical depression. No wonder – any change in the patient’s mood violates the sense of security of the whole family.
It is estimated that about 45 people with MS live in Poland. There are at least twice as many affected by the disease. Along with the diagnosis, the lives of loved ones change. For this reason, the European Parliament treats multiple sclerosis as a social problem.
We remind you of the text by Iza Czarnecka about the everyday life of partners and caregivers of people with multiple sclerosis.
Escape?
Katarzyna Szymańska-Borginon, RMF correspondent from Brussels, ran away to work after her husband’s diagnosis, Steven. All days, and sometimes nights, she spent away from home. – Steven’s disease, the progression of disability made me feel helpless, she said. – And here at work, I had the feeling that I had influence on something. I pushed the disease out of consciousness.
Escaping from being sick may involve denying the disease, or it may take the form of leaving the sick person. There are no Polish data on divorces caused by MS. However, they are not common, “the divorce rate for marriages with MS is half that of the healthy US population” (Miller, Crawford, 2008). Some couples who decide to break up change their mind due to the diagnosis. The healthy stay in a marriage out of a sense of duty, and the sick stay in a marriage because of the fear of loneliness and the loss of financial security.
The disease, however, will not glue a failed relationship and will not destroy one that is based on solid foundations. A healthy partner who stays only out of a sense of decency and so gradually moves away from the mentally ill, physically and sometimes financially. It comes to something akin to “pseudo-divorce.” A healthy partner is supposed to be, but actually is not. This situation makes it difficult for extended family and friends to help. – The husband was always away from home. I couldn’t cope at all and I was ashamed to ask for help. I was ashamed for him, I was ashamed to admit that I had no support – says Marta. – As soon as he left, the neighbors themselves came and asked if he could help me. They knew about my situation beforehand, but would not interfere.
changes
Changes are waiting for the partner of a person with MS, along with the diagnosis. First: increasing the burden of responsibility for the family. Regardless of the patient’s disability, a healthy partner most often undertakes to support the family. It means giving up your own life plans. It is difficult to reconcile the necessity of earning money for a home, taking care of a partner and family with, for example, professional development.
The second difficult issue is the need to take care of an adult sick person. At least a quarter of people with MS find it difficult to function on a daily basis. In Polish conditions, a healthy partner gradually transforms into a nurse, driver, therapist, physiotherapist, etc. de facto sole guardian. What is worse, it is often an ungrateful job, met with inadequate reception even on the part of the patient himself, frustrated by increasing disability.
Statistically, caring for a sick person takes 3 to 6 hours a day. As many as every fourth partner of people with MS uses antidepressants and psychotherapy as a result of mental strain. There is a relationship between the well-being of care partners, their mental state, and the physical, emotional and health functioning of people with MS (Pozzilli, 2004, p. 10). Urological problems are particularly troublesome, as they make it necessary to take care measures. As many as 61 percent of partners who spend more than 21 hours a week caring for a sick person experience clinical depression (Buchanan, Radin, & Huang, 2011) and should undergo therapy.
It takes a breath
Unfortunately, in Poland, relatives of patients can only count on self-help within patient associations and online discussion groups. Lack of any systemic support, although without the help of partners of people with MS, the state would have to spend much more money on caring for patients. – There is talk of mothers of children with disabilities, about the efforts of their relatives who have Alzheimer’s disease in their family, and in fact, every caregiver of a chronically ill patient relieves the state – says bitterly Krzysztof. – I do not want much, but I have to go to the hospital for surgery and I have no one to trust. Dread to think what will happen when something happens to me.
The standards of assistance in such cases, included in the European Code of Good Practice in MS, include services of the type respite carewhich allow caregivers to be relieved, temporarily or in emergency situations. In Poland, there is no need to dream about this kind of institutional support. It is good for the partner to build a self-help network of extended family or friends around him. If there is no such help around you, you will hire a babysitter, which hardly anyone can afford.
– You can use the welfare nanny – says Krzysztof, – but none of them has even elementary nursing preparation. There is no point in changing the diaper of a lying patient, although this is theoretically up to them. It’s a nightmare.
Lack of knowledge about how to help a disabled person also causes health complications in partners of people with MS. Paweł, the husband of a sick Gosia, has back problems due to constant lifting. “Nobody teaches you how to deal with it all,” she says. – Before I found information on how to properly transplant Gosia, it took a while. As a result, now I have health problems myself. Could use a course.
Next to each other
It happens that as disability progresses, the patient’s world becomes more and more limited to four walls. Little things become events. Meanwhile, a healthy partner can hardly reconcile work, care, raising children and running a home. When the sick person is waiting for him to have someone to talk to, his partner dreams of resting, having minutes all for himself. One world is slowing down and the other is constantly accelerating. One side is frustrated with waiting for help, and the other side is irritated by having to be at every call.
At first, irrelevant points of contention turn into fields of conflict. The first is a different assessment of physical abilities. – Gosia doesn’t think before she does something – says Paweł. – Recently she wanted to go out to the balcony in her wheelchair, even though there was no driveway unfolded and we didn’t pull out the safety mustache. The cart overturned, she hit her head. And it was enough to wait a moment.
– It’s a nightmare, he thinks I can’t even handle the shower by myself! – says Gosia. – As if I were a child.
Another problem is the use of free time (which a healthy partner does not have), adapting the home to the needs of disability, costs of treatment and rehabilitation, disappointed hopes, difficulties in sexual relations, and even the assessment of the impact of the disease on the work of a healthy partner. Nearly three-quarters of the surveyed patients claimed that MS had no impact on their partner’s work. In fact, as many as more than half of the partners had to change their lives and career plans as a result of the emergence of a disease in the family. Such a difference is difficult to attribute to a statistical error (MSIF, 2010).
Good guardian?
Stress, a sense of isolation makes anger, frustration, aversion to the patient and even aggression appear. The latter is not only consciously acts, but also subconscious actions, such as, for example, pulling the hair too hard while brushing, jerking the stroller. – Wife poured hot water into the bathtub, I was unable to leave, I waited for someone to come and get me out of the boiling water – says Maciej. – She hated me.
– As I was driving my wheelchair out of the elevator, I ran over my husband’s shoe. He immediately lifted the pushchair handles and I slid to the floor – Joanna says.
Although this type of behavior results from burnout, even exhaustion with many years of care does not justify them. Therefore, before such situations arise, it is worth stopping, talking and listening to each other, sometimes using therapy, sometimes just remembering why both parties are together. Because in the beginning there was love, not SM, but love …
Aymerich M., A. Jovell (2001), Being a Multiple Sclerosis (MS). Caregiver: an Important Impact on Health Status, “Annu Meet Int Soc Technol Assess Health Care Int Soc Technol Assess Health Care Meet.”, t. 17.
Buchanan RJ, D. Radin, C. Huang (2011, 13), Caregiver Burden Among Informal Caregivers Assisting People with Multiple Sclerosis, “International Journal of MS Care”, t. 13, s. 76-83.
Miller D., P. Crawford (2008), Caring union, [w:] R. C. Kalb, Multiple sclerosis. Family Guide, Warsaw: Polish Society of Multiple Sclerosis, pp. 147-167.
MSIF. (2010), MSIF survey on Employment and MS, London: MSIF.
Pozzilli C. (2004), Relationship between emotional distress in caregivers and health status in persons with multiple sclerosis. “Multiple Sclerosis”, t. 10, s. 442-446.
Text: Iza Czarnecka
The materials of the quarterly for people interested in multiple sclerosis Positive Impulse were used