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Man in white shirt kneeling, holding hand of women in wheelchair

When a person is diagnosed with Multiple Sclerosis (MS), it affects more than just themselves. Not only does a person become a patient, but their loved ones become caregivers. Being a caregiver can feel like a job that can be tricky to pick up. For many, the beginning of the journey is the hardest. It’s like jumping into very cold water and being expected to break into a perfect swimming stroke. MS is not an easy condition to understand and comes with a lot of difficult decisions.

When I was diagnosed 16 years ago, I thought that I could do it alone, but soon understood that that would be almost impossible. My MS diagnosis impacted my husband too. He knew nothing about MS and, as expected, he was worried. We had to find a way out of the chaos, together. 

For many family members, partners and friends, coming to terms with their loved one’s MS diagnosis is the first step to becoming a caregiver.

Don’t forget to keep caregivers informed

Caregivers have a special role in our lives, yet are often excluded from conversations with our doctors regarding the management of MS. It is important for family members / partners to be kept informed, right from the very first appointment. This includes learning about the disease, therapy options and supporting the person living with MS (PLwMS) to make decisions about their MS management.

For caregivers, being involved in these conversations mean they are better educated to help a PLwMS make the best decisions for their wellbeing. These decisions can impact the caregiver too, and their relationship with the PLwMS.

My experience with a caregiver

My husband has always supported me, even when it’s not been easy. He balances caregiving with his job, hobbies and finding time to rest. Over the years, I have found various ways of doing things more independently, to help relieve the pressure on him. I would pick up things from the higher cupboards with a barbecue tong and carry fresh laundry, piece by piece, to our closet.

However, there are days where I need more support. For example, I can’t walk properly but need to go out for some fresh air, so he goes with me, making sure I am well supported. My balance is not very good, so for household chores that involve heavy lifting, there’s the risk that I might fall and hurt myself, so my husband does these jobs. If I am too exhausted to cook, he either cooks a meal or orders takeaway.

Many caregivers take on jobs like bathing the person, helping them eat or complete simple tasks, especially if the condition is progressing and becoming a higher grade of disability.

Caregivers are important too

In some ways, a caregiver is an advocate for both the PLwMS and themselves. Caregivers play a huge role in the MS journey and this should be recognized. 

Donna Cardillo, a US speaker at the EMSP Conference 2021, who is married to a PLwMS, raised the discussion of caregivers: “Look into the eyes of a caregiver and ask them…how they are doing!”

I couldn’t agree more: caregivers do an amazing job. They are there 24/7 to help, assist, listen and take care of someone living with a chronic disease. You may hardly hear caregivers talking about their own health issues, or complain when they are exhausted and need rest. When you need them, they are there. Most caregivers are unpaid, yet always strive to take good care for their loved ones.

Caregivers need “me-time”.

As a PLwMS, I still try to take care to my husband, because I know exactly how much he does for me. My MS has not been easy for us; taking time to rest over the weekend, having hobbies or even letting me know when he was not well was a struggle for him. He wants to look after me.

After some time, we found a strategy that works for us. We both have people we can talk to or ask for help. We make plans to enjoy our time as a couple, organize dates to the cinema, or have a Saturday evening dinner at our favorite restaurant. We also spend time doing our own things; whilst husband volunteers as a firefighter, I take pleasure in knitting.

I am grateful that I can do many things without assistance, but I know that there is support if I need it or just want to rest. Our lives have changed, but haven’t ended. With MS came a challenging journey for us, but there is still enough to enjoy and be grateful for.

For caregivers to best look after people living with MS, it’s important they feel supported with information about managing MS and can look out for symptom changes. Read more about managing MS as a caregiver here.

 

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