Although I admit I am the first person who says “Do as I say, and not what I do”, it is very important to take care of yourself as you are taking care of your loved one. I know it is against your instincts to focus on yourself when you feel someone needs you more, but it is important to do so.
The caregiver has a very important role in caring for the patient. A caregiver can have a varying amount of duties demanded upon them depending on the needs of the patient. These demands include not only physical actions, but also the mental requirements in keeping the patient from depression and apathy. If the caregiver is feeling imposed on, taken for granted and not appreciated, it will reflect in the care of the patient.
There are simple ways to take care of yourself without sacrificing the needs of the patient. Physical activity is very beneficial, even if it is just a walk around your neighborhood. I try to get to the gym 4-5 times a week to use the treadmill. Even though I would rather just sit and relax, I always feel better after an hour on the treadmill. More enjoyable activities are also helpful, such as a night out with friends, my weekly bowling league and other ways to interact with other people. We joke that our bowling league is really a social event where we happen to bowl at the same time. Other pampering dates, such as manicures, facials, massages, should be scheduled into your routine on a regular basis.
The biggest obstacle in taking care of the caregiver is to overcome the guilt that always comes about when you take time for yourself. The way I ignore this feeling is to remind myself that it is important for the caregiver to feel at peace with their role in their patient’s care. The caregiver will not be doing their job if they are harboring resentment towards their loved one for something that the loved one has no control over. This is not to say we don’t have our times of utter frustration, which we deserve as well as the patient does. But we learn to move past those feelings and take care of ourselves as well as our loved ones.
A little bit about Laurie...I am a MS Caregiver for my daughter, who has had MS symptoms since she was 10 years old. Pediatric MS was rarely recognized in 1999 when we began our MS Journey. 14 years later, I am passionate about finding ways for other families to connect with each other as we are forced to confront this chronic illness. I find a lot of support thanks to the internet and a Facebook group Pediatric MS Alliance. From this group, I have met many families from around the world that are also feeling isolated. From this Facebook group, we have formed the website www.pediatricms.org and are in the process of obtaining nonprofit status, with the goal of connecting families in person as well as informing families of activities and information designed for the pediatric MS patient.
Years ago my husband was diagnosed with MS. He asked me not to tell a soul, and I did not. What I did was a lot of internet searching. I Googled “my husband has MS” and this returned nothing...no support group or special article about the wives of men with multiple sclerosis. AH! Maybe if I try searching “My husband has multiple sclerosis,” but there was still nothing...at least nothing useful. Fear-not fellow ‘caregivers,’ I found my way by reading advice not exactly tailored to my needs and by trial and error.
I Googled the same phrase today and it looks like there is a lot more out there. However, I don’t really feel the need to read it now, as I feel happy and well adjusted. There is no certainty for any one of us at any time whether we are healthy or dealing with a chronic medical condition. I know I went into the diagnosis with the belief that no matter what life throws at you, you can choose how you respond. Coming up on somewhere around five years since his diagnosis, I have proven to myself that no matter what life throws at me I am able to choose my response.
This doesn’t mean I push away any reactions I may have. Like when I think of the man I met who would do a quick vertical jump randomly hanging in a tree while the rest of us were content to just saunter slowly down the sidewalk – I cry. Nearly every time I have these memories I cry because it occurs to me that of all of us he was the one who really used his physical abilities. I don’t choose not to be sad about that...I AM sad. But then I breathe and realize that I do have a choice and I chose to smile at the memory through tears. Loss and joy can in fact co-exist. I choose to hope for a day when I will watch this marvelous man jump into a tree...I imagine it and then let it go knowing I do not have control. I choose to focus on what we do have and to honor my husband by (trying) to use all my physical abilities to the fullest, like taking on Yoga and running (when properly motivated).
To me this is a family diagnosis and his health and attitude do affect me and deeply. But I can choose to grow stronger even when we are having weak moments. And when I am weak I move forward anyway each time growing stronger. It would be easy to throw in the towel and play the victim card. But I won’t, as that doesn’t serve me, my husband or our very young son. I choose acceptance, hope, service and bravery.
Never pity a caregiver...we are the ones who chose to serve the people closest to us, and in this choice lays the nearly limitless potential for integrity and growth.
The hardest part of being a caregiver is not really knowing what our loved one is experiencing. We depend on them to tell us what they are going through and how they need our help. We learn what they need without them asking, but we can not really know what is going on in their bodies.
Being a caregiver takes a willingness to give up a part of your life, sometimes a large part, to care for your loved one. In my case, caring for my child, I feel I have no choice. But to have a spouse or parent who needs your help, you do have the option to "opt out", but you don't because of your love for them.There are also stages of emotional acceptance we go through. Whether taking care of a spouse, sibling or child, we need to come to terms with the "death of our loved one's healthy life" and the plans for our future together. We have to learn to accept these changes as their illness takes control of both of our lives and not harbor any resentment to the patient. I know as much as I sometimes regret that I can not have a career or even a job because of her need to always be supervised...this is where I need to be and I can't blame her for that. A caregiver's schedule revolves first around the patient's schedule and needs. There are times when you can have your needs override, but the majority of our planning is centered around their needs. As a caregiver, you become the patient's adovocate. This is true whether the patient wants you to or not. I have no problem with her accepting me in this role, but as other caregivers take care of siblings, spouses or parents who don't believe they need someone to fight their battles, it is a tougher job.