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Marina Baudoin , Caregiver
Talking Self-Care with Jon Strum
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20 Nov 2024 | ~6:50 Engagement Time
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My husband has had primary progressive multiple sclerosis for 36 years, so I have slowly but surely become a full-time caregiver over those years.
It began with a “hurt” knee and slowly but surely progressed to him being in a motorized wheelchair. Now he is 74 years old, has been retired for 12 years, and is in need of help to do just about everything. So, I, too, have progressed through many reiterations of what it means to be a caregiver. It used to be easy and didn’t take much time, if any at all, but now it takes up a much more significant amount of my daily time.
Having had a father-in-law with MS, I thought I was fairly well prepared to become a full-time caregiver, but I was not. Over the years, I have learned that MS is a totally unpredictable disease, which means that on a daily, weekly, or monthly basis, I don’t really know what to expect. I’ve had to make many adjustments in my life, and he and I have adjusted together, in tandem, to make our lives as easy and predictable as possible.
As a multiple sclerosis caregiver, you must be emotionally and physically ready for just about anything. Your partner might be 100% capable of doing something one minute and incapacitated physically or mentally the next. Your partner’s energy may depend on their tiredness, their mood, the weather (is the environment cold or hot), or simply the amount of energy in the room. Anything can affect how they move and react in certain circumstances. So, I try to remain as flexible as possible with whatever schedule I thought we’d have for the day.
The daily emotional and physical ups and downs have forced me to become a much more patient person. I repeat “Be patient” to myself several times a day. Whether I’m dealing directly with him, his doctors, or paying the bills, I have to be patient. The more calm, cool, and collected I am, the better our lives flow.
My husband might not be able to do something today that he could have done yesterday, and more often than not, there is no rhyme or reason as to why that happens. It may take twice as long as yesterday, or it may not happen at all. I know that now, and since I can’t do anything about it, I accept it as it comes up. But it takes patience.
Being understanding of his situation helps tremendously. It can be very frustrating for him to try and move his foot forward and have it not go anywhere or to bring his hand with a fork to his mouth and can’t get it there. Our partners want to walk and eat as much as everyone else does, and it’s not their fault that they can’t do something that used to be easy. Be patient and sympathetic to their feelings.
It helps to be organized and focused. There are short-term and long-term issues to consider. For some, making lists of what needs to be done that day or in the future can also help you organize your thoughts.
In the short term, I have found that I spend a big portion of my day planning meals, outings, and even the layout of the house so that he can get around in his wheelchair. Tasks that used to seem simple take more time – getting dressed, brushing teeth, getting out the door. For example, using a fork and spoon has become more difficult because of the loss of strength in his hands. I plan meals around food items he can pick up with his spoon or fork. If we go out, I ensure we have his specialized cup to drink from as he can’t hold a normal cup anymore. I always have an extra bag in the car with essentials he may need while we’re out.
Having his needs ready to go can make our lives much less stressful. Rushing situations doesn’t work well and will often make everything more difficult. He gets more anxious if I get impatient with how slow we’re moving. When my husband gets anxious about a situation, his muscles tense up, and his ability to move decreases exponentially, even to the point of being unable to bend his leg. So I try to avoid moving him too quickly as it makes both our lives more difficult. So it really helps to be organized and plan everything ahead of time, particularly when going out. We must prepare for family bathrooms and accessibility into a house, store, or restaurant, for example. I have even learned that many doctor’s offices are not prepared to deal with people with disabilities. Call ahead and ensure you know what to expect.
In the long term, we’ve had to think about ramps – where to put them in and out of our house, grab bars, replacing wall-to-wall carpeting, and area rugs on our hardwood floors. We’ve revamped our bathroom so I can roll him straight into the shower. The bathroom has grab bars near the toilet and the shower stall. The goal is to make your home as accessible as possible so your partner can move around comfortably and safely.
Being a caregiver can be emotionally exhausting. Some days are much less stressful than others; sometimes, being a caregiver can take up your entire day. So, taking care of yourself goes a very long way. It took me a long time to understand what that meant. For me, this means finding MS free zones to live in that take me away from thinking about MS. That can manifest itself by taking a ten minute break or a two hour break. I regroup in several ways: going out to lunch with friends and not discussing MS, walking my dogs in the woods, cooking or baking, gardening, and meditating. If I don’t find time outdoors, I take time indoors to accomplish something that makes me feel whole again. It can be whatever you find that keeps your mind off of multiple sclerosis. That is different with everyone, but these times replenish your soul and are very important to avoid future burnout.
Emotional well-being may also be in the form of rituals you may develop every morning or evening that ground you when you wake up or go to bed. It calms your life down and centers you. It doesn’t take long, but the rewards of a little “me” time can go a long way.
There are also times when you just suddenly need to separate yourself from a situation. In that case, taking a five or ten minute break can help tremendously – it doesn’t have to be complicated – just enough time to step away and go to a “happy place”. These times will occur intermittently during the day or week, and you should not feel guilty for distancing yourself if you need to regroup. The short-term emotional ups and downs will occur and pass in time. Meditating has helped me bring more awareness to my changing feelings so I can redirect quicker when I’m out of sorts. Sometimes, just sitting and writing or drawing in a journal can help, too.
Sometimes you just need to ask for help. As caregivers, I believe we think we can do it all. I have learned that there is no shame in asking for help. Friends and neighbors want to help, so take them up on their offers. They will feel better, and you will too. They can bring food, sit and chat, help move furniture, or do whatever would help you or your partner.
I have also found that being a caregiver support group member has helped me in many ways. We learn from each other, support each other, and offer understanding at all levels. Other caregivers can give advice and have knowledge that you don’t. I have found that I need them as much as they need me. When I initially started with a group over 20 years ago, my husband could still walk, travel and work full-time. Now, he is much more sedentary, and many of our past group conversations are helping me move forward in our situation as it continuously changes.
A professional therapist can also help you bring balance to your life. We tend to worry about things we can’t control. Processing anger, fear, loss, grief, and such big emotions are often difficult to do by oneself, and a therapist can be of huge help to you. Those feelings can be overwhelming, and learning to manage and stay ahead of them can be very helpful.
At some point, respite care may need to come into play. Having a list of possible caregiver organizations or even respite homes for extended periods may help if you need to take a day or more away from your partner. Being proactive in this case can be very useful.
Being a caregiver can be, at times, very lonely and isolating. I worry about life changes that I have no control over, and many of our friends don’t understand what I am feeling. They don’t necessarily understand what it means to lose the emotional and physical life you’ve once had with your partner. These daily, weekly, monthly, and yearly losses are great and keep coming at you.
So, I’ve learned to be good to myself, trust myself, pace myself, and take time for myself. I embrace change because it’s easier than fighting it. I can’t control everything, so I break old habits and embrace new ones.
