NATIONAL CAREGIVER APPRECIATION WEEK
FROM NOVEMBER 6-12 2022
In celebration of National Caregiver Appreciation Week, we are sharing some inspiring stories and words
from our beloved community!
“Providing daily care and support to a loved one with ALS is a daunting task that requires a lot of energy. There are many pitfalls and the threat of burnout is ever-present. However, many caregivers do this knowingly. On this National Caregiver Appreciation Week, I would like all of us with ALS to join together in thanking them for their commitment to us.
The hardest feeling for people with ALS is to feel that they are too much of a burden to their loved ones. In my case, Jocelyn never made the choice to be a caregiver. ALS came into my life without knocking and he became one by force of circumstance. Sometimes I worry that the disease will get the better of him and burn him out. He is a cook, an apothecary, a nurse, a hairdresser, a driver, a secretary, an attendant, etc. He manages our day-to-day life on his own and makes our life work. He manages our daily lives and keeps our household running. The medical appointments and the care he gives me already take up a lot of time. In addition, he assumes all his new tasks without having received any training. He learns on the job, improvises and does his best. However, there is little room for error, especially when it comes to the more specific medical care, such as gastrostomy and ventilation equipment management.
Jocelyn goes out of his way to make my life easier. Our complicity is such that we don’t need to speak to understand each other. When I sometimes need to go to the bathroom at night, I am always amazed at how Jocelyn performs this ballet of movements without us saying a word. A series of precise gestures during which only our eyes communicate, guided by a solid trust.
Accompanying a seriously ill person means living in the shadow of this person, who receives a lot of attention from the medical profession and the relatives.
As the disease progresses, my husband realizes the magnitude of the task he is now taking on. With each loss of autonomy, he becomes more valuable to me. When I lose the use of a limb, he “reincarnates” that paralyzed limb, performing the actions that are now beyond my control. It becomes an extension of myself.
Obviously, I would be deprived of many opportunities to socialize, without the help of my love. He accompanies me everywhere, eager to satisfy me. He is completely and unconditionally selfless. Where I go, he goes. He is on the lookout for my every need and desire. I am so pampered! My life would certainly never have been the same without him. He is my safety net, he stands guard at all times. I feel infinite gratitude and love for him.
It is probably the greatest gesture of love that one human being can do for another, even at the cost of physical, emotional and mental exhaustion. Not everyone can become a caregiver and yet… they are there when you are not strong enough. They fuel your courage and strive to maintain your pride and keep your soul shining. They have my respect. They are irreplaceable. “
“My dad, Maurice, had ALS for 10 years. My sisters and I were his caregivers throughout that time.
He just passed away at the end of September and while he lived with the disease longer than most ALS patients, the extra time did not make it any easier to say goodbye.
Caregiving is an experience like no other. It’s exhausting, but it’s also fulfilling. It strengthens your relationship with your loved one while simultaneously making you resent them. You cry a lot because life is hard but you find moments to smile with them because life is just too short. It’s bittersweet.
Here are a few things I learned over the past 10 years:
- Caregivers are capable of so much more than we ever thought possible. Sometimes we underestimate ourselves but, really, when we’re in the thick of it, we’ll surprise ourselves. If I had known 10 years ago what these years would feel like, I never would have seen myself making it through to the other side.
- With ALS, anticipatory grief may just be worse than regular grief. Every few months, weeks, sometimes days, there was another loss that hit hard. I will never forget the first time I had to feed him. That was a tough one.
- People won’t get it and while that’s wonderful because it means they haven’t experienced caring for a loved one, it sucks because the feeling of isolation is intensified. On the flip side, you can feel connected to so many people that you’ve known for a short time in person or those online that you haven’t even met because you have that shared experience. Caregivers need to stick together, on or offline, to remind each other they are not alone.
- Have the hard conversations. It’s so important to truly understand the wishes of the person you’re caring for regarding their end of life. It’s equally important to let them know how much you love them. These topics open up the lines of communication and allow for some beautiful talks as well as getting all the important information down. I’m grateful that my dad shared all of his wishes with us and that we could honour them up to the end.
- Find support! For your loved one and also for you. The ALS Society of Quebec offers so many resources to ALS patients and their families. When my dad was diagnosed 4 years in, they came through for our family by offering resources, support and straight up kindness.”
“I’ve been with my wife for 35 years and since my ALS diagnosis 2 years ago she has been helping me as a caregiver. You can’t even imagine how important a caregiver is to someone with ALS. Our caregivers are our arms and legs. At some point in the disease, you have to accept that you can’t do things the way you used to, that you need the help of your caregiver. It’s upsetting, but you have to surrender to that. Some times are more difficult than others. For example, I used to do a lot of the housework around the yard, pool, etc. Now, my wife has to do a lot of the housework. Now, my wife has to do it because I can’t. Before I had ALS, I was an entrepreneur, I had a family business with my wife. A business that was doing very well. Now my wife has taken over because I can’t work anymore. She also takes care of all the tasks at home. We blame the disease, that’s for sure. Our caregivers don’t have to go through this, don’t have to pay for it. But without her I couldn’t do anything. My wife is pure gold.”