The difficulties of life with ALS

“My dad had to take on the role of two parents so there was four kids relying on one parental figure for everything, so I guess things stopped running as smoothly as they usually had before.” These are the words of 19-year-old Maddie Blondin, a student here at Durham College who is faced with the struggle of having a parent with a terminal illness. Learning that someone you love is diagnosed with a disease is not easy.

Blondin and her mother used to go for walks and out to eat. Now Blondin has to help her mother sit up and feed her.

Over time, the illness creates a whole new world, not only for the person battling the sickness but also for the family, even though they are not facing the illness physically.

Along with the illness comes adjustment, change and a whole new outlook on life. The carefree life that Blondin and her siblings once had as children was quickly changed. Blondin had to mature and become independent much quicker than she would have had her mother not fallen ill.

Having a parent with a serious illness can take a toll on a child. Children will notice their parents missing in the crowd at their soccer game or dance recital because they are at home caring for that loved one to make sure that they are okay.

Maddie Blondin found out that her mother was diagnosed with ALS (amyotrophic lateral sclerosis) seven years ago. She remembers her mom and dad calling her downstairs for a talk; from there they explained to her that her mom was sick and that things would begin to change around the house.

ALS or Lou Gehrig’s disease is a neurological disease that attacks the nerve cells that control the muscles we use in the legs, arms, and face. Over time, the muscles weaken and all voluntary movement is lost.

Only about 10 percent of those with ALS will survive for 10 or more years. Within 3-5 years from the discovery of symptoms, most people die with ALS due to respiratory failure.

According to vanierinstitute.ca, options for end of life care involve adequate support for the patient even from at home. The patient can choose to live at home during this process. This means they are closer to their family during the time that they have left. There is also much more time and space as opposed to family members having to travel a distance and being crowded in a hospital waiting room just to see their loved one. Blondin’s mother chooses to live at home. This gives Blondin’s family time with her, but also puts stress on the household.

The extra work and stress is often outweighed by positives. Choosing to stay at home gives the patient a sense of comfort and contentment during a painful and scary time. But it’s also scary for the family. “I know there are organizations out there for people who have a family member that does or did have a serious illness and need someone to talk to,” said Blondin.

Regina Galgay, who works as a personal support worker for the area of Durham Region, says that there are many resources for those who have family members that are dealing with a terminal illness. “As for myself and other PSW’s [personal support workers], we are open to respond and talk to anyone in the family with any concerns or help they may need.”

Having a loved one in such a position is scary, it becomes very real very fast. An illness can take an emotional, mental, and even a financial toll on a family, but discussing your options and conversing with each other may be the best way to cope and come together as a family.

Blondin was only twelve when she found out about her mother’s illness and looks back at the way her parents addressed thing as helpful. She explained that they helped her understand the illness and what was to come.

If you are dealing with a loved one who has a serious illness and have a child in the family, there are many different ways to communicate with the child to help them better understand the situation.

According to childcareresourcesinc.org, some of the best ways to respond to the child is to talk about how all-living things change and to explain we have no control over how things or people change over time.

For example, childcareresourcesinc.org suggests you can buy the child a daisy and watch the daisy grow then wither. Monitor how the flower goes from tall and yellow to frail and faded. This is the circle of life and reveals that nature takes its course.

Blondin says that she is in a good place with coping with this struggle and believes that this obstacle in her life has only made her stronger.

An illness in a family can affect the whole family, but it does not have to break a family. In a time like this, communication and understanding can be key factors to keeping a family together in such a painful time.

“As time goes on I grow as a person and I learn smarter ways on how to cope,” says Blondin.

With more information on how to cope with a family member who has a terminal illness, visit The ALS Society of Canada at als.net.

NO COMMENTS

LEAVE A REPLY