The caregiver burden is lessened by meeting others like us
Sharing our stories goes a long way toward making us feel less alone
“I wake up panicking and find it hard to unclench the ball of anxiety tightening in my chest.” — Melanie Pearson, from her first blog post about caring for her brother with Huntington’s disease.
I understand Melanie’s feelings. Huntington’s has also taken the lives of my dad, grandad, and great-grandmother.
Melanie and I were introduced here in Britain by John Gregor and Justine Barkas, the educational lead and regional care adviser, respectively, of the Huntington’s Disease Association. They asked us to join them in June for a webinar to discuss our roles as carers and our accompanying feelings. The audience was able to take part and ask questions.
We had a chance to meet and talk twice before the broadcast. I felt an instant connection with Melanie and was at ease in her presence. So many of her experiences and emotions aligned with my own, and we’ve both tested negative for the disease.
I can relate to what Melanie wrote in her blog (which is no longer online):
“I worry about Nick [Melanie’s brother] all the time. All the time. How much worse he seems to be getting, there seems to be something worse every day.
“Nothing really eases this anxious feeling except getting up and just doing something. Usually the same small, repetitive, endless, blooming tasks, like wiping the toothpaste splats off the mirror or replacing the loo roll, no one else does. But there is a perverse satisfaction in tidying away their traces. At least they’re things I can do something about.”
Melanie has lost her mum and brother to Huntington’s disease. Her dad cared for her mum while Melanie cared for her brother. She went on to write a book, “Somebody Up There Likes Me,” to describe her journey as a carer.
Overcoming self-doubt
Like me, Melanie felt the need to document her caregiver life so she could, in her words, “offload.” She felt that if she shared her story, it might resonate with others and help them feel less alone. She’d felt alone herself. When she and her brother were young, only medical journals gave them information about the disease; they heard no personal stories. That’s one of the reasons connecting with others in the Huntington’s community became important to her.
The webinar speaks of Huntington’s carers as a “silent army.” In the U.K., over 6 million people serve as unpaid caregivers for all types of illness and disability. Their work affects their finances, employment, health, and well-being. In Huntington’s families, many carers have a hereditary risk of the disease themselves, adding an extra layer of stress and complexity. Further, these caregivers may watch over multiple family members.
Melanie and I talked about the common threads among all carers, including self-doubt, shock, denial, frustration, anger, sadness, and guilt.
“Guilt looms over my head like a permanent rain cloud,” Melanie’s blog read. “I want to make his life as happy and loving as I possibly can and yet nothing I can do will fix it. Whatever I do will never be enough. I worry too that caring fills my head and takes up all my available energy and it’s becoming very hard to have any kind of life outside this bubble.”
Melanie wrote that when she first realized she was a carer for her brother, “It was like having a bucket of ice cold water poured over me.” She then thought, “It all depends on me.”
I, too, felt that heavy burden, being the only one to care for my loved ones. Before the term “carer” was casually applied to me, I’d simply seen myself as a sister, mother, and daughter. Afterward, I felt moments of self-doubt. Was I good enough? Was I going to mess up?
There’s no handbook, and often no previous experience, to rely on. Yet here we were, fulfilling the role.
Caregivers may offer remote financial and administrative support, such as organizing and planning care. In this situation, they may not view themselves as a carer because they’re not providing regular hands-on care. But they should.
Melanie and I shared feelings of guilt for the times we were away from our own children when they were young. On the other hand, we also felt guilty that we couldn’t do more for our family members with Huntington’s. Essentially, our loyalties and time were constantly being torn.
The role of a carer isn’t easy. In the webinar, we advised all caregivers to take a break, even if it’s just 10 minutes to themselves each day to do something they enjoy. We also encouraged them to accept help, even if they don’t think they need it. We would’ve liked this advice.
Are you a Huntington’s caregiver? Please share your thoughts and tips in the comments below.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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Comments
Ghada Zayed
Being a caregiver is very difficult, you never feel satisfied or you are doing well, because every day you face a different problem you have to deal with it. Moreover the mood swing makes your life inhell, you never know when they are complaining for real or just not in the mood.
I always have to be alret and feeling remiss doesnt give me ability to live normal life 😪.
However , when i put myself in their shoes i feel ok and feel sorry for them.
Rebecca Field
Dear Ghada, caring for someone with HD is hard. It is a complex condition and throws up difficult problems for carers to navigate on a daily basis. Your feelings are shared within the HD community. I feel your love and empathy that you have for the person that you care for. I am sure that they are lucky to have you as their carer.
Bernadette
As a caregiver I have very little life of my own. My daughter moved in with me about 5 years ago. There are no other family members/friends to offer any breaks. Her father died of huntington's about 5 years ago. We were divorced... he refused testing and was making very poor choices. Self preservation became my priority. My daughter and I are are essentially alone. I am 71. All the plans I had to paint, write and a bit
of travel after retirement have vanished. My energy and creative levels are way down. Nonetheless, we are managing very well, surprisingly well. For how much longer, I don't know especially because chocking is now becoming more prevalent. There are no government or community programs to assist in any way. Our rent is somewhat controlled yet it just jumped by 150.00 per month to cover landlords maintenence on the building. My greatest concern; what happens to my daughter if I pass before her. Homes are few and very poorly run. Our greatest blessing is our present health, a car to get around to appts and shopping plus we can afford gas and insurance. We also have a wonderful balcony with plants I love to care and fuss over. Hummingbirds visit often from the woods next to us, along with coyotes, bears, owls, crows
woodpeckers, possum, deer, squirrel and raccoons. I am blessed to have a few good acquaintances and a couple of life
long friends to chat with and meet up for an occasional lunch. Regardless of the struggles we are very fortunate to have a positive living situation and each other. Hope and mercy to the less fortunate.
Rebecca Field
Dear Bernadette, I can relate to your feelings. I felt my own life slip away, whilst I devoted time caring for my dad with HD and raising my children. I do hope you have a social worker, neurologist, or local HD charity that may be able to support you.
Iz Cakrane
My Patricia was diagnosed with HD age 57 in 2002. Now age 79 she moved to an assisted living facility with memory care. It has been devastating to watch a highly intelligent, creative women progress through this disease. She now needs 24/7 care that I am not able to provide. She is receiving the appropriate care for which I am very thankful. She is close by so I visit daily. Both her physical and mental capacity have been damaged significantly. I dread what the future holds. One day at a time is my mantra.
Rebecca Field
Dear Iz, one day at a time is definitely a positive mantra. I am glad you have found a good care facility for your Patricia. It is so sad to watch their decline. My dad was also an intelligent, creative and wonderful person. HD is a hard disease to navigate and watch our loved ones go through.
Sharon walker
I am caring for my 47 year old daughter; so that her husband and children can work. They are 4 hrs away, and its been a yrear this month. Today has been especially difficult. Cheri was up at 7:30 and after i fed and showered her, she has picking up things, breaking them, bumping into the walls and furniture knocking things offf. The refrigerator is tied shut wit a bungee cord and i felt ill this morning when i smelled gas. She had bumped into the stove knob, because i forgot to remove it. I had to watch her constantly to keep her from breaking more. She would get halway on the bed and i had to pick her up and get her onto the bed to keep her falling off. She is very heavy, and i picked her off the floor 3 times. Thankfully she doesn’t break anything when she falls. She does have sores and bruises. Finally i put her on the floor on a mattress. She can’t get up; so i had a little rest. I hurt her feelings, but it was all I could do to keep from loosing it. Lots of emotions.
Rebecca Field
Dear Sharon, there are a lot of emotions that carers go through, when caring for someone with HD. The issues you highlight, and are experiencing, are so tough on you and exhausting. I do hope you have some support through a charity or with medical professionals.
Linda
Struggling with bouts of uncontrolled anger towards neighbors and family members. Embarrassing and scary. Not sure where to go for help!
Rebecca Field
Dear Linda, we too have had anger and aggression from our family member with HD. We get support from a regional care advisor from the Huntington's Disease Association, here in the UK. We also have a wonderful social worker. Our family member also has an amazing personal assistant, who uses person centred care techniques that reduces their anxiety and anger. It allows them to still feel in control of their life which,
in turn, seems to help better control the outbursts of anger.