Caregivers of Idiopathic Pulmonary Fibrosis Patients Take a Breather
Education and Advocacy Idiopathic pulmonary fibrosis (IPF) is a chronic and ultimately fatal disease that’s characterized by a progressive decline in lung function.
As a relatively unknown disease, there is less public and medical awareness of IPF than there is of more common conditions. Raising awareness of IPF will play a big part in helping the estimated 10,000 to 15,000 Canadians who suffer with this debilitating and
Learning to live with IPF
Barbara Barr’s experience with IPF began four years ago. The 63 year-old from King City was initially diagnosed with Interstitial Lung Disease (ILD) after tests indicated that she had serious lung damage and scarring in the peripheral area of her lower lobes. Barbara had suffered symptoms back in 2005 and 2008 that led to cardiovascular and pulmonary workups and had a CT scan in 2011, but it wasn’t until she underwent a biopsy in September 2012 that Barbara was given a definitive IPF diagnosis.
“My clock has been slowly ticking louder and faster over the last four years,” says Barbara. “My ability to do things as fast and for as long as I used to is substantially diminished. While I have no problems breathing while sitting or at rest, for the last 20 months, I have required supplementary oxygen to do most other activities.”
Huge impact on life
IPF dictates that Barbara be on oxygen therapy 24 hours a day, and she is seeing an increased need for oxygen during activities such as walking and climbing the stairs. Because of her disease, Barbara is limited in the time that she can spend away from her home.
“Living with someone who has IPF is a life changing experience for both of us,”
“Although young enough to still be contributing financially to our household, I cannot work outside the home and right now that has the largest impact for me,” says Barbara. “But I’m still able to look after my personal needs, to drive, to shop, to cook, and to do housework and to have some fun. Living your life is important!”
Malcolm by her side
Barbara’s husband, Malcolm Haylock, has been a rock throughout all of Barbara’s struggles with IPF. As with many spouses whose partners fall ill, Malcolm has become Barbara’s primary caregiver. “So far, knock on wood, my need for Malcolm’s care hasn’t been too great outside the normal participation in a marriage,” says Barbara. “There have been three times where I’ve needed Malcolm to do just about everything and thankfully they were for short periods of time.”
During a recent trip to Quebec, the importance of the partnership was really brought home to Barbara. Malcolm brought Barbara food, changed oxygen tanks and did many other tasks so that Barbara could conserve energy and fully participate in the conference. “Living with someone who has IPF is a life changing experience for both of us,” says Malcolm. “Hearing Barbara struggling to cough up fluid from her lungs, while gasping for air several times a day is both disconcerting and stressful.”
The Canadian Pulmonary Fibrosis Foundation (CPFF) has created the Take a Breather Caregiver Recognition program, an annual campaign which recognizes and rewards the hard work that caregivers do to keep their loved ones happy and healthy. “A caregiver of an IPF patient is nominated for the program, and we also ask that they provide a one or two page description about why that caregiver deserves a breather,” explains Robert Davidson, President and Founder of the CPFF.
From the nominations, ten caregivers are given $1,000 towards anything that will allow them to take a breather. “Quite a few spend it on their homes – for instance, one winner wishes to fix up her house that has been neglected during her husband’s illness while she cared for him, one winner is going on a yoga retreat, and another wants to go for dinner at their favourite restaurant,” says Davidson.
By raising awareness of IPF, we can start to make life better for those affected by the disease. Increased awareness will improve the prognosis for sufferers and relieve pressure on caregivers, who play such an important role.
“Malcolm being Malcolm means I can be me, doing what I have to do without feeling guilty,” says Barbara. “He encourages me and provides the firm foundation upon which I gain my strength.