The Canadian Pulmonary Fibrosis Foundation has chosen the 2015 recipients and each week will announce one of the ‘Breather‘ recipients who will be sharing their story with us.
The ‘Take a Breather’ Caregiver Recognition Program is a unique program focused on recognizing the significant role of those who care for someone living with pulmonary fibrosis (PF). This program has been made possible through an educational grant from Hoffman-La Roche Limited.
The nine (9) 2015 caregivers chosen will receive a “Breather” — a gift that lends assistance or provides respite for those who graciously put others before themselves. Valued at $1,000, each Breather will honor those who respond to the unexpected needs, and share in carrying the weight, of those living with PF.
On November 3rd our first recipient was announced. Click below to read the nominations for our recipients and their personal stories. Be sure to check back weekly or follow the CPFF Facebook Page.
City: Stratford, PEI
Nominated by: Garth Matthews, Husband
Garth and I started dating in 2004. We were both on the same page in life and we never looked back. We both retired early Garth was 54 and I was 56. We didn’t have a lot of money but we had enough to live the lifestyle we wanted. We bought an older R.V. and we had 5 glorious winters south of the border. We are so happy we did that.
Garth was diagnosed with IPF and Emphysema in 2011. It really didn’t affect him much at first but then his breathing got worse as time went on. Things changed for us big time in 2013 when he had to go on oxygen 24/7. That was the end of our RVing. That was okay as long as we were together and we made the best of being back in the snow.
Things changed for me but Garth was still able to do a lot of things around the house and go get groceries etc. even with the oxygen. Garth continued to play in his band and he also played pickleball with the oxygen strapped on his back. It was more work for me to carry and set up his band gear etc. It was great to see Garth still having such a great quality of life even on oxygen.
His needs became too great and this year he didn’t play in the band and didn’t play pickeball either. We went to Toronto in March of this year to be assessed for a transplant. His lungs were getting very bad at this time. We had to drive as he couldn’t fly because of the high amount of oxygen he is on. This was a bit stressful for me at times getting in and out of motels etc. We were both devastated when we did not make the transplant list. He will not be eligible for a transplant till 2019. I noticed while in Toronto his lungs were getting worse and I was very happy to get to P.E.I. and have him home.
Since coming home Garth had to get another home concentrator so he now has 2 on at all times. If he has to go from one room to another he has to put on a portable also. This puts him at 25-30 lpm. So I have machines and portable tanks all over the house for emergencies. His lungs seem to be getting worse and our going out of the house is becoming a much bigger challenge with so many tanks and machines. It can be quite stressful trying to make sure all tanks are working.
He is still in good spirits and we continue to look for things that might make his breathing easier. I am very grateful that I have my health and can be here for Garth as we journey through this life.
Being a caregiver can be a gift as it teaches you to make the most of everyday. It teaches you gratitude for your health and the many gifts you have. Just being able to breath without any aid is such a gift and you realize that by watching someone struggling for breath. It can also be very stressful, tiring and discouraging. I guess it is like the glass that is half full or half empty.
The breather experience will lessen the load for a bit and I sure look forward to it.
I will use the breather to have meals cooked for us. Garth used to cook a lot but is not able to anymore. I do most of the cooking now. Having meals cooked for us would give me more time to do something else. I could even relax and put my feet up while waiting for the meal to come. Wouldn’t that be nice. Thank you so much.
City: Scarborough, ON
Nominated by: Leslie Jennings, Daughter-in-law
Throughout all this, Marion, his wife for over 60 years, has been by Jack’s side. As he has become more debilitated by the disease, Marion has become his primary caregiver. No mean feat for a tiny, 84-year-old lady, who is battling her own aging challenges (serious arthritis in her hands and knees, just to start). Their three boys and their partners: John and Luce, James and Leslie, and Jay and Howard aid her as they can, but Jack and Marion are committed to remaining in the home they built together.
We are in the process of looking for ways to aid Marion, to lighten her load. The boys do heavier chores, Jay is on top of the garden, Luce is always ready with a home cooked meal or a drive to the hair dresser and Howard takes Marion shopping. But Marion is fierce in her insistence that she needs no outside professional help, while staying in the family home where Jack is most comfortable. This decision means she is running constantly, caring for her husband and keeping up their home. Jack has always been involved in helping with these tasks, and now this additional upkeep is telling on her health. Still, her primary concern is her husband.
We know this situation is stressful for her – it would be for anyone. But we of course worry about not just Dad’s health, but Mom’s as well. We tease her about her attention to details, her need for her routine to be just as it always has been. But her life is changing. She holds all the pieces together, stoically. This lady could use a break. Moreover, she deserves some recognition for all she does. So I’d like to nominate my mom-in-law, Marion. I know the program is geared toward the PF sufferer nominating the caregiver. I know if Jack were feeling up to it, he would. Marion means the world to him. So I’m doing it on his behalf.
Leslie Jennings, on behalf of Jack Wilson and the Wilson family.
As it is, every day I hope that Jack won’t get worse. I hope for a good day. Today Elections Canada came to the house so Jack could vote. That was great. It was a good day.
I’ve never really thought about getting a “break”, I just don’t think about it. I enjoy having my family around. That’s a break. Having a cleaner or a stair lift would be a break for the arthritis in my knees!
City: Millet, AB
Nominated by: Raymond Bosse, Husband
Shelley has stepped in and taken over all the things I was once able to do as well as doing her own things and also working outside of the home. Shelley seems to be running 24/7 with her work, keeping up our home, grandkids, keeping our four kids informed on everything that happens and looking after me. Not sure how she is doing it but she never stops. Some days I look at her when she isn’t watching me and she looks so tired. I wish I could just put my arms around her and hold her to take some of the stress off her shoulders.
Shelley comes to every doctor appointment and every blood work appointment without even a thought about herself. She is my rock, my heart…she is my everything. I know that without her I would not be able to go through this. We know we have a long road ahead of us but with her at my side I know I will be fine and well looked after until my end.
I would really, with all my heart, want to thank you Shelley for loving me and being my rock. I only hope that when all is done you can just rest easy and know you did everything possible to help me through this horrible disease.
On June 4th of this year he was put on oxygen full time. He seems to continue declining quite quickly but this has not put a damper on his spirit. Raymond continues to talk about dancing at our grandchildren’s weddings. His attitude keeps us all going and thinking positively.
With his condition now, he is unable to go and do the things he use to do and it now falls on me to do those things. I know, and also see in his eyes, that he feels badly that he cannot help me. I am his caregiver and as long as he is with me we can deal with anything that life throws at us.
Looking after Raymond has taught me many things; the most important is family and spending time with them. As the saying goes, “take time to stop and smell the roses” as we have found out, that things can change very fast and you run out of time.
Making time for family, friends and most importantly, making time for us is what has to happen. As Raymond goes through this horrible disease, he knows that I am by his side all the way. As we always said, we are soul mates.
City: Vancouver, BC
Nominated by: Cedomir Brcic, Father
I want to nominate my daughter, Vanessa Brcic.
Since I was confirmed with my diagnosis of IPF at the end of January 2015, my daughter has been the calm, encouraging presence.
My daily physical needs which are significant, are lovingly provided by my wife Gloria. I cannot begin to describe the Herculean effort she puts in every single day to ensure I am looked after. Not only the things she has always done – cooking, cleaning, laundry, driving and so on. She has now added tending to the lawn and car maintenance as well.
However, there is a whole emotional, psychological and spiritual dimension, which I never realized is so critical to maintaining an attitude to continue with life and actually learn to enjoy it. My daughter is a family physician in Vancouver but experienced a serious traffic accident while riding her bike. This has impacted her significantly and as a result she has developed an amazing adjustment and coping attitude where her life seems richer than it was before. I believe this has given her many marvelous lessons that she is passing on to me and which are so necessary and valuable to me.
She travels across Canada to be with me during critical appointments, including my first assessment tests at the Toronto General Hospital last month. She has taken it upon herself to speak to my respirologist and continues to give her support and encouragement. She sends packages in which she includes wonderful and encouraging books and CD’s on meditation and mindfulness, as well as other issues dealing with changes in life and the resulting challenges. Her gentle yet caring and encouraging manner give me motivation to do much that I would normally be reluctant to do.
In spite of her own life issues, Vanessa manages to give priority to mine even from thousands of kilometers away. I am blessed to have her and my wife in my life during these challenging times.
I have been grateful for the exceptional care my dad received from the pulmonary fibrosis and transplant clinics, and the CCAC. As a family doctor who is used to advocating for patients, I didn’t need to ask for more than my dad was already receiving from his health care team; the care was outstanding without having to push or ask for more. This was an example of how our public health system works well, and I was feeling grateful that his team of health care providers were there for him, which allowed me to more of a daughter than a doctor.
But amongst the busyness of biomedical care, I saw how my dad’s uncertainty and anxiety about his illness was deeply affecting him. With limited energy, all the appointments, physio and activity – even self-care – took up so much space that the suffering and fear underneath didn’t have much opportunity to surface. I saw how hard it was for him to balance grief and hope, and live well with an illness that would eventually, probably, take his life. I think the most important role for me was to offer a safe space to talk about emotions and fear, and also help teach my dad about mindfulness. With an uncertain future, thoughts can carry a person away to a place of tremendous worry that can make anxiety and shortness of breath even worse. I saw this in my dad, and tried my best to teach him mindfulness strategies, and introduce him to meditation.
Since his transplant, he has been able to reciprocate the same advice to me, and has reminded me that although we don’t have control over the external circumstances of life, we do have control over how we react to them – our internal circumstances. It is always possible to find peace and calm there even in times of stress, pain, and uncertainty. That is a lesson that my dad and I will both carry forward in our lives.
Seeing a loved one suffer with anxiety, uncertainty and helplessness can be heart-breaking. Finding the strength to be with him during the darkest moments was the most meaningful experience I’ve ever shared with my dad. Now after his transplant, both of us are recovering and restoring ourselves. I appreciate the opportunity for me to do some restorative and healing work for myself so that I can renew my ability to be there for my dad and also for my patients who are struggling through dark times.
City: Smith Falls, ON
Nominated by: Ron Bernicky, Husband
From my first diagnosis in December of 2011, to our relocation to Toronto, to my lung transplant, and finally our move back home to Smiths Falls, ON, my wife Linda, has been by my side.
We were living a quiet life in a home, which had been in my wife’s family. When we found out we had to relocate to Toronto, sadly, we had to sell it. My wife never gave it a second thought. She also left her job too. She worked day in and day out to find us a place to live in Toronto, moved our stuff there with friends and family and made us a home there. “Anything for you”, she said.
Besides my Donor, who is the ultimate hero in my life, my wife runs a close second.
Linda took such good care of me before, during and after transplant. She sacrificed herself, her time and sometimes her own peace of mind!
If anyone deserves a breather, it’s my loving wife, Linda.
I have been with Ronnie for 15 years and married to him for 9. In 2011, while on our 5th anniversary trip to Boston, Massachusetts, Ronnie was coughing constantly and getting short of breath. After some urging from his two sons and myself, he finally agreed to go see his doctor. The rest, as they say, is history. Ronnie has new lungs and a new lease on life. The last four years have been difficult, don’t get me wrong, but our time in Toronto and on the waiting list was well spent. We now have so many new and very special friends to share our ups, downs and love with. Living with pulmonary fibrosis, as a caregiver, can be one of the most difficult jobs to do. There was so much I wanted to do to help, but had absolutely no control over anything.
A very wise woman once said to me, “Don’t ‘wait in Toronto for lungs’, rather, ‘LIVE in Toronto while you wait”. Words to live by if you must relocate.
The photo I submitted is of Ronnie’s and my first Christmas in Toronto. We were at Nathan Phillips Square for the Christmas Tree Lighting. It was a beautiful night and there was lovely music being played, and everyone was watching the band. Ronnie asked me to dance. So there we were, in a crowd of people, him with his oxygen strapped on his back. We were the only ones dancing and I remember feeling such a love for him and knowing we would get through this.
About being a caregiver to someone with pulmonary fibrosis, Linda says, “it is, undoubtedly the hardest full time job anyone would ever want, but I would do it all again for the love of my life, it’s been quite an adventure. I’m so grateful! And so moved that even after everything Ronnie has been through, he still thinks of me.”
I have decided that I really, really want a little back porch/mudroom on our home.
We downsized quite a bit, since selling our old house, moving to Toronto, and then buying our new house and moving back home, and a porch would definitely give us more space in our living room. Our local carpenter is willing to do the work and is even giving us a few little extras while still staying around the budget of $1000.
City: Summerside, PEI
Nominated by: John Cousins, Husband
I would like to nominate my wife, my best friend, Judy for the “Take a Breather” caregiver recognition award.
We were celebrating 50 years of marriage when I was diagnosed with pulmonary fibrosis in 2011. Our 3 children were grown and married, blessing us with several grandchildren. We had many family and friends. Retired, with the exception of some handyman jobs, there was more time to travel. We enjoyed our RV trips throughout North America. Our summers were spent at P.E.I. campgrounds and beaches, around evening campfires with family and friends. A hard worker by nature, I enjoyed being busy and active. A healthy lifestyle was important to us. God and our faith were always at the center. We had lots of plans.
But now, facing this incurable disease, we searched for ways to keep my body healthy and maintain the quality of my life. Learning more about PF through various websites, the Canadian Pulmonary Fibrosis Foundation, and medical professionals, our journey began…Judy beside me each step of the way; my companion, my advocate, my life partner…in sick times and in health. Judy is asthmatic and is very aware of the struggle of breathlessness. Our plans now revolved around doctor and clinic appointments, tests, scans and a lung biopsy. I was very fortunate to be chosen for a clinical trial out of the Halifax Health Centre for the third phase of the drug OFEV which in June 2015 was approved for use in Canada. This involved many trips to Halifax…Judy always at my side. I am also very thankful for my family and friends, great doctors, RT’s, and home care nurses.
There have been many changes over the last 5 years. I am now on oxygen full time. It has been difficult but necessary for me to “let go” of my jobs and many of the things I enjoyed so much. We had to sell our RV (a sad day). But Judy has been resilient and strong, ready for the 24/7 challenges of being my caregiver, my wife, my nurse, my prayer partner, my cook, my housekeeper, my bill payer, my errand runner and my yard worker. She has seen me through the coughing spells, the wakeful nights, the GI upsets, the unhappiness even when her energy and health have been depleted. She has missed important events and fun times to be by my side.
We now embrace different plans; enjoying the simple pleasures in life which often times are the most important ones. We practice forgiveness, compassion, and love. I know I will never be alone with Judy beside me, “each breath of the way.”
Hello my name is Judy Cousins and I would like to thank you for accepting my hubby’s letter nominating me as being his caregiver for CPFF’s “Take A Breather”. I actually had no idea he was doing it, and just to read his letter meant so much to me.
Our hometown is Summerside, Prince Edward Island. I am 71 years old and retired. We were a very active couple and being healthy has always been our goal. We married as childhood sweethearts, had 3 beautiful children who blessed us with eleven grandchildren. PF is not new to our family. Out of ten children in John’s family, five had PF. Two have passed on. John was at their side.
His being accepted to clinical trial for the drug OFEV has for sure held his disease back. For many years I suffered with severe asthma and he was always there for me. So to look after him has been my pleasure, although very hard and tiring. We have wonderful family and medical support. Next to having a great faith, my other saving grace has been that I go once a month for either Bowen or Meditation Massage. It is not covered by our health plan. I wanted to stop these sessions because of finances but John and my family insisted I continue. This “breather” is so calming and relaxing and I look forward to it once a month. The $1000 gift would allow me to go monthly for a year or 14 months. These treatments relax me and my RMT helps to keep me focused.
The picture I have chosen is one taken in late July this year. John and I travelled in our motor home after retiring and spent many hours at beach fronts and campgrounds. We both loved walking on the beach and being in the ocean. His wish was to go one more time to a beach. Our daughter and her husband took us with lots of oxygen in tow. The Provincial Park allowed us to drive right to where we could get on the short boardwalk. We carried his larger tank and took the small direct flow one to get him to the water. This picture is John and me in the water. My reason for choosing this is to show PF patients what can be accomplished with lots of support.
Our choice is to live and breathe the best life we can for as long as we can.
City: Aylmer, ON
Nominated by: Melanie Ayerst, Daughter
I would like to nominate my Mother, Deb, for the Take A Breather award. My grandfather (her father) was diagnosed with PF. Since the day he was diagnosed she has been so amazing. Every appointment, anything he needs, she is right by his side. My grandmother was diagnosed with bladder cancer as well. So my mother takes care of both of them, making sure that their every need is met. She is my hero. Seeing my grandfather suffer is heart wrenching. He was always so strong, so full of life. This disease is terrible. He likes to go for coffee outings several times a day. My mom usually goes with him. She is so strong. She is the glue that holds us all together. It can’t be easy. He is suffering every day. So emotions run high. But she doesn’t let it show. They are her parents and she will fight and do whatever it takes to make sure they are cared for. To be told that the only other option for medication will cost $40 000/year is an awful feeling. I feel that my amazing Mother deserves this award for being the best daughter and mother in the whole world. She is so selfless. Always putting others first. I would love to be able to give back to her, I know I can never repay her for all the amazing and wonderful things she has done for our family. She deserves to “take a breather.”
My Dad was having trouble breathing. We took him to a specialist in February 2014. They did some x-rays and breathing tests. The results came in and we were told he had IPF. Then the doctor explained what the disease was. I felt like someone had hit me with a brick. I felt sick to my stomach. My poor dad is very independent, therefore letting me help him was a struggle. He didn’t want to be a burden on me. I told him “dad, you have raised me, always been there for me, now it’s my turn to help you in any way I can.” His biggest fear is being put in the hospital, and not being able to come back out. I try to reassure him that won’t happen. I will do everything in my power to keep him at home. He enjoys going for coffee every morning, so I pick him up at 9am, seven days a week to take him out. I’m there for him in every possible way I can be. On December 28th, 2014 it was my birthday. I could tell he was struggling to breathe (he will never admit when he is struggling). So I took him to the hospital and they put him on oxygen right away and did some x-rays. They thought he had pneumonia. His lungs are so scarred they couldn’t tell for sure so they hooked him up to an IV and treated it as pneumonia. I was up at the hospital every morning at 8 am and would sit with him all day and night. He came home on New Year’s Day on oxygen and has needed it ever since. Even at home. This seemed to be a turning point in his life. He got worse, he coughs every morning for about an hour straight and he chokes trying to get the stuff out of his lungs. It takes a toll on him more and more. It breaks my heart to see him struggle so much and I can’t do anything to help, I feel helpless. We used to go for walks all the time, now he can’t walk anywhere and he is out of breath.
My mom was diagnosed with bladder cancer as well. So I am helping them both the best I can. She also has to go in for a hip replacement at the end of October 2016. She tries to help but can only do so much as she lives in extreme pain every day. I take them both to all their doctor appointments, look after their home inside and out. I will do what it takes for them to be able to stay at home. It’s so hard for me watching my parents struggle, and not being able to make them better or take away their pain. To me, the hardest part of IPF is the unknown. I think about my Dad day and night. When I try and sleep, it’s difficult because I worry about him so much. My wish is to be able to spend many more years with my Dad, with both my parents and to have them not struggle so much. I want to thank the CPFF for bringing awareness to this deadly disease.
With my Take A Breather award, I plan to put some new things in my home. My home is my hobby, I love to decorate for the holidays, re paint, re arrange etc. So I will be purchasing some new paint, light fixtures etc. for my home. With being a full time caregiver, it leaves little time to do things around my own home. I also plan to take my family, my husband, my parents, my daughter and son and their families out for a nice, relaxing supper so we can all enjoy each others company!
City: Maple Ridge, BC
Nominated by: Derek Boniface, Husband
My wife Dianne worked at the RCH for many years and had an injury that was misdiagnosed and for many, many years suffered with pain. Three years ago she underwent a surgery for her right shoulder and a year later it had to be redone. Unfortunately, a month later she had a fall in the US and had to have another surgery on the same shoulder a few months ago.
I was diagnosed in 2013 with IPF and through all this pain she has been at my side taking care of me and my needs and neglecting her own. She makes all the appointments that I have with my GP, diabetic clinic, eye specialist and IPF doctors. She has knowledge of medications and procedure that has been a real help in my care. She is my caregiver, my nurse, my secretary, my chauffeur, my cook and housekeeper, my wife and most of all my friend. Without her I know I would not be able to keep up with all the calls and things that have to be done in my life regarding my health and well-being.
She has always been there for me and now with this debilitating disease she is still my rock. I could not have asked for a better partner and caregiver but I wish it had been under different circumstances. To me, she is the best caregiver that anyone could have but it is me that is the lucky one and for this I want to nominate Dianne for the recognition program.
My name is Dianne Boniface, I am 65 years old and my husband, Derek will be 85 in February. I am honored that he has nominated me for the “Take a Breather” Caregiver Recognition Program.
Two years ago he was diagnosed with IPF, when we got the news we were devastated as he has always been healthy and active even though he is diabetic. The diabetes has always been under control partly due to his tenacity and my ability to make healthy, wholesome meals for him that has kept his blood sugars down.
We heard of the drug Esbriet (pirfenidone) and right away I wanted him to take it; I was not going to lose my husband to this disease and I did not want him to suffer. I contacted Derek’s lung specialist and his assistant had a representative/RN from lnterMune, the drug company that makes and distributes the drug, to contact us.
Esbriet was ridiculously expensive and BC did not cover any part of this medication so for three months we paid for Esbriet but after he began taking the nine capsules a day, the side effects took a terrible toll on him and I hardly recognized the man sitting across from me. He was like a little old man – he seemed to have aged in just a few weeks. He was lethargic, had no appetite, no spunk and no will. He just sat there falling asleep all the time.
I called the doctor and the lnterMune representative told them that he was no longer going to take Esbriet due to the side effects. After a few weeks he began to be his old self again but he had lost most of his sense of taste. He was so upset because he loved his food and I always make him exceptional meals because I loved to cook for him.
We went back to the see the specialist at SPH and he suggested going to a rehab exercise program and we found out that the local hospital had such a program for lung patients suffering from COPD and IPF.
He has been going ever since and he is a changed man. The exercise has done wonders for him and I have my husband back again. He started going three times a week but there were so many other patients that he is now going twice a week and I drive him and pick him up. We work around his schedule and he gets most upset if he has to miss a class.
Because of his loss of taste I try very hard to make meals that are tasty and flavourful, hoping that he can taste some of it; so I experiment in the kitchen.