February 11, 2018 at 8:01 pm #11089
Caregiving for a loved one is probably one of the toughest roles out there, and unfortunately there is no instruction manual that comes with that role once your loved one is diagnosed. This is something my family has really struggled with, and it surely has shifted our family dynamics at times. If it would be helpful, I’d be happy to explain this more and to share what I mean about how we have struggled with people wanting to care for me since I was diagnosed?
I did want to ask though, because my main caregiver in my family often tells me that no one knew what to say to her when I was diagnosed. Plus, she didn’t really want to hear it from anyone either because she was angry that suddenly I had a life-threatening illness. What advice or words of wisdom would you share with someone who suddenly finds themselves in the role of a caregiver for someone newly diagnosed with PF/IPF?
I look forward to your replies, and thank you in advance for sharing!
September 3, 2018 at 10:20 pm #14274
My mom has been diagnosed with PF a year ago and she didn’t wanna tell me but I knew something was going on with her health so I checked her facebook messages and found out she has fibrosis in her lungs. I will never forget that moment wen I googled it and found out how terrible this disease is. I was crying myself to sleep for weeks. But later I started focusing on her treatment and comforting her at the times when she felt depressed. So I guess a caregiver needs some time to accept the illness of a loved one.
- This reply was modified 3 years, 8 months ago by Charlene Marshall. Reason: formatting
September 4, 2018 at 9:44 am #14294
Thanks so much for joining our forums – welcome again!
I’m so sorry to hear of your Mom’s PF diagnosis and that it was kept from you for some time. That must have been so tough to learn about, especially through messenger on Facebook. Google is terrible for relaying really scary information about PF, although even credible sites reiterate most of the same information. The sad reality is, this is a very cruel and unfair disease. Do you have any support through this Ali? Even caregivers need help and someone to support them. Please feel free to use this platform to connect with us any time, it is very tough to navigate this illness both for caregivers and patients alike.
So glad you’re here, and thanks for starting this very important topic in the Caregivers & Spouses forum.
September 4, 2018 at 1:09 pm #14302Sandra VanzylParticipant
Hi Charlene, in replying to your ‘caregiver’ question, my Husband John is my caregiver, and he has been a wonderful caregiver since home from the hospital in January. He does all the cooking (we also do takeout food , chicken, pizza, Greek food platters, ) but by far does everything as well as hold down a full time job in sales ! He was off last week with me and I encouraged him to golf which he did 4 or 5 times and I’m good with that because he needs to have some normalcy in his life ….I find when he is home he wants to be with me every minute which isn’t necessary ! We have a week of assessment coming up for transplant possibility and he is taking that week off as well but glad to see there is some time when he doesn’t need to be with me , so I hope he can meet up with some friends for lunch or coffee ! Or maybe he can wander over to the Eaton Center and buy my some diamonds. LOL…..that’s just too funny, material things mean nothing to me at all, I have all the worldly things anyone could want, I just want to get better !
I am open for any questions or ideas anyone has !
Cheers …..one breath at a time, one day at a time ! ❤️
September 4, 2018 at 6:38 pm #14315
Thanks so much for sharing a bit of information about John – he sounds wonderful, and I am so glad you have him by your side throughout this journey. I love hearing stories of strong relationships between patient and caregivers, because so much of what we go through would not be possible without the amazing caregivers in our lives. I wonder if there is a National Caregivers Day out there, where we could do something to formally recognize all of their efforts? There are so much other random days out there celebrating much less-important things, such as National Ice-cream Day. Yes, it is a thing…. apparently it is on the 3rd Sunday in July!
So glad to also hear that you encourage him to do some things for him also, to find that balance. It is so important, and I’m glad he follows through on your encouragement. I forgot that since you’re in Ottawa, you’d be going to Toronto General for transplant assessment. I am always there in various clinics, please let me know when you’ll be there and maybe we could connect in person… wouldn’t that be neat? My Mom also likes going to the Eaton Centre but not always to shop, she is just as content to “people watch” Lol. I was just parking at Yorkdale last week when everyone came rushing out of the mall after a shooting, it was really scary and I am so thankful that I hadn’t gone inside yet. Needless to say, my day didn’t include going into Yorkdale Mall after all.
Love your upbeat attitude Sandy, kudos to you – keep it going!
September 4, 2018 at 9:52 am #14296Cooper P Abrams IIIParticipant
My caregiver is my wife Carolyn. She is wonderful. Married 57 years. It has been hard on her having to wait on me, but as aways is` meeting the challenge. It bothers me that I am a burden to her and this has changed her life as well as mine. She is my chauffeur, manages my oxygen tanks and appointments. If I mention it to her, she tells for better or worse in sickness and or health. She says she is happy to be able to help. She proves her love everyday. God has so greatly blessed us both. He is our strength and comfort.
September 4, 2018 at 6:31 pm #14314
Great to hear from you! I think of you often and hope things are going well?
Sounds like Carolyn is absolutely as wonderful as you say she is. What a great bond you two have — 57 years, congratulations! Rare you hear of that these days, so it is nice to read an update like this and to hear that you feel blessed to have one another, despite this cruel illness. I am confident that if the roles were reversed, you would be just as helpful as she is to you. May you have many more ‘healthy’ years filled with love and happiness. Thank you for sharing this with us 🙂
September 5, 2018 at 3:09 pm #14331
Hello Charlene !
I am trying my best to stay positive so I can pass some of that positive energy to my mom because no matter how much I struggle she is the one who has this disease so she needs my support. It is really hard to stay strong but I am trying. There are days when I just can’t deal with it and feel depressed so I have to let my tears out. I am so scared to lose her and all the online information is so negative. Another thing is that I need to go back to school to Canada in January 2019 (i am taking a break from school so I can be with my mom) , but my family is in Azerbaijan (eastern europe). So I don’t know how I am going to deal with the distance thing. I pray everyday for a cure !! I wish you the best and more strength to battle this awful disease
September 7, 2018 at 7:32 am #14340
Thank you so much for getting back to me, its nice to hear from you again.
Kudos to you for staying positive for your Mom, that is important and it is not something that is always easy to do when facing this cruel illness! I hope you give yourself some grace, and treat yourself with kindness as you face this disease. While you’re right, your Mom is the one with the illness, caregivers certainly feel the impact of this disease too so it is important to take care of yourself also. Are you seeing anyone for support throughout this illness? I know many of my caregivers have sought our professional help out of fear of losing me too. There is no shame in that!
Where in Canada are you returning to school? I am in Canada 🙂
Wishing you strength in the days ahead, and please feel free to write any time.
September 7, 2018 at 9:05 am #14342Liz Martin DrouillardParticipant
I am caregiver for my husband who has pulmonary fibrosis and COPD. It escalated only 6 weeks ago….he was doing projects and playing golf without oxygen and today his body needs 5-6 liter flow. I have been caregiver for family and friends but this is the first time for this Godly sweet man. Heartbreaking. I have slowed my life down to be with him and consider it my privilege. I know I need to take care of myself and have tried to keep up with swim classes. I think an important thing for both of us is giving him space and encouragement to talk about how this feels. I know he wants to protect me but we can’t pretend. Better we cry it out together and keep going. We are trying to get out once a day for a drive or a meal but are fine having time together at home. This is a hard time of life.
September 9, 2018 at 7:56 pm #14371
Thank you so much for joining the PF forums and sharing a bit of both your and your husbands story with us, although I certainly wish it were different.
Did his disease progression happen so quickly as a result of an exacerbation or viral infection/illness? So sorry to hear it changed so drastically in just 6 weeks, that must be so hard on both of you to adjust. I can only imagine your husband’s frustration with his body, and such a drastic change in his abilities in such a short time. Bless you for slowing your own life down to focus on his needs Liz, what a wonderful woman you must be!
I think you have it exactly right in terms of maintaining things that are good in your life (ie. swimming lessons) and allowing that time apart for you both to digest and discuss the impact of this disease on you both together and apart. Sounds like you are doing everything right Liz, what an amazing caregiver you are!
Please know that you are most welcome on the forums, there are wonderful people here who can be a supportive ear for you, and if nothing else, please know that we truly “get it” on this site. Thanks again for sharing, and please feel free to reach out any time.
I will be praying for both you and your husband.
September 15, 2018 at 7:38 am #14425
Hello Dear Charlene !
Thank you for kind words. I also wish you strength in the days ahead !
I am going back to Calgary in January 🙂
September 17, 2018 at 1:04 pm #14447
Thank you for getting back to me, and letting me know of your return to Calgary in January. I hope you find many peaceful moments with your Mom between now and then, filled less with worry and more with calm and happy times. Kudos to you for being her caregiver and biggest supporter, I know that role is not an easy one! Wishing you strength in the days ahead also, and safe travels. Please don’t ever hesitate to reach out…
September 20, 2018 at 12:56 pm #14517Katie BagshaweParticipant
Hello everyone! Thanks Charlene for opening this post. You might want to put the kettle on before you get settled as I fear my reply might be a bit extensive, but firstly I’ll introduce myself a bit before giving my reply to the questions you’ve raised.
My name is Katie and in May 2015 my Dad was suddenly diagnosed with IPF aged 59. He was still fairly fit and healthy at the time, but later that year he developed pneumonia and was subsequently discharged from Hospital needing oxygen (6-8 litres when moving around) and having lost a lot of weight and strength. To support my parents financially I moved back home from University to provide Dad with his care so that Mum could continue working. Over the course of 2016 Dad maintained and fought for his strength back using liquid oxygen so he could get out and about for longer, unfortunately in early 2017 he contracted influenza and his oxygen levels increased to 10-12 and he was mostly in a wheelchair from that point. He passed away in June 2017 aged 61 just over two years after his diagnosis.
There will be many questions facing a person when it becomes their responsibility to care for someone and I feel that no question has any one set answer. It depends on the individual themselves, how they’re coping (psychologically especially) and how “open” they are at talking about things that may be difficult. It depends on the person who has been diagnosed, how much they wish to pass control over to the Carer and what relationship they hold; a married couple will have a different dynamic than say I did being father and daughter. I can of course give you insight into what I feel I’ve learned along the way and hopefully this may provide some thought whether you are the Carer yourself or whether you are the person living with PF.
* I feel it’s upto the individual on how much they wish to know, but for a Carer and someone living with the disease, it’s much much easier to learn the facts before being surprised with them along the way. Being prepared for deterioration, knowing about how to deal with exacerbations of breathlessness, talking and approaching palliative and end of life care, everyday routines, side effects of the illness and the drugs… the list feels endless, but the biggest learning curve is by living in it. Ask questions to people living in it (this is why support groups and these forums are so important) and avoid the scaremongering statistics that Google throws at you. PF is wildly different from person to person so keep that in mind, and don’t ever let go of hope.
*It can feel like drowning a lot of the time, there is a responsibility to the Carer to put on a smile and to be positive, but it’s absolutely vital that you share your emotions however hard that may be. It will ultimately bring you closer together and it will psychologically help you cope with the downward spiral of illness. How you share is upto you, talking of course is expected but writing letters back and forth is also beneficial as it can allow you to share thoughts that you feel you can’t verbalise.
*Every caregiver is different so be your own person, all I feel you need is compassion and patience. For some it can be easily overwhelming and each day can feel a struggle, there may be negative feelings of resent or burden, for others it can be positive and you feel nurturing and protective. For some it can be mixed. But ultimately as a Carer you have to adapt because it all boils down to the person you care for, the questions you have to ask yourself such as “how is my mood going to affect them?”. As a Carer you learn to come second because the person you’re looking after is dealing with something so much bigger than you, and that’s something to always keep in mind. For me personally it became autopilot, I realised there was a bigger and greater relationship with my Dad by remaining positive, by tapping into his desire to want to stay independent and finding small ways to do that. In a lot of ways we weren’t a hierarchy as carer and patient, but a partnership of father and daughter. Again, I feel this relationship is totally personal to each person and will change over time as the disease progresses, I guess just be aware of how things might change and definitely as a Carer have someone to confide in, or a way of allowing your emotions out, mine was writing as the only person I felt comfortable talking to was Dad.
*Relationships with friends and family will change. Some will be helpful, patient and willing to listen whereas others would rather run to the hills than be involved in something so awakening. It’s a hard side effect of life as a Carer and you have to be understanding that it will be difficult for people to know what to say, but it is disheartening and upsetting when people you value in your life become more distant and ultimately don’t step up to the mark in your time of need. Unfortunately I lost a few good friends along the way as they never came forward to support me, even in my Dads death but of course, the positive is that you will have some that will step up and be there regardless. I have a whole new relationship with my Aunt and Cousin on my Dad’s side since he passed as they understand the need to talk honestly about feeling his huge loss in our lives. If people ask what they should say or what they could do, simply I would say just treat me like a person. Yes, this situation is hard but all you need to do is sit down for a coffee and a chat or go out for lunch or for a meal. People living with PF and even any illness find it difficult that people stop seeing them as a person and more as an illness, the same can be said for a Carer.
Honestly, I could go on and on… but anyone is free to ask me questions or for my thoughts on this area as I guess in all of this journey this has become my area of expertise, and it’s knowledge that is perhaps going to stick with me for a long time yet.
Edit: one thing I must stress though is the power of love. How this feeling can pull you through the darkest times and give you the courage to sit by your loved one and be there for them. Don’t be afraid of being vulnerable, yes it really hurts in the end but it gives you so much in that precious time you have together. As someone else said earlier, it’s a privilege to care for someone and I totally agree. You learn so much about each other than perhaps you would never have gotten the chance to do if it wasn’t for the carer relationship you evolve.
- This reply was modified 3 years, 8 months ago by Katie Bagshawe.
May 28, 2019 at 7:30 pm #19468MarianneParticipant
Hi all –
I don’t currently have a caregiver. I have two adult children who are busy with their own lives. I was diagnosed on May 24. I have thought for some time that I probably had IPF. Doctors had hinted at that diagnosis but we were not certain until a VATS lung biopsy. Both my children seem like they are accepting the diagnosis but I am not sure that is the case. The oldest is in the medical field and a friend who is a cardiologist put her in touch with another person who is a cardio thoracic surgeon. Both children are very encouraging and we talk or text every couple days. One lives about an hour away and the oldest lives in PA about an 8 hour drive. I want to remain independent as long as possible. I am not a person who likes to ask friends for help. I have a small Life Group that has been together for 6 years. We have been through many things together – death of a college age child, death of parents, birth of grandchildren, etc. I know they will be here for me. I also have my faith in God, and have my church family. Caregivers I am sure are very helpful and much needed but I imagine sometimes they are at a loss as to how to help you and still take care of their own health. I have a friend who has been a caregiver for years for her husband. He has a rare genetic disease and has been in a wheelchair . They have nurses aides who come into their home daily to help with her husband’s care. I try to stop in to visit them monthly. I know his illness is now causing a financial as well as emotional challenges. I pray that her health remains good so she can continue to take care of her husband at home.
That is all I can think of right now. I believe I will ask my children if they want to join this pulmonary fibrosis news. It might help them to understand this disease. Both are very upbeat around me but I know this has got to be very hard for them as I have always been a pretty healthy person.
July 23, 2019 at 5:51 am #20425Fran JohnsonParticipant
Good morning, I am the caregiver for my husband, Randy, who had a lung biopsy in late May. His diagnosis was IPF, he suffered a collapsed lung about 2 weeks after the biopsy, a slow leak. He was in the hospital for about 8 days and the leak thankfully closed. Before the biopsy, Randy was able to do almost everything independently, he drove, we took walks with our dog, we went out to dinner, now, he is on supplemental oxygen – and using a walker. I am perplexed – it seems as though the biopsy and lung collapse exacerbated his condition? We have an appointment at the Mayo Clinic in Jacksonville, FL on August 1st, I am hoping we can get answers… I think the not knowing what is happening – increased progression or just a slow recovery from collapsed lung is taking its toll. Randy is on Esbriet at this point, he’s on a low dose of anxiety medication as well and we have PT and Home Health nurses each week and we are starting with counseling this week as well… has anyone else had this experience? Thank you for any advice!!!
July 23, 2019 at 4:48 pm #20439Tom NicholasParticipant
Somehow, I’ll try and manage to be brief. Good luck on that!
My mother died of pulmonary fibrosis over 20 years ago. It wasn’t called IPF in those days. My brother and I have both been diagnosed with IPF…me, for about 3 years and my brother about 18 months. My father was my mother’s caregiver. He lovingly provided her with dedicated caregiving…no one could ever want more than he gave to her. I lived about 4 hours away, so my visits were on weekends. My mother went into hospice when deemed she had about 6 months to live. Hospice also provided wonderful support and attention to my mother. The Lord blessed me to be with my mom the last few days of her life, and I stayed with Dad for awhile thereafter. My father was a strong, energetic man in relatively good health for a man 78 years old.
Four months after my Mom passed, by father died of a massive stroke.
So my advice here for caregivers, you too need to have a support system, whether it be a friend or a loved one…someone to talk to, someone to share with, someone who will keep an eye on you and your well being.
I remember on one my last visits, a hospice volunteer was at the house when I arrived. Knowing whenever my Dad had a visit from a hospice volunteer he would run errands, grocery store, pharmacy etc….truly not a “break” and he was in a rush to be back home at my Mom’s side. I asked the volunteer if she would mind staying for a couple hours, she gracious said she’d stay. I told my Dad we were going sailing, as his Priest had offered the use of his sailboat on a nearby lake. We did go sailing…Dad did nod off several times, but we had a wonderful time, and he was somewhat refreshed for just a little while. He never played the organ, one his true delights in life. My advice friends, it’s ok to take a “break” not only OK but important and critical you do so, and have a support system to enable that happening.
Thanks for listening!
July 23, 2019 at 5:28 pm #20442Mark KoziolParticipant
Hello Tom, thank you for sharing your story about your parents. You are so right when you mention how the caregiver must have a little me time. When I was suffering with ipf I would always encourage my wife to spend time away from the house and with her friends or just go clothes shopping. Caregivers do need their time to reset themselves. Thank you again and best wishes. Mark
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