Hearing Others’ IPF Story: Pros & Cons.

[katie-bagshawe]

How awful for you Charlene and also how insensitive of this woman to not at least ask permission or to navigate how to deal with such a distressing topic with you. I’m so glad your Cousin was there to step in for you!

I like your question here as it does raise a very important reminder, we are all different and we all want different things. Some people want to know the minuscule detail with what to expect, whereas others are happy to know the minimal they can get away with. That absolutely has to be respected and understood, especially when it comes to such a distressing topic for some either as the patient or as the caregiver/loved one.

This got me thinking of when I visited a support group with my Dad who at this point was in a wheelchair on quite a high flow of oxygen and was realizing that the hope of lung transplantation wasn’t going to be an option. The speaker that particular month was a member of the group, who at the same age as Dad had recently had a successful lung transplant and had recovered. He spoke of being able to have his oxygen support taken away and feeling the weight and burden of his illness lifted. Whilst helpful and insightful for some, for my Dad it was nothing short of upsetting as he realized this wasn’t going to be his future. It was a mixed emotion, I was elated for the chap that he got his miracle but was envious and angry that this wasn’t going to be the case for Dad. It definitely gave me false hope and denial for a while until I finally spoke with Dad about how he felt so hopeless that he was never going to get the same outcome. I am now mindful of talking to those who have had had transplants as I know how it can still upset me that we never got this success ending to our story. As interesting as it is, it does devastate me that he missed out in this area.

Of course reading stories similar to mine have been helpful. Dealing with life as a caregiver as well as tips and tricks on symptom management etc, a.k.a the daily livings of PF were much more helpful to me.

I do try to be mindful when talking to others about PF and in fact try not to bring my Dad into the conversation too much in fear of upsetting those still living with PF in their lives as I know for some it will be a reminder of the dying aspect of the disease. Instead I encourage the positive memories where possible and allow them to speak openly without surrendering my own details unless they explicitly ask. I agree with your statement at the ending that there is mutual respect and understanding here, each visitor has control over what they wish to read on their terms, whereas in person this can be a much more difficult area to navigate.

[Charlene Marshall]

Hi Katie,

Thanks so much for connecting and for your kind words, it sure was a tough weekend! I am actually participating in a similar weekend getaway in a few months and have requested that I not sit beside this woman, as I just don’t want to have to deal with her negativity. She may need to talk/vent, but unfortunately I am not the right person to do that with…

Thanks for sharing the experience of your Dad as well in response to the guest speaker at the support group. I suspect this is how the woman might have felt if I brought up lung transplantation, or the fact that her husband was seemingly deteriorating a lot faster than I was. It is a mixed bag of emotions when one person seems to do well with the disease and others don’t; it is just an unfortunate twist of fate I guess and we all just do our best. I can certainly understand how hearing about transplants can’t be upsetting because your Dad didn’t get the option to purse that. Thanks for sharing your experience with this so openly.

I concur with your response completely, each person is so different in terms of how much or how little information they want to know about the disease. This is an important aspect of coping with PF that everyone needs to remember, thanks for sharing.

Charlene.

[katie-bagshawe]

I’m glad you’ve been able to find a way of navigating the situation with her in future, hopefully she will be mindful after your cousin spoke to her and perhaps gave you some space. It’s just deeply unfair of her to put you in that situation and expect that because you have a similar disease, it means you’re happy to sit and talk about everything and anything related to it.

The talk of lung transplants doesn’t upset me so much now. I have had plenty of conversations with people regarding the pros and cons of such an event and it’s given me better understanding of how complex and risky this procedure can be. Instead I like to feel blessed of the time I spent with my Dad and that he no longer suffers since a lung transplant may still not have given him much more time with us. I just feel my journey was going somewhere different and I strongly advocate people joining the donor registers to help all those waiting, a big factor for the lack of lung transplants if of course a lack of supply so I acknowledge this and champion awareness as much as I do encouraging palliative and end of life care. My upset was more seeing him so hopeless knowing his life couldn’t be saved.

Perhaps it is more for those actively living with the disease themselves as it is much easier for a loved one to distance themselves from the stories they’ve heard as it isn’t directly affecting them as deeply. Especially when you’re actually living in that moment with ill health.

[steve-dragoo]

Hi Charlene,

I cannot imagine what end-stage looks like in my future and being almost 70 I can convince myself I have lived a long life but no matter what age I may be, I still want to live a long time. I am sure with these great forums we can rise up above the “din of the crowd”.

So the two choices I can make are to help anyone with this dreaded disease to the extent I am able and being in sales, so long I will change the subject as often as needed as most will allow that to happen. If that doesn’t work, I carry a 2″ x 4″.  Some people it is harder to get their attention and it may seem strange but they will respond to the 2 x 4.

I also empathize with the older woman’s dilemma as she may not have anyone in her life and that has to be harsh. When in the military as a hospital corpsman, I could not help a number of people because of what the problems were and had to make internal professional decisions on how to handle it.  Over time I learned how but I can tell you I remember everyone I lost even 50 years later. I did my best and that is all you can do too.

I hope this old man’s rantings helps you just even a little… – Steve

[Charlene Marshall]

Hi Steve,

Thanks for writing, as always, I appreciate your perspective. You are always helpful! 🙂

With your knowledge, drive and commitment to alternative therapies, I am convinced you don’t have to think of end-stage for a really long time. I did feel badly for this lady, it was obvious she was a sole care provider for her husband and didn’t have anyone to turn to, and I think if asked if I wanted to have a discussion about IPF (as opposed to it just being assumed) I would have created space to do that with her over the weekend. Its hard when people assume you want to talk about the disease, when oftentimes I don’t, especially at a retreat weekend meant to escape the realities of daily living.

You’re right – all we can do is our best, and I don’t think I did in that moment but I was truly caught off-guard. I wonder if she will be at the retreat this coming June? Maybe I can have a re-do and be an ear for her, with a designated timeframe to start and stop the conversation.

Thanks for sharing your insight and hope you’re doing well. I know I owe you an email – its coming!
Charlene.

[Charlene Marshall]

Very well said Katie, thanks for sharing!

I do hope to have some space from her at the spring retreat as well, and am somewhat fearing the news that her husband has since passed away. I would of course be very sad and sympathetic for her, but the intention behind going to the retreat is to relax and enjoy. I don’t mind talking about IPF with others, although I like to be in the position of it being a choice for me to do so, not forced conversation which is what this was. Thanks for being so understanding with this.

Take care and thanks again,
Charlene.

[katie-bagshawe]

But I can’t help but think of what has been said on here before, that the illness shouldn’t define a person and I think we all feel our life can easily revolve around the disease which is frustrating when there is so much more to a person. Plus, I would like for her to put herself in your shoes, or perhaps her husband and imagine what it would feel like if the roles were reversed. Unfortunately not everyone can be as patient or mindful of this when speaking around other people.

I’m sending you well wishes that you’ll have a much more enjoyable time, and the fact you’ve given people notice of the situation means you’ve got people in your corner to help navigate it should it become tricky. It’s hard when you’re a naturally caring person when you feel you have to draw the line, but at the end of the day you do have to stand up for yourself and what you’re comfortable with.

[jay-turbes-s]

Charlene,

It’s sad that this person “dumped” on you about her husband’s IPF battles (and her own agony). By now, you must have encountered similar chance encounters, and I would surmise that they all are either attempting to be sympathetic or think they’re establishing some sort of rapport. Few of us have much on which to base our daily lives of dealing with a loved one — or our own — who has this kind of affliction. As self-serving as she was, she probably had no previous experience dealing with such trials, had kept it bottled up, and then along came you!

It’s unfortunate that it was in a venue where you hoped to free yourself of the daily trials of your own IPF, particularly when you purposely sought out something you thought was totally “alien” and apart from the daily norm. For many of the same reasons you mentioned, I brush off enquiries into my lady’s IPF status and don’t bring it up with others — whether personally or on forums such as this one. Many of us of advanced years have no one to turn to. Friends/family are gone, and a lot of what’s said/written are platitudes that don’t help a bit facing what’s next. It just rubs salt in festering sores, so I don’t mention it outside the home and only when she broaches here as well. What’s the use?

[katie-bagshawe]

Hello Jay,

It was nice to read your response and see it from the perspective of feeling perhaps a little isolated and that there isn’t someone more appropriate to share these feelings and experiences with. What would your thoughts be on speaking to a counselor about your emotions and how you feel you’re coping? Or even perhaps a volunteer that can sit and talk out these things with you in a compassionate manner? I did some research in the Psychological impact of PF and found how severely lacking this area was, and the toll it took on an individuals mental health dealing with such a drastic change in life circumstances. I would be interested to hear your perspective on where support could be better offered to you so you feel less alone.

[Charlene Marshall]

Hi Jay and Katie,

Thanks so much for continuing this discussion around an important topic, and I do appreciate hearing your perspective Jay! You’re right – I am entirely convinced this woman didn’t mean any harm by sharing her husband’s story with me; it was obvious she needed to vent. I think was I disliked most was that I wasn’t in a position to be asked whether or not I wanted to discuss the trials and difficulties of living with IPF. The assumption was that because she could relate to me (or vice versa) as a caregiver of someone with IPF, that I wanted to talk about it and I was in an environment with the hopes of forgetting about my struggles. I think if she would have brought it up and asked if I wanted to talk about, or if I minded, I probably would have declined the opportunity in the moment but likely created space for it at some point throughout the weekend, recognizing it was a need of hers. Perhaps my approach would have been difference if this was the case…

Thank you for bringing up that perspective though, and I agree, it is important for everyone to have a platform to discuss the difficulties of this illness. It sure can be isolating, I agree. As Katie mentions above, the psychological impact of this disease is terrible so finding an outlet is important and its human nature, I believe, to gravitate to people who understand us. I’d much rather talk to another patient than someone who has no idea what its like to live with this illness, but I also know the importance of balance my need with their needs and finding that boundary whenever possible. Really good discussions here, thanks again for sharing this perspective.

Charlene.

[jan-riche]

Hi Charlene, I’m sorry you had this experience, I know how much I need to forget for awhile that I have this condition. But I also know how difficult I find it to be in the company of a negative attitude, I don’t seem to care so much about the content of the conversation as I do the attitude.  My friends and I can talk about this disease and it’s consequences with humor and laughter, while others seem to dwell on the “woe is me.”  I consider staying away from them as good mental health self care.  I am in my 70’s and can be selfish about my time.  My goal is to enjoy each day and unless there’s a good reason to be around a negative attitude I see no reason why I should.  Boy, does that sound harsh or what?

I sincerely hope you don’t have to deal with that again.

Jan R

[katie-bagshawe]

Hello Jan, I agree wholeheartedly with your attitude and feel the same. Of course we can’t always be positive, but in the last year or so I’ve found a new attitude in just accepting what you can and can’t do. Let me tell you, boy it is like a weight off your shoulders in just knowing what you can and can’t do, and not putting that pressure on yourself to strive to be something you can’t. I guess having lost my Dad, I’ve faced the worst thing imaginable to me, it was my greatest fear losing one of my parents at a young age and having been forced to live through that, it’s a bit like accepting that things can only get or feel better. Of course, life is always testing in a lot of ways but more importantly I know he would want me to live in happiness than to live in the sadness of his death. His spirit lives on in me and I want to make up for the time he’s lost, and I know that can’t be achieved by feeling sorry for myself all the time. The only person who can make you happy, is ultimately yourself. And you all deserve it. I love that you live even the hardest things with humor, it’s a brilliant coping mechanism not just for you, but those around you who may not be certain on they can help. Just being a friend, being there and allowing you to feel like yourself is a blessing.

[Charlene Marshall]

Hi Jan,

Thanks so much for writing – your words and perspective really resonated with me. I too don’t care as much about the content/topic of conversations, as I do the attitude – this is so important to me. The struggle I had wasn’t necessarily with the content of the conversation, as I would have created space to talk about IPF with her if she needed it, but it was the assumption that I wanted to talk about it with her and the attitude that she needed to vent and I needed to listen. You’re right, that was tough!

Talking about our disease with humor and laughter is good for the soul. Sure, it is important to have moments of being serious too and there is a time and place for that but honestly, humor and laughter have helped me cope on multiple occasions. The most recent one is referring to myself as a “chronic badass” because I sometimes go against medical advice (never putting my health in jeopardy) but just to get some control. This has made other patients in clinic laugh too!

I don’t think it sounds harsh, I think your comments come from a place of protecting your mental health and that is so important – I applaud you  my friend.

Thanks for your kind words!
Charlene.

[jay-turbes-s]

Charlene, Katie, et al

I’m a caregiver and not afflicted like Milady here. She and I don’t talk about what she’s dealing with daily, or inevitably. And that’s a shame. But I’m too much of a coward to bring it up. When the one or two people I know ask, as they always do, how we’re doing, I lie and say “great”. Or in more truthful moments, “…about the same, thanks”.

Rarely, like on holidays and birthdays that we both know may be the last, we pretend there’ll be more and sometimes we cry. I try feebly to imagine her terror — I know mine, which is the inevitable and dreaded loneliness. There is no amount or type of counseling I can imagine that will help with either of those. For myself I tried that as a way to deal with my role as caregiver/mate, and after the verbal disgorging and letting it all out, I didn’t feel a bit better. I was just embarrassed and even more angry at the godless unfairness of such a wonderful person being beset with this unearned disease.

And no IPF (or whatever they’re claiming she now has) support group can do much else other than be a constant reminder — like the lady who broached the matter with you, Charlene — of what you wanted a respite from, at least for a short time. You didn’t want or need that and neither would we. The inevitable damned disease will still be there for her and the looming loneliness for me. Family and friends are all gone and it’s just us two.

But every new day is a blessing, particularly when it’s cough-free, even if it misleads us about what’s coming. We’ll take it! It’s what keeps us going.

[Charlene Marshall]

Hi Jay,

Thanks for sharing your experience, and reminding me that you’re a caregiver for your wife. How is she doing these days? It is hard to bring it up, very difficult to talk about I remember feeling that about talking with my caregivers about the inevitable. It is usually easier to fib a bit in response to my-dreaded-question “how are you doing?” I often say that I’m doing well, which isn’t always true. I wrote a column about this which you can find here, if interested: https://pulmonaryfibrosisnews.com/2017/10/05/ipf-my-emotional-trigger-responding-asked-how-are-you-doing/

It sure is unfair, I agree and I suppose the only advice or encouragement I can provide is to capture as many moments and memories as you can, being realistic about the inevitable while balancing the knowledge so many people have lived far beyond on the standard prognosis of this disease. Recently I read an article on how the 3-5 year prognosis is very outdated. Wishing your lady well, and you too.

Take care,
Charlene.

[lorraine]

I have probably done this in reverse. As I have blurted out, that I have IPF to acquaintances and what that means. Why? Maybe because I have to downplay my IPF to loved ones, with updates one CT scan at a time, because my parents are in their 80’s and my dad is not doing well. Ironically, I am their caregiver and I feel sad that I might not be able to carry on for them after all they have done for me. Maybe because my ‘friends’ tell me to be positive — when I TRY to discuss IPF with them.

Does anyone know of a telephone talk therapy opportunity? I do need to vent and not feel like I have the plague.

[Charlene Marshall]

Hi Lorraine,

Thanks for sharing this with us, it sure is such a tough position we’re in isn’t it? Not wanting to ‘burden’ others with our disease but also feeling the need to talk about it and be realistic. It’s a scary disease to face! I can see your perspective here too of telling strangers the seriousness of it ahead of our loved ones, because we try to downplay it or ‘be strong’ in front of them. We all have different needs I suppose, and it sure can be difficult to know how to address those needs based on our feelings and wanting to protect those we love.

As for the telephone talk therapy opportunity, I am working with BioNews (the company that runs PF News) and trying to set up an online support group for those in the forums. It might be similar to the talk therapy you’re referring to, we’re just trying to get the right type of platform for it. Stay tuned – but would this be something you’d benefit from, do you think?

Talk to you soon,
Charlene.

[lorraine]

Thank you Charlene and please go back to enjoying Quebec. Sorry to have disturbed your long deserved weekend with your friends.

An online support group might work. I would give it a try — when it becomes available.

Have fun,

Lorraine

 

[Charlene Marshall]

You’re never an disruption Lorraine! Happy to hear from you, and your feedback about an online support group. I need to follow up this week to see where we’re at in terms of researching a platform that will work for this. Another member of my team is doing that work so I should circle back about it. I’ll keep you posted, as I know you and a few other folks have expressed interest in how helpful this would be. Talk to you soon!

I’ll send you a longer update about Quebec via private message when I can keep my eyes open longer 😉
Charlene.

[lorraine]

New Jersey Governor Phil Murphy on Friday signed the Aid in Dying for the Terminally Ill Act into law. New Jersey joins Oregon, Washington, Vermont, California, Colorado, Washington, D.C., and Hawaii in providing its residents who are dying from a terminal illness with the option to die peacefully using prescription medication.

[Charlene Marshall]

Hi Lorraine,

Wow, thanks for sharing this – I didn’t know it was that close to being signed/passed, so I’m going to read up on it more. I know this is a very touchy topic with lots of differences of opinion but one that I personally believe in if it means a more controlled or peaceful death which I think is important. Glad more states are on board with this Act as well, thanks for highlighting which ones.
Talk to you soon,
Charlene.

[lorraine]

Hi Charlene:

Yes, a very touchy subject and to be honest, I am not even sure of my own position on the matter …

[Charlene Marshall]

I completely agree with you Lorraine! I should have phrased that I believe it in  and would advocate for it for patients who need it, however, applied to the context of my own life, it sure is harder to talk about. I need to read/learn more I think, but I guess where my thought comes from in supporting it, is ensuring patients feel like they have control and choice over their end-of-life experience. So much to discuss here though, for sure. Thanks again for sharing this post with us initially, I have to look up the Act – maybe tomorrow when I am not so tired.

Cheers,
Charlene.

[katie-bagshawe]

Thanks for sharing that news Lorraine, it’s encouraging to hear that governments and politicians are becoming more open minded to these important matters that play such a big role in so many peoples lives. Ultimately I hope it gives the people the right support should they have to face this kind of issue. And of course, hopefully open a conversation about encouraging a good death for people, especially those facing progressive illnesses.

The telephone helpline would be really useful. The British Lung Foundation and Action for Pulmonary Fibrosis in the UK both have active telephone services which have proved to be a great success in helping people find out more our their disease as well as to generally have someone to talk to. That’s why if it’s possible, attending support groups would be of great benefit to have that one to one talk with someone who might be dealing with a similar circumstance as you. Do the bigger charities such as American Lung Association have telephone services to call for advice or counselling?

[mark-koziol]

Hello Kate, my column that was published yesterday actually has to do with finding support in the PF community. You can access this by clicking on my article. Thank you Mark

[lorraine]

Hi Katie:

I have been reading the deathwithdignity.org website with an open-mind and find it very informative. Also, I appreciate and respect that the opportunity is or may be available for those who wish to choose it. Suffering is overrated.

I would prefer a local face-to-face support group and will ask my local pulmonologist if he knows of a group here. Alternatively the telephone would work for me.

Here is what I found so far:

1) “With the IPFandYou™ Call Center, you can call 1-844-473-2638 to speak with one of our dedicated nurses who specializes in idiopathic pulmonary fibrosis (IPF) and other respiratory issues. IPF may affect you differently at different points, and our nurses are here to answer questions and help guide you along the way.”

2) “PFF Voices is the Pulmonary Fibrosis Foundation’s telephone-based support group for pulmonary fibrosis patients, caregivers, family members and anyone else affected by this disease. This group meets once per month over the phone in a conference call setting. Each monthly meeting provides a chance to discuss different topics related to pulmonary fibrosis, share personal stories, ask questions and provide support to one another.

Meetings are held on the third Thursday each month at: 11 AM PT, 12 PM MT, 1:00 p.m. CT and 2 PM ET. Contact the PFF Patient Communication Center at 844.TalkPFF or [email protected] for more details and to confirm meeting details.

Call-in information for PFF Voices

Phone Number: 1-571-317-3116

Access Code: 124-558-4531)”

I am going to try to call in tomorrow … but currently have a conflict.

Best wishes,

Lorraine