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    • #11527

      Hello everyone, I was looking for a place to share, (which  feels like complaining). Don’t feel like I’m allowed to complain, after all he is the one suffering. My struggles are that suddenly I’m in charge of everything. I could barley handle my share prior to his diagnosis. But, my love is strong. All I want to do is stay home and keep him safe where I can control everything. But as I understand it, there will come many things I can’t control. That’s when I feel sick to my stomach and go to bed. Not coping well on the inside, but looking pretty good at it on the outside.  Kathie

    • #11537

      Hi Kathie,

      Thank you so much for contributing this thread and sharing with us how you are feeling. Please don’t ever apologize for sharing, or feel like you are complaining! As I always say: this disease does not come with a handbook for patients or caregivers, so we kind of write our story as we go and sometimes (most times actually) it is not easy to deal with. We are all happy to be here for you as much as we can be!

      May I ask what your support network is like? Do friends, family, neighbours, etc know of your husband’s diagnosis? It was so hard for me to share news of my diagnosis with these people, but once I did, I learned how important it was to do so. It was important because suddenly I had help when I needed it, which was not all the time but I knew I could count on someone other than myself when I couldn’t manage everything on my own. Another thing that I know some of my friends and family found helpful was seeking out professional help, in terms of identifying coping strategies for dealing with this disease? It is scary, and it certainly is unfair! They worked together with one another, and with a professional counsellor to identify each of their unique ways of coping and then set up some strategies to support that. I’m not sure if this would be helpful for you? Sometimes it doesn’t feel the best to admit we need support from a professional, I can certainly understand this, but there are times in our lives when this is important too. May I also ask: what are some of your coping strategies for you, right now? What I mean by that is, what do you do for yourself to feel relaxed, at peace or rejuvenated? I know you want to help your husband, but it is so important to take care of you in this role as well.

      I look forward to continuing to chat with you a bit more, and know that your thoughts, fears, worries, etc are all welcome here. This is a group that truly understands.

      Warmest regards,
      Charlene

    • #11541

      Hi Charlene, glad to hear from you. It’s so nice to be able to tell someone how I’m feeling when I’m feeling it! It seems to me that if I don’t share when the feeling is there.. it goes down somewhere deep to boil. Then it comes out side ways, later, and I’m short with my husband. Since we are just a couple of weeks into this journey, we are just now looking at what kind of support we need. This website is the best thing we found so far. We were able to find a support group to attend not far from our house. Looking forward to that. Hopefully we’ll hear about supports there. If not we’ll ask the Dr. next time we see him. As for right now, we live along side family. Although they are a young family and very busy with 3 boys, there is lots of love in our life and can call on them for anything. I’ll put my feelings here.

      thanks, Kathie

      • #11545

        Hi Kathie,

        Thank you for writing back, I’ve been thinking of you and hoping you’re doing alright.

        Even though I am a patient, I can certainly resonate with what you share about letting things boil and then they manifest in ways that are unpleasant for us, and our loved ones. I unfortunately get really quiet, but there are so many other things I want to say and do. Then others think they upset me, and when they try to understand I just get impatient and explode at them. This disease is so hard to navigate and has so many raw emotions associated with it, so I am glad to hear you say that writing them here when you need to will be helpful for you. Please write any time, because likely someone has felt/is feeling similar to what you are and your sharing might just bring them enough courage to share too.

        I am also glad to hear that you are assessing what kinds of supports you need, and don’t be afraid to let people know if those support needs change. Inevitably, as the disease progresses or different treatment options ensue, you’ll likely find yourself needing something even different than you do now. I’ve heard from many other patients and caregivers that support groups are helpful for them, especially if the age bracket is within similar range as this enables most people to talk about similar “life stage” things with this illness. Will you let us know how it goes? Is it a group facilitated through a hospital or clinic?

        I’m so glad you have the support of your family too Kathie, and that lots of love is in your house. It sounds like the perfect environment to focus on making some wonderful, quality memories in the next few years 🙂

        Take care of yourself.

        Warmly,
        Charlene

    • #11547

      Charlene, thanks for the encouragement. This is the site my husband found a person that holds a group in his home. Gary Ford holds groups in Newmarket because he use to travel all the way to Toronto for a support group. He has 2 new lungs! He contributes to a blog called Canadians living with P.F. I hope it’s safe. We will ask Dr. if our local hospital holds one, and anything else that may be helpful. I’ll let you know how it goes, we don’t go till April 12 th. I’m glad I retired a couple of years ago and have set my new routine. My husbands still works although from home (thank God). Grateful to be home for him.

      will write again soon, Kathie

      • #11548

        Hi Kathie,

        Thanks for writing back! I hope you had a relaxing Sunday, and that you were able to enjoy the beautiful sunshine despite the air still being a bit chilly. Spring is on it’s way for Ontario!

        Yes, I know of the support group in Newmarket and know of Gary as well. We’ve never met, but have corresponded online a couple of times and he seems lovely. He seems to be doing really well since his transplant… a good news story indeed! Are you near Newmarket? I am about 2 hours west of Toronto and travel there often for appointments as well.  I think the “Canadians Living with PF” Facebook page is definitely an excellent resource of you to be part of. There is wonderful support through there, and many volunteer patients who offer to help other patients and their families. A woman named Barbara is the admin, and she is very knowledgeable about this disease as well. A good group of folks to be connected with! I would think it is a good idea to ask your Doctor about groups locally too. The only thing I caution people about patient-led support groups is the risk of bias, and/or it them not being professional facilitators / trained to deal with some of the tougher emotional things that we deal with. While most are wonderful, and I’d much rather see the support out there than not, it is just something to be aware of thats all 🙂

        Goodluck at your April 12th appointment! I have one April 9th, so will be thinking of you both at your husbands appointment just a few days after. I look forward to hearing, and please feel free to write anytime.

        Warmly,
        Charlene.

    • #11553
      gil
      Participant

      Kathi,

      Thank you for your posting. I have a better understanding of the struggles caretaker experience and this will help me over the long run.   One lesson for me is I will have to be patient with my caretaker and others who assist me.  Currently, I don’t have a caretaker but I do have a couple of people helping me as needed.

      Good luck with appointment,

      gil

       

      • #11561

        Hi Gil,

        I’m so glad you commented here, and shared your thoughts with Kathie and I. I couldn’t agree more re: having patience for our caregivers, I think this ought to be one of the toughest jobs in the world! I also don’t have a formal caregiver right now, but sometimes I need to remind myself to be patient and understanding with my amazing friends, colleagues and family members who help me out tremendously.

        I am actually going to write a post about this shortly, but these past few weeks the “tables have turned a bit” with a friend of mine who was hospitalized to the respirology floor due to a decline in lung function. So, I kind of became her caregiver and I certainly got a bit more of an understanding what caregivers go through, but nothing in comparison to those who do this role with a spouse, partner, etc. I am going to write a bit of a thank you to caregivers, simply based on my experience being a bit of a eye-opener to what a hard role it is. Stay tuned! 🙂

        Hope you’re doing well Gil. Chat soon!

        Thinking of you also Kathie….
        Hugs,
        Charlene

    • #11558
      Patsy
      Participant

      Hi Kathie,
      Your husband is so lucky to have tou in his life sharing this journey. Cuz it is a journey. When I was diagnosed I lived alone. Don’t get me wrong, I wasn’t actually alone. I had a great support system of friends but most were still working and others lived about 4 hours away. Initially, I was so sick that simple things were hard if not impossible to do. Luckily, I enjoyed the friendship of neighbors who came to my assistance at a time when I most needed help. What I can tell you that I discovered during my journey (3 years) is that feeling of overwhelm is only temporary and like most difficult challenges in life, we adapt. Once I got over the deep depression, which took about 5-6 months, I started accepting my situation. The medicine/treatment started working and I began to get my life in order. Reaching out is a great first step. If your husband can get to pulmonary rehab, you can join him. It teaches you about this disease, shows you ways for coping and gets you excercising to help with the inactivity that plagues us. My insurance paid for it and his pulmonologist needs to prescribe it. It worked wonders for me.
      Hopeful for you,
      Patsy

      • #11562

        Hi Patsy,

        Thank you for reaching out and sharing your comments with us. I found what you shared particularly interesting, and I hope Kathie will as well. I also couldn’t agree more: this is such a tough journey, and we as patients, are so lucky to have dedicated caregivers in our lives.

        When you were originally determining when you needed help / what with Patsy, did you just let others know and they stepped up to help you, or did they offer certain tasks that you ended up learning were helpful to you? This is one thing I often struggle with: people ask what they can do for me, and sometimes I’m not sure. It feels odd for me to say “just be with me”, but sometimes that is all I want and need.

        That is also really interesting Patsy, I bet participating in things associated with the disease (ie. pulmonary rehab, support groups, etc) not only help with the coping aspect of things, but probably introduce you into a “community” of other caregivers too. These people could really and truly understand what someone is going through in the role of a caregiver, since they are in the same position themselves. I’m going to suggest this to others as well. It is a great idea!

        I hope you both are doing well, and I’m so thankful for your contribution to this thread Patsy.

        Warm regards,
        Charlene

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