June 24, 2018 at 7:55 am #13170
Being a patient with a life-threatening illness, such as idiopathic pulmonary fibrosis (IPF) is difficult and hard to manage. Being a caregiver to someone living with IPF must be exceptionally difficult as well, and I don’t believe caregivers receive enough praise, thanks and support in their role of caring for us patients.
Recently I came across an article on the Cleveland Clinic website about balancing your loved one’s autonomy with being an advocate as their caregiver. It had some concrete examples, 7 in total, about how caregivers can help their loved one while “walking the fine line” of giving them independence and autonomy. I sent the full article to the people in my life who help me navigate my illness, and thought I’d share it here as well.
It was also helpful for me to read as a patient, because it is helped me gain perspective on just how difficult the role of caregiving can be. It also helped me realized just how much effort, and personal sacrifice goes into caregiving for someone with a chronic illness and I am so thankful for the people in my life who regularly support me through living with IPF.
Thank YOU to all the caregivers out there! If you want to read the full article, it can be found here.
September 21, 2018 at 9:18 am #14554
Wow this is a brilliant article and honestly I feel it really hits the nail on the head at how best to act as a Carer. Most of all I think the important virtue to have is patience, everything slows down and everything takes time, both physically and emotionally. It’s taking time to listen, to take notes as not everything goes in at once, to thinking and planning ahead as well as finding methods and routes to making life easier.
However, I must also stress that giving back independence is key where it can be possible. I’ll provide some examples below how I did this for Dad and maybe this might give some thought to other Carers, or perhaps they can provide their own methods at doing something similar.
* Washing & Bathing. For the time that Dad was still mobile, we just made sure we had adequate time so that he could keep control of his own personal hygiene. Mornings were always difficult so I would often be up before him and allow him time to sit up in bed and to come round, to let his oxygen levels normalise before he attempted trying to walk. In the bathroom I would fill the sink with warm water and place a stool for him to sit, I’d pop a few drops of lavender oil in and a clean cloth and he would happily sit there for a while. I’d pop clothes near to him and after he washed himself, he would gradually dress himself and get himself ready to be up and walking. This gave me time to prepare breakfast as well as clean the house and get anything ready for him.
* Medications & Oxygen. I left this entirely to him. He used his diary to mark down what he had/needed to take and so all I did was just grab his box of meds when he needed them at set markers in the day. He used liquid oxygen and so at certain intervals he would slowly make his way through to fill them up. Really my Dad was a huge credit to himself as he wanted to remain as independent as possible, I was just around to be there on the bad days when he didn’t have the strength or to help keep him company as well as chauffeur him around hospital and hospice appointments.
* Asking Dad to do stuff. Thankfully we live in a bungalow so it’s easy to move around but every now and then I would task him to make us both a cup of tea. He would often lament at how sad he felt that he put on me all the time to do stuff, and he was always apologising. Of course it was a privilege to me to take care of him but I recognised that to keep him comfortable I had to make it feel as if we were even. Sometimes I’d ask him to make us a drink or ask him to fetch me something from the next room such as a book etc. It encouraged him to keep moving around but I think it made him feel better that he wasn’t having people waiting on him all the time. He loved baking too and was amazing at making scones so I would set him up in the kitchen to do this with little moving around and bending and stretching.
* Finding new hobbies. As much as it can be nice to sit infront of the television, it can also be mindlessly boring so I tried to find new areas he would be interested in and follow that through. He loved History so I bought him books and he wanted to learn Latin so I found him a book to use and would sometimes quiz him. Getting out of the house involved planning but together we were determined so even if we drove to a park and he walked five steps it was still a big achievement to the both of us.
Really it all came down to being positive, being prepared and as I said, being patient.
- This reply was modified 2 years, 3 months ago by Katie Bagshawe.
May 28, 2019 at 8:12 pm #19469linda waldschmidtParticipant
@katiebagshawe , At what point did your father receive anxiety meds or pain meds like morphine? What level of oxygen was he on when he passed. Also my heart goes out to you for the lose of your father. He was blessed to have a daughter like you.
- This reply was modified 1 year, 7 months ago by Charlene Marshall. Reason: tagging
September 22, 2018 at 8:49 am #14564
I also really liked this article, and found the tips very helpful as a patient advocating for my own independence but also balancing my needs / help from a caregiver. A bit different of a perspective (it is targeted for caregivers I think) but it helped me understand a carers thoughts as well in terms of how difficult it must be to want to give patients independence but also provide that assistance they need. I revisited it since your reply on the forums, and it was a timely reminder for me 🙂
Thanks for sharing how you helped find this balance with your Dad Katie, he was so lucky to have you and you sound like an incredibly patient person which is so important as a caregiver. I know this is something many of my carers struggle with. So appreciate your sharing a bit about your journey as patient and caregiver between you and your Dad.
September 22, 2018 at 3:25 pm #14575
In all honesty I find it difficult sometimes to share because I feel I had “easy” with my time as a Carer. My Dad was my absolute hero so there was never any doubt that I would help him, it made sense for me to drop everything and be by his side. The hardest part is coming to terms with not only his loss but also losing this identity as being someone who looks after someone else, suddenly all purpose disipates and you have to figure out what your role is. The real kicker is that Dad would have been the person to turn to for advice and he’s not here.
September 23, 2018 at 8:37 am #14587
Thanks for your reply and for sharing your thoughts. I couldn’t agree with you more in terms of the identity piece! I’ve heard so many people talk about their role as a carer being their sole identity for so long, and then once that relationship changes (be it renewed health, due to a death, etc) that identity is then snatched away. I can’t imagine how confusing that must feel, especially when the role is so highly valued since carers are so important in our everyday survival of living with IPF.
I am not surprised at all that this is a tough topic for you to share/talk about, and I certainly applaud your bravery in doing so. Thank you for sharing pieces of your Dad with us, it sounds like you had a special relationship with him and that he was a wonderful man. Hold on tight to those memories.
September 24, 2018 at 12:33 pm #14603
Thanks Charlene, I absolutely will. We recently cleaned his bookshelf and found some letters he had written to us (one for each of my brothers, for me and my Mum) and really that is a treasure I can hold on to forever. He thanked me a great deal for being there for me and for wishing that one day we’ll be reunited, but more importantly that he wants me to get on with life and keep being who I am. It’s not an easy journey, anyone who has dealt with grief I’m sure will understand it. It’s just having this swarm of knowledge and then not being sure what to do with it, a lot of my family avoid talking about PF and his illness as its just too difficult which in turn makes it hard for me as it was and is a huge part of my life and I’m devoted to helping and giving back in any way that I can. I’m currently writing about our journey, he wished for me to write and I feel that be relieving all these memories will help me pick up and move on.
If anyone has any questions though about my experience or even just wants a bit of an “agony aunt” figure I’ll be more than happy to be a listening ear or perhaps offer some guidance.
September 25, 2018 at 3:09 pm #14632
Wow, this brought a tear to my eye, not only out of sadness around how much you must be missing him but also out of the beauty of it: your Dad sounds so kind and thoughtful to do that for all of you. You must absolutely treasure those letters, and I am confident that his advice and wishes for you will drive you forward someday in terms of continuing on with what you love. However, I know grief isn’t linear and its important to take the time in figuring out ‘whats next’ after a loss so significant. It’s not easy at all, as you say, and I do hope that your writing and reliving those memories is bringing you some comfort.
Take good care of yourself.
March 28, 2019 at 2:34 am #17968Shumita RalliParticipant
Hi Katie and Charlene
I’m new to this forum with my dad having been diagnosed with IPF two weeks ago. Before that he seemed fit as a fiddle and was brisk walking ten kms daily. Two weeks ago he came back breathless from his walk and since the diagnosis we suddenly have new words in our vocabulary such as IPF and Nintedanib which we didn’t know existed. My mom’s beside herself and hilts dad is being very brave, I can’t begin to imagine what’s going through his head. He’s gone really quiet and my sister and I are trying our best to help him keep cheerful.
Katie, thanks for sharing your story – your dad sounds just like mine – a trooper and a hero.
All the very best to both of you. Regards
March 30, 2019 at 7:16 am #18009
Thanks so much for joining the forums and contributing to this topic post! Sorry to hear of your Dad’s diagnosis – this cruel disease tends to show no mercy towards folks young or old, fit or not. How is your Dad doing with this news? The quiet is something I experienced too, but certainly was pondering a lot in my mind. It sounds like the doctor put your Dad on Ofev (Nintedanib) right away? How is he tolerating it? I am on Ofev as well, 150mg x2 daily so let me know if you have any questions and I will try to help with that. While some of the IPF-related topics are tough to talk about, what I found helpful was creating a space to bring forth those difficult topics/discussion points. Sometimes I would say to others who needed to know about my disease, “Ok, for 30 minutes we can talk about the hard stuff, or your questions about my disease”, creating an open space to talk freely about IPF but after the 30 minutes (as an example) I normalized my time with the people I love, ie. friends/family. Creating space sets limits around the length of time one can discuss difficult topics, but also opens the door to do so which I believe is important. Not sure if this helps at all?
Feel free to connect anytime Shumita, we’re all here for you and your family. Sending you much love!
April 1, 2019 at 7:32 am #18047
Hi @shumita. First of all my love and thoughts go out to your Dad and your family, my wishes are with you right now in this journey. If there’s anything I can do to help in regard answering questions or just being a listening post then don’t hesitate to contact me. It can be extremely distressing as a family member watching your loved one take such a turn for the worst and I hope that you and your family are also recognizing that you too need support and guidance during this difficult time as well as your Father.
I love Charlene’s advice on limiting talk about the illness as sometimes it can feel all consuming, and you have to sit back and realise that your Dad is still very much here and these are the times in which to be present in encouraging good memories together. Personally speaking on a similar vein, don’t let the illness define you or your relationship with your Dad. Remember why you love each so much, talk about things you share and spend time together that refocuses on positive memories. Take it step by step, don’t dive in too deep and for goodness sake, avoid Google. I would wholeheartedly recommend you ask questions to medical professionals, or even better on here as everyone around us is living the same journey as you and your Dad, they speak from experience and can provide advice like no other. Google is nothing but scaremongering I’ve found and it only takes one bad result to send you on a spiral (it did for me many times!)
Everyone will respond to the diagnosis differently, it’s still early days for you so it may feel extremely overwhelming. Check in with your loved ones to see how they’re coping and more importantly, check in with yourself to see how you are handling it as well. Don’t be afraid to show emotion, to let your feelings out but equally, remember that this is not yet the end, there is still time to be had and I encourage you to find ways in which to spend time together in a positive way.
Once again my love to you and all your family, and if there is anything we can do to help, don’t be afraid to post <3
March 28, 2019 at 2:01 pm #17977Jay Turbes-sParticipant
The Cleveland Clinic has a number of caregiver-related articles there. Is there a particular one you had in mind?
J. in CO
March 30, 2019 at 7:19 am #18010
I hope you’re doing as well as possible Jay! Here is the link to the caregiving article I had been reading about on the Cleveland clinic’s site: https://my.clevelandclinic.org/health/articles/9226-caregivers-successful-caregiving
Hope this helps! As you say, there are a number of related caregiving articles on various websites, and I liked this one so chose to share it but if you come across any other good ones, feel free to connect with me about them as I’d like to share them here also.
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