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  • Let’s Talk About the Word “Caregiver”

    Posted by christie on April 27, 2021 at 9:01 am

    As a PF patient, how does the word “caregiver” make you feel? I recently wrote a column about how this word caused my mom a lot of pain in the early days of her diagnosis. It deeply affected her when her medical team started referring to my dad as her caregiver, rather than her husband. It forced her to reckon with her prognosis and imagine a future that she was not yet prepared to accept. My dad didn’t like it either, as he was committed to caring for my mom simply by nature of being her spouse.

    Over time, the word became a functional thing in our family. It was a job title that we used when my mom was in the ICU and later, recovering from her double lung transplant. During that time, she was happy to use the word, and happier to have multiple caregivers to help her recover.

    How does the word “caregiver” make you feel? Have your feelings about the word changed over time? Has a caregiver status changed any of your relationship dynamics? Both patients and caregivers are invited to share their thoughts.

    christie replied 2 years, 11 months ago 6 Members · 10 Replies
  • 10 Replies
  • becton1948

    April 27, 2021 at 7:21 pm

    This is a letter I wrote to my caregivers – my IPF hasn’t progressed enough to where I am totally dependent on them.  The letter was to tell them they need to take care of themselves while trying to take care of me:

    A quick word to you, my caregivers, as my degenerative disease progresses. As you know, this disease affects you, too. Just as it is important for me to maintain hope and actively engage in life, so too, it is essential to you guys.You all to some extent will be involved as the IPF progresses in my daily caregiving. This will be physically and emotionally exhausting for all of you, but I think more so for your mom/g’ma (the love of my life). Remember you need to take care of yourselves and each other as well. Build a support team of friends around you. Engage them, talk to them – don’t be afraid to share your feelings with them. Do things that are fun and enjoyable to you. Keep track of your own health. Open communication among family, friends and medical professionals will help the logistics to run more smoothly.
    One gift of a degenerative disease is that it reminds us of the shortness of life and what is truly important. One of those truly important things is relationships. As much as you are able, enjoy the time God has given us together. Allow yourselves emotions like anger and fear, but also happiness, and the peace that only God can provide. Life is not just IPF!

  • christie

    April 27, 2021 at 7:32 pm

    @becton1948 Bill, thank you for sharing the letter to your caregivers. My mom shared many of those sentiments with me as well, and told me to lean into my supports when I felt the burdens become to heavy. I am grateful that she encouraged that, as it helped me to ask for help without feeling guilty. Before her decline, I had a hard time asking for help, so this is a gift IPF has given me. Trust others with your struggles and pain. It sounds like you have a big crew rallying behind you as you go through this, which is a blessing that not all can claim. Enjoy time with your loved ones, like you said, you know that relationships are truly important.
    Wishing you the best, thank you for sharing,

  • ben-robinson

    April 27, 2021 at 9:28 pm

    I feel very lucky to have a good one and good family coming to my aid.  I was once proud of my physical prowess and never dreamed i would have to depend on others like this.  I use the word caregiver proudly and am thankful for those around me.  God bless those who give of themselves like this for others.

  • christie

    April 28, 2021 at 4:28 pm

    @6yearvet Ben, I am glad that you are proud of the word and that you have family to help when your main caregiver needs a break. It is really hard to let go of “physical prowess”, so I admire that you have embraced the word caregiver!

  • ann-garner

    April 29, 2021 at 7:39 am

    Over the last 3 years I realise I have become my husband’s carer first and wife second which makes me sad sometimes. I am very lucky because he’s so grateful for my support and I try not to feel cheated out of the fun  and time we had planned  together; we take each day as it comes, helped probably by the COVID restrictions we’ve been under for so long.

  • julie-grace

    April 29, 2021 at 2:41 pm

    So touching to read the stories shared about Caregivers. Just today, my husband agreed to have a CNA come into our home to help him with bathing. This was a big step for him. His visiting nurse suggested it for a couple of reasons. The first was to see if having a professional assist with this task would help him to become less O2 depleted as when I assisted him and the second was to eliminate my feelings from being hurt if he became frustrated & lashed out verbally @ me. The nurse nor we want us to spend the little time we have left with each other bickering over things that could easily be eliminated by having a professional caregiver do for him instead. So wish us luck as we step into this new adventure.


    • christie

      April 29, 2021 at 4:06 pm

      @juliegrace That is such an excellent idea and I am glad that he was open to it. Having professional help come a few times a week or more can be such a relief for everyone. You’re right that you don’t want to spend your precious time being frustrated with each other, or exhausted by the responsibility all of the time. I think it will be good for you to get some time built into the day where you aren’t in a caregiver-patient relationship and can reset your brain. Plus, as you said, it will likely make those chores less taxing on him physically to have a trained, strong person relieve some of the effort of bathing so he can feel better the rest of the day.
      Thanks for sharing, and let us know how this all works out for you two!

  • christie

    April 29, 2021 at 3:59 pm

    @ann233 It’s really hard to let go of the life you had imagined. Sometimes we can delight in new opportunities, but it doesn’t make it easier to surrender the plans we’ve made. I’m sorry that you’re going through that.
    I know my dad struggled with that too, and still does as my mom can no longer do a lot of things around the house after her lung transplant that used to be her responsibility–caring for pets, gardening, helping with their house remodel, etc. It’s a small trade-off at this point, but I know he gets frustrated pulling extra weight sometimes. Plus doing all of the errands outside the home this past year so that she could stay away from crowds.

  • marianne

    May 7, 2021 at 8:36 am

    Hi all –

    I don’t have a caregiver yet.  I recently went on oxygen upon exertion.  I am still able to live by myself.  I have 2 adult children.  One lives 1 hour away from me and the other lives out of state – about 8-9 hours away.  My children have never wanted to take about my IPF before.  Now the one who lives 1 hour away wants to discuss me either moving closer or moving in with his family as my disease progresses.  I have mixed feelings.  First, I am not yet ready to give up my independence until I absolutely have no option option.  I have tried to talk to them in the past but they have shut down the discussion saying I will live forever.   I have lived in my community for 37 years and have many friends here.  We have a very small family.  I have talked about moving to assisted living if needed.  I put all my legal paperwork in order before I had my official diagnosis.  I have always been an active person.  I don’t like to stay home.  I love to be out and about.  Visiting family, friends, running errands, etc.  My children are concerned that if I go to assisted living facility I will be required to turn over all my assets to the facility.  I realize some are set up that way but not all of them.  I really don’t think living with my either of my kids is a good idea.  One is a single professional (female).  The other is married with toddler not yet 2.  Both children have pets and I am allergic to  dogs and cats.  I am not opposed to moving closer to the one who lives 1 hour away.  Any suggestions from either caregivers or fellow patients would be helpful.  I believe they are concerned as my son’s wife’s grandmother recently passed away.  She was younger than I am and was on oxygen 24/7.  She had lung cancer.  Thanks for reading this long message.



    • christie

      May 7, 2021 at 5:16 pm

      Hi @marianne, Thanks for sharing. I definitely understand the hesitation to move in with your son and his young family. Especially since they have pets–you don’t want to exacerbate your symptoms with allergens!

      My grandma lived in an Eskaton for many years, and she started out in an apartment that was totally independent. I would call it more of a “retirement community”, but she progressed through needing assistance in her apartment, and ultimately to skilled nursing toward the end of her life. I’m not sure how they dealt with her assets/finances, but I do know that it gave her (and all of us) great peace of mind to know that she would have help if she needed it, and wouldn’t have to move anywhere except maybe to a different area of the same facility.

      Moving closer to your son could be a good compromise if they are willing/able to help out with caregiving duties if you should find yourself in need of that. I’m glad your son is more willing to discuss the options now than it seemed like he was in the past. It’s hard for us kids to accept that our parents are ill, but ultimately, being prepared to handle what may come is worth the pain of coming to terms with it.

      It sounds like you’ve got a long way to go before you really have to make moves on this, but for now, do you have friends in the community that are aware of your health situation? It would be good to have someone nearby on-call if you have an exacerbation or something.

      I hope your POC situation gets sorted out and you can continue to live comfortably at home for as long as possible 🙂

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