Handling PF on My Own

Handling PF on My Own

Just breathe, passionate help for the PF journey
I have a new appreciation for PF patients who live on their own or don’t have much help at home. I also feel gratitude for my husband, who helps me handle the tasks of daily life.

My husband, Dave, has been away for five days at a conference where he was one of the speakers. He first said he didn’t think he should go because he didn’t want to leave me without help. I encouraged him to go and arranged to have someone come over every day to help me with tasks or errands. I wanted him to go because I know that as my PF worsens, he won’t be able to be away much.

Before he left, he gave me a refresher course on how to turn off the water to the house, if needed, and how to reset the electrical breaker box, plus some other details. Now, I’ve known how to handle these type of things my whole life, but not so much in the last three years since my PF diagnosis.

(Photo by Kim Fredrickson)

For the most part, things have gone OK… except for the unexpected stuff. We have two kitties who are about 9 months. Dave always feeds them, takes them outside once or twice a day, and takes care of their litter box. I had a friend come over and clean out the litter box every day because that is not good for my lungs. Feeding them has been fine, but taking them outside in the morning has been a challenge. They really love to explore, so I thought I’d give it a try.

We just put GPS devices on their collars, so that helps us track them down if they leave the backyard. Yesterday, one of my cats, Rambo, got on our roof and couldn’t get down. It was really hot out, and he was panting. He got himself to an overhang that was a little lower than the edge of the roof. I know I shouldn’t have done this, but I got a ladder and went up three steps, and grabbed by the scruff of his neck and dragged him down.

(Photo by Kim Fredrickson)

This morning, I let them both out because it was cooler outside. I thought if he got up there again, I would just leave him there and he could figure out how to get down himself. Of course, being a mischievous cat, he got up on the roof again and started crying.

I left him up there for an hour and was determined to have him get down by himself. I stood near a tree branch and coaxed him to come down. My neighbor came over to help, and he eventually came down. My husband comes home tomorrow, and I’m not letting them out until then! Even though it worked out, it was so tiring for me.

I’m realizing what a big difference it makes in my quality of life to have my husband help with daily tasks such as:

  • Filling my portable liquid oxygen tanks and putting them in the car
  • Carrying things for me when I come home with groceries or other items
  • Taking care of the cats
  • Handling unexpected home and garden problems
  • Knowing he’s there at night, in case I have a problem
  • Going to the store to get things we need

I try to always thank him for all he does for me. I now have an even bigger appreciation for him than I did before. I know his life has changed so much too, and it is hard on both of us. I’m going to share with him what a huge difference he makes in my life when he gets home tomorrow.

My quality of life was so much lower this week. I was so tired this week because of the extra things I had to do. I didn’t have the energy to do some of the things I hoped to work on. I have a book releasing next month, and I had all sorts of things I needed to do that I didn’t have the chance to finish.

Thank you to all our caregivers who make such a difference in our lives. You help us so much in ways we don’t even realize. So, thank you so very much! I’d also like to express my empathy to those of you who handle the stressors of every day with PF on your own. You are going through so much on your own, and my hat is off to you.

How about you? I’d love to hear from you!

What jumped out at you from this column? Do you have someone who helps you with the daily tasks of life? What do you appreciate the most about your caregiver?

We’re in this together! Please share this post with anyone you think could benefit, or on social media.

***

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

11 comments

  1. Len Charette says:

    I too have IPF. I have only 1 caregiver and she unfortunately for both of us is bipolar. My oxygen is at 9.5 liters and the concentrator will not function any higher and my supplier does not do liquid. Hospice insists a higher oxygen level would not help me. I’m in big trouble. I’m one of those folks who are kind of in the middle in that while I am not poor I have a very small income and have just enough assets to disqualify me from welfare. I have called a woman who has worked in nursing homes and was referred to her by my very terrific Hospice aide. I’m in quite a pickle. Not sure what to do next. I know I can’t survive too long without more help. I just am confused about what to do. I put this off until the last minute.

    • Joan W says:

      Len ~ ask Hospice about the”Horizon” concentrator as it has a supplement device which goes from 10-15 O2 use. I have Invacare Platinum 10 @ 7
      so 10 is my limit. Horizon looks newer + quiet then they took it from me as I had started with invacare so could not upgrade. A Medicare “law” I suspect in CA? Hope I have the name correct! Google it for details

    • Brenda says:

      I am about 2.5 yrs into my journey. I have yet to understand a lot about IPF. I was missed diagnosed 1yr ago. Mine seems to be progressing slowly. For which I thank God for. Thank you for your information.

  2. Lea says:

    I don’t have anyone else! Maybe I should. My family and friends are so very important to me, and yet, I want to get a house a distance from here. I have always wanted to live in the country or in a forest. I want a slower life in a small town!

    My heart is calling me to move. I’d so much rather take them with me!

  3. JUDY KRASOVEC says:

    When I first came home from the hospital I was on 6-8 oxy , so my husband did grocery store and most bringing in the groceries, but he has been sick now with balance and etc, so I’m doing all of that again. The most tiring thing is getting in and out of the car. Mine is a low car and we live on a hill. My oxygen comp is not to accommodating . My sister passed away in ks and I had not traveled that far , it’s a small town so … I’m just going to get a couple more tanks and hope for the best.

  4. Lori says:

    I appreciate you authenticity and courage as you share your journey Kim! I can access a part of me that feels so helpless as I read parts of your journey! in my head I know you didn’t do anything to get PF… and I know that God still loves you and is in control??? But in my heart, I don’t know if I would be as strong as you are if I was in your shoes!!!!! I’m so grateful for what I have and am still able to do. I do get that health isn’t a forever state and it’s not to be taken for granted! Ultimately, as God’s children we will go “home” and get new bodies with no limitations- well be able to laugh and dance and worship our Lord with our whole beings! I’m looking forward to that for me and for you =). Thank you for your encouragement and inspiration to live life with intention. May God continue to work in you and through you, my dear Friend!

    • Hello Lori! So sweet of you to comment (Lori is a counselor friend of mine). I so appreciate your validation of how hard it is for me, and all my PF friends to live with this disease. And, yes…I am so looking forward to getting my new body in heaven with beautiful lungs! What a wonderful day that will be! Thanks dear friend…

  5. Ian Perry says:

    My carer is my wife of 46 years she is now 72 & we both get very tired at the end of the day. She gets no recognition or recompense for this work from the UK government as she has her own old age pension, paid from her own contributions when she worked full time until her retirement at age 60. I am full of admiration for her she is currently awaiting an operation on her knee as she has a torn miniscus & arthritis in the knee joint. She has an appointment on the 2/10/17 to discuss the position with the surgeon. I get very tired from living with the disease & the daily living with it. So we work together & Support each other in our daily lives.

    • Dear Ian, Thank you so much for sharing. I’m so glad you have your dear wife to help you, and walk through life together. I hope the doctor’s appointment goes well, and that her surgery is very successful. My husband had a hip replacement about 9 months ago and I wore myself out helping him, so please make sure and get extra help. I get so tired of dealing with the daily struggles we face, too.

  6. Valeria says:

    I have those same issues as I have to hustle my own tanks to and from the car and have been driving myself back and forth to the dr. I cook if I feel like it. I wash my laundry but there are not too many items. Since I dont cook like I did with kids dont need as much from the grocery store. I go slow and methodically b/c I am by myself for the most part. Always being prepared. Getting ready for transplant is my next hurdle.

Leave a Comment

Your email address will not be published. Required fields are marked *