As we head into this New Year I wanted to take some time to thank all the caregivers who help us live with pulmonary fibrosis. It is easy for me to be aware of all I’m dealing with as a result of this illness, and unintentionally minimize the impact on my caregiver husband. I tend not to be aware of what he is going through on a daily basis, as I deal with using supplemental oxygen wherever I go, being tired all the time, and facing all the emotions that go with a foreshortened life. I’m not hard on myself that sometimes my own struggles mute what he is going through, too. It makes sense. The reality is we are both going through so much.
The Challenges are very real
The challenges that caregivers face, became very real to me last month. My husband had a hip replacement and I was his caregiver for the first three weeks. His procedure was done as an outpatient (surgery at 7:30 a.m., home by 2 p.m.). It was very successful, for which I am grateful, but it also took its toll on me.
Boy were we a pair … me on oxygen, he on a walker. We were quite a sight. Here’s a picture of us at the end of two weeks. The first few weeks were really hard because I had to do so much physically that I normally don’t do. I was exhausted!
It was much harder to be a caregiver who has pulmonary fibrosis, of course, but it would have worn out anyone, even if healthy. This experience heightened my awareness and appreciation for what caregivers go through. When our lives got hijacked by this illness, so did theirs.
- Their everyday lives have drastically changed. If you have been recently diagnosed, maybe not so much yet, but it will, in time. Days are filled with helping, driving, medical concerns, and not too much personal time.
- The future they imagined has changed, too. Plans for retirement, time together, and possibly financial resources look different now.
- They are grieving, too, and also are adjusting emotionally. They are going through the same cycles of grief that we are. (Check out my recent post to learn more about grief and healing).
- They are tired and stressed, and need help, too. Being a caregiver is a wonderful and precious gift, shared from a loving heart. This doesn’t change the wearing effect it has on them.
- They may minimize the effect on themselves because what we are going through is “so much worse.” That’s true, but what they are going through is big, too.
I’m not saying this to make us feel bad about needing others to help us through such a difficult time.
I know there is a lot more I could share about what caregivers go through. We didn’t cause this to happen, and neither did they. There’s no “bad guy” here, except the disease itself. I am hopeful this post will have two positive effects:
Patients: Appreciate your caregivers
- Express gratitude to your caregiver, through words, card or even a text message.
- See if others can give them a break by coming in to help.
- Order a gift or gift card for them online.
- Be patient with them. They are going through a lot, too.
- Encourage them to take time for themselves and care for themselves.
- Don’t get down on yourself for needing help. You can’t help it, and would change it if you could.
For more amazing ideas from AARP to bless your caregivers, click here
Caregivers: Take care, you matter, too!
- Give yourself permission to do a good, yet imperfect, job. You’ve never done this before. Caring for someone requires lots of learning, and just when you have it down, it changes.
- Be patient with yourself. You are human and have very valid needs of your own. There is no way to avoid getting irritable and short-tempered. This is a normal reaction to being exhausted and grieving yourself.
- Take steps to take care of yourself. You need good food, exercise, time away, and things/hobbies that don’t include caregiving.
- Learn to accept help. It is a sign of strength to accept help when so much is required of you.
- Download this must-read article from caregivers.org, “Taking Care of You: Self-Care for Caregivers.”
Caregivers deserve appreciation
I hope this has been helpful, both as a patient and a caregiver. Let’s give a high-five to our caregivers, and let them know they are appreciated and deserve care, too.
Comments please! I’d love input from patients and caregivers alike. I want to keep learning, and you have so much wisdom to share.
What is your response to this post? What stood out? Patients, what are ways you honor and encourage your caregivers? Caregivers, what are ways you care for yourself and keep going?
Please share this information via e-mail or social media with anyone you know who could benefit.
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.
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