April 24, 2018 at 8:07 am #12007Charlene MarshallKeymaster
As a patient living with a life-threatening illness such as idiopathic pulmonary fibrosis (IPF), do you spend time thinking about how much more difficult your life might be without a caregiver at your side? While I do not have someone who is with me at all times, I have a number of family members, friends and colleagues who are regularly step up to help me when I need it. There have been many times since my diagnosis that I can say with confidence: I don’t know what I would do without them.
Without a doubt, caring for someone with a life-threatening illness must be one of the hardest roles out there. This feels especially true for caregivers of patients with IPF. This is because they not only help the patient with the physical tasks that this disease robs from them, but caregivers also watch us inevitably deteriorate and struggle to breathe. Any caregiving role is difficult, emotional and is one that comes without a “how to” guidebook. As a result, sometimes the relationship between patients and caregivers can become uneasy or complex. This is especially true when emotions are heightened during such times as a new diagnosis, hospitalization or conversations about palliative care or end-of-life.
Caregiver and patient relationships can also become strained when the friend, family member or colleague who is supporting the patient experiences caregiver fatigue. This occurs most often when the caregiver unintentionally neglects their own needs and experiences burnout. I can imagine that for a caregiver, identifying boundaries and their own needs amidst supporting their loved one with a life-threatening illness is not an easy task, however it is critically important. It is because our caregivers are so loving and supportive that we as patients are so thankful for them. However, it is also necessary for their own coping to take time for themselves and find balance within their own lives with the role of being a caregiver.
To other caregivers out there who are supporting a loved one with IPF: do you have any tips to helping others in a caring role find this balance?
Below are some suggestions about establishing balance from caregivers in my life. As a team fighting back against IPF, my caregivers and I hope these tips are helpful and give you the strength to continue on in your fight against this life-threatening illness.
- Be intentional about setting aside time for you on a regular basis. Whether this is pampering yourself, spending time with your own social circle or taking quiet time doing hobbies you enjoy; it is important for caregivers to have time for themselves. Be intentional about setting aside that time, including how often you need it and how long you would like time for yourself.
- Pre-identify things you can and cannot do within yourself and with the patient. Unfortunately part of living with IPF means a decline in physical abilities, and the patient may quickly become unable to do certain personal care tasks. If this is something you cannot help with, it is important to voice this so that the caregiver and patient can problem-solve a solution together. Pre-establishing caregiver tasks that you can and cannot do gives each person an opportunity to be proactive and plan an alternative, as opposed to being reactive when the need arises.
- Let go of feeling guilty if you are unable to help. This tip is certainly easier said than done. However, it is important because the negative energy that is associated with guilt will not help the caregiver or the patient in the long run. No patient with IPF should be expected to fight this disease on his or her own, and likewise, no caregiver should bare the sole responsibility of the caring role.
- Seek out professional support for yourself (if needed). Not only is this important to do should you feel as though your coping skills as a caregiver are falling apart, it is also important to not be afraid to admit you need the help. Living with a life-threatening illness does not come with a manual, and thus everyone is responsible for establishing his or her own coping skills and sometimes, professional help is needed to identify what those are.
- Be transparent with your feelings of being a caregiver. While IPF patients have a lot on their minds and have to work through a lot of emotions themselves, we will not break if you talk to us about how you feel about being a caregiver. Being transparent and honest will only strengthen your relationship and give you an opportunity to discuss other options so that both of your needs are met.
I’d love to hear about other tips from caregivers out there!
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