This is probably not the place, but I need to let this out for all those who have someone who is sick, not just with myeloma.
My daughter was in the hospital for 5 days getting her DCEP treatment. Leaving the hospital one night, I heard a man ask where he could get egg rolls. I asked the man if I could go with him. He is in a completely different situation than I am as a caregiver, but we both shared our stories over egg rolls. A complete stranger listened to me express my emotions. I will never see this man again, but he gave me so much.
As a caregiver, I am 2 hours from home and not very familiar with the city life. My husband has to stay and work (yes, we are to young to retire). The cost of eating, taking taxis to and from the hospital, the loneliness, being strong for our daughter is at times overwhelming. Yes, we have some family. Yes, our daughter has friends, but they are all caught up in their own lives. I only came home after 10 days because she wanted me to, but I worry all the time. She doesn't ask me to do these things, it's me who needs to be there.
Through no choice of her own, this has taken the life she knew. Her brother's blood is being tested to see if he can be a stem cell donor. He lives and works in India and wants to help so much. If he matches, he will be coming in the New Year for further tests and collection of stem cells. It's the only thing he can do to help. Just like my cleaning and being there is the only thing I can do or her father working so hard all the time to pay for taxis. Any of us would take this burden on for her.
So next time you are going for egg rolls, ask a stranger to go with you. You don't know how much comfort you can give that person.
Thanks for listening everyone.
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Re: Caregivers and Egg Rolls
Hi, while I have never had egg rolls with another caregiver, I have bonded with other caregivers, people I will never see again. And I understand all too well the caregiving role and how taxing that can be. I have to say honestly, I can't imagine having to be the caregiver for my own child though. That itself is a heavy burden.
Sometimes we do have to reach out to those other people in our lives who are often too busy for added support though. Every situation and struggle is different for everyone. But there are definitely times where we just might have to admit we can't do it all alone. I have found that most times people did not know how to help, but were just waiting for the opportunity.
Don't forget to take care of yourself as you are caring for your daughter.
Sometimes we do have to reach out to those other people in our lives who are often too busy for added support though. Every situation and struggle is different for everyone. But there are definitely times where we just might have to admit we can't do it all alone. I have found that most times people did not know how to help, but were just waiting for the opportunity.
Don't forget to take care of yourself as you are caring for your daughter.
Re: Caregivers and Egg Rolls
Dear Terri - I'm glad you met the man who asked about egg rolls and could express how you are feeling. My 27 year old son was born with a facial anomaly - he has had over 30 surgeries associated with his diagnosis. Some surgeries are minor (tracheostomy) whereas others can range from 5-13 hour surgeries with weeks of post op recovery in pediatric ICU. And, some surgeries are a breeze and others not good (bone infections with months of infusion therapy, aspiration pneumonia, extubation failure, coding, difficult sedation / drug withdraws, etc). So many unknowns ...
I've found most hospitals have a social department and can usually hook you up with others in similar situations to your own. Just having another parent to eat lunch with or go for walk often reduces the stress associated with being a cargiver. Plus, there are so many nice hospital volunteers willing to listen. I'm assuming your daughter is in a large hospital with a social department. I'm also involved with various support groups for people with my son's anomaly and they are helpful. I couldn't get thru the chronic isolation and stress without the support of others.
You have two lives; one that was the normal and the other involves caregiving with all the tests, surgeries, recoveries, unknowns, and medical professionals. I wish you and your daughter well. Diane
I've found most hospitals have a social department and can usually hook you up with others in similar situations to your own. Just having another parent to eat lunch with or go for walk often reduces the stress associated with being a cargiver. Plus, there are so many nice hospital volunteers willing to listen. I'm assuming your daughter is in a large hospital with a social department. I'm also involved with various support groups for people with my son's anomaly and they are helpful. I couldn't get thru the chronic isolation and stress without the support of others.
You have two lives; one that was the normal and the other involves caregiving with all the tests, surgeries, recoveries, unknowns, and medical professionals. I wish you and your daughter well. Diane
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Dianem
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