Rosemarie Luevano
asked
Maria V. Ciletti:
I too am a nurse and care giver to our daughter that has Down Syndrome and was recently diagnosed with Danny Walker Syndrome and is probably heading in that direction also. She will be turning 27 yrs old on Tuesday,ow do you cope with this?
Maria V. Ciletti
Hi Rosemarie,
I am sorry to hear you and your family are going through this. I don't know a lot about Danny Walker Syndrome other than it is a neurological disorder. So I am not sure what type of or how much care is needed. There are three things I would like you to know; First, the only thing I know is that you can only take one day at a time - sometimes it is one hour at a time. Also, just because we are nurses we have a tendency to expect much more from ourselves,than we do from others in the same situation. Don't fall into that trap. It's difficult taking care of someone you love with a chronic illness. I think it is especially difficult when you are caring for your child. Second, there is no shame in asking for help. You can't do this alone. No one can. Ask for help. There are a lot of agencies out there that can really make a difference.
Third, having a sense of humor helps. I think this is what got me through some of the toughest times during my mother"s illness. Being able to laugh at yourself sometimes takes a lot of pressure off of thinking we have to be the perfect caregiver. (we don't have to be-we are human.)
Enjoy and cherish the good times. Sometimes this is what gets you through the really rough stuff.
I wish I had more to share with you, but when it comes down to it, these are the basic things a caregiver needs to know. How you use them is up to you. I wish you and your daughter the best. Maria Ciletti.
I am sorry to hear you and your family are going through this. I don't know a lot about Danny Walker Syndrome other than it is a neurological disorder. So I am not sure what type of or how much care is needed. There are three things I would like you to know; First, the only thing I know is that you can only take one day at a time - sometimes it is one hour at a time. Also, just because we are nurses we have a tendency to expect much more from ourselves,than we do from others in the same situation. Don't fall into that trap. It's difficult taking care of someone you love with a chronic illness. I think it is especially difficult when you are caring for your child. Second, there is no shame in asking for help. You can't do this alone. No one can. Ask for help. There are a lot of agencies out there that can really make a difference.
Third, having a sense of humor helps. I think this is what got me through some of the toughest times during my mother"s illness. Being able to laugh at yourself sometimes takes a lot of pressure off of thinking we have to be the perfect caregiver. (we don't have to be-we are human.)
Enjoy and cherish the good times. Sometimes this is what gets you through the really rough stuff.
I wish I had more to share with you, but when it comes down to it, these are the basic things a caregiver needs to know. How you use them is up to you. I wish you and your daughter the best. Maria Ciletti.
More Answered Questions
Barbara
asked
Maria V. Ciletti:
No question. Just want to thank you for the books you write. My mother died of complications from Alzheimer's. I spent her last years with her in a nursing home near me since I did not have the ability to care for her at home. It was daily a new experience. Thank you for sharing your knowledge and caring. Ok it wants a ? to let me send it.
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