Hospice Care for DMD?
I have a friend whose son has DMD and is really having a hard time. He has been on numerous meds and continues to seemingly go downhill. His mom has absolutly run herself to death by being his home "nurse" 24/7. He is suffering from horrible diarrhea, and is on IV antibiotics that she is having to give every 6 hours. He is hurting and weakening right before he eyes. Does anyone know when hospice can or will step in and help? I know that years ago, they would not help unless they felt the person had 6 months or less to live, but I know its changed now. If anyone has any info, please let me know. If you think you can help her please send me an email address or something and I will send ti to her. She is such an amazing person, and her son is just incredible too. I really want to try and help her. Thank you all so much in advance.
Replies to This Discussion
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Permalink Reply by Cheri Gunvalson on
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I would give the hospice nurse a call for a consult. In our area they have in addition to trained staff volenteers which provide can help allot. My dad had hospice, when he became a quad at age 73 and due to respiratory problems we thought he would not make it and we wanted to make him as comfortable as possible. He was in a nursing home and had hospice in addition. The hospice nurse had standing orders for medication so when he was in pain she could increase the dose right away. After 6 months he did not die as we expected and went off of hospice. I know it is so hard to make the step to even discuss hospice but we have found the nurses to be very helpful. Take Care, Cheri
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Permalink Reply by vilma rodriguez on
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My son is currenty on Hospice an he is in the Aged/Disable Adult waiver program since Hospice respite care is limited and the needs of the patient and caregivers for help is very demanding specially if you choose to keep your son at home. At first it was hard but my son's quality of life has improve his gastrointestinal problems minimized a great deal, he is pain free,he is able to use his computer,he has respiratory issues and is currently using a by pap 24/7 provided by Hospice and he is able to keep his primary care physicians and all his specialists and they all work together to provide palliative care and help to the whole family. I ADMIRE THIS DEDICATED NURSES DOCTORS AND PERSONNEL THAT STRIVE TO HELP YOU IN THIS DIFFICULT TIMES and the best of all is that you are in control as far as deciding what's best for your loved one. He is being stable for the past year and was not expected to make it since 2007.Also FAITH IN GOD prayer and a relentless desire of not giving up." God is good in everything he does and make me this way so people learn to appreciatte what they have" this are words of my son that even thru his situation he is able to comfort others and inspired a former Hospice nurse to pursue a carrer in Occupational Therapy to help others. Hospice benefits may vary depending where you live so your doctor is the one who can recommend the Hospice care. Our boys are soldiers fighting a honorable battle and even thou many had fallen they have never lost the battle since the fight continues. God Bless
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