VickiMost people actuate HOSPICE with the end of life. In most cases, hospice caregivers come into a patient’s and their family’s lives when the diagnosis is terminal and the patient has around 6 months until the end of life. The purpose of hospice is to make “end of life” more comfortable for the patient and their loved ones. Many families delay this service, fearing it will signal defeat or the end of life for their loved ones.
We waited too long to get hospice care for my Dad. He had decided to have no treatments for his far progressed cancer. None of his doctors or their staff suggested Hospice to us.
I had gone pick up some meds for him and found myself facing a Hospice office. I went in not knowing what to expect and came out with an appointment to visit us the next day. They brought a hospital bed and all the essentials for his care and set it up in the family room. Someone was with the family most of the time and was a phone call away. He died two weeks later. How I wish we had taken advantage of this months earlier.
HOSPICE and ALS
My experience with hospice is very different today. My son has ALS. He has been living with it for nearly 20 years. He has been in hospice for 3 years, and we both are so thankful that we made the call.
ALS is a fatal disease, as you are all aware. There is no cure, and there is no treatment. There is also no timetable for end of life. A PALS can go on hospice as soon as they are diagnosed. Our Phoenix Home Health and Hospice in Kansas provides all equipment delivered by Broadway Medical and set up in our home. A nurse visits us at least once a week and has a physician available for her to call, and they provide all his ALS meds. (Much better than your Neurologist giving you a diagnosis and telling you to get ready to die?) A bath aid comes twice a week. This compassionate group of people has an essential place in our daily lives.
You may have heard that to be on Hospice, the patient needs to sign a DNR. The patient or his legal medical representative can revoke that at any time. Bryan has gone to the hospital by ambulance twice since being on hospice. Each time, his hospice nurse came to sign a waiver that he was off hospice so he could be treated. When he was released, he was signed back in. This is one of the few benefits we, as PALS and CALS, are offered at no charge. They work together with the ALS local chapter in my area.
As a mother and caregiver, I’m asking you to use this valuable aid that is available to you without cost. Many still say, “It’s not time yet, or I don’t want my pal to think I’m giving up on them.” You are taking advantage of a benefit to make all your lives easier for however many months, years, or decades you fight this horrible disease.
If you have questions or concerns or just want to talk, leave me a message here. I’m happy to help in any way I can.