I read a really informative posting on Carol D. O'Dell's wonderful blog, Mothering Mother and More, entitled "Is It Time to Call Hospice? Three Signs Caregivers Need to Know." It brought back memories of when my husband was ill with esophagus cancer and in tremendous pain. I didn't know which way to turn, and the narcotic pain medicine his two doctors prescribed didn't seem to help much.
My husband was in tremendous pain, 24/7 with esophagus cancer. Although he didn't say much, I know it was living hell for him with the pain. I was trying to manage it for him (heavy narcotic pain patches, high-end narcotic drugs, etc.), and I had never had any training and didn't know which way to turn. Neither doctor suggested hospice to us. Many times I would call the doctor's after-hour on call services, and receive nothing in return. Usually it was another doctor on call and he didn't want to be responsible for uping any medication. It was incredibly frustrating and ineffective to have to wait another 6 or 7 hours when someone you love is in debilitating pain.
I was under incredible stress because I was afraid of giving my husband too much medicine, and also trying to keep our three boys (11, 17, 18) on an even keel. When my husband was 3 months into his cancer diagnosis, my sister in law, who is a nurse and lives away, came to see us. She immediately told me I should contact hospice for pain control. She assured me it was their forte. I knew something had to be done. I had always associated hospice with end of life services, and didn't know they would help with the pain management end of things.
Once I contacted hospice they acted immediately. It was still a roller coaster with the pain, (many days of extreme ups and extreme downs) but there were also many days it was adequately managed and his pain seemed bearable. Hospice worked continually on his pain management, and my husband was on hospice 7 months before he passed away. They did everything possible to make this situation less stressful for not only my husband and myself, but my children also.
Here is a link to Carol's posting. http://caroldodell.wordpress.com/
Showing posts with label caregiver. Show all posts
Showing posts with label caregiver. Show all posts
Tuesday, April 8, 2008
Friday, March 28, 2008
Caregiving and the Final Conclusion
Loss is devastating and we’re never prepared, even following caretaking over an extended period of illness. We need to talk about it more, to help bring each of us, the ill and the caretaker and family, to a more accepting, peaceful, loving and accepting conclusion. But it is difficult.
Sunday, February 10, 2008
Caretakers
Ask, interview or interact with any family caretaker and check out their stress level. It's only common sense that the caretaker is the one carrying the burden. I recall the time when my husband was ill, 98% of my entire focus was solely on him. I didn't dare relax that vigilance for fear of doing something wrong. Missing a doctor appointment, juggling medicines and narcotic prescriptions. The onus is on the caretaker to follow through with doctor's orders and even daily life, which may end up meaning daily survival for the ill person.
This should be (and perhaps is) common knowledge among nurses, hospice works, medical professionals such as doctors and their staff. My husband's holistic doctor inquired as to my health a few months before my husband passed away because I had laryngitis for almost two months.
In all honesty, I stated I was fine, even thoguht I wasn't, and pretty much brushed aside his concern. But for an older caretaker, I would be very worried for their health. Many times while you're in the thick of caregiving, you just keep going. You give no thought usually to how you're eating, what sleep you're losing. You just know there is another pill that has to be administered, one more feeding to take see too, another test result to look over. It's your full time job that you volunteered for. There was no sign up sheet. It's just the way it happened.
This should be (and perhaps is) common knowledge among nurses, hospice works, medical professionals such as doctors and their staff. My husband's holistic doctor inquired as to my health a few months before my husband passed away because I had laryngitis for almost two months.
In all honesty, I stated I was fine, even thoguht I wasn't, and pretty much brushed aside his concern. But for an older caretaker, I would be very worried for their health. Many times while you're in the thick of caregiving, you just keep going. You give no thought usually to how you're eating, what sleep you're losing. You just know there is another pill that has to be administered, one more feeding to take see too, another test result to look over. It's your full time job that you volunteered for. There was no sign up sheet. It's just the way it happened.
Tuesday, January 22, 2008
Caregiving: If You Knew the Ending, Would You Change the Beginning?
By Elaine Williams ©2008
When someone you love is told they have a terminal illness, you world becomes a narrow focus based on doctor appointments, meeting with healthcare advisors and keeping that person comfortable. In essence, many times we choose to put our life on hold to see to the needs of the person we love.
My husband was ill for eleven months before he died from cancer of the esophagus. While it was a grueling experience for our entire family, it also brought all of us closer together. As sole caregiver, I was focused entirely on his day-to-day care, and I was grateful for our extended network provided by Hospice, doctors, nurses, technicians, pharmacists, family and friends.
The last two months of my husband's life I slept next to the bed Hospice had set up in our living room. At night, I lay on the loveseat I'd come to hate and listen intently to his labored breathing. It was what I did when my kids were babies—listen intently for the next breath to make sure everything was okay. When my kids were babies, as when my husband was dying, I was alert to a breath interrupted or a sign of discomfort.
I managed to sleep in bits and pieces of time, fragments that made no sense to me. I would be sleeping soundly and then I would jerk upright, wide awake. I was exhausted mentally, emotionally and physically. I had always been very healthy, but I developed laryngitis for two months while caring for my husband.
There was such uncertainty and the fear of what was going to happen to all of us. The last week of his life, as he gradually grew weaker and more frail, I reached a point where I knew there was no going back. This was it. It was all out of my hands; not that I had ever had any control. Being in control was something I let myself believe in the beginning. Perhaps it was my way of getting through each day, thinking I actually had a say in what was developing in our midst.
Many times on that loveseat, I would lie awake and stare into the dark, overcome by an utter, unremitting aloneness. It was then I asked God to take him and take away his pain.
My husband mentioned a few times the last week of his life that he really needed a haircut, but I didn’t have the heart to call the barber. I wanted to spare my husband the possible shocked reaction from someone who had last seen him when he was healthy and vibrant.
Near the end of his life it was brought home to me that when you love someone, you’re subject to a certain vulnerability, but it doesn’t mean you stop loving. Moments during his illness, I wanted to shield my family from all pain, but many days I knew there was no guarantee I could even protect myself.
http://www.ajourneywelltaken.com
When someone you love is told they have a terminal illness, you world becomes a narrow focus based on doctor appointments, meeting with healthcare advisors and keeping that person comfortable. In essence, many times we choose to put our life on hold to see to the needs of the person we love.
My husband was ill for eleven months before he died from cancer of the esophagus. While it was a grueling experience for our entire family, it also brought all of us closer together. As sole caregiver, I was focused entirely on his day-to-day care, and I was grateful for our extended network provided by Hospice, doctors, nurses, technicians, pharmacists, family and friends.
The last two months of my husband's life I slept next to the bed Hospice had set up in our living room. At night, I lay on the loveseat I'd come to hate and listen intently to his labored breathing. It was what I did when my kids were babies—listen intently for the next breath to make sure everything was okay. When my kids were babies, as when my husband was dying, I was alert to a breath interrupted or a sign of discomfort.
I managed to sleep in bits and pieces of time, fragments that made no sense to me. I would be sleeping soundly and then I would jerk upright, wide awake. I was exhausted mentally, emotionally and physically. I had always been very healthy, but I developed laryngitis for two months while caring for my husband.
There was such uncertainty and the fear of what was going to happen to all of us. The last week of his life, as he gradually grew weaker and more frail, I reached a point where I knew there was no going back. This was it. It was all out of my hands; not that I had ever had any control. Being in control was something I let myself believe in the beginning. Perhaps it was my way of getting through each day, thinking I actually had a say in what was developing in our midst.
Many times on that loveseat, I would lie awake and stare into the dark, overcome by an utter, unremitting aloneness. It was then I asked God to take him and take away his pain.
My husband mentioned a few times the last week of his life that he really needed a haircut, but I didn’t have the heart to call the barber. I wanted to spare my husband the possible shocked reaction from someone who had last seen him when he was healthy and vibrant.
Near the end of his life it was brought home to me that when you love someone, you’re subject to a certain vulnerability, but it doesn’t mean you stop loving. Moments during his illness, I wanted to shield my family from all pain, but many days I knew there was no guarantee I could even protect myself.
http://www.ajourneywelltaken.com
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