As a moderator of this forum for family members/care givers, I get asked to post topics that may be of interest to our members here. Hospice is a topic that no one wants to think about, but can be an amazing resource for caregivers.
I'm not going to say fortunately, or unfortunately on the next thing I say. I've worked with Hospice in caring for family members six times in my life. Sometimes it was for a very short amount of time, and another time it was for almost a year.
By the time my Mom was diagnosed with lung cancer, it was Stage IV. We found her diagnosis after she had a Grand Mal seizure, which was the result of brain mets. After the MRI, they told me that it had spread to her bones, liver, and brain and that she would not survive two more weeks.
They were wrong, because as you know, Doctor's cannot tell us how long we have to live. Period.
They offered her Whole Brain Radiation (WBR), chemo therapy and radiation to targeted spots in her body. Her first thoughts were of her brother, who 4 years earlier received the same exact dx. He signed up for all of the above treatments, suffered greatly, and only lived through 2 chemo treatments. He lived 2 months after his initial dx.
Taking this into consideration, Mom decided to accept the WBR, knowing that side effects from brain mets would not allow her any quality of life. She refused chemo and radiation.
Knowing Hospice does not become engaged with families if any kind of life extending treatment is being given, I did not approach her with this option. Once she completed WBR, she was not considered “in treatment”. Still, I didn’t bring it up because I knew it would be upsetting to her. For me, I thought I’d watch the situation carefully, and try to decide when it was the right time to discuss it.
She was in a considerable amount of pain, mostly due to the mets to her bones. My Step-Dad complained to me that they were spending over $1000 a month on pain and other medications. In addition, he was frustrated that the doctors were beginning to fight him on giving her more effective pain control because they didn’t want her to become an “addict”. PLEASE!!!!! It was then that I knew the time was right to discuss the Hospice option.
Knowing the conversation would be difficult, I started by asking if they knew that their medications would be free, if they qualified for Hospice care. What I mean by that is depending on what kind of insurance you have, in Michigan, you may qualify for this option. I had already checked it out and she did!
The first reaction was what I expected. She declared that she was not ready to die; if she accepted this care, it would mean that she had “given up”. We talked about the doctors and her frustration in getting her pain under control. I explained that Hospice’s role would not be to help her die. Rather, they exist to ensure that she lived with the best quality of life possible. They would advocate for her and Mike. The communication of her needs to her doctors would be done through Hospice.
She began to open up to the idea. She wanted to know if they would go away if she got better. I was smiled at her and just said “of course they would.”
I set up the initial meeting and made sure I was there to help her and Mike understand what it was all about. They were awesome in so many ways. The primary one being pain control. They took on the doctors and. They delivered the medications, and they were no charge. They taught me how to give her injections, if the situation ever called for it.
Mom lived for 9 months in Hospice care. They didn’t intrude on our lives, but were there when we needed them. They had a 24 hour support line that I used many times when things got a little out of control. But for the most part, she did what she wanted when she wanted. She was a shopaholic! She loved to go to the casino. She went up North to her favorite places with Mike. She was a talented seamstress, and made lots of beautiful things, that I still enjoy today. Bottom line is that she lived well.
Their support was amazing support for Mike and I as we loved Mom through her final days here.
Judy in MI
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.
1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!
*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!
Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25