It is vital to everyone involved that your loved one who has an advanced illness gets the best care and support they need. Having the hospice care conversation can be tough, especially when it is started by other family members. A loved one may not think they need hospice care, even though they’ve experienced someone else in the same care.
I am Cindy Woodyard, vice president of public affairs at WV Caring, and this is the start of my journey with my mother into hospice care.
THE BEGINNING OF THE JOURNEY
Our conversation started when my Access Director came to our home in May of 2009 to assess Ben, my step-father, for hospice care services. We thought we knew everything and kept telling Mary, a nurse, that he had Alzheimer’s, but it was actually Lewy body disease. For those who don’t know, Lewy body disease is one of the most common causes of dementia and is often mistaken for Parkinson and Alzheimer disease.
Mary, not one to mince words, looked at me and said, “His diagnosis will be Parkinson disease because that is what he’ll die from because it is more aggressive.” While Mary was talking to my mother and reviewing Ben’s medical records, she gave me that look.
I said, “I know; you are talking about a two for one here.” While going through his records, Mary said, “I see that Dr. Malone told you in December, five months ago, that Ben wouldn’t be here for Christmas.” And then she asked my mom, how are you taking care of him? You have chronic obstructive pulmonary disease (COPD) and you’re on oxygen and not very well and proceeded to ask her questions to assess her health.”
My mom confessed that it had been almost impossible to bathe him taking almost two hours at times, and that overall, it was very difficult since his disease was quickly progressing. My mom thought that she could take care of him better, even in her failing health, and she had a lot of help from my sister, too. At that point, I knew we had started to have the conversation with my mom – even if hospice was the elephant in the room.
During this time, my mom received the extra support she desperately needed for herself and realized that she was worn out from waiting months to get Ben on hospice care. Their experience was great — Ben loved his care team. His clinical nursing assistant could bathe him in minutes compared to taking hours. Ben died peacefully about two months later at their home with my mom and family by his side.
Looking back, my mom experienced the care and help first hand. She thought they were like angels, and they were angels for everyone – for her especially.
Even though my mom thought the hospice care services she received was a great help, and I would hear her tell her friends how hospice made it so much better for them. And later when my mom and I talked about hospice for her, my mom said to me that she did not need hospice. I know that although her body was failing her physically, I know that she was mentally sharp and not ready to die.
Every month, I will be writing about my journey with my mother in the hopes that this will help caregivers and their loved ones come together to make the best decision for them.
WV CARING | HAVING THE HOSPICE CARE CONVERSATION
WV Caring provides holistic care in a patient’s home to help families better manage medical, emotional and spiritual needs. Your family member’s customized care is provided by a team that makes sure everything is coordinated for your benefit. If you have any questions about our hospice care services or want to talk about having the hospice care conversation, give us a call at 1-866-656-9790.