It is hard to decide when to call for help when you are in the middle of care giving. My brother –in-law was moving downhill with his cancer and the veil of pain and fear were starting to blur. After years of fighting lung cancer, the fight seemed to kick into high gear fast. There was no day/date stamped on him anywhere to know when to call for that extra help that Hospice gives.
The idea of Hospice had taken over my sister and brother-in-law and they felt it was like saying; “the end”. It kept them from the call for help and they suffered alone as the daily tasks of living were beginning to close in around them. As his breathing got more and more difficult, his mind lowering in clarity from reduced oxygen – it was making days, night sleeping and common chores harder and harder to achieve.
Finally, the day came…when there was no ‘feeling better, tomorrow’. The call was hard for them to make and the first visit of the home nurse was tentative. Did he want a special bed? ‘NO’ Did he need a walker? ‘NO’ Their conversation was rough, short and difficult for all concerned. The Hospice nurse had been down this road before, she knew the signs and she just told them she was there…it was their choice and they would take baby steps together.
Within just a few days of that first visit; the situation had worsened and another call was made to Hospice. This time the services were really needed and they started to roll in the door. The cancer was making him feel so weak that he was unable to go into the bathroom alone. Walking was impossible and eating had long-lost its appeal. His oxygen levels were so low that he was unable to catch his breath.
The fear and worry that my sister felt, watching him suffer, was overwhelming. Hospice could hear it in her voice as she called them backed and asked how they could help her. This time the flood doors of care suddenly opened. Out poured professional help that was organized and calming.
Hospital bed loaded down with memory foam mattress and adjustable controls moved into the front room. The home had a fabulous view of the Tacoma harbor and the sun filled every inch as they moved out furniture to make a place of honor for the bed. An ‘over the bed’ table was adjusted in place so it could be used to hold his basket of personal tools. Finally he could sleep in a bed instead of in his chair. His chair was honored with a gel cushion to give his thinning body comfort.
A commode was put into place by the bed during the night and over the toilet during the day to give arms – used to steady and help with standing back up. A wheelchair; small enough to go thru tight places and still hold his tall frame securely was delivered. A new oxygen machine that would dial-up to 10 PCI and add a little water to the mix to keep the nose moist while using the air was set up.
During the next week, a cleaner arrived to scrub down the shower and vacuum any dust away so my sister could concentrate on care of her husband, not the worry of keeping the house clean. The nurse arrived to take down the medications and adjust them for pain relief and put all the pills for the week into a larger daily pill container marked with four times a day. The pills that had once been on every table in the living area were now brought into order and ease of use. No more confusion or missed pain medications, it was all organized to remove the confusion. Very intricate information was written down in a simple and easy to read hand for my sister to administer the morphine at just the right time during the day. A list to write the timing and the result of the dose was established and put in a place that was easy to find and use. Common nursing tips and transfer training were also shared.
Food suggestions and how to’s were left so the small intake of food for my brother-in-law would be productive and comforting. Explanations of how to use ginger ale for stomach gas and calming was added into the mix. Simple suggestions and easy to do things that made a huge step up in the care giving and comfort level were carefully explained and examples shown. The change in comfort was immediate and the feeling of panic and worry began to be replaced with confidence.
The bath lady arrived…after first being rejected as a privacy issue…she was now welcomed and able to prove her skills in giving a bath to someone who could hardly move or breathe without great labor. The bath was finished in quick order and a light massage was given. My brother-in-law returned to his chair feeling clean, warm and relaxed. A simple service that a trained professional gives can lift the spirit. Instead of the worry that their son had gone through when he had changed the shower head and added the support chair. Then he had added his dad and tried to help him with the shower, the discomfort was high and the experience was exhausting. Not now. Now the bath lady has the senior in and out of the shower with time to spare.
A Chaplain showed up on the doorstep; just to introduce herself. Not wanting to intrude on comfort or spiritual issues…she just shared time with my brother-in-law and took in the family dynamics around her. As she met each family member, she chatted easily and yet expertly with them finding their point of pain and bringing it up into the light.
Each time another issue came to a head, my sister was now able to call and get an RN to return her call and assure her of steps to take to keep the care in a positive mode. As the care became more intense, the time of sleep began to dwindle and the help line to the support system grew.
When talking to my brother-in-law the Hospice team noticed that he was a long time retired fire fighter in the city and they asked what station he worked. One of the team stopped by the Firehouse 13 in the north end of the city. A couple of days later, the large fire truck pulled up in front of the house and out came the young men from his old firehouse. Entering the house and standing around my brother –in-law they gave him support and respect of service. They chatting about old stories and thanked him again for all of his dedication to his duty ‘in his day’. The view of those young men surrounding my brother-in-law as he carefully worked for each breath of air was so over-powering. Honor; it is so important…emotions and love are so dramatic. My brother-in-law was empowered by the visit – his heart soared high that night.
His adult children that had all planned a weeklong camping trip before the Labor Day holiday now put it on hold. They all rallied to the side of my sister. One stayed over at night; (leaving her family of a husband and two young sons) then returning to her own home to care for family during the day. Then she drove over to her mother’s at night to fix dinner and sleep so she could help with nighttime care. Their son came over every morning early to prepare a good breakfast, fix anything that needed attention and give his dad help with the daily challenges. The other daughter (with a young infant that was sent to the day care) spends time with her family during the day to keep her Dad’s spirit high as he struggled through the pain.
The journey to life’s end, when you’re fighting cancer, is never a breeze no matter how brave and how the patient fights. But, it can be easier and calmer when you just reach out and ask for help. Hospice is not the ‘end’— it’s the beginning of care and attention that assists a family and patient through life. It is as important as the highly trained pediatric care team is for newborns. It is just a call away – please make that call. Don’t wait for fear and exhaustion to take over and make the journey even harder.
At this moment, we are all working through the end of life issues with my brother-in-law…but now we are all a part of team that belongs to him. Each of us bringing our skills and special love to his side to ease his days and fill his nights.
Honoring all that served…even if it was a long time ago…serving our country, community and family counts. We thank you for your service and embrace your life’s story.
Here is to Hospice…and here’s to a caring family that understands just giving their time and love makes a difference in the journey towards life’s end.
Thank you, francy