How To Manage a Hospice Patient’s Declining Energy and Mobility
We all have our normal physical functioning capacity — whatever that may be. Mine is the ability to walk forever, to lift, hoist, bend, jump, skip, and to run for about a block if someone is chasing me. Generally, a hospice patient’s energy, strength, and mobility will decline over time. Each month, week, or even day may present new physical challenges. It’s helpful to anticipate the decline to make each “new normal” as smooth as possible.
Let's look at a resilient hospice patient named Pawpaw to illustrate how this decline happens for many patients and what you can do to support them.
Pawpaw was a big-hearted man with a deep laugh and hands like shovels from Louisiana. He spent his life working as a science teacher. He had four kids, and they all had at least four kids. Someone was in his small simple house all the time: a grandchild, a son, an in-law. His ever-present wife Betty was the classic southern host and always had something delicious baking.
When I admitted him to our hospice program, he forced me to call him Pawpaw: “Please don't call me Richard, everyone calls me Pawpaw.” I reluctantly agreed.
At the time I admitted Pawpaw he was recently diagnosed with pancreatic cancer. He had lived 88 rich years, and he was not surprised by this diagnosis. In fact he was relieved that at least now he knew how he was going to die. He laughed when the doctor recommended chemo and signed on to hospice the next day. For the first few weeks after his diagnosis, he would get up every day, rain or shine, and take his regular mile walk around the neighborhood saying hi to the neighbors and the dogs that greeted him.
It’s important to move as much as you can for as long as you can or want. Movement helps with circulation, mood, muscle and joint aches, and constipation. It also helps maintain strength and independence which maximizes most people’s quality of life.
After his walk, depending on his appetite, he would have a simple breakfast and read the paper. Then he would crawl into bed. In the first two weeks, his time in bed stretched from 10 a.m. to noon which quickly became 10 a.m. to 4 p.m. At 4 p.m. every day the party started. Pawpaw loved the evening time. He had a long history of happy hours with his friends and family, and he was insistent on keeping that tradition going for as long as possible.
Conserve your energy for events that make you the happiest. These precious moments are what make up one’s quality of life.
His wife would build a fire, and he would sit outside with the roaring fire and tell stories about Louisiana, his beloved New Orleans Saints, and his students. Family members would come by and neighbors stopped in on occasion.
I was visiting about every week and to me, his decline was significant with each visit. His mile-long walks became more difficult and his stride a little unsteady. Hospice ordered him a walker.
It’s helpful to anticipate the decline to make each “new normal” as smooth as possible.
Sometimes the best way to maintain your independence or energy is to use medical equipment like a walker or a wheelchair. Medical equipment is part of the hospice benefit and your hospice team can help you to quickly obtain any items so you don’t have to buy or rent them. You can try them out, and if they don’t work for you, you can return them.
The day we ordered his walker, he casually mentioned that he and his wife were going to the bank next week to get a few things signed. When we sat down in the living room, I mentioned that he had declined quite a bit in the last week, pointing to his walker. I told him we don't know how slow or fast this will happen, but it’s possible that by next week he may not be able to walk more than a few steps and may require a wheelchair to go longer distances. This never occurred to him. He called his daughter right away to have her reschedule the appointment with the bank.
Though this isn’t easy information to take in, it’s helpful to know ahead of time that the patient will get more fatigued and weaker over time. Everyone's decline looks a bit different, and it's not always linear, but in general the patient may first become unsteady when walking. Then they may need a walker, and then their legs will be so fatigued that they may need a wheelchair. They may be able to walk from the couch to the kitchen to the bathroom, but then they might only be able to stand to get to the bedside commode (portable toilet) or wheelchair. At some point, they will be unable to get out of bed.
The next week, Pawpaw requested a wheelchair. He was desperate to go for his long walks and simply did not have the energy to do this, even with a walker. At that point his wife became part of his morning routine as she walked him through the neighborhood. When it became clear that Pawpaw did not have the energy to go outside at 4 p.m., they asked him where he would like to have his happy hour. He thought it would be just fine to host happy hour in the living room.
Hospice patients are losing control over every aspect of their life, their health, their physical functioning, and their independence. Give them choice and control whenever possible.
Later in the week, he was too weary to make it up the stairs to his bedroom and agreed to get a hospital bed placed in the small dining room near the central access point of the house; he could watch his wife cooking in the kitchen, and he could still watch his financial shows on the TV across the living room. He was frustrated to learn that he would probably not be able to safely make it into their narrow bathroom. We also ordered a bedside table and a bedside commode. Betty set up a little handwashing station next to the commode with a basin filled with warm, sudsy water and a dry washcloth. We brought over some absorbent pads just in case he could not make it to the commode.
Hospice can order a hospital bed which can be placed wherever you wish as long as you have the space. Beds are approximately 38 inches by 84 inches and usually do not include twin sheets. The head of the bed can be raised mechanically which is useful for dining in bed and getting out of bed. The entire bed can be elevated straight up to adjust to the caregiver’s height when they need to change or reposition the patient.
That weekend we received an urgent call from Betty who said Pawpaw could not get out of bed any longer. The home health aide went to the house to give him a bed bath and offered some teaching on wearing a diaper and changing his linens while in bed. Let me tell you he was not excited about this.
Dignity or respect for a person is a fundamental ethical principle. When we respect the body, values, beliefs, goals, privacy, actions, and priorities of an autonomous adult, we preserve their dignity.
HPNA definition of dignity
Every new baseline represents a loss of independence, a chip at one’s dignity, and a palpable sign that one's health is declining and they are closer to dying. These transitions are challenging. Maintain their dignity as much as possible considering their privacy, goals, and values. Listen and validate when possible, and consider calling the hospice chaplain or social worker to address their loss of independence or dignity further.
He definitely needed help 24/7. Thankfully Betty was there, but she was getting tired. She asked other family members to alternate sleeping in the living room so they could hear him if he needed help in the middle of the night.
It can be very disorienting to be in bed all day. I encouraged the family to establish some semblance of a routine. In the morning, open the curtains and the windows for a bit of light and fresh air and wash the patient’s face and hands. Brush their teeth and hair. Set meal times to provide structure to their days.
We gathered pillows from the spare bedroom to get Pawpaw into some comfortable positions.
He had refused a catheter for the last four days, but today he was interested; the brief changes caused him too much discomfort and exhaustion.
A catheter can help eliminate the overall discomfort and moisture that urine can present. It also minimizes the number of brief-changing episodes (which can be exhausting) and allows you to conserve your energy for more enjoyable tasks. Many patients hate catheters and refuse them while some appreciate not getting changed 10 times a day.
Pawpaw slept most of the day rousing for simple conversation or bites of yogurt. The aide instructed the family on how they could reposition Pawpaw to prevent bedsores and keep him comfortable. His family alternated times to sit with him or be around to support Betty.
Request instruction from the hospice team on how to best care for your loved one now that they are bedbound. Offer them meals or snacks throughout the day and sips of water as they may not even have the energy to request food or drinks. Check their briefs every few hours to make sure they are clean and dry. Reposition them every four hours or so while you are awake to minimize bedsores (pressure injuries).
Dignity is the quality and state of being honored or valued.
HPNA definition of dignity
Pawpaw died five days later in his bed in his home at 4:15 p.m. His happy hour Coors was at his bedside and his wife had just sat down to offer him a toast.
I am 51, and my body is declining. For the rest of my life, I will be struggling with loss of vision, loss of muscle strength, and loss of elasticity in my face. Physical decline is a natural and normal part of the dying process. Sometimes it happens over many years, sometimes it happens quickly over months, weeks, or days. If you can anticipate this, you will not be so surprised when your loved one needs assistance to take a walk, to get out of bed, to get dressed, to sit on the toilet, or the more difficult one — getting off the toilet. Remember to maintain the patient’s independence as much as possible, give them choices whenever you can, and be empathetic to their losses.
Blessings.
Writer’s note: Because of privacy laws, the subject of this story is not an actual patient, but a story that includes a combination of many patients and scenarios over the years.