Bed, MS and Me, Part II

Community Member

Bedridden to me means daily hygiene, medication, physical needs, and degrees of disability, but abilities, too - all in bed. It is confinement, dependence and boredom, and, it is also a time to rest and recuperate, read and write, watch television and movies, perform limited exercise and visit with friends. It is an opportunity to learn and practice new skills. Bedridden, regardless of the length of time, is what you make it. Bedridden does not mean giving up on life.

Earlier, I discussed being "bedridden" and had a little fun with lists, ending with a reference to one of my favorite movies. Today, I am talking a bit more seriously about this topic. This is a long article, but there are important points with informative links, again ending on a lighter note. Let's begin.

Some people who are bedridden require a caregiver. "Caregiver" is a term used in the United States and Canada for a carer. A caregiver can be a doctor, nurse, nurse's aid or social worker; in different circumstances, a caregiver is often a family member or friend. At times, care giving is provided by a combination of caregivers. Thirty percent of family caregivers caring for seniors are themselves aged 65 or over. My caregiver falls into that slot.

Caregivers identify and treat illness and infection, and assist in daily hygiene, eating, and exercising. The patient/caregiver relationship includes trust, compassion and communication. Ground rules are important and allow each to know what to expect from the other. For many of us in the beginning, it can be frustrating and embarrassing to ask for help or even to accept help for the smallest things.

My caregiver asked me to include this quotation. I laughed at him, but he insisted. Hmm. Well, here it is

"The concept of "bedridden" is borne by those "carers" too lazy to get the people out of the beds." ~ unknown

A daily caring routine considers medication, physical needs and other activities. When MS is involved, a daily routine must be flexible, especially with fatigue and abilities an issue.

Daily Hygiene
Cleanliness is important in bed as well as out. eHow has excellent links giving detailed instructions to wash, bathe, and prevent or reduce the chances of atrophy or bedsores.

Bed Sores
Being in bed reduces a person's circulation, and atrophy can be a problem. Being in bed causes reduced sensory perception so you are often unaware of any pressure. A pressure point is the first step for developing a bed sore. A special note to smokers: your bed sores develop faster and heal much slower than for a non-smoker.

A bed sore can actually be life-threatening. More than an inconvenient irritation, it is an acute infection that can result in sepsis* or even meningitis.  It can be prevented with diligent care.

Preventing pressure sores takes attention to cleanliness and to body movement. A person should not just stay in one position, irritating pressure points until a severe bed sore develops. It is important to determine how active you can be rolling over and re-positioning yourself. If you cannot move, you should be re-positioned often; every two hours is recommended. I have found to my delight that pillows are good tools for re-positioning and cushioning.

When you are in bed and need help, you may have to call your caregiver who is in another part of the house.

When I need to call my caregiver, I use a wireless doorbell. The doorbell button is kept conveniently near me. In addition to a bell, an intercom is helpful.  There are stand-alone devices, but there are also telephones with an intercom option. A walkie-talkie or even a baby monitor might also be helpful.

Building Your Nest
If you are going to stay in bed for any length of time, you want to be comfortable and pillows are my luxury. You also may want to have activities ready for your waking hours.

Maybe your extra activities will be as simple as reading, but many other things are possible. You can keep books or a Kindle-type device at hand. You can keep knitting supplies, a drawing pad, and your TV remote control near you. I have my wireless laptop waiting and ready.

Keep your activity materials in containers, on shelves around your headboard, and in pockets hanging off the mattress. Buy an over-bed table that tilts. It's especially good for eating meals and holding art or other activity supplies.

Chances are, whatever you like to do has a component you can do from bed. For example, if you like dancing, you can watch TV programs that feature star dancers. With so many cable channels, there must be something about your interest available. Perhaps you can find suggestions online that help you learn more about your interests or find new interests.

If you stay active, even while bedridden, you have a better chance of keeping your spirits up along with a positive attitude.

Famous Bedridden People
Many famous people have been in bed for extended times in their lives, and they furthered their career with activities in bed. Not everyone who is bedridden has MS, but MSers who are bedridden can learn something from others, even children. Here is a blog that says approximately 1 of 10 biographies of famous people include significant periods of being bedridden. Here are some of these people:

  • Henri Matisse, a French artist famous for his color, was bedridden on and off throughout his life. He used his time in bed to work on his art. One time he used his charcoal to make a design that he later used when he painted an entire church.

  • Farrah Fawcett, popular American actress and poster pin-up, was bedridden with cancer late in her life. She was dying of cancer when she used a hand-held camera to make a video of her experience called Farrah's Story, aired by NBC. It was powerful, sometimes uplifting, sometimes sad, always personal.

  • Florence Nightingale became an expert in statistics, studied nursing, then combined both as a nurse The Lady of the Lamp when she worked in the brutal Crimean War and began shaping the nursing profession. She was bedridden later in life, but continued working to improve health care, writing 200 books and pamphlets. She received many honors including Queen Victoria's Red Ruby Cross. Two hundred years after her birth, the UN is celebrating the Decade for a Healthy World, 2011 - 2020, highlighting preventive and holistic medicine.

Other Hollywood successes who bedridden include actress, singer, and animal advocate Doris Day; Alan Alda who had polio; and then Beatle Ringo Starr.

Even Presidents are included in this group. Macho Theodore Roosevelt and John F. Kennedy were considered "sickly" early in life.

Time in bed is not necessarily time wasted. Make the most of it whenever you can, but don't forget to rest, too. Quality of life for a bedridden person depends on the patient/caregiver relationship and activities that keep your spirits up.

"The most important thing in illness is

never to lose heart."  ~Nikolai Lenin

Notes and Links:
*sepsis - immune system's reaction to an infection, especially dangerous for anyone with a compromised immune system.
Prevent bed sores
Setting up a nursing routine
Florece Nightingale
Products for bedridden people
Products for care giving
Wellsphere's 10 needs of bedridden person
Article I wrote about the Value of Caring