In Hospice: To Bed or Not To Bed?

hospital beds

The rational reasons for using a hospital bed make a long, persuasive list. But you don’t care . . .

Who would want one?

Does anyone really like ‘em?

They have cranks and levers, wobbly wheels, and are cumbersome to move or adjust. Newer models are often complex, with silent electric motors, links for computer cables, and (though pricey) lightweight metal alloy frames.

But who seeks to be horizontal in a hospital bed of any kind? Not for overnight, and certainly not for the remainder of your life. Whenever the hospice clinical staff discusses current patients, it’s nearly inevitable that at least one patient has recently balked at shifting to a hospital bed. I view the hospital bed as one of the intimidating symbols of hospice care. Of course, it’s more than a symbol once it arrives at your home.

Wouldn’t you refuse?

We like love our bed in our bedroom. It’s a sanctuary. Don’t all the health care experts tout the value of a good night’s sleep? Whether retired, in a part-time job, or with a stressful career (along with raising kids, volunteering, and don’t forget yard and house work), doesn’t everyone desire to sleep every day? Do the personal math: we’re on a mattress more than we eat, work, play, exercise, procrastinate, shovel snow, mow a lawn, or take a vacation. Hey, for some, a little sleep is as close as they’ll get to a vacation for long stretches of time. Work is demanding. Families are demanding. At least let me escape into my cozy bed!

We make love on the bed.

We snack on the bed.

We shoo away or invite pets onto the bed.

600-thread count Egyptian cotton sheets cover our king-size bed, and by gosh, we’ve earned that luxury! The quilt great-grandma made highlights our bed, a reminder of family history. (Bonus: it’s toasty warm!) So, please don’t tell me to get a hospital bed. Don’t steal away my freedom suggesting I use a hard-as-concrete mattress with its metal-bars-like-a-jail-on-the-side rented hospital bed. It does more than ruin the décor; it reminds me that my life is ruined.

Not me. No way. Not now. Not ever.

But the hospice nurse suggested it. The doctor advised it. The social worker encouraged it. The chaplain, bless her warmhearted soul, is willing to pray with you about accepting the wheeled beast into your living room.

But all those hospice professionals are idiots. How can you abandon the bed where you’ve slept for decades? Where your children were conceived? Where you once watched Jay Leno or Johnny Carson for years? Where the stack of mystery novels is conveniently positioned?

The rented bed is not just an irritant; it’s a death knell in the form of a lousy, lumpy mattress.

The hospice nurse, who you actually like and respect, will tell you the hospital bed may be better for you. He or she will mention there’s more support for your whole body. Different sleeping or resting positions can be easily achieved. And those metal bars on the side? Well, be honest, on some nights, you’re so restless you might fall off of the edge. Don’t let gravity and your home’s unforgiving floor become your enemies. The same nice nurse will gently inform you that a hospital bed makes it safer for your caregivers to care for you. They won’t have to lean over and risk twisted backs to bathe or feed you. They can access you from either side. It’s important to make sure you are in different positions and shifting a hospice patient—whether they are 90 or 290 pounds—is easier on a hospital bed.

The rational reasons for using a hospital bed make a long, persuasive list.

But you don’t care.

You won’t abandon your bed, recliner, or sofa. You will sleep where you want regardless of whether or not it’s good for you.

You are stubborn.

You have your pride.

You are a smart square in a world of inconsiderate round holes.

Let’s strike a deal. (And remember, as a hospice patient with certain medical equipment covered by Medicare, the bed will be cheap or free.)

The deal? Try the bed for one night. Okay, maybe even two or three days and nights.

Give it the old test drive. Why not add items to and around the stupid bed so that it’s a worthwhile experiment? How about pleasant lighting, access to your favorite reading, a secure spot for the TV’s remote, a nice candle, a favorite pillow, options for playing your choice of music. Be creative! Let your caregiver help you build a nice “nest” for resting.

Okay, fine, don’t. Be stubborn. After all, you plan to have It’s My Way or the Highway carved on your gravestone.

Is a hospital bed a symbol of the end? Sure, it can be viewed as that. It may be one of the last things you can refuse (No way!) to show you are still in control. And, since we’re being so darn honest, isn’t one reason for suggesting a hospital bed about making the caregiver’s job easier? (Gotcha! It’s about them, not you!)

Please, consider the bed. Also, please consider if any bed battle is more about the “sheets” on the top instead of the big “mattress” of other more serious concerns below the surface. Do we:

  • Scorn a bed rather than talk about your dread of dying?
  • Belittle a bed’s value because you’re frustrated by your unfair illness?
  • Rage at the bed instead of God, loved ones, or the hospice staff?
  • Reject a bed than reconcile with a family member?
  • Or maybe your particular concern is . . .

What is truly important right now?

Do you want to fight over a bed, or to spend the best possible time with your loved ones?

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

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Comments

  1. My mom is at home on Hospice care. She is 100% immobile. We have to turn her up to 24 times per day in order for her not to get bed sores on her bottom.

    I have begged for an oscillating mattress and am being refused. They said unless she has a stage 4 sore she doesn’t qualify!

    So am I supposed to let her form a hole in her bottom so we can get a bed that oscillates???

    I really need help. She has a low air mattress that has these long tubes that run across. That was painful for her so we asked for a topper.

    They sent me this flimsy topper that is basically
    a raft.

    They told me that they will not supply one for her at all. They will only give me a low air mattress that does nothing for her.

    I am so sick about this. Then they told me to pump her full of morphine so she would not feel the pain or laying on the mattress or feel the sores.

    I need help. If someone could lead me in the right direction to either rent one or buy one, I would be so grateful.

    This is so barbaric it makes me sick to my stomach! This is the care that Hospice provides to my mom that has worked her entire life and paid into!

    Thanks,

    Jodi

    • Jodi:

      All I can feebly say is that I am sorry for this situation for you and your mother.

      There are limits to what hospice care can provide, for example: the amount of staff time spent with patients and certain kinds of medical “equipment. Some families can afford to hire more caregivers to help or pay for more/different equipment like a bed. However, many can’t . . . and that adds to the stress and frustration (and guilt and anger and so many other feelings).

      Each hospice agency is different. If you are truly disappointed with the current company, and if you have any choices in the area where you live, you may want to ask another hospice to evaluate your mother and your situation. If you do, be very clear about your concerns. You can switch hospice providers without any penalties to you. There is no guarantee any other hospice will be better . . . and every hospice has those limits on staffing, equipment, etc.

      I am humbled to read how much care and love you are giving to your mother. My words won’t matter much, but your hourly, daily actions in doing the best for her matter a lot.

      Take care.

      • Larry.

        Thank you so much for your kind words and letting me know what my options are.

        My mother receives great care.

        We have a CNA that comes to our home daily, 7 days per week. We have 2 great woman that come out to help. We also have an RN that comes twice per week and an another nurse once every 2 weeks.

        They supply everything she needs.
        Except the oscillating mattress.

        I am disappointed that when I asked I was told that her sore was not bad enough yet. That is outrageous.

        I can afford to rent one but I have no idea who to contact?

        Everything else is wonderful and I’m happy with the level of care we are receiving.

        It is just her comfort level. It’s horrible to have to move her like a rag doll all day and night long.

        Hospice is supposed to be about comfort.

        If at all possible, can you lead me in the right direction to rent an oscillating mattress?

        I am so happy I found this site.
        Thank you for allowing so many to speak here freely about their unique situations.

        You are a very kind person to have this site available and to take the time to respond in such a personal way.

        Thank you,

        Jodi

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