Comfort/safety tools for Lewy Body
Lewy body dementia
Lewy body dementia, also known as dementia with Lewy bodies, is the second most common type of progressive dementia after Alzheimer’s disease. Protein deposits, called Lewy bodies, develop in nerve cells in the brain regions involved in thinking, memory and movement (motor control).
Lewy body dementia causes a progressive decline in mental abilities. People with Lewy body dementia might have visual hallucinations and changes in alertness and attention. Other effects include Parkinson’s disease signs and symptoms such as rigid muscles, slow movement, walking difficulty and tremors.
I will be addressing needs that pertain mostly to the later stages of Lewy body dementia in this post. Some of the issues dealt with can be summarized in this paragraph:
In the later stages of Lewy body dementia, extreme muscle rigidity and sensitivity to touch develop. People need assistance with almost all activities of daily living. Speech is often very difficult and may be whispered. Some people stop talking altogether.
Lewy body dementia typically causes the individual to become very susceptible to pneumonia and other infections because of weakness.
Source: Very Well
My father is currently in his latest stages of Lewy Body Dementia. I am a nurse and have quit my job to help care for him. We are caring for him at home, and he is also being seen by Hospice care.
When caring for a bed bound person, there are many useful items that can make your lives one’s experience more comfortable. I have already discussed equipment needs in the first post of this series.
This post deals with some safety and comfort items to have on hand.
The items starred are those typically provided by Hospice care or gone insurance company.
Fast, accurate thermometer. I recommend a forehead or ear type. Don’t even bother with an oral thermometer, because as the illness progresses, your loved one will lost hr ability to follow instructions, or to make a good deal around the thermometer. A fast forehead thermometer will be a big help for you.
*Suction setup with Yankaeur and small suction catheters. Please ask your provider for this when you need to suction oral secretions. You shouldn’t need to purchase one, but if so, make sure to get a powerful suction machine. The home health provider or medical equipment rental company should provide this.
Washable underpads–4 or more. Get the sturdy, large pads. I’ve noticed that the pink pads seem stronger than the blue or green backed pads. These will be used to catch liquids in the bed but also to slide your loved one up in bed, plus turning side to side, so you want something strong. Get the largest pads!
*Disposable underpads–a never ending supply. I am so thankful that Hospice brings these on a regular basis.
*Pull-ups or disposable briefs. Use the pull-ups for as long as a person can move well/get up, and lift their pelvis. Once they lost this ability, the briefs/diapers are much easier/essential. If a person is incontinent, you will need the tabbed diapers, because the pull-ups will be too messy to deal with. Your medical supply company should provide these, as you will use more than you can count.
Perineal spray. Aloe Vesta spray or foam is very helpful for cleanups. It has a fresh scent that is not overpowering, and counteracts other smells, while protecting the sensitive perineal skin
*Heel protectors. When a person is bedbound, there is a high risk for bedsores on the backs of the heels, where there is almost constant rubbing or pressure. Soft heel protectors keep the feet elevated and provide a comfortable cushion for the feet. Prevention is better than trying to cure sores once they develop. Our hospice provides very basic foam heel protectors, with Velcro straps that came off almost immediately. If you have an alternating pressure pad/mattress, then these are not as important, but still do help.
Frequent repositioning is always the best way to protect the health of your loved one.
Wearable blanket. When I first saw an ad for this blanket, I laughed. It was gray and I thought the model looked like a big walrus all wrapped up in this contraption. Then I thought of Dad sitting up in his wheelchair and I stopped laughing. It was brilliant! A blanket we could place over his whole body, leg places to keep his legs warm, and arm sleeves to keep his arms from getting cold. It snaps behind his neck to keep it from sliding down. No more cold legs where the blankets can’t cover! We ordered the Sherpa lined blanket, and it is very thick and warm! Nightly recommend this. Wish we’d have tried it sooner!
Comfortable 2-piece pajamas. You want two-piece sets in case of needing to change the bottom, but not the top/vice-versa. Cut a slit all the way down the back of the shirts to make them like backwards jackets. This makes it much easier for dressing your loved one.
*Wedges! I like at least four! You will need to be repositioning your loved one every couple of hours to prevent bedsores. These wedges are essential to keep them positioned to the side, off the coccyx, spine, and alternating pressure on the hips. I like to use two along one side to tip my dad over, then one positioned under his ankles, and one under his pillow to keep him from rolling too far. I just like to wedge him in! Hospice will provide these. Ask! And ask for more once your loved one cannot move well. They initially brought me two. I asked for more as the disease progressed.
Here is a good little video on how to position a person to the side using wedges for support. 😊. (A little nursing instruction thrown in for free!)
Neck pillow. Gel foam or whatever is comfortable. Have two for if one gets sweaty/soiled. My dad uses his almost 24/7.
Squishy pillows for feet and legs/arms/anywhere! Somehow these micro bead pillows are really great for positioning sensitive areas. They don’t put pressure on body parts, but do stay supportive. I like to use one under my dad’s ankles to keep the heels off the bed. Have several of various sizes/shapes.
Squeezing stress balls. You can use a size/shape that’s comfortable. We have one that is shaped like a brain. It’s nice to place something in your loved one’s hand sometimes when they want to squeeze yours, and yours is getting tired. I don’t recommend homemade ones filled with sand or flour. When a person has dementia, they sometimes want to use their fingernails to dig, and this could puncture the balloon/ball.
Room heater for bath use. Nothing fancy, but when your loved one with Lewy Body dementia cannot properly regulate their temperature, they chill easily. Set the small heater stop a dresser to direct heat towards them during their bath.
Pool Noodles Make a slit lengthwise, and slip a pool noodle over the bed rail to make a safety bumper. You can also use a pool noodle cut to size for positioning body parts.
Flannel sheets. Flannel sheets do not feel cold to the skin. They can be used for light blankets. They are breathable and comfortable. Temperatures can fluctuate widely with Lewy Body’s late stages. Sometimes they are freezing, only to be pouring sweat in the same day. We often use just a flannel sheet as a cover when the blankets feel too heavy.
The skin becomes very sensitive as this disease progresses. Where a weighted blanket used to provide security, now we use the lightest of blankets. Be aware of what feels best for your loved one.
Variety of blankets. Hand made quilts, fleece, heated throw blankets, and lightweight bed-sized blankets–you’ll alternate through them all. Have some to place on his lap, and some to layer up and peel off as needed.
*Oral swabs. Lemon glycerine swabs can be used to gently relieve dry or sore mouths. These especially become useful when your loved one cannot drink much water. *Ask your providerforthese.
Lip balm. Especially is your loved one is a mouth breather–his or her lips can become very dry. Get a pleasantly flavored/scented lip balm.
Massage oils I like to use calming oils like lavender or chamomile to massage my dad’s feet and back, and sometimes, his face. Massage is very therapeutic and relaxing. I sometimes just use lavender essential oil straight on his feet, or diluted a little on his temples.
What works today may not work tomorrow. This is a challenging, heartbreaking, and confusing time not both the caregivers and the loved one suffering from Lewy Body Dementia.
I hope that these items listed will spark some ideas that will prove useful.
Be sure to see my post on Tips and Tools for Lewy Body Dementia, Later Stages, Part One: Equipment
Until next time,