Frozen in Place–Contractures in End Stage Dementia
What Are Contractures When They’re At Home?
Contractures aren’t a fun or exciting topic (in the current lingo–it’s not a sexy topic) but they are a real problem in caring for those with end-stage dementia, of whatever form. We are fighting them at our house now.
Contractures are complex, but simply stated, they are the shortening of skeletal muscles from inactivity. Anyone who has ever worked in a hospital, nursing home or home health setting, are taught, contractures are bad. If your patient has them, you aren’t doing your job. The problem is how do you handle them in a palliative or hospice care situation when the goal is the patient’s comfort? The treatment goal is not wellness or restoration of function but keeping the patient comfortable in their end-of-life situation.
How It Happens, How To Prevent Them.
In end-stage dementia, patients curl into the fetal position and don’t move for long periods of time. They sleep a lot. This curled-up position means leg and arm muscles are not stretched. Soon the muscles tighten, and the joint is literally locked or frozen in place, they have contractures. Moving the joint is painful, feet turn inwards as well as hands. Knees remain bent, hips are so tight, moving and turning are difficult. The risk of bed sores increases.https://www.llyarborough.com/2017/11/15/treating-bedsores-pressure-ulcers/
The remedy or prevention of contractures is “range of motion” (ROM) exercises. Active ROM is best, if the patient can do it, as it helps keep up muscle strength. If the person is unable to exercise on their own, they need Passive ROM. That means the caregiver moves each joint in all the directions the joint was designed to move. This image may explain it better.
If you do stretching exercises, yoga, Tai Chi, or even stretch out before running, you are doing active ROM exercises. If the one you care for cannot or will not move on their own, passive ROM is the only way to keep the joints functioning. It will not build muscle but will keep the limb flexible.
I’ve noticed my mom’s feet curling in over the last few months. She’s getting contractures. This week I’ve noticed how tight her hips are. When I pull her into the standing position, her knees lock together. You couldn’t fit a dime between them. She can’t move her ankles, knees or hips far enough to accommodate dressing and toileting. Unfortunately, neither will she coöperate with passive ROM. Her exact quote was, “That hurts. I’m not going to live forever, so I’m not doing anything that hurts.” No amount of coaxing, cajoling or exhorting does any good.
She found some motivation from our paid caregiver this week, though. Mom hasn’t been well enough to go to the hairdresser for some months. Her hair was long and unruly. Our caregiver told Mom she would take her to the hairdresser’s if she could prove she could move enough to get into the car with help. Suddenly, she wanted to try. She followed all the instructions carefully, worked on moving her arms and legs, and got her treat of getting her hair done and the much-anticipated latte on the way home. She was completely exhausted the next day but it was worth it.
Sadly, now that the “big event” is over, she has no interest in stretching her muscles. Her contractures are getting worse. She has another bedsore on her heel. I get up in the night to turn her to prevent more. Getting up every two hours all night and still having a life during the day is impossible. I’ve been going for every three or four hours. I’d love being one of those people who can get by with only tree or four hours of sleep a night, but I’m not.
Today, I pow-wowed with the hospice nurse about how aggressively to treat contractures in my mom at this stage. She let me off the hook by saying now it probably isn’t necessary to turn her every two hours at night. We’ll get heel protectors to cushion her heels and her bedsore looks good. She can move, if she chooses, though her movement is more limited every day. We decided she gets to choose. Forcing her to do ROM is an “exercise” in frustration for all. Yet, it goes against everything I’ve ever been taught. It gives me an inner angst to see her limbs draw up and not take action. I know that they can become painful.
If Mom were a burn patient, or a had a severe head injury with hope of recovery (contractures are extremely common with those conditions), we would aggressive treat her contractures. Stroke victims also struggle with contractures. Foot splints are available to keep bed-bound patient’s feet from drooping and a rolled up washcloth or similar soft roll is placed in the hands to keep them in a more neutral position. We would turn her every two hours ’round the clock. For now, our goal is moving her joints when she is warm from bathing, keeping her comfortable, and respecting her wishes–even if it’s hard.
Contractures are Part of the End-Stage Signs of Dementia
Rigidity is one of the signs of end stage dementia, part of the physical effects that go with the mental deterioration. That, coupled with her increased choking on food and liquids, trouble sucking fluids up a straw and inability to drink from a cup are all part of this long, difficult journey. Many dementia sufferers stop talking at this stage. My mom is talking, though what she says doesn’t always make sense. I know many of you struggle or have struggled with the same issues with your loved one. It’s a tough thing to watch. Stay strong, I’m with you in spirit.
Best wishes in your caregiving journey this week.