Inevitable Falling

waywardson

I am sole caregiver for mother with later stage dementia. Hospice comes by 2 or 3 times a week, paid caregiver once a week, brother visits maybe once a week. That leave Mom and I alone … 76.2% of the week (yes, I did the math).

Mom has started falling. A couple of bad falls, several (mercifully) mild ones. Two or three times a week, much much more if I'm not standing next to her.

I cannot be by her side 24/7. I try to make the house as fall-proof as I can.

How can I sleep, take the garbage out, golly-forbid, go for a walk if it might led (inevitably will led) to a fall? I can't prevent every fall, but if I'm there … essentially, I can. And when she does fall, I am … neglecting.

How can I just … let her fall?

harshedbuzz

@waywardson

There are two battles no one can win— the one against dementia and the one against gravity.

You can make your home safer, to a point, by banishing area rugs, cords across floors, installing grab bars, lowering beds, securing stairs, but it will not prevent all falls. You've probably already done this. Falls are an inevitable part of late-stage dementia. Even if your mom was in a facility with a team of well trained and well rested caregivers around the clock, she would fall. Sleeping, preparing food and seeing to your own needs is required for you to continue on. It's not neglecting her to put on your own oxygen mask first— it's allowing you to be the best caregiver you can.

I do feel you on this. It's terrifying to have the responsibility of a person who is so fragile.

That said, leaving a PWD who is progressed enough in the disease to "go for a walk" is probably not advisable. A quick trip to a curbside mailbox or out to mow the lawn in sight of the house might be OK. My friend felt very "trapped" when her mom was at this stage despite having caregivers 3x a week and later hospice on top of that. What helped was setting mom up in a $100 transport chair and taking her for a walk on their community's walking trail.

HB

--Rebecca--

Does your mom use a rollilator? My dad was resistant to using one. He said he didn't need help walking. We kept explaining that it wasn't to help him walk-it was to catch him if he stumbled. My dad said he worked up a plan to catch himself if he ever fell. It included a stunt man styled barrel roll.

He fell twice at assisted living. He secretly disclosed this to my husband. He hurt the back of his head and his tailbone. At this point he decided to accept the rollilator. I had to let him take these falls in order to accept the rollilator.

We now have a rule that the rollilator goes with us every time we leave. His objections have been: the places we go will not have room for it. Someone might steal it. We address these fears. Restaurants always have room for strollers and walkers. We are watching the rollilator and wont let anyone take it. Dad now proclaims that he doesn't know how he ever got along without the Rollilator.

Yes, you will have to let her fall eventually. You need to sleep, run to the trash and mailbox, fix meals.

You can safety proof the house. You can be her caregiver. But you cannot prevent every fall. It's ok. It doesn't feel ok. But you are her parent now, and parents cannot get ahead of every bad possibility.

MN Chickadee

Falls do seem inevitable. My mother was in a facility with great staff and still had falls. Sometimes when walking, sometimes she would slither out of a chair and be found on the floor. It simply isn't humanly possible to have someone with their hands on the PWD 24/7 regardless of where they live. You turn your back for a second and they can go down. Unfortunately falls are very often a catalyst to the end. A broken hip or bone, or even just leaving them weakened to the point of being bed bound can happen from a simple little fall. You do what you can and if/when the falls still happen try not to blame yourself. I wouldn't leave the house though. You are in a phase where it's like leaving one year old home alone; you just can't. You may need to bring in some more respite care for this phase. Do you have a gait belt around her when she walks? That gives you something to grab.

waywardson

https://alzconnected.org/discussion/comment/230569#Comment_230569

Thanks. It's sleeping that has become the real problem. My sleeping. I used to go for long walks. Around the big field, through the woods, top of the hill … but, yes, those days are on hold. My "walks" now are sitting out in the carport (even in the cold) with a cup of coffee.

Gait belt. Funny story. I had it sitting on the counter in her bathroom. She came out the other day with a confused look on her face because she was having troubles wrapping it around her head … like a scarf. I couldn't help but laugh. I felt horrible for laughing. I went to unlatch the lock and pinched my finger, enough to leave a little blood blister. I let out the expected howl. It was the first time in weeks I heard my mother laugh. Serves me right. Fate. It's nice to know that slapstick works … even through dementia.

It's sleeping. I have real problems going into my own bedroom and trying to fall asleep knowing that at any moment I will hear the THUD. (Which I did last Thursday morning)

It's the guilt I guess.

… hmm …

waywardson

https://alzconnected.org/discussion/comment/230557#Comment_230557

Thanks,

Yes, she has a rollilator. And, it works fine everywhere in the house except … one door. And, no matter how much I warn her (and perhaps BECAUSE I warn her) she get that rollator lodged in there. Everytime.

It's nighttime. I put her in her bed, leave her to sleep in her chair (better breathing) even leave her asleep on the couch, because she's at peace. All her medication in, been to "the john", the day is done, and … I walk into my bedroom. Door open, lights on, listening to any stir. Knowing that she will, better than 50/50 chance, get up, sometime during the night.

It's during this quiet time, alone, listening to the creaks and pops of the house that my mind goes to alarming places. Worry, guilt, fear, sadness and regret. I know it's going to happen. Maybe not tonight, but she will get up (she does almost every night). And, unsupervised, she almost certainly will fall.

There is no use in suggesting that she "stay in bed". I've said it to her literally, actually, ten's of thousands of times over the past year or more. She will ALWAYS get up and wander.

I've just got to figure a way to … manage the worry.

waywardson

What about the battle against guilt?

I'm not just trying to be clever. It's the laying in bed listening, trying to fall asleep and knowing that it might be tonight. And, if I can hear it, if I can anticipate, if I can get out there quick enough …

Knowing it's inevitable

Iris L.

Is your mom falling when she gets out of bed to visit the bathroom? There are mats and devices to notify you when she gets out of bed.

Review all medications. Many meds that older adults are prescribed cause dizziness or lightheadedness and make it more likely for them to fall. Read about orthostatic hypotension.

Nevertheless as the other members have stated, falls are a part of late dementia and are hard to prevent. Measures need to be taken in the environment. This includes having more caregivers, always close by.

Iris

H1235

What about a motion sensor for her room. It would wake you up when she gets up and starts to wander. I know you would still be getting up at all hours, but maybe you could have some peace of mind to sleep easier when you do have the chance. Good luck.

fmb

@waywardson I have no useful suggestions regarding your situation, but just want to tell you I completely understand your anxiety and the sleepless nights. My DH fell numerous times over the years he was at home. We slept in separate but nearby bedrooms (for many reasons). For years I was in constant hyper-vigilant mode, always listening for sounds of him getting up in the night or that inevitable "THUD!" of him hitting the floor. At nearly 6 ft. tall and 180 lbs. he was impossible for me (5'3" 120 lbs.) to get up off the floor.

He never seriously injured himself until he fell while living in a personal care facility (7 broken ribs and internal bleeding). I was there, and the aide had just stepped out of the room when he fell against the toilet. Neither of us could have caught him. I was later told that the aides are forbidden to try to break anyone's fall because both they and the resident could be seriously injured. For months afterwards, I had flashbacks and terrible guilt because I couldn't prevent the fall. After later being reassured by a doctor that there was literally nothing I could have done, I finally was able to let go of the guilt. He hasn't lived in our home for 14 mos. now, and I have begun sleeping through the night only in the past few weeks.

Emily 123

Hi waywardson,

I think you've done what you can to prevent a fall. It won't be because you did or didn't do something, but because of a disease. You can't stand next to your mother and assist her all the time-it's impossible. Can you identify when your mom is most active and have a sitter for that time a few days a week so you can sleep? Does her healthcare provider have anything in their medication aresenal that can help keep her in bed?

harshedbuzz

@waywardson

Guilt is misplaced here. Your mom's falls are the result of the progression of her dementia. You cannot outwit the Laws of Physics.

Your nights sound like mine do at times. What you are describing, to my ear, sounds like anxiety.

A man who would do the caregiving math down to a fraction of an hour is likely a proactive planner who thrives control and order. Me, too. What helps me is a low dose of an SSRI, leveraging the CBT strategies I learned in therapy years ago and this place.

I have a friend who was able to keep her mom with dementia with her at home. Her mom's disordered sleep was a real challenge as it impacted hers. She did have motion detecting pads in mom's room but found herself listening for the inevitable chime on her phone instead of getting the rest she needed to continue with the caregiving. What helped her was more aide hours during which she napped. If you can find one, an overnight aide might allow you to shut your mind off and get the sleep you need.

HB