Maintaining mobility - walking frequency?

LovingAwareness

Recently we're noticing more slips and near-misses on walking down stairs and steps and balance checks while standing/walking with our Dad, and it makes me worry that the disease might soon attack his mobility and balance. We see other signs of Stage 6 like urinary incontinence and increasing challenges with communication and we worry it's getting close. 

He still walks independently, though slowly, but his walks around the block for exercise have dropped off in frequency this summer. Part of it is the heat - he can't tolerate walking when it's over about 75 degrees, and since he doesn't wake up until 9 or 10 in the morning and takes hours to get going after he does, usually the day is too hot for a walk by the time he's ready. And a big part of it is that he just sleeps so much - wakes up at 9 or 10, takes two or three hours to drink his coffee and eat breakfast and then wants to have a nap again.

We try to take him to the mall to walk in the air conditioned space, but between his daycare schedule, our work schedules, and Dad's napping habits, lately we only get him there once a week or so. 

He is going for a walk today, but prior to that he had not walked for exercise since Saturday, five days ago. 

For anybody who has seen their LO lose mobility after a long history of walking for exercise, was there a drop-off in walking frequency or distance before that happened, and how often should we be aiming get our Dad out there walking to forestall losing it as long as possible?

Obviously the ideal answer would be "every day" to keep the brain and body in practice with this skill, but do we know if there a definite drop-off, where twice a week or so is just not going to be enough? We know we need to prioritize it, but there are just so many things we need to prioritize every day. 

Thanks for any advice, 

Stuck in the middle

My mother walked until she was 90, when she was hospitalized for three weeks and lost muscle due to inactivity.  She never really regained her previous strength, but walked all over the NH for the first couple of years.  Then she gradually walked less and less, and became less able to walk.  Muscles weaken when they are not used, and weak muscles cause falls.  My mother was confined to a wheelchair by the end of her life at 96.

My doctor says I need 30 minutes of walking, five days per week, as a minimum.  I am 74 and in good health for my age, so I can get up early and walk while it's cool.  I just put on the same clothes I took off at bedtime and go.  Walk first, shower and coffee later.  Your father apparently needs a lot more sleep and get ready time, so he may not be able to do that.  Does it cool off around sundown where you live?  Another possibility is doing squats and other stretching exercises during commercial breaks while he watches TV.  Ideally, he should walk and do the stretches.  Walking is good for the heart, stretching is good for the blood pressure, and prolonged sitting is bad for both.

Motivation to do those things is the hard part.  My sister in law did better when she had a dog to walk than any time in her life.  Then she bought a house with a fenced yard, and sat back down.  You could really see the difference.

Marta

You can hire a personal trainer who can adapt to your Dad’s schedule, and the disease will STILL have its way with him, rendering him immobile.   You might gain some time, no one can predict how much. If you are trying to postpone placement for as long as possible, then it may make sense to try.

Beachfan

My DH is solid stage 6, except for the incontinence because I watch him like a hawk and have been able to stave off "accidents" so far.  (Knock on wood!!!)  He was a former phys. ed teacher, basketball and baseball coach, jogger, and not one to sit still for any length of time.  Sadly, all of that is in the past.  He cannot maneuver steps, up or down, without physical assistance and verbal cueing ( Lift your foot, step up, lift your other foot, etc.) Purposefully moving from point A to point B requires physical assistance; seating on a chair/sofa requires physical assistance and I actually have to physically put him into bed and usually help him out.  As you pointed out, a walk is a real challenge.  At our home, I might take him around the block, or a little farther, to the bench by the ocean if we are at the shore.  I have to watch the temperature; heat and humidity are real deterrents; in a store, I often feel like I am dragging him, sometimes it seems as though I am dragging him as any "walk" winds down.  So, yes, we walk less and less.  I get him up and dressed by about 10 AM each day, after breakfast, he will sit quietly on the sofa with music on until maybe 2 PM when I get him to the table for lunch.  Later in the day, he will pace slowly in the house or outside if the weather is pleasant.  I worried about his inactivity until I came upon the section on "Apathy" in the document entitled Understanding the Dementia Experience by Jennifer Ghent-Fuller.  (This is downloadable on the internet, about 27 pages, a great guide to dementia.  Sorry, I am unable to provide a direct link.)

Looking back, there was a gradual drop off in walking frequency and general mobility.  In the last year or so, I have purposefully left him home rather than wrestling him into and out of the car, and dragging him along on errands.  It's been a long, slow, sad and steady progression; I miss the old days of activity.  Good luck.  One day at a time.  

LovingAwareness

Thank you, Marta and Stuck for your thoughts. That's kind of where I'm going with my question - how much difference will it make in delaying the inevitable if we were to push and nag him to walk when he makes excuses not to. He is really going through some fast changes now, becoming much harder to communicate with and get through to. We're moving from trying to give him healthy foods to just giving him what he will actually eat. From trying to keep him on a sleep schedule to kind of throwing in the towel and letting him have the long naps he wants. 

I feel so guilty that I keep working, rather than leaving my job and making the time and structure to get him his daily walk and everything else he needs, but if I did that, how much would it really help if at all, for how long, etc. He doesn't want to walk, or do anything, so if I quit working to give him the best shot at it - or if I hired somebody specifically to be a walking partner for him - would he really walk more? The guidelines are probably not the same as they are for somebody 74 and in good health who has motivation to stay healthy. I guess there is no formula and no way to know when he'll stop walking or if there is anything we can really do to delay it. Placing him now, while he can still walk, could possibly establish a new pattern of walking more - he would need to get around within the memory care unit - to get to the dining room, etc., - or as something that we would do with him during a daily visit - that becomes something to really consider. I think we would have to place him if he stopped walking, and that might be an easier transition for him now. It's so hard to know when to jump. 

LovingAwareness

Thanks Beachfan, I just saw your notes. It sounds like our Dad is in a similar place to where your DH was a year or so ago and headed for similar territory in the near future. He is getting to that point now with eating - "lift your fork. Now put it in your mouth." - and I really dread his getting to that point with walking or toileting, because those are a whole new level of care that I don't know we'll be able to do.

It seems like some people have decline in mobility and independent walking gradually, like your DH, but then you also read about those who lose it suddenly. I guess there's no way to know until it happens. 

I will seek out the Ghent-Fuller's "Apathy" - thanks for that - and also try to keep in mind Stuck's advice for getting up during tv commercials to walk and stretch - he won't want to, he'll look at me like I'm crazy - but maybe I can get him used to it. Keep moving, use it or lose it.

aod326

Hi. I hear the worry in your words. Honestly I wouldn't stress about the frequency of walking, or pushing too hard for him to exercise. Certainly there's an aspect of use it or lose it, but there are so many parts of dementia that cause stress, don't add this to your list. Encourage him, but don't fret if he doesn't do it - apathy is one of the many hard things to get used to when you see a previously active person's dementia progression. 

If your father was aging, but didn't have dementia, I would say definitely work with him to structure time, maybe have goals etc., in order to retain mobility. With dementia, I think it's unrealistic.

My DH was an avid runner, running marathons and ultra-marathons up until 2017. He'd fallen and broken his kneecap into four pieces, in early 2019, so wasn't running long distances, but still 3 - 5 miles running and walking, most days, before moving in to MC August 2020, age 60. He had another couple of falls and was wheelchair bound by November.

Please don't stress over it - save your energy and emotion for more challenging aspects.

Good luck.

Stuck in the middle

If I were your father, I would advise you not to quit your job.  You have a life to live after caregiving.  

I wouldn't nag him to walk, either, if that's what it takes to get him off the couch.  He is nearing the end of his life, and walking will not affect the progress of AD.  Yes, he will lose strength without exercise, but he has a fatal illness that walking will not help.  I may be taking naps too, if I live to be 82.

LovingAwareness

Thanks for the advice, beachfan, Stuck and aod - you have helped me understand from your experience that Dad's progression is only marginally within my control. We will try to keep him walking as much as possible while we can, understanding that it benefits his current general health and mood, but it probably will not be a big help to the dementia timeline as it begins to attack his motor functions more and more. Aod, very sad for you and your DH, reading that he went from 3-5 miles most days to wheelchair in a space of four months. It is alarming how fast things can change. I wish it were a year ago, for Dad. Two years ago he was still performing music with his band at his daycare center and last night I had to raise the fork to his mouth to get him to eat bites of his dinner. Things are going fast.