Fear-based refusal to walk

CincyD

A little background… My mom has advanced ALZ. On Jan 23 she and my dad moved from their home of 45 years to an independent living apartment in a senior community building. She had always been very resistant to this move, but seemed to initially be rolling with it much better than we'd anticipated. However, her personal care abilities declined pretty quickly after moving there and within a couple of weeks, they brought in morning and evening caregiving assistance to help with personal care. Again, after initial resistance, she seemed to roll with the extra assistance. Then, several weeks ago, after a day of lots of walking in the building, she complained of her feet hurting, and the next day she awoke with a swollen foot/ankle/lower calf and was completely unable/unwilling to stand up or walk. She seemed to completely freeze and strongly resist moving, offering no assistance to people moving her, making it difficult to move her. My dad isn't strong enough for that kind of care, so she was moved to the rehab section of the building. She was checked/cleared for a blood clot, xray to ensure no broken bones, was told to raise her feet while sleeping an the swelling should go away in a couple of weeks. She did not seem to have any pain while sitting/laying. After 100% resistance to getting up/walking for 5-6 days, one day she woke up and just started walking, as if a switch flipped and she just forgot that she ever couldn't. Yay! A miracle! After a couple more days for therapy and observation, she transitioned back into the apartment. On night 3 of being back, she tripped on the carpet and fell. This started another tailspin. Another refusal to try to get up and walk. It was the middle of the night, EMS was called and she was brought to the ER. That was 3 days ago. A scan was done, no broken bones. She seems to not have any pains while laying in bed. However, she is again completely resistant to getting up, and nobody is really pushing it to get her to. Her refusal to try seems to be anxiety/fear based. She looks/behaves terrified when people are even scooting her up in the bed. Our fear (me, my dad, my brother) is that the longer she goes without trying or moving on her own, the more likely she'll forget how. Is this kind of situation common? Is this how life in a wheelchair begins for her - not for a physical reason, but for a mental one? The hospital hasn't seemed very skilled in working with someone with dementia. Has anyone else dealt with this and found a way to break through to get them moving again? If we can't get her moving on her own, it's going to result in a separate living situation for my parents, as my dad will no longer be able to take care of her.

Thanks for any experience/knowledge you can share that may help!

harshedbuzz

@CincyD said:

However, she is again completely resistant to getting up, and nobody is really pushing it to get her to. Her refusal to try seems to be anxiety/fear based. She looks/behaves terrified when people are even scooting her up in the bed.

Is she still in the hospital? They may be putting fall prevention (safety first) ahead of getting her to walk. Is there a plan to send her to rehab? IME, most PWD in later stages don't do well at rehab for a host of reasons.

Our fear (me, my dad, my brother) is that the longer she goes without trying or moving on her own, the more likely she'll forget how. Is this kind of situation common?

It could be that she is already losing the mechanics of walking and that is driving her refusal. The brain controls everything; as the disease progresses a loss of ambulation is quite common.

Is this how life in a wheelchair begins for her - not for a physical reason, but for a mental one?

It's hard to tease out these things. There is likely a cognitive and emotional piece to this. Many PWD do use wheelchairs in the later stages.

The hospital hasn't seemed very skilled in working with someone with dementia.

This, sadly, is not all that unusual. Many medical professionals are clueless. Even with my mom without dementia, she is often restricted to an alarmed bed/chair because of her status as a fall risk. Sometimes as she gets closer to discharge, nurses/PT will allow me to walk with her but not always. Has the hospital PT tried her with a walker or gait belt?

Has anyone else dealt with this and found a way to break through to get them moving again? If we can't get her moving on her own, it's going to result in a separate living situation for my parents, as my dad will no longer be able to take care of her.

I've not had this exact situation. Dad did get PT in the middle stages of the disease in a rehab and did quite well. I think he enjoyed the attention. But by later stages, he just couldn't cooperate and was discharged for not making progress.

Good luck.
HB

April23

If she’s still in the hospital you could ask for physical and occupational therapy consults and see what they say regarding her ability to regain mobility.

Also was everything imaged, as in cervical, thoracic and lumbar spine, hips and pelvis? I just say this because it kind of sounds like she might be experiencing some pain when they move her. Just a thought. During one of my dad’s hospitalizations, I noticed they had done only cervical and thoracic CT and when I asked for a lumbar CT, compression fractures were discovered.