How do you help someone from constantly getting up and about without supervision?

[Sugardart]

My mother is using a walker and needs assistance as she has frequent falls when she is left to her own devices. Her independent soul has her out of her chair without supervision which causes concern for all caregivers. Has anyone figured out how to keep someone from sneaking about without supervision? She is currently in the main living area of assisted living for the majority of the day as, no matter how much we reasoned with her, she would walk without supervision. I've looked at chair alarms but was interested to see if anyone has other thoughts.

[SuzieQ]

I have the same problem with my husband who still thinks he can get about without help. I should also be very interested to hear suggestions if anyone can help

SuzieQ

[anniemay]

Unfortunately it seems to be a phase of the illness - the brain can still do it all but the body doesn't follow. My husband Tom said that when he wakes up in the morning he still thinks he can just swing his legs round and get out of bed! Only when he tries to do it does reality kick in. As you know, in the mind of the sufferer everything has to be done as soon as it is thought of, so off they go without thinking of the consequences. They are not deliberately trying to be awkward! We have fortunately got to the stage where I can sit down with him and explain why it is a bad idea to do certain things, although he might mean to help actually it makes more work for me in the long run. The sufferer is not always in a frame of mind to accept this, and getting frustrated yourself only results in reciprocated anger/frustration from the sufferer. Give them "jobs" they can do sitting down, for instance reading something or doing sudoku or puzzles if they can, chair exercises to keep up their muscle tone, something to focus on, anything else you can think of to keep the mind occupied. Sorry its not a solution, but for psp nothing is. All the best, Ann

[4mydad in reply to anniemay]

Hi Ann,

Thank you! You mention, "'...in the mind of the sufferer everything has to be done as soon as it is thought of...". I've noticed this with my dad and I didn't know this was actually 'normal' for someone with PSP. Thanks so much for posting.

Stay strong,

Candice

[anniemay in reply to 4mydad]

Glad to have been of some small help! Nothing is "normal" with PSP, for the majority of Tom's time with the illness I had no reference point, no way of knowing what was PSP-related and it was a very, very traumatic time, so this forum is at least a help in feeling less alone and knowing others are going through the same problems! "Stay strong" should be our motto - or maybe "its not me, its the PSP"!

regards, Ann

[johns65 in reply to 4mydad]

Ann, I too, am replying to the comment "in the mind of the sufferer everything has to be done as soon as it is thought of". I'm witnessing that with my husband. When he pushes the call light for the CNA, as he has to use the toilet, he has NO patience and starts to urinate NOW. Your comment makes a lot of sense, so thanks for sharing it.

[Kathy]

Hi,

Unfortunately it is nearly impossible to stop someone getting up however much you reason with them. One of the effects of PSP reduces their ability to risk assess and makes them very impulsive. Sadly, this becomes a self limiting problem because there comes a time when they are no longer able to stand with out help. In the mean time you can try a pressure pad on the seat that sounds an alarm when they stand.

Other than that I'm afraid I don't have any useful suggestions.

Love

Kathy xxx

[dllera]

Hi All - judgement is extremely impaired with PSP - you can try to do all the reasoning in the world but it will not make a difference. This is one of the big challenges of care homes -they have other residents to attend to and a PSP person is going to get up when they want to and by law (in the States) care homes cannot physically or medically restrain her even when it's about safety. It is a good idea to give the care homes all the information about PSP and MAKE SURE THEY READ IT- if they decide to take the PSP person they have to reasonably plan for the care and there will be a lot of 1-1 care involved. Some things to consider in a care home setting - -what is the ratio of patient to caregiver? What is the care needs ratio -how many hi and how many low? Are night shifts awake shifts? What is the plan when a PSP person gets to a 1-1 care ratio - -will they hire additional help? I don't want to scare anyone but you must stay on top of what is happening in a care home - my dad had very serious falls and had to go to the hospital to de-tox because they over medicated him.

[AustinHewitt]

Hi - from a PSP sufferer. Maybe my condition has not as advanced as the above cases but I have reduced the number of falls by careful use of my walking stick or tripod.

Hope this will be helpful.

Austin

[jillannf6]

Hi imam a PSP person too

I want to keep active as long as poss and despite using a stick an walker 4wheeled i still fall 2 many times a day

Lol Jill

[Sugardart]

Thank you for your insightful responses. PSP presents challenges that are difficult to deal with proactively. It is helpful to glean information from those that have been or are there. I am grateful for this community of PSP'ers to hear similar concerns, to be uplifted by encouraging words, and to realize that the trials and tribulations can be overcome with patience, concern, communication, sharing, and caring. Each day I learn a bit more.

[salem16 in reply to Sugardart]

A large walker maybe help my husband had one on nursing home.

[Vitruvian]

Have you tried a talking pillow? You can use a standard message or record your own. When the person sitting on it gets up it speaks to them (or plays your voice) suggesting they sit down or such like. You can also get pillows with alarms that trigger when the pressure on them is released. It's a difficult problem though, I have seen them work really well with some patients with Alzheimer's disease and vascular dementia. Good luck! x

[SewBears in reply to Vitruvian]

This is the first time I’ve heard of a talking pillow. I think this is a great idea! Maybe one with an alarm though instead of a recording of my voice.

I will admit what went through my warped mind just now when I read this. I can picture my loved one hearing my voice. He wouldn’t understand where the noise is really coming from. I can see him trying to bolt in a full blown run. I don’t know why this popped into my head but I’m still smiling.

❤️ I SewBears