A hard decision: help needed

So we have come to a point where my love is walking…meandering, staggering…  around with his eyes sometimes closed. His legs are buckled, he leans sideways or backwards and it is truly scary. It looks like he could fall any minute, and he could. Not all the time but a lot. And he sometimes does fall, and quite often nearly does. He usually won’t sit down for long.

The care home aides and nurses want….or suggest, that he needs to be strapped into a wheelchair. To prevent falls. They are as terrified as I am when  walking beside or behind him. He could hurt himself or them.

And he has fallen a few times …kind of sliding to the ground in confusion when his legs don’t work. No injuries yet. “I don’t know what is wrong with my leg” he says.

Neither does anyone. It is a guess but probably it is a possible bout of sciatica, part the pain meds, possibly the dementia closing down another segment of the mind, but mostly because he can no longer orient vertical, up and down. That was an early problem. Now he doesn’t know where is upright and can’t tell his legs what to do. The dementia is taking away even that.

So it is a safety issue. But I cannot see the advantage or the care in strapping him down like the worst kind of tortured prisoner and I am refusing to sign the paper.

It is illegal to restrain him without my ok.

And I am NOT ok with this.

Over the 2 and a half years we have been there I have seen this. The patient starts strapped down for safety but is taken out and up on their feet for a walk 20 minutes a day. At most. Soon of course they can’t walk at all and life becomes a Brody chair. Where they lie swearing and trying to get out,  while the care machine rolls on around them and staff gossip and go for breaks.

Then, unlike when they were mobile,  the patient-victims really ARE swiftly parked and ignored. Oh fed and cleaned and cooed at from time to time  but that’s about it. No interaction except with family. Even the recreation aides don’t have much to offer once they are parked.

I want to puke. This is not humane.

Many of the parked recognise that I am a friendly face and make some kind of happy contact. But like everyone, I walk on by, with other things to do.

Part of me thinks wildly that i could bring him home, transform our house… foam on the floors and clear out the furniture such as it is, and extra care aides. Let him wander and fall safely in his strange fragmented world. Bring him home.

But foam doesn’t clean well and it is not that simple. It is the 36 hour job.

We don’t have family willing or able to take shifts and we don’t have that much money to get a suitable house, transform it and hire help. That is for the 1%. For us, we are beyond lucky to have public care. Many don’t.

There is also my own slowly eroding remnant of a life to consider – although at moments like this it doesn’t count for much- and those who depend on my work. That must count too.

On the other hand my own mother was strapped in a chair because she kept trying to walk when she was totally paralysed on the left side, with resultant dementia. And there was no other choice. But she was not drugged and never parked. She had my father with her 24/7. I have no idea what kind of love and determination that took. After she died he regained a huge amount of mental capacity and resilience. He did see what was coming for my love and me and told me not to do as he had done.

Comments and advice are welcome,  here, on Facebook, or by personal email. I need some help with this.


Filed under Uncategorized

8 responses to “A hard decision: help needed

  1. jenny gohl

    In physio we used to have a high walker – a wheeled walker that the person could lean on with their forearms. The idea would be to prevent falls and injury to Don, staff and yourself while maintaining his mobility and strength for as long as possible. Just looked it up. It is called a platform walker.

    Liked by 1 person

  2. gragor11a

    My father died in restraints. He was strapped down to a bed at night as he would walk around in the dark. It was for his safety. He was in the last stages of esophageal cancer. He was used to sleeping in the basement so that is where he was restrained.

    At night he rolled over fighting the straps and fell off the edge of the bed. But he was bound at the waist so couldn’t hit the floor to escape.

    He died of exhaustion that night as his struggles consumed the last of his life force.

    I’m sure my mother was mortified. The love of her life died in the room below hers and she never heard his struggles. What is in the best interests of the employees is not necessarily in the best interests of the patients. In this case I include my mother in the employee group as she was the primary care giver.

    You are in that ‘between a rock and a hard place’ place. My example is not the same situation as you find yourself in. But is sure does point out the hazards of un-supervised restraint use.

    I’m sure you will get lots of advice one way and the other. Only 20-20 hindsight will illuminate the outcome of your choice.


  3. Thanks Jenny – will check. Gragor — pretty hard to put a like on that story. I can’t imagine your mother’s feelings. The thing especially is that if he is restrained they will mostly ignore for sure

    Liked by 1 person

  4. Grace

    Thank you for your amazing observations and heart felt sharing! Each situation/person is so very unique. In my visitation experience, I have been amazed at the “conversations” that I have had with residents in Brodies! Looking at the positive angle, If the restlessness can be detuned with meds. so he can be at peace sitting, perhaps he would be able to get more enjoyment in what else is going on around him? perhaps the parts of the day when he is at his best, he needs to be allowed to “roam”?

    Liked by 1 person

  5. tressbackhouse

    it is ok for people to say what ought to be , but it comes down to what is possible! Everyone will have a different idea! I suppose that as much private care with the right kind of person ( if you can find them and they are available!is)is the best choice ! Somehow you must accept that you have, and are, doing the very beat possible! There are no adequate words of comfort . Compassionate thoughts are with you!

    Liked by 2 people

  6. hilliar1

    Hello Delores. Molly and i are currently driving Alaskan panhandle so am typing not well with thumbs and will be brief. The best advice comes from those that have walked the path before. I have not walked the dark and difficult path u currently tread. My end of life experience with my 97 year old mother’s  dementia does not compare.  But I can empathize. If i place myself in Dons condition i know what i would say.  Please God do not strap me down.  Do not take away my most basic freedom. Life is movement. When i stop moving i die. I would go crazy if i could not use my arms or legs. As difficult as it may be i believe u are on the right path. The job of staff is to care for the physical body. Your job is to care for the spirit and i think u are doing that as well as anyone could. Of course u know that no matter what course u take there will be some that will condemn u for it. But that is how u find out who your true friends are. In the end all i can do is pass on my love and best wishes to both of u. Your friend Chris. 

    Sent from my Samsung Galaxy smartphone.

    Liked by 3 people

  7. Anonymous

    I worked in long term care for ten years and faced this problem many times.Not restraining is hard as many clients end up with severe fractures which will require surgery which is often followed by death or being completly bedridden and having pressure ulcers. The other risk is that the person who falls can severly hurt another client or a caregiver. Most cregiver injuries are due to unstable client mobility. The other issue is chemical restraint -is this an option for his agitation? This also comes ith great risk and has to be done very csrefully but could help if he has to be in a wheelchair and keeps fighting to get out. Unfortunately long term care is now often in private/public partnerships which do not have physio and occupational therapists on staff who see clients on a regular basis and can assess and treat client needs regarding mobility and wheelchair use.i hope you have them available to you to help you ith your decision making. Karin.

    Liked by 1 person

  8. tressbackhouse

    I do not know how! But I feel as though i did not read this before ! reread it the idea of being tied down is horrible . it does not help that if he had cancer he would get palliative care , and that is what he needs ! I have come very close to the end of my life and sheer willpower gets me up each morning and pigheadedness makes me manage alone . I am fortified by the affection of my children and by a few understanding friends . the reason i am saying his is that I am probably as close to the end as is your beloved husband , to be tied to a chair would be keeping me in limbo . Actually I have trouble getting up in the morning because in a foetal position in bed my mind happily wanders!! after all this is how we were when we came into this world! the trouble is we fight the return!

    Liked by 1 person