PSP Association
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Deprivation of liberty orders

Has anyone heard of these being used for PSP patients? I’m at my wits end. I can’t keep John safe. He gets up from chair and falls breaking things and hurting himself. Neurologist thinks he should be in a home but I can’t do that to him. I can’t leave him alone but I have to go to loo, clean teeth etc. I am wondering if DoL would enable me to strap him in. Any suggestions very welcome. Xxx

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I understand what you mean.

Kevin-1 came up against this same problem when Liz went into a home, so you may find even being in a home helpful!

My love was confined to bed and the bed lowered to floor level with a sensor indicator for movement tracking if he moved. Nursing staff (or the protocols for patient safety) just dont seem to include cot sides up or restraints as a means of keeping them safe from impetuous movement that ends in danger to self!

Have you got help with John's care at home? If you had another person in the house with you both, then you would have more freedom of movement - and less stress on yourself!

Have not looked at your other posts, but it sounds to me that should be a priority and your next step!

It is something we all have to face - we are not superwoman/superman! We need to ask for help!

Hope you find a solution that is acceptable to you both! And fast!

Hugs

Jen xxx

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Unhelpful!!

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Thank you that is very helpful. Xx

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I'm on my own but lowering the bed is a great idea. I'll try that. Xxx

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The bed in use for my husband was motor driven. If you lower the bed by taking legs off, you will both find it much more difficult to lift/stand/give care, etc. You will be overstressing your back to do any lifting, etc from that low level.

Maybe something for a soft landing (!) that you can move to care for him might help you more - such as a bed with under bed that could be pushed in/out at will and might hopefully catch his fall.

I was also able to purchase what I call "a 'D' ring". This was a sturdy metal upside U attached to a long wooden board that fitted beneath the mattress so U could be used by patient to grab and help pull up to sitting and getting out of bed. I found it could also be positioned around waist level on bed so that it restricted rolling and getting out of bed!

Hope you are finding some ideas to help you with John's care. Am so sorry to hear his cognitive ability is affected. Think you really should get your GP on board to help you arrange for more in home care. Fully understand how you must feel.

Hugs

Jen xxx

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A very common problem for those living with PSP unfortunately. I had a baby monitor camera in front of C’s chair and kept the monitor with me at all times. I could talk to C through it so if I was in the loo and saw him move I’d tell him to stay still until I could get to him. He didn’t like being on his own but reassurance that I could see him did help. He also had pressure pads on his cushion and on the floor sounding an alarm. I gave him a remote door bell he could press if he needed me and I always had the chime box with me. We had pressure pads his side of the bed and a toy frog that croaked if moved tied to the bedroom door handle. All these things didn’t stop all falls entirely but did prevent many. This stage doesn’t last and one day John won’t be able to get up which proposes different problems but we got round most of them and C stayed at home until the end. He had many visits to A&E but no overnight stays in hospital during the 6 years from diagnosis.

I hope you are getting some time alone. At the beginning friends would come and sit with C so I could go out just for a short while but later sitters from Crossroads (UK) came twice a week. Don’t get isolated. Invite friends round if you can’t get out. I arranged regular take away evenings where friends would bring in the food and after a bottle or two of wine and lots of laughs I felt I could face anything PSP threw at me. C would enjoy the company as well and even when he couldn’t eat with us or speak, he would still be included in conversations and manage thumbs up and down.

C asked me to promise never to put him in a home. I told him I couldn’t do that but promised to keep him at home as long as I was physically and mentally able to care for him as he deserved to be cared for. By asking for help, having a house full of equipment, taking C out regularly to the coast and NT Gardens until 3 weeks before he left me and laughing a lot with friends and C ( we laughed about the grossest of things) he was able to stay at home until the end.

Best wishes and don’t forget this phase will pass, hopefully without too many visits to A&E.

Xxxx

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Bless you. I am in uk and got one three hour session from Crossroads. Baby monitor is a brilliant idea and I’m going to order one straight away. Xxx

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Thank you I'm looking for a baby monitor. Xxx

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Dearest NannaB

You amaze me with your wise words and methods.

It feels like years ago since Les and I laughed when he broke the cats water bowl and we are sitting in a pool of water desperately trying to stop the water from go in under the kitchen units with towels. Les slipped when his hand slipped and his face ended up in the cats food. It was only after cleaning up that we realised he had cut his bottom on a sliver of ceramic.

The falls were horrid and became frighteningly more dangerous. We or I have the fun memories like this one. Admittedly they were horrendous and infuriating and although I tried so hard not to be angry I didn't always manage.

Now Les is in the last days/hours I am feeling guilty for my response to some of his falls. I have apologised but that doesn't help as I should have been more understanding.

As PSP claims my husband of 41 years I struggle to understand what we must have done to deserve this grotesque ending. I would prefer to be losing him to another woman. Hard as that would be it just seems to be a better alternative than watching him struggle.

Love & hugs

Pat x

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Oh Pat, we are human and all say things in the heat of the moment when we are tired, desperate, angry, hurt. Please try not to feel guilty, hard I know, but remember all the good times as Les nears the end, no regrets. A chain smoking friend was diagnosed with lung cancer this week. He knows he brought this on himself. With PSP we don’t know why yet. One day we may do but we can’t turn back the years to prevent what is happening/has happened to our loved ones so try not to dwell on it.. Hopefully in the future they may be able to prevent others from getting it. Years ago when I was visiting a friend who was wracked with pain from a then undiagnosed condition, I asked her, why, if there was a God, did good people like her have to suffer so much. She replied, My dear, if we didn’t experience suffering, how would we appreciate good health and the pleasures and wonders of this world. We would all be like robots. If people didn’t hurt us or we never suffered from sickness or pain, we wouldn’t know the feeling of well being and we couldn’t experience true love and know what it is like to be cared for or care for others. She also said she never says why me, or why them but why not. I went to her 100th birthday celebration at the end of October and she is still positive but did say when she gets to heaven she is going to ask God why he took so long taking her “home”.

Sending you both a great big hug Pat and pray that whatever time Les has left, it will be pain free and that you both feel peace.

Lots of love

XxxX

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Maybe your friend is still here so she can share her wisdom with us, who so need it. Thanks, Bev, for passing along her words, and for being here yourself!

Love, Sarah

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I know this may sound stupid, but have you tried talking to him? NannaB taught me years ago, to say things in a different way makes all the different. Instead of saying "don't move" try " Be Still" it even worked on occassions! It seems they remember the last word spoken. When you are leaving him for those few precious seconds, ask him what he MUST do. Even at the end, I would make Steve mouth the word "still" to me. Also, it puts the choice of them moving, back in their court. Steve had full capacity until the end, the days, I gave him the choice, to sit still and be safe, or get up and do some floor hugging, he normally chose to do as he was told. Took a bit of the responsibility from my shoulders as well!

Or trying telling him straight, the doctor thinks he should be in a home, because of his inability to sit still. Give him the choice of where he wants to be. Won't work everyday, but it might help stop the odd one or two falls, which might make all the difference, to you being able to cope.

Another thing that kept Steve in his place, have you got him a recliner chair? I use to keep Steve's feet up,(good for him!!!) quite a lot. He couldn't work the buttons, most days, then he couldn't move.

Sending big hug and much love

Lots of love

Anne

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Thanks Anne. I think John's cognitive ability has gone pretty well. Dementia has taken over. I get no real interaction and he has no memory. Xxx

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Hi

I bought an over the chair table which is basically a wide adjustable table which goes over the arms of the chair and it has brakes on which kind of reminded him to stay put. Ironically as they progress it stops being a problem , sad but true.

Julie

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Early on, we bought a pair of Midland brand walkie-talkies. We now have two sets. One set charges while the other is in use. My wife always has one unit and whoever is responsible at the time has the other. They can be used either as alert (call button) or for talking. Don't know what we'd do without them.

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You need to talk to a solicitor to find out what you can and cannot do. If you strap him in it will be classed as deprivation of liberty and the powers that be could take action against you. Even if it is for his own safety. Perhaps talk to your doctor again and ask him for suggestions and advice. So sorry for your dilemma. It really is a desperate period of care. Best wishes.

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Thank you. I’m getting a baby monitor which seems the best idea. X

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Just make sure you have all your powers of attorney in place.

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I do. X

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Good X

What a nightmare this disease is! X

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Hi VronB

It seems you got to where you needed to get on this thread and I am a little bit of a 'Johny come lately'.

So just a word on Deprivation of Liberty Safeguards. The Act in which the powers was introduced after a number of troubling events in residential homes. People were being deprived of their liberty with no safeguards or external monitoring being in place. The Care Act was not very well drafted and it has led to a lot of confusion as to how best to use it.

Add to that 'homes' and hospital wards leap to DOLS in order not to be sure not to deprive people of their liberty incorrectly.

In a nutshell: If you prevent someone doing something they want to do you are depriving them of their liberty. So Liz's situation (which is a good example of how ridiculous it get's) was that she asked for the bedsides to be put up to prevent her falling out of bed at night. The home, by putting them up, would have been depriving her of her liberty if she did not have the capacity to make that decision. Because the bedsides are restrictive of her movement. If however she has the capacity to make that decision then they are not depriving her of her liberty. They did a 'bad' capacity test and decided that she did not have capacity to decide. Which was both ridiculous and bad practice, bu it enabled them to trigger a DOLS assessment by an external assessor which of course would then mean they are no longer responsible for the decision. I got her out of that home before that took place. Currently she wears a seat belt when in her wheelchair - The new home are quite happy that she has the capicity to agree to that.

So in your example were you to use a seat belt to keep him in his chair and to prevent falling and he agrees to that and has capacity to agree to that then you are not depriving him of his liberty, but you must undo the seat belt or remove a blocking table if he requests it.

So what is capacity to make a decision?

There is a simple test which is in the Capacity Act itself.

The person must be able to understand the decision they are making.

They must be able to retain the information on which they are basing their decision for the duration they need to make that decision.

(I want to leave the home and take the bus to town)

They must understand what the implications are of making that decision.

(I might get lost).

They can make an unwise decision if they meet all of the above. That is a decision which others might think unwise.

(I think I know my way. I might get lost. But, I am going anyway)

Finally there is no global lack of capacity. That is someone might not have the capacity to decide whether to sell their house, but they may well have the capacity to choose what to have for lunch.

So a deprivation of liberty mostly refers to specific areas. If someone is deprived of their liberty a Best Interest Decision Maker is appointed. They are empowerred to mak decisions on that persons behalf in those areas stipulated. That person is usually a close relative who is closely involved in the persons care. If there is a Lasting Power of Attorney for Health and Welfare then the donee is most often the appointed person. If the LPA has been activated then it trumps DOLS which no longer applies.

I've never heard of it being used in a family home before, but I don't move in those circles.

But please do take care of yourself. It was being on hand endlessly which wore me down.

I hope this helps a little

Kevin

xx

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Thanks Kevin that's very helpful. I have hurt my neck and shoulders this weekend. Getting John out of bed is a huge struggle particularly in the mornings. Weekdays are fine but weekends a nightmare. If they don't come when he wants to get up he gets up and falls over. Sometimes he is confused and can't follow the instructions to get on his front. We are going through a phase now where he wants me to take him to the loo three or four times a day but produces nothing until perhaps the fourth other fifth time. I find it a strain on my pushing the commode even dragging lt backwards. So back to OT to try and get pressure pads and crash mats. I'm going to get a baby monitor as well. At the moment I can only leave the flat for three hours a week. John is desperate not to go into a nursing home which the neurologist thought was appropriate and like you I'm going to have a go. It's his mental state I find most difficult to cope with - apathetic and no co-operation when moving. Thanks again for your response. Xxx

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Hi

Gosh, I remember when I had all of those issues with Liz with all of the aching and pulled joints and muscles. An OT turned it all around for us. A commode downstairs and another upstairs. Turning stands for each. A hospital type bed which went low and raised to help her onto her feet. (Free on loan from the NHS - OT will sort that one out. It all takes up so much room though! I expect you know about all of those things.

Yes, the sitting on the commode and nothing happening became routine. We just agreed she would sit there until she had sat there as much as she wanted and we would try again later. What did work sometimes was me asking, "Do you want to go this minute or do you just think its a good idea?" Often she would put it off and a higher success rate ensued.

We used a wireless doorbell for her to summon me, but she often forgot, or just tried to move without assistance. The baby monitor sounds much better. I think you can get them with video now...

Wishing you the best of it. I know how hard it is sometimes.

Kevin

xx

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Thanks Kevin. We've got the hospital bad and commode and doorbell (but that's randomly used). Whats a turning stand? I'm ring OT tomorrow they are very good. X

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