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The effects of a Dols order on me

kni46

Registered User
Sep 5, 2016
1
This is the first time in my life that I have posted anything on line or joined a forum. I am writing this as I feel no one is listening to me. I have lived with my father all his life and apart from my husband there is only two of us. We are very close. Following the breakdown of home care arrangements when I discovered my father's carer had stolen £11,000 from us and also jewellery, my father had a stoke. Whilst I know anything could have triggered this I blame the carer completely. My father really cared for this man and was devastated when he no longer came. My father has dementia and I think it was all too much. Since february I have had challenged some fundamental beliefs of mine by doctors asking about DNR to Dols orders. I do not want to share responsibility with some strangers at a care home who have only known him for a few months and have to ask them if I can take my dad out. My dad is 82 years of age, bed bound, cant turn without assistance, has no capacity and they insist on taking away his dignity further by labelling him under a Dol's order. I can understand that if a person had dementia and was mobile the need for this but this is ridiculous. When my father dies, the second call will be to me and the first to the Police. A Police officer will sit with the body until the funeral director comes and he will then be taken not to a funeral directors of my choice but what the coroner says. I understand the need to protect people but common sense should prevail in these circumstances. As a result of the care home covering their backs I have fallen out with the care home and have said goodbye to my dad and not gone back. This is killing me and no doubt in time I will return. I feel this law is wrong it is a sledge hammer to crack a nut! I have complained about the Social Worker and no one is listening to me, just like no one is listening to me about the carer. The care home still allow him to work and have chosen profit before protection of the elderly. They should have suspended him on full pay whilst the Police were investigating. I am still waiting to hear if anyone will listen to me. I feel very depressed about the whole situation. I have told my husband if I ever get like this what I want him to do. I always thought life was for living no matter what but seeing my dad in nappies, not being able to do anything is a heartbreaking eye opener. I feel that the Dols legislation needs to be softened. Change the name, deprivation of liberty, you think of prisons, secure wards. I reluctantly agreed to Dad going into the home as my husband and I couldnt manage to look after him and all his needs. It is a CARE HOME not a glorified prison I agreed to send my father to. This whole situation is a nightmare.
 

Tattoo Lane

Registered User
Jun 28, 2016
176
Devon UK
Oh kni, what a dreadful situation! I have absolutely no experience of this, so am unable to offer anything but my sincere sympathy for you, and to send some love and light your way. xxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 

jaymor

Volunteer Moderator
Jul 14, 2006
12,930
England
Hello kni46 and welcome to talking point. I am sure you will get lots of support from the forum.

My husband was in a nursing home and was had a DOLs in place for 4 years. At the beginning he was mobile but for nearly two years was bed bound. I attended all the assessments and was more than pleased with the way they were carried out.

It was a safeguarding operation not a restrictive one. They were making sure that the care was right, he was not being restricted at all and the nursing home was caring for him properly. His file was looked at, his medication looked at, they spoke to his carers and asked questions on how they managed his different needs. They even asked me of my opinions of the care and his room and the food.

All people in care homes are now assessed. It is a positive measure. My husband when mobile was taken out with my permission.

My husband passed away in the nursing home. He was taken from the nursing home to the chapel of rest of our chosen funeral directors. The coroner was involved for the reason that anyone who dies in care with a DOLs in place has to be reported to the coroner. The coroner issued an interim death certificate and the funeral was arranged.

There was a coroners court to attend some weeks later. It was just a case of the coroner having all the details and hearing anything that anyone wanted to say. Our son attended for us and he was treated with compassion and thoughtfulness. The coroner actually thanked him for attending.

With the DOLs I was still in charge of what happened with my husband, I saw his care plan weekly and was always aware of any changes and anything I was not happy with I could speak up about and listened to. We talked with my husband's doctor about DNR and decided that we would accept medication as long as it worked and helped him but we did not want any attempt to resuscitate him should he stop breathing.

I am sorry you are having such a difficult time and you are not happy with the home. It is very difficult dealing with a loved one in care without all the extra problems you are experiencing. We need to trust those we use to help us care and when that trust is so badly broken it must be unbearable.

Hopefully others will be along to offer some advice, please keep posting.
 
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Beate

Registered User
May 21, 2014
11,957
London
The important part of a DoLS is not the deprivation of liberty but the safeguarding. It makes sure that if people without mental capacity are not allowed to leave or decide something freely it's because it's in their best interests. Among other things, without a DoLS no one could stop your father from leaving the care home and getting under a bus. They have a duty to keep him safe and a DoLS allows them to do this legally. A DoLS is standard in every care home and hospital now. Would you not want him to be treated in a hospital either because they have to keep him under DoLS? I'm afraid you'd fall out with every care home you want to put him in because they have to do this or they'd fall foul of the Mental Capacity Act. It's immaterial whether your Dad would be physically able to leave btw.

It's all explained very well in this factsheet:
https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1327

Is it really worth so much of your energy and anger? Meanwhile your Dad is without your visits. For his sake, make peace with the care home. They are only doing what they have to do by law.
 

Kevinl

Registered User
Aug 24, 2013
4,771
Salford
Hi Kni, welcome to TP
As Beate says without a DoLS they can't make him stay in the home nor can the do the last bit in the DoLS, Safeguard him. Forget deprivation of liberty bit if he's immobile it's the safeguard bit that's important without that they in anyway that any member of the public has a right to touch another person.
For his own good they have to change his pads so safeguarding him, although they're not allowed to use force, without a DoLS they have no more right to do this than I have to change your underwear without your consent.
If he decides to drink a bottle of bleach then they not allowed (technically) to stop him without a DoLS, if you have the DoLS in your name then you'd have to be present 24/7 to address any issue that might arise as they couldn't.
When someone dies under a DoLS if it's expected and of natural causes as far as I know the home's GP can sign a death certificate, if the death is unexpected then as with everyone who dies like that the coroner has to be informed DoLS or not.
Should he die and the police were not aware what would happen if you made an allegation about the home, sadly at the time of death potentially your late dad may also become evidence in a court case an so in the first instance he would have to go to an undertaker vetted by the coroner, later he can be moved to a place of your choice.
My wife is detained under Section £ of the Mental Health Act and that's way up on a DoLS but I'm still allowed to take her out anytime I want, they have asked that I put her in the back of the car with the child locks on and have someone with her, to be fair though I wouldn't take the risk but other less affected "tell" the staff they taking the PWD out they don't ask permission.
I think you're focusing too much on the "deprivation of liberty" bit and ignoring the "safeguard" part. I agree it is unfortunately badly named, if it was just called a "Safeguarding Order" I doubt you'd feel the way you do about it.
Keep posting
K
 

Jessbow

Registered User
Mar 1, 2013
3,015
West Hertfordshire
My Mum died in a care home, and was subject to a DOLs order, when she died, she wasn't refered to a coroner, so to say that one equals the other isn't true. She went to the funeral director of my choice- why wouldn't she?

What other effect does the DOLs have on you? As other have said, its not about being kept in, its about keeping him safe. Could you take him out anyway- he sounds pretty poorly (or do you mean take him out of the home completely? Would that be in his best interest?)


Even with a DOLS order I was able to take mum out whenever I wanted.

Do you really want to cut your dad loose now? Please think carefully before deciding you wont visit any more.
 
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jaymor

Volunteer Moderator
Jul 14, 2006
12,930
England
Jessbow I am not sure when your Mum died but now a hospital or care home that has a death of a person with a DOLS has to report the death to the coroner. The coroner then speaks with the family and doctors involved in the care. If satisfied the death was expected he issues an interim death certificate which allows funerals to take place. All our involvement with this, which our son dealt with, was conducted on the telephone. They dealt with our son well, were sympathetic and understanding and made it very easy for him at such a difficult time.
 
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LYN T

Registered User
Aug 30, 2012
6,960
Brixham Devon
Hi Kni,

I'm sorry to read how down you feel-I'm sure most Carers who post on this Forum understand that feeling.

Re the DNR/DOLS; DNR is very important as without instruction medical action may need to take place which would further limit his quality of life. I'm sure that you know about ribs being broken etc when people are 'bought back'. Not a scenario I ever wanted my late Husband to go through.

DOLS, as others have explained, is a legal necessity due to a ruling at the Supreme Court a few years ago when it was found that someone had been deprived of their liberty illegally (not Dementia related). The CH HAS to adhere to the law-there is absolutely no way that you can fight against that one.

My late Husband had a PM and a 'mini inquest' when he passed away; the Police weren't called just the Coroner's office. Once the formalities were completed Pete was taken to the funeral Director of my choice. Throughout this process I was treated with full consideration and the Lady who I spoke to reassured me that Pete would be treated with dignity. I had no reason to think otherwise.

You say your Dad is bed bound; do you feel it would be a good thing to take him out of the CH?. I was able to take Pete out for only a few weeks after he went into a CH before his behaviour became violent again-I'm afraid for his own safety and mine those outside excursions had to be curtailed. However, that was my choice (after speaking to the CH Staff). On occasions a Carer and myself would attempt to take Pete out in a wheelchair but it was obvious that he was not happy. Sometimes a stage is reached when all a person with Dementia needs is peace and quiet and rest.

I would advise that you try and put these feelings of anger behind you (difficult I know) and try and choose what battles to fight; a DOLS order can't be 'softened' it is what it is and you can't change it. You already have the theft scenario to deal with-I wouldn't let that one go for sure.

For the sake of your Dad I would definitely try to build some bridges with the CH Staff as I would ask who is suffering here? You and your Dad probably. It's terribly difficult but imagine how you will feel if/when your Dad passes and you haven't visited as often as you and he would have wished.
 

Drucie

Registered User
Mar 28, 2017
1
DOLs after death

My 96 year old mother died in a care home yesterday. She had been very well looked after in the home for over 3 years and I visited regularly from my home 90 miles away. I put in place a request that if Mum died in the Home, after death she should be looked after by a local undertaker of our choice.
Mum was diagnosed with a chest infection by the GP in the Home at 10.15 on Sunday night, prescribed antibiotics but passed away in her sleep at at around 5.10 yesterday morning, I am thankful that her end of life was peaceful. The nurse from the Home rang me at 5.40 to notify me. I was shocked and dazed but the nurse dealt with the call very compassionately. However, goodbye to compassion when the "system" took over.
A very abrupt call from the police followed, within the space of 20 minutes to inform me that Mum's body had been removed to the hospital mortuary and that I would hear back from the coroner. The coroner had to get involved because a DOLs was in place. I heard nothing however, so today my husband chased up to find out what was happening. The coroner's office has been practically impossible to contact, finally got through (another abrupt response) about 15 minutes before they closed and was told that they needed a form from the police that hadn't arrived. My husband then contacted the police (better response this time) and was told that the form was sent by email yesterday. So we are now stuck. One person tells us the form has been sent, another that it hasn't been received.
Because of the DOLs, Mum in death is receiving the same status as if she were a prisoner in "state detention". Yet Mum has paid for her own imprisonment!
I wanted Mum treated with dignity after she died, instead she has been carted about by "the authorities" at the will of "the state."
If you are asked to sign a DOLs authorisation on behalf of your next of kin, please refuse. This is just another time wasting piece of bureaucracy which has exacerbates grief at a difficult time.
As an appointed person when you sign a DOLs you sign up to duties but please be clear, when your loved one dies you will receive no information about what is happening to them. The post death issues are not described on the DOLs agreement so you are being duped! I am so upset by the events of the past two days (no opportunity to even say goodbye to Mum) but at least it has been therapeutic to write down my feelings!
 

jaymor

Volunteer Moderator
Jul 14, 2006
12,930
England
Hello Drucie and welcome to Talking Point. I am so sorry you gave not had a good experience when it came to dealings with your Mother's passing.

As you will see from the two previous posts, Lyn and myself had a far different experience to you. Both our husband's had DOLS in place safeguarding them from overly restricting them.

Neither of us had any involvement with the police, just the Coroner because of the DOLS.
I was with my husband when he died and I rang the Undertaker from the nursing home and he was taken straight there. My husband died on Easter Saturday so we were delayed by a couple of days before the Coroner could be informed. The Coroner arranged a date for a hearing that was weeks away but issued an interim death certificate that allowed us to arrange the funeral.

The hearing was straight forward and our Son attended and was shown compassion and understanding.

Have you asked the Care Home the reason for the police being involved and why the undertaker of your choice was not contacted? I am sure a hospital mortuary will deal with your Mum with compassion and dignity but it is not what you wanted and I understand your concerns. I hope you get some answers and they can give you some assurances.
 

nannylondon

Registered User
Apr 7, 2014
2,475
London
Hi my husband died in January, as he was under DOLS the coroner was involved, but as Jaymor said this was a formality, he was taken from care home to chapel of rest, and the coroner phoned me in the morning to tell me there would be an inquest and this was just a formality, the funeral was able to go ahead, only hold up was we had to wait for death certificate to be issued.
 

Jessbow

Registered User
Mar 1, 2013
3,015
West Hertfordshire
Jessbow I am not sure when your Mum died but now a hospital or care home that has a death of a person with a DOLS has to report the death to the coroner. The coroner then speaks with the family and doctors involved in the care. If satisfied the death was expected he issues an interim death certificate which allows funerals to take place. All our involvement with this, which our son dealt with, was conducted on the telephone. They dealt with our son well, were sympathetic and understanding and made it very easy for him at such a difficult time.
She died in a nursing home. She'd been admitted from hospital with a pretty dire hear condition ( with CHC funding) .About a week previously she went off her food ( unheard of) and generally went downhill until a week later, she was pretty unresponsive. The GP was called ( lets not talk about him) and said she'd got pneumonia and he wanted her suctioned and put on anti-biotics for a week.

I swear he'd not left the building before she took her last breath.

If her death was reported to the coroner, I never knew about it. She died on a wed, I picked the paperwork up the day after from the nursing home and registered her death on the Friday. And yes, she was deffo subject to DOLs order, and the nursing home was one of a large well known chain so doubt anything was amiss.
 

love.dad.but..

Registered User
Jan 16, 2014
4,499
Kent
I don't know whether this is different in some areas but my dad died recently and apparently his Dols was awaiting renewal so I was able to arrange everything myself with the FD. Out of hours dr verified death but as dad was being taken out of the area to another FD he was kept overnight at a local FD so his GP could certify the next day that his death was expected. However I was told by his nursing home that as happened the previous week with another resident whose death under dols had been expected, following strict protocol police were called, the relative could not stay with their pwd and the body taken to the hospital morgue if dads renewed dols had been in place that would have happened to dad which would have shocked me maybe different homes and coroners have varying interpretations. I was told this action now also takes place because of Dr Harold Shipman where he 'expected' the deaths he was involved with.My mum died suddenly at home and we had police staying with us until she was taken 5 hours later by the coroners ambulance and although it was obvious why they had to stay and check things they were very understanding and we were not restricted after they had made certain checks.
 

Saffie

Registered User
Mar 26, 2011
22,507
Near Southampton
A DoLS is standard in every care home and hospital now.
I have only just seen this which Beate wrote last year.
Is this true? I have no recollection whatsoever of signing a DoLS form but can remember other papers, I signed when my husband was transferred from hospital to nursing such as choices at time of death and of course the DNR form.
Surely not everyone who goes into a care of nursing home is subject to such a restriction.

P.S. I notice that the OP of this thread has not returned to TP after that one post.
 
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jaymor

Volunteer Moderator
Jul 14, 2006
12,930
England
My understanding of a DOLS from my husband having one was that because he had no capacity to agree or disagree with any restriction put on him in the nursing home the nursing home asked for an assessment to make it clear to them what restrictions they could enforce in his best interests.

He was assessed in my presence and after a very lengthy assessment and the assessor talking to me and the staff and his care plan being read the decision was made that he did need the restrictions the nursing home requested. I was happy to accept the restrictions and agreed to be his representative. He was reassessed annually.

A DOLS will only be put in place if necessary and Care Homes and Hospitals need a DOLS in place before they can put any restriction on anyone's daily life. So not everyone in care will have this safeguarding in place.
 

Saffie

Registered User
Mar 26, 2011
22,507
Near Southampton
My husband had lost capacity, as confirmed by his consultant psychiatrist when I applied for Deputyship months before and had no understanding of his situation nor input into any decisions made about him.
He was unable to walk due to his recent amputation so don't know if that had any bearing on things at all
 

notsogooddtr

Registered User
Jul 2, 2011
917
The person who completed the assessment for my father explained that something as simple as using cot sides on a bed can be construed as a deprivation of liberty.The important word is 'safeguarding'.The process is designed to ensure that any restrictions are necessary.
 

Pete R

Registered User
Jul 26, 2014
2,038
Staffs
I have only just seen this which Beate wrote last year.
Is this true? I have no recollection whatsoever of signing a DoLS form.
It is kind of true in that a CH/Hospital will apply for a DoLS for most people with Dementia. The problem is there are so many applications it can take the LA years to get round to doing the assessment and then getting you to sign anything. My Mom has been in care since 2014 and has still not been assessed.

If it gets to a "serious" need for one then there is a FastTrack approach.

I do believe the DoH are reviewing the whole process.

:)