Heart Broken

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jennifer1967

Registered User
Mar 15, 2020
24,690
0
Southampton
expressing your feelings is what the forum is for. i think you need to go back to the doctor. it is very hard to see but if your dad really doesnt want any help or medical investigations, there is nothing we can do. that is a very hard part and heartbreaking. have you got admiral nurses you could phone just to talk through your feelings and how to cope orthe alz. soc. support line. i think you need to talk things through and then see what else could be done.
 

leny connery

Registered User
Nov 13, 2022
468
0
I just want to make him be okay, I just want him to be okay
I can't do anything, I can only imagine how is feelings to openly speak about death to me which is something he always protected me from.
I'm crying here, I need to go.


I am sorry I am using this forum as a brain dump but I don't know where else to turn, I'm powerless to save or help the one person who always helped me and that really, really hurts.
we all, what we can do, is to send you our love and encourage you to love yourself too in facing the inevitable. To say death comes to everyone of us sounds trite, and you love and need him so much it hurts to think about it let alone to accept it, but you must. talk to the GP if he or she is a good listener. If not please talk to Admiral nurse..you can absolutely cry and scream and tell them your heart ache and you will be listened to and be given help and advice and sympathi with no judgement. please?
 

Aqua Marina

Registered User
Dec 26, 2023
25
0
I'm so sorry to see what you're both going thru, a lot of it is similar to my Dad, he has the same mixed dementia. He stopped eating and Mirtazapine was a miracle drug for us coz it gave him an appetite. He eats well now but is still losing weight, was 6ft and now 10 stones, was normally 16-18 stones decades ago.

I dreaded Dad going into a nursing home and am surprised he's accepted it. He fell at home in December and had a long stay in hospital where he enjoyed the rest and being looked after, proper meals.

I am currently starting to feel very worn down and have no time to myself to even keep my house clean as my Mum now has the same diagnosis and does nothing for herself.

What I'm trying to say is that you shouldn't rule out your Dad going into care, my Dad has not got agitated like he used to at home as he has no issues to worry about now he doesn't have to look after my Mum and try to stay on top of any letters, phone calls, perceived issues.

There is also the safety aspect, Dad disconnected the pipe in the bathroom sink and water came thru downstairs, he over pressurised the gas boiler twice in 2 months too.

I know my Dad is kept safe and looked after, his food and drink monitored, he watches the comings and goings in his lounge and speaks to everyone in his line of sight.

It is so wearing trying to look after them and organise medical appointments, prescriptions, food, laundry, especially as Mum just sits in a chair and watches tv, I would be far happier if she went into care, I would be less bad tempered about her changing her mind to go somewhere once I've arrived to pick her up or not being dressed or ready when she had said on the fone that she was.

I'm at breaking point as I deserve to have some enrichment and quality of life too. I rarely had a day I didnt have to be with my parents for the last 18mths.

It's not unkind to have your parent looked after by professionals. I have one being looked after and all the stress I'm under is from trying to be there for my mum who lives alone now with dementia.

You sound far more stressed than me and you really need to look after yourself so that you are able to support your Dad.
My Dad also told me to make sure I had a happy life coz his is nearly over, we must be thankful we are able to have these conversations, no matter if they don't make perfect sense at times or are hard to hear.
 

Kcs

New member
May 11, 2024
4
0
My head is all over the place and I've cried non stop since finding out.


My father has had memory issues for many years, but always been in denial.
He's got lost at times and I always knew something was wrong, but put it down to many horrible events we suffered in our lives.


He has been formally diagnosed with Vascular Dementia and Alzheimers disease today following a brain scan.
He's likely in mid stage.


He looked at me when he was told and I saw the fear in his eyes - I feel broken, scared, like I don't want to be here anymore, if I'm honest.
I can't lose him, I have tears running down my face as I write this.

I'm scared for him, I'm scared for me.
I can't cope with thinking I'm going to watch my dad be taken away from me piece of piece.


I'm numb.

Why does this evil disease even exist, why him, he'd do anything for anyone.

So now I know I can't hide anymore that maybe it was stress, or because he was having a bad day or because he is aging.


I don't know what to say.. :'(


I love you so much dad :'(
Your post brought me to tears, and I like you, cry frequently. It is so so hard watching a beloved parent slowly drift away and to feel so helpless in the process. Some days are totally unpredictable and can be emotionally exhausting, and although they are fewer, some days have glimpses of light and as someone else wrote “bittersweet “ moments. Those are the days that keep me going and give me strength to continue to do what I can.
 

Heartbrokenbear

Registered User
Dec 12, 2023
17
0
Thank you to all of you, for the replies, and to staff on this site for reaching out to me over the last few days.

I appreciate you all, and all the kindness you show.

I saw Dad on Saturday, and he seemed very disoriented, when I called him half hour before to say I'd be over he was like oh okay then when I got there he appeared to forget I had told him I was coming.


When we go shopping, he always wants the same thing, he now refuses to try anything different, I've tried to buy him treats like cake or chocolate, and once he'd love some cake but now he says no, very bluntly.

I hate the unknown, that I don't even know how long we have, I asked the GP the last time we went in and she said she couldn't say what stage he was in but I believe we are in mid stage, although this varies.

Me and Dad use to chat every night on the phone for hours, but now he doesn't want to, he says he's busy, or too tired but I know both these are a distraction and he just doesn't want any interaction.


When we go for a coffee, he sits and stares into thin air, and when I try to engage he gives short replies.

He had hearing aids fitted a short time ago after I got him seen urgently, given his diagnosis he got bumped up the waiting list but Dad says they don't work, yet he said they did when at the hospital, and swears that he needs a computer which they've not given him to use them.
So he refuses to wear them at all, and to be honest the hospital staff watched him struggle to put the aid in due to severe tremors he just couldn't do it for ages.

I get burned out, as sometimes I feel like maybe he's just being moody with me but I do know it's his illness deep down but it's such a struggle.

The other week when he stayed with me he came into my bedroom at 5am and said when are we going out, I was like Dad it's 5am we never go out this time and he said come on its 5am we go out now, yet he went back to bed after I told him no and never mentioned it since, I don't think he remembers himself doing it.

He refuses to allow anyone, not even me to put his clothes in his washing machine, I've tried and he literally got angry and turned it off at the wall, his place was hoovered and he hated it, said leave it all.

I sit up, most nights like now, it's almost 2am, and think one day, the day is going to come that either the Police, hospital or someone else is going to call me and tell me he's dead, and I can't think beyond that, because I can't see a life without him in mine.


I look back now, and see signs I missed, that he was unwell.
The tremors, the forgetting, getting lost, going missing, shutting himself away.

My meds have been increased, but I'm having some awful side effects with the increased dose, but I'm putting up with them because I must.

Social Services were notified about my worsening mental health a few weeks back, and I was told that I should have a needs assessment, but Dad doesn't want referrals, his GP has said they can't refer without his consent.


Unfortunately where I am they don't have any admiral nurses, I've called the helpline a fair few times, and had conversations but my area they only have one admiral nurses and she works full time in a care home so doesn't do anything on the outside.


What scares me is my own emotions/thoughts.


He still has a bad chest, will monitor it for another few days and if still hasn't improved I have to get him seen.

I think I am going to approach the Fortisips again with the GP, they refused to issue them last time as he said he was fine with solids and swallowing, but he lied, he has a swallowing issue. He's choked 3 times in 6 weeks and that's just the times I know of.


Luckily Dad is in sheltered housing so there are on site staff 24 hours.

Thank you again to each and every one of you, I hope you all have a good week.


Aqua sending you my best for your dad and mum.

Kcs it's a awful horrible cruel disease, we will fight on.
 

Heartbrokenbear

Registered User
Dec 12, 2023
17
0
Spent the week with Dad, took him away for a few days and starting to see vast changes in him.


He didn't want to eat very much at all, he didn't really want anything to drink either I noticed.


He's lost weight, I can tell, he must be 7 stone or somewhere around there.


I didn't mention it before but Dad had a positive FIT test around a year ago and decided he didn't want any further investigations, but I'm growing concerned he may have cancer and/or heart failure.

He can't carry a small shopping bag now without getting out of breathe quickly, something I didn't know he was this bad and we walked less than half a mile earlier and he was coughing and breathless, as he has been all week.
He wants to sleep but says he doesn't sleep yet I found him sleeping most days, he'd nodded off.


Yesterday he barely ate and when I gave him food he said he struggled to eat it and didn't feel like eating, and had to force it down.


The GP did check he had capacity when they told him he's FIT was positive, but he declined 2ww urgent cancer referral - but seeing the last week how he is, I'm concerned he had something else going on and maybe hiding some symptoms from me.

Tonight isn't a good night for me, I'm trying to think past this but it's not looking good, lack of food / drink is going down some dodgy ground.


Finally, he had a outburst of anger a few days ago, I told him he needed to lock his window because it was on ground floor and was wide open for anyone to climb in, he said no one would and I said they could, and please close it, he got really angry, slammed it and walked out the accommodation, but went no further than the end of the path, as I think he knew he'd get lost.


I guess I'm going to have to try and get him to the GP again, but that's going to be easier said than done as he always says now when I mention it there's nothing they can do for him and he isn't having anymore tests / being pulled about with whatever time he has left.

My heads a mess, just not sure how to process all of it.


On a positive I donated to Alzheimers this week by buying some tshirts they had for sale, I hope it helps.


Have a good look weekend
 

Heartbrokenbear

Registered User
Dec 12, 2023
17
0
Hi,


I'm after some much needed advice.


I found out, as Dad didn't notice, but Social Services have been trying to contact him.
A message was left that a social worker is attempting to contact him but does not say why, he has no involvement with them and the GP has said at last appointment she's satisfied with how he is being managed and that my presence has decreased any concern.


I'm worried reading online that someone may have contacted them, but we have no idea who, and now they may try saying Dad is losing capacity.


I understand it's likely most will say contact them but Dad doesn't want any contact with them, I understand he can tell them this but I'm concerned they might push and push and not accept that.


The problem we have now is Dad isn't willing to engage with any of the appointments anymore, I've tried, tried and he gets mad at me in the end and it doesn't change his mindset.


Are they likely attempting contact to try and do a needs enquiry? I'm terrified reading here they'll take matters into their own hands.


I don't think it's anything to do with my wellbeing as SS have directly contacted Dad and no one has approached me even though he hasn't engaged.


One of the agreements me and Dad came to when he signed POA he wanted to remain in his current home, and although I've yet to submit the form, I intend to stand by that wish.


Any thoughts will be appreciated, I understand how being a weekend it's likely they can't be contacted to seek answers.


I hope you are okay, have a good bank holiday
 

canary

Registered User
Feb 25, 2014
25,371
0
South coast
Hi,


I'm after some much needed advice.


I found out, as Dad didn't notice, but Social Services have been trying to contact him.
A message was left that a social worker is attempting to contact him but does not say why, he has no involvement with them and the GP has said at last appointment she's satisfied with how he is being managed and that my presence has decreased any concern.


I'm worried reading online that someone may have contacted them, but we have no idea who, and now they may try saying Dad is losing capacity.


I understand it's likely most will say contact them but Dad doesn't want any contact with them, I understand he can tell them this but I'm concerned they might push and push and not accept that.


The problem we have now is Dad isn't willing to engage with any of the appointments anymore, I've tried, tried and he gets mad at me in the end and it doesn't change his mindset.


Are they likely attempting contact to try and do a needs enquiry? I'm terrified reading here they'll take matters into their own hands.


I don't think it's anything to do with my wellbeing as SS have directly contacted Dad and no one has approached me even though he hasn't engaged.


One of the agreements me and Dad came to when he signed POA he wanted to remain in his current home, and although I've yet to submit the form, I intend to stand by that wish.


Any thoughts will be appreciated, I understand how being a weekend it's likely they can't be contacted to seek answers.


I hope you are okay, have a good bank holiday
It may well be that as your dad will be registered with the GP as having dementia and he is not attending appointments, this may have triggered an automatic referral to SS. I think that if you do nothing it will simply matters worse
I think you will have to bite the bullet and phone them to find you why they are trying contacting him
 

Banjomansmate

Registered User
Jan 13, 2019
5,609
0
Dorset
As you never know when you might need it, I think you should register your LPA as soon as possible, nowadays it can take time to go through the system.
 

Heartbrokenbear

Registered User
Dec 12, 2023
17
0
I left Dad this afternoon, and broke down in tears driving home, all the way down the motorway I sobbed.

I spoke to Dad earlier and this time didn't tiptoe about, I came out and told him I'm really concerned and worried about him.

He can't speak anymore without coughing, clearing his throat, it's so bad I think it's causing him to not speak and is tiring him out.

He confessed, he is really unwell, he wouldn't tell me anymore detail other than the cough I knew about but also said he goes to bed very early evening, he doesn't sleep and hasn't for a long time but feels exhausted.


I told him I needed him to keep fighting but he replied there isn't anything to fight, they've told him there's nothing more they can do, and that he's had his time.
I wanted to tell him I can't live without you in my life but I choked back tears hearing him talk like it.


He said he is much worse than 6 months ago, he said its all caught up with him and this is just how it ends.


He said he isn't worried, he doesn't care anymore as there isn't any point as there's nothing more that can be done for him.

I've broke down in tears again after talking to him, I know this isn't about me, but I can't imagine a day that comes where I wake up and he isn't in this world with me, a day I can't call him and speak about some rubbish, when something goes wrong him telling me it'll all be okay, I don't see any future.


I feel broken, empty, scared, really scared, hurt, gulit, upset, drained, scared for him, worried for him, and a load of emotions I can't put into words.

Dad doesn't know, I spent my birthday not long back sobbing my eyes out instead of being able to enjoy myself like he thought I was, I cried all night.


I never understand why such a cruel disease exists and I'm so sorry for all of you who've faced this, because the pain is unbearable, and he isn't even gone yet.

I'm never coming back from this, I just, I can't accept this is the road to the end.

I'm so scared, he always, always was there for me and I won't cope.


I just want him to fight, but he doesn't care anymore he's so tired.



He's agreed for me to take him back to the GP, but he did add there isn't anything they'll be able to do and that he doesn't want anymore being pulled about.


He's also told me to contact Social Services on his behalf, and that he doesn't want them involved, so I will speak to them next week and put that to bed.



It's only been like 8 months since diagnosis and he's got so much worse, so fast and even he knows he has from our chat today.


If he goes the way he is going, I'm so frightened he might not have long.


I guess now also I need to speak to my GP again, but they already have me on strong drugs but it hasn't stopped me sobbing most of the day, and feeling like this is the end for him, and me.


I will contact the helpline next week, if staff pick this up, as I know they contacted me previously.


Have a good bank holiday everyone x
 

Sonya1

Registered User
Nov 26, 2022
234
0
I left Dad this afternoon, and broke down in tears driving home, all the way down the motorway I sobbed.

I spoke to Dad earlier and this time didn't tiptoe about, I came out and told him I'm really concerned and worried about him.

He can't speak anymore without coughing, clearing his throat, it's so bad I think it's causing him to not speak and is tiring him out.

He confessed, he is really unwell, he wouldn't tell me anymore detail other than the cough I knew about but also said he goes to bed very early evening, he doesn't sleep and hasn't for a long time but feels exhausted.


I told him I needed him to keep fighting but he replied there isn't anything to fight, they've told him there's nothing more they can do, and that he's had his time.
I wanted to tell him I can't live without you in my life but I choked back tears hearing him talk like it.


He said he is much worse than 6 months ago, he said its all caught up with him and this is just how it ends.


He said he isn't worried, he doesn't care anymore as there isn't any point as there's nothing more that can be done for him.

I've broke down in tears again after talking to him, I know this isn't about me, but I can't imagine a day that comes where I wake up and he isn't in this world with me, a day I can't call him and speak about some rubbish, when something goes wrong him telling me it'll all be okay, I don't see any future.


I feel broken, empty, scared, really scared, hurt, gulit, upset, drained, scared for him, worried for him, and a load of emotions I can't put into words.

Dad doesn't know, I spent my birthday not long back sobbing my eyes out instead of being able to enjoy myself like he thought I was, I cried all night.


I never understand why such a cruel disease exists and I'm so sorry for all of you who've faced this, because the pain is unbearable, and he isn't even gone yet.

I'm never coming back from this, I just, I can't accept this is the road to the end.

I'm so scared, he always, always was there for me and I won't cope.


I just want him to fight, but he doesn't care anymore he's so tired.



He's agreed for me to take him back to the GP, but he did add there isn't anything they'll be able to do and that he doesn't want anymore being pulled about.


He's also told me to contact Social Services on his behalf, and that he doesn't want them involved, so I will speak to them next week and put that to bed.



It's only been like 8 months since diagnosis and he's got so much worse, so fast and even he knows he has from our chat today.


If he goes the way he is going, I'm so frightened he might not have long.


I guess now also I need to speak to my GP again, but they already have me on strong drugs but it hasn't stopped me sobbing most of the day, and feeling like this is the end for him, and me.


I will contact the helpline next week, if staff pick this up, as I know they contacted me previously.


Have a good bank holiday everyone x
I've just read all this thread @Heartbrokenbear and acknowledge that your own feelings are so big and very very scary - I can identify with this to some degree albeit for differing reasons and just wanted to reach out. I don't think I have much to say that could help you, but if your Dad has finally broken his resolve to keep quiet about his health issues (probably to protect you) and has openly discussed them with you, then now is your opportunity to try and tell him that you understand, that you cannot agree with his choice to refuse treatment/input but that you understand and love him just the same. He perhaps feels , like you do, that things are spiralling, small tasks seem impossible and so on. Could you discuss the possibility of him agreeing to have a couple of weeks respite care in a nursing home? Like a bit of space for him to think and process his feelings without juggling the day to day tasks and challenges? Could he come to a place near you to do this? (you mention travelling on a motorway so are you a distance away?)
He might even enjoy it and decide he'd like to stay...or would it be viable for him to come and live with you?? There is quite a lot of support out there and to be honest having a social services needs assessment needn't be a negative thing in my experience with my own father. It's so easy for all of us to put our ideas and thoughts to you, and so very, very difficult for you to take it on board and *do* anything with it - I get that, I really, genuinely do... and I'm only sorry there isn't more I can do x
 

Alisongs

Registered User
May 17, 2024
177
0
East of England
Thank you for all your posts; I appreciate them greatly and I'm sorry that we are all in this boat.


I always believed he'd get better, but in recent years he has lost lots of weight, walks much slower and has no interest in anything.


He's been started on drugs to try and slow its progression.

I know this is a stupid question and I guess I just want to hear from others in this situation, but will my dad definately deteriorate? Another family member had Alzheimers and ended up completely unable to speak, eat or walk.




One question I wanted to ask we are about to make an application for Lasting power of attorney, which kills me to even want it, I'd rather not but should this be done immediately now given diagnosis? (This side of the year rather than next year) obviously before if/he loses capacity.

It explains a lot of things that have gone on, and have happened now, although I'd of rather put it down to other things.

I'm in shock; I've not even eaten today and can't even think about food.

I've spent the past hour in bed crying, the first time I have in a very very long time.
I feel like there will be many more to come.


I refuse to not fight but I am scared for my own wellbeing as there isn't any other family.
Get Lasting Powers of Attorney and Wills and Expression of Wishes (living will, not legally enforceable but helpful) done ASAP! If possible video and photograph the process too. My husbands Parkinsons and dementia diagnoses were delayed for years due to Lockdown and progressed rapidly. At 67 he now has moderately severe dementia, deemed no capacity for medical decisions to keep him alive diabetic type 1 for 55 years cannot understand jabs any more). He's in denial, compulsive hoarder too, with elements of oppositional defiant disorder, and paranoid. Needs someone there 247 365. We married at his insistence two years ago after 25 years together to secure MY legal and financial position. He realised then I might outlive him. He now has moderately severe dementia is going downhill fast and cannot make new memories. With photos and videos of processes you can give regular reminders of what he has agreed to. The Court of Protection deputyship process, the only alternative takes about a year to go through, leaving a legal limbo.
 
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Alisongs

Registered User
May 17, 2024
177
0
East of England
It may well be that as your dad will be registered with the GP as having dementia and he is not attending appointments, this may have triggered an automatic referral to SS. I think that if you do nothing it will simply matters worse
I think you will have to bite the bullet and phone them to find you why they are trying contacting him
Exactly. And get lots of advice from as many places you can think of, as noone gives you the full picture!
 

leny connery

Registered User
Nov 13, 2022
468
0
there is no cure for this dastardly disease, granted! But for its effects like not sleeping, anxiety, any pain etc there are remedies. So it is back to the GP, with or without Dad and get those. a loss this great is hard to bear. beyond hard, but what can we do? I watch mine dying, diminishing, every day and it grieves me. But, what cannot be helped must be borne. I am so sad to read about your heartbreak, your fear of losing the person you seem to love and depend on so very much. What can I say? get help to deal with this. Please?
 

Heartbrokenbear

Registered User
Dec 12, 2023
17
0
I made contact with Social Services and got no where.

Dad had an appointment the time they said they were going to go and see him, and I told them this.
They didn't care about rearranging an appointment and were more interested who I was and speaking to me, which I declined as I feel that unless they can be honest regarding the true interest in my Dad suddenly we can't have a conversation.


Since then they've not rearranged and I'm concerned regards what might happen next.


Dad is deteriorating, I can see it now, he is becoming more frail, much much slower walking, saying less and less and recently now has said he doesn't want food, no matter how much I try and tempt it.
I often buy him food even if he says don't, sometimes he will eat it but most of the time says he'll eat it at home and then bins it without me knowing.


I made Dad a promise, and I know many will have a different view, I cannot go back on that promise.
Christmas he said to me you'll put me into a nursing home when it all gets too much, and people say they won't but when it gets too much you will - I swore and promised it would be one promise I would stand by however I have to get around it.

My auntie died after going into a nursing home within a few months.
Also, in the POA it's stated he wants me to keep him at home and bring carers in should that become necessary.


I'm really worried though that SS will try and take this out of mu hands, yes he is getting worse, yes he is struggling to cope day to day but I'm always there for him, and I will be.

The lack of interest in food is worrying me.

He randomly came out saying how he doesn't know how much longer he has again recently, I think he knows how he is deteriorating.

I'm going to try and get Fortisips from GP, get him weighed, see if he's lost anything and see what they suggest next.


If I'm truthful, I think he has given up, but I won't give up on him.
 

canary

Registered User
Feb 25, 2014
25,371
0
South coast
If someone got appendicitis, but their relative said they had promised that they would never go into hospital, so they died, would this be OK?

I dont know whether your dad is coming to the end of his life or not, but it certainly sounds to me as though he should not be on his own. Are you able to go and live with him and look after him? Does he have the funds to pay for carers to come in? If so, then you can arrange them yourself and dont have to involve SS. If hes going to need funding, then you will have to work with SS and co-operate with them.

You have had lots of good advice on this thread, but dont seem to have acted on any of it. I know that you are afraid about it all and scared about him dying (and believe me I am not unsympathetic as I remember this stage with mum), but you cannot stick your head in the sand and do nothing
 

Alisongs

Registered User
May 17, 2024
177
0
East of England
I made contact with Social Services and got no where.

Dad had an appointment the time they said they were going to go and see him, and I told them this.
They didn't care about rearranging an appointment and were more interested who I was and speaking to me, which I declined as I feel that unless they can be honest regarding the true interest in my Dad suddenly we can't have a conversation.


Since then they've not rearranged and I'm concerned regards what might happen next.


Dad is deteriorating, I can see it now, he is becoming more frail, much much slower walking, saying less and less and recently now has said he doesn't want food, no matter how much I try and tempt it.
I often buy him food even if he says don't, sometimes he will eat it but most of the time says he'll eat it at home and then bins it without me knowing.


I made Dad a promise, and I know many will have a different view, I cannot go back on that promise.
Christmas he said to me you'll put me into a nursing home when it all gets too much, and people say they won't but when it gets too much you will - I swore and promised it would be one promise I would stand by however I have to get around it.

My auntie died after going into a nursing home within a few months.
Also, in the POA it's stated he wants me to keep him at home and bring carers in should that become necessary.


I'm really worried though that SS will try and take this out of mu hands, yes he is getting worse, yes he is struggling to cope day to day but I'm always there for him, and I will be.

The lack of interest in food is worrying me.

He randomly came out saying how he doesn't know how much longer he has again recently, I think he knows how he is deteriorating.

I'm going to try and get Fortisips from GP, get him weighed, see if he's lost anything and see what they suggest next.


If I'm truthful, I think he has given up, but I won't give up on him.
See a specialist solicitor for advice? Also go to dementia cafes and support groups for this. Your GP will know if there is a memory clinic at your local (mental) hospital. Just walk in and ask for any booklets they can give you. Information is power.

I am sorry to say that I have heard of social services and hospital wards taking matters into their own hands, overriding existing LPOAs, without existing attorney's involvement. Etc.

In my own case, my loved one is in hospital awaiting a care package to go home. A Deprivation of Liberty Safeguard was invoked to prevent him leaving even though the lack of care on the ward is actually worsening his dementia. We didn't know of this at all.

The Law around this requires the named person (me) to be engaged and involved in the process before the document is put in place. The law requires a specific triggering incident to invoke the DOLS. It was put in place on 25th, after I had visited my husband and left.

Everything was fine, waiting for discharge to a short stay in a nursing home to arrange home medical care package.

On 28th strange new discharge worker informed us he was going into a home next day to assess for permanent residence. Husband very firmly wanted to go home, and I was appalled discharge arrangements were overturned without us. We left.

What followed beggars belief.

All hell broke loose. Security forced us down on the floor, injured my husband, dragged him back, and I was guarded until police arrived to enforce my departure. I rang a solicitor while waiting. She wanted a copy of the dolls everyone was shouting about. DOLS. First I'd heard of it.... Solicitor explained what it was. Staff reluctantly got a photocopy for me. The document itself explains what has to happen before it is implemented. So many errors it really cheered me up!

Went home got lots of advice and information overnight. Long story short, original discharge worker now arranging for discharge package straight home ASAP, once medication sorted out (which could have been arranged on ward six weeks ago, but they preferred this be done via short stay in nursing home, not a permanent stay..)
Ward was just holding husband, pending discharge. Doing nothing proactive.)

Ward matron apologised profusely for all the errors. Husband still bruised and battered. Ward staff quietly eating lots of humble pie and being extremely nice to us. They broke the law.

If your loved one ever goes into hospital, keep checking if a DOLS is invoked. Without your involvement it is not legal, but your loved one's interests and care would be out of your hands. Beware.
 

Alisongs

Registered User
May 17, 2024
177
0
East of England
See a specialist solicitor for advice? Also go to dementia cafes and support groups for this. Your GP will know if there is a memory clinic at your local (mental) hospital. Just walk in and ask for any booklets they can give you. Information is power.

I am sorry to say that I have heard of social services and hospital wards taking matters into their own hands, overriding existing LPOAs, without existing attorney's involvement. Etc.

In my own case, my loved one is in hospital awaiting a care package to go home. A Deprivation of Liberty Safeguard was invoked to prevent him leaving even though the lack of care on the ward is actually worsening his dementia. We didn't know of this at all.

The Law around this requires the named person (me) to be engaged and involved in the process before the document is put in place. The law requires a specific triggering incident to invoke the DOLS. It was put in place on 25th, after I had visited my husband and left.

Everything was fine, waiting for discharge to a short stay in a nursing home to arrange home medical care package.

On 28th strange new discharge worker informed us he was going into a home next day to assess for permanent residence. Husband very firmly wanted to go home, and I was appalled discharge arrangements were overturned without us. We left.

What followed beggars belief.

All hell broke loose. Security forced us down on the floor, injured my husband, dragged him back, and I was guarded until police arrived to enforce my departure. I rang a solicitor while waiting. She wanted a copy of the dolls everyone was shouting about. DOLS. First I'd heard of it.... Solicitor explained what it was. Staff reluctantly got a photocopy for me. The document itself explains what has to happen before it is implemented. So many errors it really cheered me up!

Went home got lots of advice and information overnight. Long story short, original discharge worker now arranging for discharge package straight home ASAP, once medication sorted out (which could have been arranged on ward six weeks ago, but they preferred this be done via short stay in nursing home, not a permanent stay..)
Ward was just holding husband, pending discharge. Doing nothing proactive.)

Ward matron apologised profusely for all the errors. Husband still bruised and battered. Ward staff quietly eating lots of humble pie and being extremely nice to us. They broke the law.

If your loved ottersne ever goes into hospital, keep checking if a DOLS is invoked. Without your involvement it is not legal, but your loved one's interests and care would be out of your hands. Beware.
And also be aware that the best care may not be home care by family. What would you want for yourself if you were your dad?
 

Heartbrokenbear

Registered User
Dec 12, 2023
17
0
This is going to my last post, at least for sometime now.

I joined here in desperation of my current situation, and I am grateful, so grateful to each and every one of you who have commented, and the staff here who have privately contacted me.


I have various other illnesses which I won't enter into here as I didn't join here for me, I did it to try and help my Dad.
You don't know my story, you don't know the bond I hold with my Dad and you only see what I type here.


I have done much of what has been suggested to me here, I called the helpline a few times, I've emailed local dementia charities, I have contacted the last week several solicitors for advice and also now have been put into contact with a specialist Advocate who is going to represent me against Social Services.


I've taken my Dad to the GP, I was the one who got him the MRI scan, I have been the one who has pushed for the Dementia drugs, all which failed.
I have put my own health to the back to help the man that raised me in this world, knowing just what had happened to be throughout my childhood.


I never came here for judgement, or at least digs against what I have and haven't done or listened to.


Maybe some people choose to put their loved one in a nursing home, but last Christmas my Dad cried to me, he told me he didn't want to ever go into a nursing home, he told me that was his wish, regardless what happens - he was deemed following Mini COG to have full capacity at that time, to which he also gave me Power of attorney although he hated signing it because he told me he didn't want to lose independence, and that's why I never registered it.


Maybe others are stronger, maybe others here have better support but I haven't even got over my Nan dying over 20 years ago, I don't have the support networks or family/friends most of you have here.


I promised my Dad I wouldn't put him into a care home, he wants to die at home and I know how fast people go downhill once they get put into a home.


Honestly, I don't know how I keep him out of one, at least permanently because now for some reason I have Social Services trying to interfere, maybe because Dad is already in sheltered housing.


Dad most likely has another serious condition [cancer/early stages of heart failure] do you think I am burying my head when I wake up every single day, every single day wondering when I go and see him that day, maybe he might be dead? Do you know how it feels wondering the last time I speak to him that night might be the last? I'm sure you do, so please don't ever tell me I haven't listened to the advice here, because I have - many of my posts here I was sobbing hard.


I'm not burying my head in any sand, I'm doing what I believe my Dad would want, and how he would want is to stay independent, and he wants to remain at home.


It's too painful coming here anymore, reading comments or other parts of this forum and then reaching out to have people tell me I'm burying my head - why say that, why not reply at all if you've nothing constructive to say to me.


I am doing my best, my best I am neglecting myself and own wellbeing.


Every day a little bit more of him dies, and you know something, every time a part of him dies, a little more of me dies with him.
I'm scared, I'm scared for him, I watch him stare at random things wondering how scared he is inside knowing he is dying because he does know, he knows enough to know how ill he is getting.


Today I found out he's definitely eating much less, he is going days without food.
Maybe he has entered end stage but I can't stop this cruel and evil disease slowly stealing the only person I ever love forever more.
I was too late telling him how much I loved him, how proud I am to call him my Dad, and even if I could of changed Dad's I never would.


He gets me Birthday cards thinking I am his Dad, do you understand how painful that is, I'm sure many of you here know.


I cry myself to sleep many nights, I try so hard to hold it together all for him but I'm broken, deep down I'm dying with him because the person I was is not there anymore.
I don't enjoy anything because if I drink a drink or want to watch something I feel guilty knowing Dad can't even do those basics.



I'm sorry I commented here and it seemed like I wasn't taking advice, I have.

I be judged whatever I do, and I won't be breaking the promise I said I wouldn't put him into a nursing home, if that means I have to force the council to get carers I will, because I fight it all the way in his best interests. But if I am honest with you all, I'm not even sure he'll make it to need full time care, he is rapidly deteriorating, losing mass weight - as I posted previously they have said they believe he has colon cancer which if he did have at that stage, would of spread by now - he has a proactive cough that hasn't gone so maybe it's spread to the lungs.


I am in pieces, broken, scared, and no words, no one can change how I feel because I just want my Dad to be okay and I feel so useless knowing I can't help him like he helped me all through my life.


My auntie died within a very short period after being put into a nursing home, she also had dementia - many will know here that putting someone into one will kill them much quicker.

I have spent hours and hours a day searching for help, advice, ideas, medications, trials, how to manage his symptoms, often until dawn each night searching the Internet to try and find ways of helping him.



But, I feel this is where my posts should end, at least for now and I joined here for comfort, support and suggestions.
I didn't join here to have someone tell me I'm burying my head, which maybe I am but I'm pretending to myself it'll all be okay, but I haven't neglected his interests doing that.
If only you really knew how much effort I've gone to helping him or at least try to.

I spent new year crying, in the kitchen, when he was sat in the living room completely unaware, I sobbed wishing he would just be okay.
I sobbed on my birthday when he forget.


I'm genuinely grateful for all of you here, the comfort, support and advice.

I've taken him to appointments, I've pushed him to eat/drink, but at the end of the day if he doesn't want it, I can't make him.



I may return one day here, and that frightens me even more because the next time I may not have a Dad.
I love him, I always will, this disease will never ever steal the love I hold for him and the memories we shared, which I just wish I could go back and do it all again with him.


I'm broken, I don't ever see myself being happy again, because I believed he'd be here with me all my life, however stupid that sounds.

Every night I went to bed as a child I told myself he'd be okay, always, that's before I saw how painful life is.


I wish all of you the very best in your journey with your loved ones, in this cruel, disgusting, horrible disease.

All I can pray and hope for now is my Dad somewhere inside him knows how much I so so badly love him and I will never ever stop loving him, even if he forgets who I am, even if he acts like he hates me because deep down, I know my Dad died a long time ago and the person who's left isn't him but this evil disease.



Take care everyone, I appreciate you all x
 

2ndAlto

Registered User
Nov 23, 2012
462
0
I am so very sorry you are in such a world of pain. I am sure your Dad knows you love him with all your heart. I wish you and your Dad the peace you deserve. "God will wipe away all tears"
 
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