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I was wrong
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Message 1.Â
Posted by Sunny Clouds (U14258963) on Monday, 13th June 2011
Dad may end up in care.
I hadn't counted on him becoming both mentally and physically impaired at the same time. That's not a safe combination.
I'm in shock.
We'll see what the neurologist says, but it's not looking good. -
Message 2
Posted by one who posted here once (U4064841) on Tuesday, 14th June 2011
Really sorry Sunny.
Thinking of you. -
Message 3
Posted by Sunny Clouds (U14258963) on Tuesday, 14th June 2011
Thanks, Flo.
His GP is referring him to a neurologist, and has gently told him it's because of his memory. I haven't told him that I've told his GP about his hallucinations. His recent CT scan showed no bleeds.
I have a horrible suspicion it's Lewy body dementia.
The thought that he could die, I can deal with. The thought that there may be years of misery between now and then I am struggling to deal with.
I was faced yesterday with something horrid. How do you tell a widower that his wife is dead? I just said she wasn't there, but am I going to be telling him mom is dead every day for the rest of his life?
Maybe it isn't dementia. Maybe it's something else. But his memory is going, he is more and more confused, he is falling over. No one has yet said they can stop this.
I'm sitting here wondering if he's ok, or if he's fallen over but can't get to the phone, or can't work out how to use it, or doesn't feel able to call me because we were snappy with each other earlier. -
Message 4
Posted by one who posted here once (U4064841) on Tuesday, 14th June 2011
I can't imagine what it's like having this kind of worry about a parent.
I haven't heard of Lewy body dementia, but it may not be that. What sort of wait do you expect there will be before he can see a neurologist? I hope it's soon and that some kind of help may be possible. -
Message 5
Posted by very_vague (U9649391) on Tuesday, 14th June 2011
Dear Sunny,
Sorry to hear this very bad news. I just want to jump in with a couple of words of reassurance though - delirium and dementia are not the same thing, and a person who is otherwise very much on the ball can suffer from hallucinations, memory loss and confusion for a short period due to physical problems (esp. fever) without going on to develop dementia of any kind. In those cases symptoms tend to develop quickly and are of relative severity. On the other hand dementia (including Lewy Body) tends to present more slowly over time. Now, I don't have any idea of the situation with your father, but it's best not to jump to conclusions without talking to a specialist.
The other point that I'd like to make is that dementia does not always involve great suffering. What's hard for people is the precipice, not the fall itself and there can be many moments of tranquility, acceptance and even happiness for people suffering from dementia. If this is what's happening to your father then it's good to have a diagnosis and to take it from there - he may progress well and there are certainly options for making his life more comfortable and enjoyable, whatever his long term prognosis or the state of his memory.
My qualification for saying this is that I volunteered with dementia patients for over year. It was a very rewarding experience and I do know that it is possible to lose one's memory without losing one's dignity, so please wait and see and do not despair. -
Message 6
Posted by Michael Alexander Kearsley (U1675895) on Tuesday, 14th June 2011
Strokes, some forms of epilepsy, parkinson's disease and a number of other things can cause such symptoms including even hallucinations, of course there may be multiple problems. One problem can lead to another that causes other problems. If someone's physical senses including balance are disturbed then they are likely to be confused and to stumble.
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Message 7
Posted by Katy Tulip (U2239809) on Tuesday, 14th June 2011
I'm so sorry to read this Sunny.
I'm very worried about my Dad too, as is the whole family, and it's so painful, isn't it?
Katy -
Message 8
Posted by catwomyn (U1485618) on Tuesday, 14th June 2011
Oh Sunny, I am sorry to read this. But he's lucky to have you to advocate on his behalf, he really is.
Take care of yourself.
Cat x -
Message 9
Posted by Redbookish (U1335018) on Tuesday, 14th June 2011
Tough news, Sunny. I may be "teaching my grandmother to suck eggs" as they say, but is he sufficiently hydrated? Simply dehydration can cause dementia-like symptoms in elderly people; a surrogate great-aunt of mine had a minor illness that left her dehydrated and weak, and she was hallucinating and very ill from this really simple cause.
Also, multi-infarct dementia doesn't show up as a stroke on a CT scan, but has similar effects as a stroke.
I'm sure you're going through all the possibilities and options. Good luck & best wishes to you & your father. -
Message 10
Posted by MrsGks (U14084771) on Tuesday, 14th June 2011
Dear Sunny
I am sorry to see that your father is still falling over and hallucinating.
Does he wear one of those alert "buttons" round his neck that he can press if he falls.
I hope he gets an appointment soon.
Don't forget to look after yourself - it's easy not too when you are worried about someone close.
Here are some hugs for you.
{{{{{ }}}}}
MrsGks -
Message 11
Posted by Sunny Clouds (U14258963) on Tuesday, 14th June 2011
He's been having physical problems for over a year. Firstly, he slowed down a couple of years ago, which I put down to age, then he started stumbling, which he put down to thicker soled shoes than he used to wear and to uneven pavements. I became more and more suspicious about this but couldn't put my fingers on what was going on. My brother and I both nagged him to start using a walking stick.
Meanwhile, his memory has been fading for at least three years (my late mother used to comment on it) and has grown a lot worse over recent months, and particularly bad in the last three months. This has increasingly been accompanied by confusion. I first put this down to shock at falling over, then to depression, then when he was in hospital, I got them to check his urine, and yes he did have an infection. He was discharged and perked up a bit, but then went downhill again.
Talking with my brother, we have been piecing some things together. It is clear that increasingly, he sounds irritated and responds to a question he hasn't been asked or gives a response that is totally irrelevant to something. I had thought that this was down to his worsening hearing, but I've now realised that it isn't. He's hearing me saying things I'm not. I could kick myself. How could I, as someone who hears voices, not realise when someone else is hearing them?
Visiting him 2 - 3 times a day over the last month has enabled me to see things I hadn't seen before. I find that he gets his medication confused. I loaded his dossett boxes on Saturday and went round to find him moving pills from one compartment to another, so that some days he had twice as many pills as on other days.
He has just phoned me. He says that no one is there and "where is she?" It's half past ten, he knows that it's half past ten. The intermediate care team is due at eleven and he knows that they're due at eleven. He says it's not mom he's looking for. Then I worked it out from what he was saying. It's me he's looking for and he can't see the lack of logic of phoning someone you're looking for and asking "Where is she, I can't see her?"
It's perfectly true that he could currently have another water infection. However, even if that is causing a current heightening of symptoms, it doesn't take away the problem of increasingly frequent falls, fading memory, general confusion etc. That's not taking into account his depression and anxiety.
I'd better go. I said I'd be there in 20 minutes, which was long enough to write two paragraphs and to grab a bag with some stuff in and get there.
Thank you to those that have been responding. I am trying to adjust to this, whether it's dementia or a collection of unconnected problems. -
Message 12
Posted by Dunlurkin NL (U2675855) on Tuesday, 14th June 2011
Oh Sunny, I am sorry to read this. But he's lucky to have you to advocate on his behalf, he really is.
Take care of yourself.
Cat xÂ
Sunny, I think cat has got it in a nutshell.
Please, please don't neglect your own welfare in all of this. Take a 'time out' when you can so that you can be there for him if he needs you. It's good to hear that you and your brother are both aware of what's going on.
Very best wishes.
Dunlurkin -
Message 13
Posted by Spartacus (U14762542) on Tuesday, 14th June 2011
Sunny,
Lewy body dementia (which seems to have some symptoms similar to Parkinsons and others similar to Altzheimers certainly seems a possibility to me.
My mother had Parkinson's disease and both my next door neighbour and OH's mother had Altzheimers. It took a while to get proper diagnosis etc for all three. Some of the symptoms you have described fit well with my mother's and others seem more like my next door neighbour or OH's mother.
Neighbour and OH's mother were different from each other in some ways but both seemed much happier and more settled once they went into care homes.
In the case of OH's mother she became very relaxed and happy; though eventually she hadn't a clue who anyone was she was never distressed as the staff were lovely and she was well treated.
My mother stayed in her own home until a month before her death and was as miserable as sin and made life hell for her full time carers and everyone else.
Getting her to accept care other than from us (even in her own home) was a struggle but no way could we have done it full time even if we'd been willing to.
Hope you get things sorted out for your dad soon - for goodness sake don't drive yourself into the ground or you'll be no use either to him or yourself.
Hugs and best wishes. -
Message 14
Posted by Auntie Prue (U14585893) on Tuesday, 14th June 2011
We had a client at CAB who appeared to be suffering from dementia. He wasn't looking after himself, stank to high heaven, and could get quite aggressive from time to time. He wouldn't register with a doctor - or even live in his house - he prefered his shed.
Luckily, at the time, we were in a building that was shared with local health agencies, and as a great favour, someone popped in to have a look at him.
To cut a long story short, he turned out to be suffering from a kidney infection - the doctor could somehow detect a smell that gave her a clue, through all the unwashed stuff.
He was persuaded to allow himself to be taken to a local doctor as an emergency - and within a week - he was in his right mind again etc etc. Not perfect - but a lot better. He still preferred the shed though. -
Message 15
Posted by Sunny Clouds (U14258963) on Tuesday, 14th June 2011
The doctor doesn't think it's a urine infection but did agree on my insistance to send a sample off for testing.
When I got to Dad's, he was still asking where "she" was. It became apparent that he wasn't sure who "she" was. It was either his mother or me. He has got us variously more and more confused and now he seems to have a sort of general "the female relative who looks after me" persona he's looking for or relating to. But that's only part of the time and at other times, he's perfectly lucid.
We chatted with the nurse. She seems to think he can keep his independence for longer. We discussed all sorts of things. He's already forgotten what we've discussed and I've agreed to make a list of what we discussed and agreed.
I'm also going to draft a letter from him to his solicitor in respect of my mother's probate (there's an outstanding problem with the will) and also lasting powers of attorney, always supposing it's not too late. I used to advise solicitors on assessing clients' mental capacity to instruct them and now I've forgotten it all. I suppose I shall have to look it up from scratch. -
Message 16
Posted by Flightless Anachronistic Bird (U6437464) on Tuesday, 14th June 2011
Sunny,
Just to say I feel for you and am thinking of you. As others have said, keep some of you to look after yourself. Take care.
F(A)B xx -
Message 17
Posted by Redbookish (U1335018) on Tuesday, 14th June 2011
Oh Sunny. How awful for you. It must feel like a descent into a version of hell. I've always admired how clearly and methodically you think things through here on ML (posting as thinking out loud). I hope you can muster some of your brain power and good sense now. I find writing lists helps in crises.
-
Message 18
Posted by Sunny Clouds (U14258963) on Tuesday, 14th June 2011
I'm struggling to think at the moment - my thoughts are overwhelmed with feelings. But later tonight, I shall do some paperwork and then go round and sort Dad out for the night and get started on a new routine.
I suppose there's one saving grace. If it gets really bad and I move in, then if I lose my incapacity benefit, I shall be able to claim carers allowance instead. No, even that isn't making me smile any more.
Earlier, I was making jokes with Dad, some pretty raw, but then my humour is. Things like "It's alright, Dad, I'm not putting you in a home. Well, not until next week..."
Now, I'm just crying. Maybe I can find some dementia humour on the web or some dementia music to help me deal with it.
I recently bought a copy of Iris. I don't know if it would help to watch it or if it would make things worse. -
Message 19
Posted by strawberrysunrise (U10452397) on Tuesday, 14th June 2011
Three ladies were discussing the travails of getting older.
One said, 'Sometimes I catch myself with a jar of mayonnaise in my hand, while standing in front of the refrigerator, and I can't remember whether I need to put it away, or start making a sandwich.'
The second lady chimed in with, 'Yes, sometimes I find myself on the landing of the stairs and can't remember whether I was on my way up or on my way down.'
The third one responded, ' Well, ladies, I'm glad I don't have that problem. Touch wood,' as she rapped her knuckles on the table, and then said, 'That must be the door, I'll get it.'
Doctor Ryan tells his patient, Muriel, 'Well I have good news and bad news...'
Muriel responds, 'Tell me Doc. What's the bad news?'
You have Alzheimer's disease.'
'Good heavens!' exclaims Muriel, ' So, what's the good news?'
'You can go home and forget about it.' Says Dr Ryan.
Two elderly couples were enjoying a friendly conversation when one of the men asked the other, "George, how was the memory clinic you two went to last month?"
"Outstanding," George replied. "They taught us all the latest psychological techniques - visualization, association - it made a huge difference for me."
"That's great! What was the name of the clinic?"
George went blank. He thought and thought, but couldn't remember. Then a smile broke out across his face and he asked, "What do you call that red flower with the long stem and thorns?"
"You mean a rose?"
"Yes, that's it!" He turned to his wife. . ."Rose, what was the name of that clinic?"
good luck sunny, one of my friends who loves comedy, said that when she gets dementia(it runs in her family and she's in her 70s)she will be able to watch all the old comedy she loves again and enjoy them as if it's was the first time. -
Message 20
Posted by Sunny Clouds (U14258963) on Tuesday, 14th June 2011
Does that mean we can watch my father's favourite films again? Ooh goody! I love Top Hat, Easter Parade, Singing in the Rain, Gigi etc.
-
Message 21
Posted by Mabel Bagshawe (U2222589) on Tuesday, 14th June 2011
Hi Sunny
Collgue's f-i-l has Lewy Bodies - currently at home and coping OK, although he had some bad times and ended up in hospital until stabilised, not helped by psych's insistence on prescribing meds that were indicated as not appropriate for LBD (you have enough nous about the Mental health system to keep a close eye on them)
Just to remind you on, mental capacity, LPAs etc
(the old OPG site no longer exists, sadly, but the making decisions fro someone else part is a lift from it)) -
Message 22
Posted by Sunny Clouds (U14258963) on Tuesday, 14th June 2011
Thanks.
I just called my Dad. I called him earlier, but he didn't answer and I assumed he was in the loo or something. He tells me that he's spent the last three hours on the floor but he's back on his feet again. With some soul searching I have decided not to rush round but to do what I meant to do and to do some grocery shopping for both of us and then go round to his place later and tuck him up in bed.
I suppose I have to be strong. If I go rushing round every time he says he's had a fall, I won't cope and I won't be there for him. I need to just rush round when he says he's on the floor and can't get up. At least today he accepted that he needs a pendant alarm. -
Message 23
Posted by dondy (U3463640) on Tuesday, 14th June 2011
Sunny
I just wanted to say how much I admire you for keeping things going for your Dad when you have your own health difficulties to cope with as well.
I don't know what specialist medical help you have for your Dad (apart from mentioning the neurologist) but if you can, insist on him being seen by a specialist in elderly mental health. GP should be able to sort it out. I know how hard it is to navigate the system when you are feeling at your best, so think of your own health too.
Thinking of you.
dondy -
Message 24
Posted by Sunny Clouds (U14258963) on Tuesday, 14th June 2011
He's seen a geriatric medicine doctor, who reduced his blood pressure medication. When his GP took his pressure yesterday, it was through the roof. I strongly suspect that it's not the change in medication, but Dad forgetting to take it, although I checked his boxes tonight and it was gone.
I found he'd fallen off a ladder. He said he thought he needed to climb through the ceiling, although by the time I found him, he could see that that was inappropriate. He pointed to writing on a plank (which wasn't there). I explained to him the difference between illusions and hallucinations and said that it would help his doctors if we could work out which it is he's having but he said he wouldn't have told me if he thought I'd tell his doctor.
He forgot again tonight that Mom was dead. I asked him "have you forgotten?" and after a pause, he said she was dead.
I'll start a thread elsewhere about how to deal with that.
There's so much more I could write. It's all welling up inside me like the tears on the outside.
I could say so much more about this, about the conversations with him and others. -
Message 25
Posted by Spartacus (U14762542) on Tuesday, 14th June 2011
Well at least he has finally agreed to a pendant, so that's a bit of progress. These things are very difficult as I know from my own experience.
Here are a few special hugs from me to you:
(V) < > /\ [V] (( )) Y [{ }] "v" -
Message 26
Posted by Sunny Clouds (U14258963) on Tuesday, 14th June 2011
What a lovely collection of hugs. Thank you.
-
Message 27
Posted by dondy (U3463640) on Thursday, 16th June 2011
</quote>He's seen a geriatric medicine doctor, who reduced his blood pressure medication. </quote>
Sunny
The geriatricians aren't necessarily experts on mental health problems (I'm probably telling you things you already know.) Assuming they exist in your area, a referral to a consultant in old age psychiatry would help your father, I should think.
It is hard when you have to keep banging on at the medics to give you what you need, I know.
dondy -
Message 28
Posted by Sunny Clouds (U14258963) on Thursday, 16th June 2011
Yes, he's being referred to the appropriate specialist for his mind, too. His GP told me on the phone that he was referring Dad to a psychiatrist, but then when we were together with Dad, talked to him about his memory and said he'd refer him to a neurologist. Either way, I assume it's the local memory clinic (under whatever name it goes by).
I'm tearing my hear out today. I had a row with him over his morning medication, because he asked for his paracetamol, which he takes in the morning, and then when I gave it to him, got very agitated over where I'd got it from. There were scattered pills on the dressing table that weren't there when I cleaned it a few days ago, although they might have been there a couple of days (under something in the tray he keeps things like his keys and watch on). He seems to be taking random pills.
A district nurse came round to draw up a care plan and she asked about medication and he produced an out of date list. We had a disagreement over when he'd started and stopped various pills. I went to get the list I'd got in his pill box and clipped his latest prescriptiont to, but he's moved it. I've had to ask the nurse to ask his GP for a new prescription straight away, prepacked. The trouble is, even though a pack will stop him moving pills from one compartment to another, it won't stop him taking two doses on the same day and none the next.
He told her I would do this, that, the other. He refuses to accept that he may need any other care. After the nurse had gone, he got angry with me for moving some of his medication and I lost my rag. I told him that I was angry that he kept telling everyone I'd give him all the help he needed but then shouting at me when I do help him. I can't both get him up in the morning and get him to bed at night, giving him his medication each time, or I won't get enough sleep. I need a lot more than he does, or I go manic. I gave him a whole load of examples of how muddled he was getting and how bad his memory is and told him he's got to work with me and the team or he's going to end up in a nursing home very soon. He looked shocked and numb.
The thing is that I have mental problems, but I accept help. If I have to stay in a hospital or in respite, I do. If I have to have the mental health team out every day for a while, I do. If I need help from friends to cope, then I accept it gratefully but try not to put all the burden on one person.
And heaven help me, but it's only a matter of time before I lose my rag to the extent of pointing out just how much he hasn't done for me over the years. To say that his parenting has been largely hands-off would be an understatement. On one occasion, I was in respite for 3 months, just 15 minutes walk at a slow pace from where he lived. He didn't phone, he didn't send a card, he didn't visit. He didn't even bother to tell social services that I had cats and that no one was feeding them, and it was a fortnight before I was aware enough of anything to remember that I had cats etc. One could go and get food dropped near the local takeaways and the other, who couldn't climb out of the garden, presumably survived on food brought home and dropped by the other one. That's been Dad's reaction to me having mental problems. He'd quite happily let my cats starve to death rather than either feed them or bother to get anyone else to feed them.
I was in a hospital for five weeks following surgery. He never phoned. When I could walk well enough, I got off the ward and called, but so far as I am aware, he did not phone the hospital to ask how I was. When he was in hospital recently, I visited for two hours, twice a day for a fortnight. I spent £250 on taxi fares. To him, that's nothing, to me it's enough to get my cat's teeth fixed.
Since he won't accept help from anyone else, I'm frightened to go more than ten minutes away from home, but my cat needs surgery, I need to pick up my new glasses, I need a routine blood test.
And of course, every time Dad falls over, he assumes I'll pick him up. But he weighs 12 stone and is very weak. I'm not big, I'm not strong, and I've got physical problems that mean that even lifting shopping is a problem (I use a trolley to carry heavy shopping). I'm in pain from lifting him.
Yesterday, I hid his ladders in a locked shed. He has a key, but I'm hoping he won't work out where they are, but if he does work out it's me that's moved them, there'll be hell to pay.
I'm just shellshocked. I didn't know dementia could come on this fast and I hadn't ever thought about what you do in the in-between phase when they're only dotty part of the time, and I hadn't thought about the disagreements that can occur. -
Message 29
Posted by Spartacus (U14762542) on Thursday, 16th June 2011
Disagreements are normal Sunny. Before she went into care Sylvia (my neighbour) accused people of stealing her lemonade all the time, for example. Nobody had stolen it - in her paranoia she hid everything in odd places.
I would find half empty bottles of lemonade secreted in the wardrobe, in drawers, in cupboards - all over the place. One day she said she had no money. A quick hunt round the house turned up over £200 hidden around the house - in food cupboards, the oven, drawers in her bedroom, the hall cupboard etc.
She'd forget to wash and change her clothes - I had to go round to change her for bed at night and then go round to change her again in the morning.
I was terrified she'd blow herself up - she had a gas cooker and no longer could light the gas properly... so I popped in regularly throughout the day to make her a cup of tea and check up on her.
I could go on for hours - it was exhausting. OH thought I was nuts as before she became demented Sylvia was a horrid old bat - People at OH's workplace had christened her the poisoned dwarf.
Strangely, once she became demented, she had a personality transplant and became sweet as pie to me instead of being a pain in the bum like she had been for the first 10 years I knew her.
Be careful Sunny, I knackered my business in part as a result of looking after Sylvia. Fortunately I had the support of my OH (even if I had to put up with being told I was daft all the time) - but you're pretty much on your own so please don't forget that it is important to look after number one (you) too!
Hugs: !_! \./ (( )) [_] { } -
Message 30
Posted by Mabel Bagshawe (U2222589) on Thursday, 16th June 2011
Sunny - as a plan for your Dad develops make sure you make it perfectly clear what you can and cannot do for him, there is a certain degree of reliance by services by someone who looks in any way willing (if not able) to act as carer so they don't have to think about meeting that need.
I presume given your history you have some sort of professional support/contact - also make sure they know what is going on so they can support you (and if they think properly, liaise with your dad's team!) -
Message 31
Posted by Sunny Clouds (U14258963) on Thursday, 16th June 2011
I've had another row with Dad.
Perhaps I should explain that we're not the sort of family to have rows.
But I ended up swearing at him. I shouted that I'm waiting to have surgery and can't have it because I'm picking him up off the expletive floor. That was after a protracted argument about medication.
This follows on from another argument about medication and about him telling the district nurse drawing up his care plan that he doesn't need any help because I'll look after him.
When he was in hospital, we saw a social worker and he seemed to accept that he needed help. Then they discharged him from hospital and he told them that he didn't need any help from anyone because I'd look after him. I told them if they discharged him without care, I'd granny-dump him in casualty, but I couldn't do it.
Or could I? How bad does it have to get before you walk away? I don't know where I go from today. -
Message 32
Posted by Spartacus (U14762542) on Thursday, 16th June 2011
Oh dear, Sunny, it looks like you are now at the end of your tether. Think a few folk did suggest that the "granny dumping" strategy at the hospital would force the issue before he went home, and TBH I saw this work a few times.
However, you couldn't bear to use this strategy. In some ways you are a bit too nice for your own good (IMHO) - what outside care is he now getting?
Something you said seemed to indicate there is some, but I may be wrong. If he is getting any care at all then I would be inclined to contact the provider and ask for a bit more in the meantime while you get everything sorted - and explain why. This can work sometimes - but no guarentee. -
Message 33
Posted by Sunny Clouds (U14258963) on Thursday, 16th June 2011
He refuses to accept any care from elsewhere. He will let professionals (nurses, OTs, physios) into his house to assess him, but apart from accepting some rails from the OT, he has refused to cooperate with getting help. He just keeps telling everyone I'll help him. I think that if I even once got out his blood pressure monitor and checked his pressure, he'd never let the district nurse do it again.
I have wept buckets today. -
Message 34
Posted by carrick-bend (U2288869) on Thursday, 16th June 2011
Sunny, you will have to tell them all, nurses, OTs, physios, GPs, consultants, etc, verbally and in writing if you need to, that you are a concerned next of kin, who wishes to be invoved and informed, but you cannot be solely responsible for your fathers care, because you are waiting for an operation and have mental health issues which makes it both unfair to your father for him to be dependent on just you, and unfair to you to be expected to deal with the constant pressure of being his sole carer, because I bet you usually come over as the intelligent, caring person you always are, and the capable person you are when you're well.
If they know the situation from the start, you won't be pushed to breaking point before the right help is put into place, and it'll be better for your Dad, as you'll be a better advocate for him if you aren't stressed to the limit.
I referred my parents to Social Services 18 months ago - they're a gateway to a lot of help and support to my parents and myself now that things are getting really difficult. -
Message 35
Posted by Sunny Clouds (U14258963) on Thursday, 16th June 2011
A student social worker agreed to bring a team in to assess my father's care needs when he was in hospital, but then it was decided that he wouldn't be assessed. When I objected, I was told that he wasn't entitled to it because his needs weren't critical.
I pointed out that whilst the local authority was within its powers to refuse to provide care if his needs weren't critical, they were not within their powers to refuse to assess his needs and further that it was not possible for them to refuse to assess his needs on the basis that his needs were not critical as they were not in a position legally to declare that his needs were not critical until they had assessed his needs. I simply met a brick wall. I've been told that I can't have my needs as a carer assessed because he hasn't been assessed as needing care.
I think he won't get help until I either walk away intentionally to get him help or stop helping because I have a breakdown. I'm perilously close to the latter. But the thought that he could just lie there on the floor unaided because he's too proud to ask for help or maybe just in denial is something that could haunt me for years if I just ignored a phone call. -
Message 36
Posted by Mermaid the Swishy-Fishy-Tailed Wise One (U10731448) on Thursday, 16th June 2011
Check your email, Sunny.
-
Message 37
Posted by Spartacus (U14762542) on Thursday, 16th June 2011
I could see all that coming, Sunny, as could others.
My mother was a manipulative old xyz and thought my sis and I *should* look after her.
Having realised in my late teens that it was absolutely unreasonable to have me scrubbing floors and doing other housework at the age of 5 because of her difficult pregnacy with my sis (and then hitting me if I got things wrong) I actually began to hate my mother when she beat my sister (who I loved and looked after more than my b!tch of a mother ever did) into submission.
Didn't stop me from *nearly* falling into the trap of becoming her carer after I moved four hundred miles away.
These things are very complex. However, no one person can possibly care for an elderly parent like yours on their own. Face facts Sunny - you simply can't do it.
If enough care and support can be provided for him in his own home so that you can simply go round three or four times a week to check on him and fill any gaps, then fair enough.
Otherwise, I fear you may end up hospitiised with no-one looking after either your dad or the monster.
Sorry to seem harsh - but I'm just concerned (wraps tentacles round in all -enveloping warm comforting cuddle) - hope you don't take anything I've said the wrong way. -
Message 38
Posted by Spartacus (U14762542) on Thursday, 16th June 2011
Well said Carrick.
-
Message 39
Posted by Sunny Clouds (U14258963) on Thursday, 16th June 2011
Gerroff, you're suffocating me! No, not really, I need those cuddles. Poor Monster wasn't too chuffed at me crying over him today and he wouldn't eat until I stroked him while he ate. So leaving him while I went into respite care or hospital would be horrid.
Maybe it'll seem clearer tomorrow after some sleep. -
Message 40
Posted by carrick-bend (U2288869) on Thursday, 16th June 2011
This is something I know you're really good at, sorting out facts and presenting them articulately to the right people, even if this if so close that it makes it hard.
What you say is spot-on, and from the little I know, a student should have been backed up by a properly qualified person, as their decisions aren't necessarily correct, and, in the time since leaving hospital, you've identified your fathers needs as having changed, worsened and, I'd think, become critical, in that, for example, he can't manage his medication and day-to-day care, and his decision-making isn't good anymore.
There are probably more.
If you can urge the GP to get the mental health team to sort out a formal diagnosis of dementia, then he becomes a Vulnerable Adult, and rates more care and protection by social services and the NHS.
I'm just trying to find my way through the system myself; I don't *think* that any of the above facts are incorrect. -
Message 41
Posted by Spartacus (U14762542) on Thursday, 16th June 2011
Merms - please check your email tomorrow afternoon for?'s about another matter from me. Of course, now that you know about the tentacles and multiple heads I wouldn't blame you if you don't!
-
Message 42
Posted by Spartacus (U14762542) on Thursday, 16th June 2011
Sleep well Sunny - it always helps a bit. Same with gowron - she gets quite upset if I am absent too long or am upset and needs lots of re-assurance.
Love to both - dream well, knowing that the loving tentacles are there when you need them. -
Message 43
Posted by savannahlady (U2362903) on Thursday, 16th June 2011
Hi Sunny - just popping in to see how you are doing. I had my say about what I think people should do at this point in the lives of APs (in the light of my own experience) a little while ago so I won't have at it again! What I will say is that the falling down is, I think, quite a big indicator of the progression of dementia and also is a kind of catalyst for things becoming worse. This is certainly the way it was with my mother and several of my friends have had similar experiences with their parents in the past too.
Also I must reinforce the message about not becoming his carer. It might help you to set down clearly in a letter form exactly why you simply cannot do this job - you are very articulate and clear thinking in explaining things and this might be a better way for you. You could then send the letter to every single person, group or organisation that is involved or will be involved in your father's health problems and how he is to be treated and cared for. I would also be inclined to spelll out clearly your personal fears were you to be forced to take this role on because they cannot sort out care for him.
To be honest, it sounds to me as if he really needs residential care - doing all the things you describe him doing mimic that point at which we got my mother into a nursing home, so I would be pushing for that. Though of course it will bring with it issues of funding and so on if he has more that £23000 (I think that is the limit these days) but you will know all about that.
I am sorry you are having to deal with all this given your own fragile mental health (though a lot of the time you sound far saner than me I have to say!
) and I really do hope you get some postive help soon.
Love
Savvie -
Message 44
Posted by Redbookish (U1335018) on Friday, 17th June 2011
Dear Sunny, it sounds as though you feel there's been a sudden descent into chaos. THe suddenness of this seems to be so difficult -- usally, elderly relatives slip into dementia in slower stages, and their families can develop ways of dealing at a gentler pace.
I don't know you IRL, but on here, you always come across as rational, calm, very very intelligent , knowledgeable,& thoughtful. You seem to work very hard at making sure your own chronic illness doesn't show or have an impact on your interactions with others. I watch this and think you are amazing. I'm a coper myself, but have never ever been tested in the way that you are constantly tested.
But ... (and I do hope I don't offend you) sometimes copers are not their own best friends.
It may be exhausting & even humiliating, but I suspect you may have to contemplate, as Carrick has said, being absolutely bluntly clear with your father's medical teams & social care teams about your own situation. I suspect (oh I am making big assumptions, please forgive if I tread on yr toes) that you 'cover up' your own MH situation so much that unless they've also treated you, they do not know that you are anything but strong, fit & healthy.
I hope you find a way to make it very clear that you cannot do what your father is commanding you to do. It may not wash with him, but it may with the social & medical services. If you have a bad manic episode and breakdown, your father cannot be cared for by you.
I think a number of us wrote on Friend of Moose's thread that we had observed how utterly self-centred elderly relatives can become in these situations. No blame attached there -- to me, it seems absolutely natural. I can understand the thinking (although I hope I don't succumb to it myself). But such self-centred desires of desperate people facing their own rapid deterioration cannot rationally be satisfied by their families, or, in your case, just you.
Ah, but the guilt of loving!
Best wishes. -
Message 45
Posted by Sunny Clouds (U14258963) on Friday, 17th June 2011
My brother went to see him today and then came to see me. Apparently Dad told him I was going to move in with him and my brother told him this wasn't possible because of my health, however much I might want to do it. I then went round to Dad's and he was very subdued about it. I feel so horribly guilty. There's a room I could have and I could freegle most of my stuff. I'm just being greedy over my possessions. Do they really matter?
-
Message 46
Posted by Mermaid the Swishy-Fishy-Tailed Wise One (U10731448) on Friday, 17th June 2011
No, you're not being greedy. Possessions are only part of the equation. You need your freedom. You can't live your life for your father and him alone.
You could move in with him, but the toll on you physically and mentally would be far too much. You would have a breakdown and all would be back to square one.
Or your father would become worse and would have to go into residential care. So where would that leave you?
Keep your own freedom and independence.
I'm glad to hear your brother visited. Sounds as if he was quite firm. Maybe if others tell your father that you can't look after him, he'll realise it.
YOU DO NOT NEED TO FEEL GUILTY!
Oh, sorry, did I wake monster?
Off to bed.
Sleep well all. -
Message 47
Posted by carrick-bend (U2288869) on Friday, 17th June 2011
Your possessions may not matter, but your health and well-being do, to you, to your Dad and to Monster.
I'm so glad your brother said what he did.
I think guilt is inevitable to a lot of us over our parents, but I personally don't think your Dads interests would be best served by you making yourself ill trying to do all the care for him. -
Message 48
Posted by superjan3 (U6523409) on Friday, 17th June 2011
I was trying to think what to say to you but WfM and c-b have said it very well. I stayed with my father for the last five months of his life, and in the end I couldn't cope. It has taken the last three years to come to some sort of peace with myself over this.
With peace,
Jan -
Message 49
Posted by Spartacus (U14762542) on Friday, 17th June 2011
You know very well that it is not about your posessons, Sunny. It is about your life. For once your brother has apparently come up trumps. If you move in with your dad then you are a bluddy fool.
Sorry to be blunt - but I nearly destroyed my life through caring for others. You will have no life if you move in with your dad. Period. Sod the blurry posessions - I have never have cared much about those.
I would walk away from my house (which I struggled to buy) if the choice was between that and my freedom, now. I might not have thougth this way when I was younger - but now I'd rather just walk away from everything than not be in control of my own life.
If you are at the beck and call of someone you are caring for then you have little or no control over your life.
Your brother has given you the way out of this to some extent - take it fgs! -
Message 50
Posted by Spartacus (U14762542) on Friday, 17th June 2011
Sorry if last message sounded harsh Sunny - but it's because I care and have been there several times. You will destroy yourself if you move in with your dad. Your brother has apparently been firm. You must be too.
Warm loving tentacles are still available. I am alive at age 55 - my sis (5 years younger) killed herself at age 30. She got too involved with mum, despite my advice, I didn't (though it was difficult not to get sucked in) - I fear for you if you let yourself get sucked into moving in with your dad.
DON'T DO IT!
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