At the end of my tether...

Amy in the US

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Feb 28, 2015
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Bunpoots, I hope your dad doesn't s more comfortable and being well looked after and that you feel you are able to get some rest. All best wishes to you. And some (((((((hugs))))))), of course!
 

Bunpoots

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Apr 1, 2016
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Thanks @Amy in the US

Dad looked comfortable and was tapping his fingers on the side of an empty mug when we arrived. He was pleased to see us but not making much sense. His bed can be seen from the nurses station.

If he has another bleed he might be moved to a larger hospital about 15 miles away. I hope not. I'm hoping he'll make a full recovery. There's still talk of getting him back home but if this latest episode has left him unable to walk I'm not sure what to do. It'll take two carers to move him which will be very expensive.

Probably time to consider a nursing home.
 

BLIP

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Jul 22, 2018
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Thanks @Amy in the US

Dad looked comfortable and was tapping his fingers on the side of an empty mug when we arrived. He was pleased to see us but not making much sense. His bed can be seen from the nurses station.

If he has another bleed he might be moved to a larger hospital about 15 miles away. I hope not. I'm hoping he'll make a full recovery. There's still talk of getting him back home but if this latest episode has left him unable to walk I'm not sure what to do. It'll take two carers to move him which will be very expensive.

Probably time to consider a nursing home.


Best to be prepared for all eventualities in these cases isn't it Bunpoots ? I hope your dad is comfortable and doesn't upset you or himself if it comes to the move to a nursing home, if it does. Keep calm and count to 10 billion lol.
 

Bunpoots

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Apr 1, 2016
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Best to be prepared for all eventualities in these cases isn't it Bunpoots ? I hope your dad is comfortable and doesn't upset you or himself if it comes to the move to a nursing home, if it does. Keep calm and count to 10 billion lol.

Thanks BLIP. I'll start counting...
 

BLIP

Registered User
Jul 22, 2018
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Ah, I thought it might be something like that @BLIP
Thats a SW with very little understanding of dementia and the delusions that go with it. Im so sorry. I would go to the meeting to make sure that your side of the story is heard, even if that SW is present.

Very difficult to sit in a room with a bully S.W. and listen to his BS. He believes everything M.I.L. says and obviously has no or little experience with dementia, if he did he would know that DP lie through their teeth to everyone including themselves ! I have shed so many tears this last week because hubby is so upset and hurt that the SW has branded him an abuser in front of police who were on the side of the SW. I know they both have a duty of care but hubby was treated like a criminal. Hubby is in dreadful pain with his leg, hence amputation and suffers from depression but is given no chance to defend himself ! He is a clergyman and has worked in geriatric hospitals so he's used to OAP'S with mental problems and has performed the last rites on more than he can count. The police even told him he shouldn't be wearing his clerical collar and crucifix the damn cheek. He worked hard for it and lives his life accordingly which makes the situation even harder to deal with. End of rant for now. Take care of yourself canary x
 

Cazzita

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May 12, 2018
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Hello @Cazzita , nice to 'meet' you :)
I don't think anyone can know exactly what's ahead, as everyone is so different. I had incidents with my mum like the one you describe, a good ten years prior to her diagnosis. Between these events she was able to function reasonably well. It was only when this and worse were constant that I felt urgently in need of help.
I hope this is of some reassurance to you - but of course, as I say, everyone is different....
All the best to you.
Lindy xx

Hello @Lindy50,
Nice to 'meet' you too! Yes, I guess that everyone is different but it does look like people with FTD, which mum has, will end up being doubly incontinent. I really can't stand the thought of it and already I am cleaning up after mum has wet herself all over the hall floor which she does a few times a week because she 'can't be bothered' to make it in time! So frustrating and of course she has absolutely no inclination to clear it up herself and no embarrassment either. So sad that people have to get like this - in a state that would have horrified them a year ago. Anyway, will make the 'best' of the situation and try not to fret too much about what lies ahead... xx
 
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Cazzita

Registered User
May 12, 2018
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Very difficult to sit in a room with a bully S.W. and listen to his BS. He believes everything M.I.L. says and obviously has no or little experience with dementia, if he did he would know that DP lie through their teeth to everyone including themselves ! I have shed so many tears this last week because hubby is so upset and hurt that the SW has branded him an abuser in front of police who were on the side of the SW. I know they both have a duty of care but hubby was treated like a criminal. Hubby is in dreadful pain with his leg, hence amputation and suffers from depression but is given no chance to defend himself ! He is a clergyman and has worked in geriatric hospitals so he's used to OAP'S with mental problems and has performed the last rites on more than he can count. The police even told him he shouldn't be wearing his clerical collar and crucifix the damn cheek. He worked hard for it and lives his life accordingly which makes the situation even harder to deal with. End of rant for now. Take care of yourself canary x

Oh this is awful to hear! Poor man. @BLIP, I hope things imrove for him quickly and that people in charge can be more sympathetic. No excuses for this kind of cold attitude towards anyone :(
 

BLIP

Registered User
Jul 22, 2018
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Oh this is awful to hear! Poor man. @BLIP, I hope things imrove for him quickly and that people in charge can be more sympathetic. No excuses for this kind of cold attitude towards anyone :(

Thank you for caring it means a lot.
 

Bunpoots

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Apr 1, 2016
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Nottinghamshire
Ten years ago my dad found himself in a similar position @BLIP. He had been getting mum out of her wheelchair by holding her arms and getting her to stand up. She used to bruise very easily and fingerprint bruises on the arms can be caused by abuse. SS were ready to put her in a home until one of the nurses asked dad to demonstrate how he helped mum to stand up...if that nurse hadn't had a bit of common sense my dad would have been labelled an abuser!!

I hope someone who understands that everything PWD say cannot be relied upon comes along soon.

It's awful how he's being treated. You just need the right person.
 

Bunpoots

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Apr 1, 2016
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@Cazzita . It was dad's incontinence that broke me. Especially the mind-boggling lack of understanding that he was incontinent!!! I think dementia, incontinence and denial are an impossible combination. I had to get professional carer's in at that point.

Definitely get in touch with the incontinence clinic. It took a few months from referral to actually getting help for dad and what started as a trickle soon became a flood...
 

Rolypoly

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Jan 15, 2018
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Very difficult to sit in a room with a bully S.W. and listen to his BS. He believes everything M.I.L. says and obviously has no or little experience with dementia, if he did he would know that DP lie through their teeth to everyone including themselves ! I have shed so many tears this last week because hubby is so upset and hurt that the SW has branded him an abuser in front of police who were on the side of the SW. I know they both have a duty of care but hubby was treated like a criminal. Hubby is in dreadful pain with his leg, hence amputation and suffers from depression but is given no chance to defend himself ! He is a clergyman and has worked in geriatric hospitals so he's used to OAP'S with mental problems and has performed the last rites on more than he can count. The police even told him he shouldn't be wearing his clerical collar and crucifix the damn cheek. He worked hard for it and lives his life accordingly which makes the situation even harder to deal with. End of rant for now. Take care of yourself canary x


Beggars belief :mad:.No wonder your OH is so upset, what a dreadful thing to say. Make sure you go to the meeting to get your side across. It might help to jot down the points you want to get across so you don’t forget in the stress. Good luck.
 

Rolypoly

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Jan 15, 2018
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Sorry to hear about your dads fall and subsequent hospitalisation. Let’s hope he can soon play that game of badminton and visit the theatre (as long as it's not the one my mum went to :D).

Re care home, could you put him in one after discharge to see how it goes, on the pretence of getting well, hospital said so etc. He’s never going to like it when it happens because there’s nothing wrong with him :rolleyes:, but at least you can blame the drs and hospital rather than him blaming you.
 

Bunpoots

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Apr 1, 2016
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Sorry to hear about your dads fall and subsequent hospitalisation. Let’s hope he can soon play that game of badminton and visit the theatre (as long as it's not the one my mum went to :D).

Re care home, could you put him in one after discharge to see how it goes, on the pretence of getting well, hospital said so etc. He’s never going to like it when it happens because there’s nothing wrong with him :rolleyes:, but at least you can blame the drs and hospital rather than him blaming you.

We could block the theatre isles for hours if we went together :D:D

I'll try the "doctor says" thing with my dad. But of course dad thinks the doctor's an idiot - after all, there's nothing wrong with dad :rolleyes:
 

Amy in the US

Registered User
Feb 28, 2015
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USA
Bunpoots, sorry about the typos in my last post. I must remember to proofread more carefully. The predictive text and autocorrect make for some interesting syntax!

I was trying to say, I hope he is receiving good care, and I know having someone in hospital is stressful, especially when it's someone with dementia.

The anosognosia doesn't help. When my mother had her fractured kneecap and surgery and hospital and rehab stay last year, it was driven home to me how the wretched anosognosia works, as she could not grasp she had hurt herself. If I told her she had fallen and hurt her knee, she'd accept my explanation in the moment, but seconds later we would be back to why am I here, there's nothing wrong with me, what is this thing on my leg? We thought her wound would never heal as she was always removing the dressings and picking at her sutures! And of course, since there was "nothing" wrong, she was also getting up and walking unassisted. That rehab place was good, but they didn't understand dementia.

Sorry, I digress. The lack of insight is hard and combined with memory loss, even harder.

I think it would be sensible to look at some care homes, just in case. Much better to do it to your own schedule and be able to take some time, than to have to select one in a hurry.

Nothing about this is easy and I'm sorry.
 

Bunpoots

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Apr 1, 2016
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Nottinghamshire
It's ok @Amy in the US - I understood what you were trying to say, Inspite of auto-correct's efforts to undermine you :D

I remember you talking about your mum's knee. It amazes me how pain doesn't seem to register!!

Dad seems settled at the moment. But I've been googling "bleed on the brain" and the prognosis doesn't sound good. I hope someone speaks to me before they decide on any treatment. Dad has already made a directive that he doesn't want any life prolonging treatments. He decided this 2 years ago when he refused heart surgery. I suppose he would feel the same about brain surgery if he had a clue what was going on. But I don't trust these doctors and dad looks so much younger than his 89 years that they tend to get a bit carried away.

I don't want dad's life extending when the quality is already poor and I don't want him to die under the surgeons knife.

Hope you're keeping well and your mother isn't too busy unpacking everything in her room :rolleyes:
 

vicx

Registered User
Sep 11, 2017
22
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Hello vicx and welcome to Talking Point. I can't tell you how much comfort this site has given me!

My dad has been through phases of telling the neighbours he's not seen a soul for weeks and the neighbours have put him right cos they've seen us visiting every day!

I know just what you mean about losing yourself to caring, I am just finding myself again. It creeps up, and takes over, this caring lark. And trying to deal with an illogical and ungrateful needy person is soul-sucking!

As you've read my thread you'll realise that I've very recently brought in professional carers. I didn't ask dad if he wanted or needed them - he'd have said he was fine. I introduced them by stealth. They visited, did an assessment (which dad wasn't pleased about as he thinks there's nothing wrong with him) and started visiting and helping gradually. I'm not sure dad's even noticed that his routine has changed. He's certainly happier now - and so am I. I should have done it months ago!!

I don't think my dad should really live alone either, but he hates noise, not really a people person either so I think the care home will be a last resort. He likes his own space.

You're lucky to be able to share with your sister but you still sound very stressed! Could you persuade your mum to go to daycare (you could call it a club or a craft group) to give you both a day off?

You are entitled to a care assessment for your mum and carers assessments for you and your sister. If you contact SS you may be pleasantly surprised at what they can offer.
 

vicx

Registered User
Sep 11, 2017
22
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I apologise for previous post i just can't get the hang of this 'quoting'..
Bunpoots thank you, when i hear other peoples experience with this disease i am reminded that i am so not alone. I have asked SS for an assessment but that was 5 weeks ago and still nothing, apparently waiting lists. I didn't think hitting crisis was the goal, rather getting in before it occurred.
I am fortunate to have sisters, particularly quite knowledgeable ones. However the everyday care comes to me and one other sister, and i think (selfishly) when we put so much time and effort to be told she never sees us. We arranged day care in the guise of a voluntary role, but that went off boil, as she'd prefer to be with us all day everyday. I know i sound selfish, and definitely feel it, but we've lost any normality in our lives. I had to leave my job because of this, I've thought about going back to work and waiting for the crisis to happen, but all that would happen is she would then become reliant on my other sister who works from home.
In the last 5 days myself, hubbie and 3 of my 4 children have had a nasty vomiting virus, how on earth she didn't get it i'll never know she was with us everyday. I was obviously ill and every few minutes we had the conversation "are you ill, you look dreadful"? I know its going to get worse and we are stopping the possibility of any crisis happening, by doing as we are told. We are still told she's in charge, but when she falls out with us it only lasts 5 minutes sadly.