Had enough today.

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jorgieporgie

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Mar 2, 2016
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Morning Ladies,
Lavender words fail me, so sorry for you and your Mum, things have got to turn around for you soon, big hugs xx
Rosy how are you and your Mum, will to take her for a drive down the illuminations. Its all change here with the weather quiet warm again:confused:
Dutchman welcome, you will be in good company here with any advise you may need or even just a chat or moan.
Hillybilly how are you doing not heard from you for a while. Worrier too hope you have settled down back at home after your lovely holiday.
Molly hugs as ever xx
Harryd have you got the new kitten yet? Photos please x
Marnie I hope all goes smoothly with the equipment arriving. I hope your Mum had a settled night x
 

WORRIER123

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Oct 1, 2015
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Hello ladies
Well still not managed to log in on my pc so still using phone to post.
Oh Lavendar you have the strength of an ox. You must have some positive news soon surely it's so unfair
Marnie bless you and your mum. Same issues with dad - refused to let him home until every item was in place and calls in place. Our agency did do 30min and 1hr slots. Dad needed 2 Carer's and Sometimes the 1hr ones was a Carer for 30mins and the other arrived half way
I do feel for you all
Well still miss dad and still thinking I could have done more for him, taken him out more. The times I worked in the library to get away from the house i could kick myself for not doing more
I know you all feel the same and we did/do all we can but it does pray on your mind
Then the German next door neighbour I try to avoid said ah I haven't seen you for ages. You must really miss your dad and your mum now u have nobody
I could have punched her She then offered a cucumber well nearly told her where to stick it
Still trying to get shot of dad's pull ups and v shaped pillows etc then need a lotto win to do some decorating
Take care all
Xx
 

jorgieporgie

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Mar 2, 2016
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YORKSHIRE
Morning everyone,
Worrier glad your ok and who needs neighbours like that, I would be tempted to put the cucumber where the sun doesn't shine too:eek:
I think we all go through the guilt and feeling we could have done so much more, but I don't think in reality that we could have, not with that illness anyway.
Its time we all stood together and recognise how well we all did and tried to give the best quality of life we could for our loved ones. In my eyes your all wonderful.
Marnie have you got the equipment up and ready yet, hope your Mum is a lot better this morning.
Have a peaceful weekend everyone, its pouring down again here the good days are getting more far and few between. Hugs xxxx
 

Pollytickle

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Nov 15, 2015
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A form came this morning from the nurse who visited back in the week, just confirming the things we talked about really.

One of the things was to register notice of DNR :( When we were visiting Mum's sister who had dementia, Mum often said 'don't let me get like that, will you' & the pain in her eyes was palpable. This is my decision, made by me, completely without discussion... one of my three children will probably agree, as we have often talked about organ donation & things & have very similar views on quality vs quantity of life. The other two will understand why but be devastated to think she won't get any help.

I have done the right thing...haven't I? :(
 

WORRIER123

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Oct 1, 2015
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Yes, Pollytickle, you have. This is do not try to bring back to life someone who has already died. It's difficult sometimes, because when we have to decide this, it makes us feel as though we will be responsible for the person we love's death, but in fact, it literally means they have already died and that no measures will be taken to bring them back. You are right and have made the right decision. Ease the worry in your heart.

You have done the right thing. The doctor explained to me with dementia if I decided not to sign the DNR form then dad would not be a well person and need more care than ever from professionals not me.
Go with your heart. X
 

WORRIER123

Registered User
Oct 1, 2015
1,174
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Strictlys back. Always something dad and I religiously watched so have been a bit teary
I can hear his comments now.
X
 

Pollytickle

Registered User
Nov 15, 2015
759
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Thank you for your support guys; I think it was seeing it written in black & white that gave me a wobble earlier :eek:

I fully support those poor souls who are fighting to have assisted suicide decriminalised, as I can't imagine being forced to live as many do with Locked In Syndrome or Motor Neurone...If you can be arrested for keeping a beloved pet alive when there is no opportunity for recovery then why do humans have to suffer.




It is still very early days Worrier so never apologise for your emotions being all over the place. For weeks - months, if I'm honest - after Dad passed I hated Sundays, especially 4:23 in the afternoon & for the first time since his Service, I actually listened to one of his favourite songs from start to end & remembering the good times it brought.
Watch. Don't watch. Your choice of course, but please don't fall in to the trap of not/doing something because that's what your father would have done. He is at Peace, & I'm sure he wants you to have your favourites, your opinions..your Life to do with as you please.
(((Hugs))) my Friend; big, squidgy, fluffy, caring (((Hugs))) x
 

rosy18

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Jul 23, 2016
1,281
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Blackpool
Worrier and Jorgie read your posts and so felt for you both. Mum and I used to watch Strictly and loved it. Last year Mum seemed to have lost interest and now Mum watches no tv at all as she cannot follow anything and just thinks whatever is on the screen is real.Tonight Mum has just slept through strictly and x factor. I really miss our discussions that we used to have saying who we thought would win and discussing the fab costumes on Strictly. I got quite emotional when they did the tribute to Brucie
Good job I've got the kleenex handy
Saturday night group (((hug)))xxx
 

jorgieporgie

Registered User
Mar 2, 2016
1,982
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YORKSHIRE
Morning Ladies,
Its strange Rosy how little things trigger us off, I got emotional about Brucie too.
Mum was not interested in programmes at the end and like your Mum if she did she only thought it was real and they were coming after her, so sad.
Well its freezing here today and does look like Autumn now. I have been trying to get the grass cut for the past week but the weather just changes from lovely sunshine to hailstone, some freaky weather about.
Hope you all have a peaceful Sunday, group hugs today too ((hugs)) x
 

Philbo

Registered User
Feb 28, 2017
853
0
Kent
Morning Ladies,
Its strange Rosy how little things trigger us off, I got emotional about Brucie too.
Mum was not interested in programmes at the end and like your Mum if she did she only thought it was real and they were coming after her, so sad.
Well its freezing here today and does look like Autumn now. I have been trying to get the grass cut for the past week but the weather just changes from lovely sunshine to hailstone, some freaky weather about.
Hope you all have a peaceful Sunday, group hugs today too ((hugs)) x

Its sunny but nippy here in the South East (any further SE and I'd get my feet wet:D).
In fact I've just put the winter duvet on! With any luck, that'll trigger a mini heatwave?

I hate the transition from summer to winter, not helped by the early arrival of Christmas adverts everywhere, tins of sweets in the supermarket etc. Since my wife got struck by this terrible condition (FTD), I find the festive period very difficult to deal with.

Hugs to everyone - even Santa!:)

Phil
 

Pollytickle

Registered User
Nov 15, 2015
759
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Its sunny but nippy here in the South East (any further SE and I'd get my feet wet:D).


Phil

Well...howdy neighbour :D I'm further west from you but sorry to say I haven't visited The Garden of England often, but then I do have 'orrible 'ay fever :p

You raise an interesting point - Christmas - & other family-centric celebrations. The last two or three Christmas Day lunches have been more like an ordinary week-day, so much so that it's only the awful TV that is different.

How do you guys 'do' things with, and or for, your PWD?
 

Marnie63

Registered User
Dec 26, 2015
1,637
0
Hampshire
AARRGGGHHH I'm so TIRED!!!!! I woke up this morning and just felt ill and as it's Sunday and 'nothing much happens at the weekend' I decided to have a lie in, so didn't get to the hospital until 1030. Mum didn't seem too worse off for it and was sleeping when I got there. I have probably totally overdone the hospital time, but if I don't go, I just worry about what's going on with mum.

Yesterday I got the jitters about having her home (hence my other post) but today I'm adamant she's coming home asap. Mum had been washed and changed by the time I arrived in the morning. Just before dinner they came to 'make mum comfortable' and discovered she'd had a bowel movement. I'm not sure how long she had lain in it from the morning wash until evening, and I let them get on with it behind a closed door, but it seemed wrong she had not been checked in all that time, esp. considering she spent the day in bed as she was so tired today. I guess it's a combination of lack of staff and 'not much happening at the weekend'. The staff who were there today are all very good, there just aren't enough of them to do everything. But will there ever be? Also, one of the 'better' nurses I've got to know noticed that mum's catheter was blocked. Do you think they could find another bag? Wards and cupboards were searched and eventually one was found. No catheter in a hospital? Hmm. She's coming home. I'm not sure when as I still have to do training at our agency offices so that I know how to 'handle' mum, and also waiting for agency to confirm when they will start their multiple visits a day. I am going to really hate those, but have no choice now. At least I will be here all the time to 'supervise'.

So much to get my head round now, and so much worry about will she or won't she improve after the stroke. I hate watching them hoisting her, but I will have to as I will be helping. I guess I'll get used to it in time, if she doesn't regain any mobility.

I still find it strange that some of the hospital staff say she's 'getting better' and that I should be positive about further post stroke improvements in mobility, but some have told me I should accept that she will need to be hoisted forever. At the moment, I don't accept that. The carer and I shut the door and sat mum on the edge of the hospital bed a couple of days ago and I brought a chair in front of her, and she grabbed hold of the arms of the chair and managed to lift herself up onto her feet 4 times before she got a little tired (without our help). So how can they be so sure she will never walk again? And bizarrely they seem to have got into a routine where they hoist her out of bed into a chair, then start her physio, but after all the hoisting, she's too tired! I've told them to get her to swing her legs out of bed and then to transfer her to the chair with a rotunda but no, she has to be hoisted first. I guess it must be hospital rules.

Mum was reassessed by the SLT people and she is now back on normal fluids and food, though I still have to wait until she swallows properly, so she has to be watched. The swallow has improved a lot and I am very thankful for that. At least she can eat. I think a feeding tube was on the cards at one point, but I said no. She is trying to use her left arm more, which is good, but it is still weak. She used to just stare at it, not understanding why it wasn't moving, but at least the brain connection still seems to be there. She is also able to move her legs, lift them a bit, and bend her knees. I have been able to get her dentures back in too, which is a great relief. Initially her face was too crooked to take them. But the mobility. Swallowing is so important too, of course it is, but such a huge difference in quality of life depending on whether she will need to be hoisted permanently, or even be bed bound, or whether she will have the strength to at least transfer to a wheelchair or commode. I remain positive she will.

And I thought listening to nonsense all day was bad!

Hope you are all OK. I hope your fortunes improve Lavender, what a rotten ride you've had with that care home. I'm not up to date I'm afraid, but that was the No. 2 choice wasn't it? What about the other one, the preferred one? I hope your mum is still on the list. Sorry if I've got confused, am so tired!

I've been watching all the ladies on mum's ward, which is an elderly, acute medical/dementia friendly ward, all the different symptoms, all the different behaviours. What a dreadful, dreadful disease. The poor lady mum used to be next to was quiet for a few days, I think they changed her meds, but tonight she was screaming again. Mum was moved from the first side room to the general area as they needed to keep an eye on her (which I agreed with), but after several days and nights next to the poor lady who shouts all day, I went a bit crazy one evening and some helpful staff moved her to another side room, closer to one of the staff desks. How the other ladies next to the noisy one sleep at night, I don't know.
 
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Fullticket

Registered User
Apr 19, 2016
486
0
Chard, Somerset
Well...howdy neighbour :D I'm further west from you but sorry to say I haven't visited The Garden of England often, but then I do have 'orrible 'ay fever :p

You raise an interesting point - Christmas - & other family-centric celebrations. The last two or three Christmas Day lunches have been more like an ordinary week-day, so much so that it's only the awful TV that is different.

How do you guys 'do' things with, and or for, your PWD?

We have tried family dos both at their houses and at ours, but she just gets confused. Anything out of routine is bound to start some wandering, questioning and bad temper. She is also a late riser, which is difficult if there are young people about. Last year OH and I stayed at home with her and had rather well done Xmas lunch at 6pm because she refused to get up earlier. This year I think we will have our lunch at 2ish and she can have something when she emerges. Or if we are lucky there might be a space in the care home for respite. She has no idea about birthdays/Christmas/occasions. She likes QI on the tele and there is a Christmas one on at least once a month and she never queries the date, so I don't think it even registers any more.
 

Marnie63

Registered User
Dec 26, 2015
1,637
0
Hampshire
Yes, Pollytickle, you have. This is do not try to bring back to life someone who has already died. It's difficult sometimes, because when we have to decide this, it makes us feel as though we will be responsible for the person we love's death, but in fact, it literally means they have already died and that no measures will be taken to bring them back. You are right and have made the right decision. Ease the worry in your heart.

DNR has been raised with me many times, but I can't sign one. I've had the 'if she becomes seriously ill' conversation with a few of the doctors on mum's ward at the hospital she's in now and I've told them that if she's showing signs of deteriorating then we will have a discussion, but I have no intention of prolonging her life if there's going to be no quality to it. Before all these meds were available people would just die if they were that ill, and I don't want mum being kept alive for the sake of it to endure more suffering.

In a way I sometimes think it would be easier if she did come down with something like that as I could just let her go and then the suffering and stress would be over. I actually don't feel too bad about that. When she hurts, I hurt, a lot.
 

LadyA

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Oct 19, 2009
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Ireland
DNR has been raised with me many times, but I can't sign one. I've had the 'if she becomes seriously ill' conversation with a few of the doctors on mum's ward at the hospital she's in now and I've told them that if she's showing signs of deteriorating then we will have a discussion, but I have no intention of prolonging her life if there's going to be no quality to it. Before all these meds were available people would just die if they were that ill, and I don't want mum being kept alive for the sake of it to endure more suffering.

In a way I sometimes think it would be easier if she did come down with something like that as I could just let her go and then the suffering and stress would be over. I actually don't feel too bad about that. When she hurts, I hurt, a lot.

Unfortunately, William had never been in hospital, so there was no DNR on his file, although I knew that would be what he would have wanted. When he was ambulanced in from the nursing home, it was morning rush hour, and a journey that normally takes me 15 to 20 minutes, took over 45. Meanwhile, the doctors in the emergency room had been phoning me asking "Where are you? Are you almost here?" When I explained that I was stuck in the traffic, they said "oh. ok. We will see you as soon as you get here then." But meanwhile, in my absence and because there was no DNR note, they had had to make the decision to resuscitate William, because he'd gone into respiratory arrest. DNR was one of the first things we discussed when I got there, and it was put on his file then. Was never needed though, because he went back to his nursing home for end of life care.
 

Marnie63

Registered User
Dec 26, 2015
1,637
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Hampshire
Unfortunately, William had never been in hospital, so there was no DNR on his file, although I knew that would be what he would have wanted. When he was ambulanced in from the nursing home, it was morning rush hour, and a journey that normally takes me 15 to 20 minutes, took over 45. Meanwhile, the doctors in the emergency room had been phoning me asking "Where are you? Are you almost here?" When I explained that I was stuck in the traffic, they said "oh. ok. We will see you as soon as you get here then." But meanwhile, in my absence and because there was no DNR note, they had had to make the decision to resuscitate William, because he'd gone into respiratory arrest. DNR was one of the first things we discussed when I got there, and it was put on his file then. Was never needed though, because he went back to his nursing home for end of life care.

I think we can do as much forward planning and discussion as we like, but when death beckons we'll just have to go with the flow. It's good we have these systems in place though, the thought of lives being prolonged for the very seriously sick, just because they can, does not sit comfortably with me. I suspect that if someone is that poorly the doctors would probably use common sense anyway and not keep trying to revive them?
 

jorgieporgie

Registered User
Mar 2, 2016
1,982
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YORKSHIRE
Morning Ladies,
Hope you all have had a peaceful weekend. Marnie hope your Mum is comfortable and your feeling a lot better.
Autumn as arrived I think, no let up on rain at this end and colder.
I had DNR in place for Mum, then again she was 86 and frail. I was told that ribs could be broken and more pain caused o someone so frail. I wouldn't want Mum to have suffered any more pain and prolong her life without any quality to it. Luckily I never had to make that decision.
Sometimes head as to over rule the heart, no matter how hard it is. But everyone is different and what's right for one isn't always the right thing for someone else.
Big hugs to you all xx
 
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