Sorry Another Plea for Help

Crag

Registered User
Jan 3, 2015
76
0
Thanks. The girl from the dementia team has said she'd like to see him out of the hospital environment as soon as possible and the reasons why, which is a lot better than the harassment mum got on Thursday. I just got to keep mum calm that it's not an emergency to get him out, and that it's important we do what's right for dad and the rest of us.

To keep dad occupied in the daytime mum used to take him to garden centres etc to pass time, and I have suggested they go and look at care homes as an activity.
They have attended coffee mornings but that is only once a month, so I have suggested they try the day centre too.
He was a very keen gardener but struggles with basic things these days, but I will try and spend some more time with him planting seeds.
I kind of tried this last year hoping he could educate me for when he did start to struggle but feel I was too late.


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Crag

Registered User
Jan 3, 2015
76
0
Dad's now into his 7th week in hospital, and not looking good at the moment. Reading the Society's fact sheet for the latter stages of Alzheimer's was probably not a good idea.
On Sunday dad looked awful, and ticked all the boxes for the factsheet. He hasn't been drinking or eating much for days, and has a cough. He has since been drip fed, and looked better for it on Monday, but last night was looking terrible again.
Mum picks up at the first sound of improvement, but quickly gets shot down again, and it's a mission trying to keep her chin up.
I'm dreading going up the hospital again later.
 

nae sporran

Registered User
Oct 29, 2014
9,213
0
Bristol
Dad's now into his 7th week in hospital, and not looking good at the moment. Reading the Society's fact sheet for the latter stages of Alzheimer's was probably not a good idea.
On Sunday dad looked awful, and ticked all the boxes for the factsheet. He hasn't been drinking or eating much for days, and has a cough. He has since been drip fed, and looked better for it on Monday, but last night was looking terrible again.
Mum picks up at the first sound of improvement, but quickly gets shot down again, and it's a mission trying to keep her chin up.
I'm dreading going up the hospital again later.

Sorry Crag, I have not been following your dad's progress since your first post. I do know dehydration and infections can make OH worse in her symptoms and there was a hospital visit a few years ago where 24 hours on a drip made a huge difference. Is your dad not staying on his drip longer?
Won't burden you with any more worries if you have read the factsheet and seen the dementia tea. I will send you best wishes and cyber strength for you and for your mum with your hospital visit.
 

Aisling

Registered User
Dec 5, 2015
1,804
0
Ireland
Dad's now into his 7th week in hospital, and not looking good at the moment. Reading the Society's fact sheet for the latter stages of Alzheimer's was probably not a good idea.
On Sunday dad looked awful, and ticked all the boxes for the factsheet. He hasn't been drinking or eating much for days, and has a cough. He has since been drip fed, and looked better for it on Monday, but last night was looking terrible again.
Mum picks up at the first sound of improvement, but quickly gets shot down again, and it's a mission trying to keep her chin up.
I'm dreading going up the hospital again later.

No wonder you are dreading going to the hospital Crag. I don't know the full facts but I think your dad needs to stay in hospital I hate professionals talking about familiar surroundings. Do they not realise that no surroundings are familiar to person with Alyz? I think this is used as an excuse to stress carers into taking person home and that is not ethical or indeed fair. Insist your dad stay in hospital until he has suitable full time care. Talk to SS and insist on it. Your Mum won't be able to cope.

Let us know how you get on please.

Aisling
 

Crag

Registered User
Jan 3, 2015
76
0
I've come home from work to find mum in tears. On her exit from the hospital the doctor has said dad has given up. Getting mum through this is going to be my toughest challenge.
Thanks for your support on here. I've learnt that sometimes that there are no answers to the problems we face as carers. But coming on here helps to ride the many storms we face.



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Kjn

Registered User
Jul 27, 2013
5,833
0
Oh Crag , feel for you. Stay strong , hang in there ! X
 

nae sporran

Registered User
Oct 29, 2014
9,213
0
Bristol
I've come home from work to find mum in tears. On her exit from the hospital the doctor has said dad has given up. Getting mum through this is going to be my toughest challenge.
Thanks for your support on here. I've learnt that sometimes that there are no answers to the problems we face as carers. But coming on here helps to ride the many storms we face.



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Sorry Crag, wish I could say something helpful. Very best wishes and as much cyber strength as possible to you and your mum.
 

dottyd

Registered User
Jan 22, 2011
1,063
0
n.e.
Maybe he's not given up. That implies you have the capacity to make a choice and I don't think your dad has.
Maybe his body and mental state are so dragged down he's unable to fight it.

If they try any more shenanigans like trying to kick him out of hospital before you are all ready as for some input from the mental health team.

Someone as poorly as your dad should not have to pay for care. They should come under the nhs CHC funding.

If they try to tell you any different then ask for a DST meeting.

I recently had one for my mum( also a self funded)

There's an excellent video on this that is well worth watching.
If you must look for a care home you need one with nursing care. Nurses can step I. With medication if your dad becomes agitated. This does not appear to happen so well in a social care home.

You have to take your mums needs into account. If her health would deteriorate by trying to manage your dad pretty much home alone then you have to refuse to accept him awful though that sounds.

It sounds li,e your lovely dad is in a pretty bad way. I so sorry about this but don't let them push you around.

Remember a well managed need is still a need and as such should be managed by nhs CHC ,especially if your dads needs are intense, complex and unpredictable . It's is illegal, ie AGAINST THE LAW, for social care to manage your dad if he meets the above criteria.

So sorry. Good luck with this.
 

AlsoConfused

Registered User
Sep 17, 2010
1,952
0
Like everyone else I think your Dad sounds so poorly he needs to be in hospital and shouldn't be moved anywhere.

Hopefully he will perk up soon and this will be just a nasty, traumatic memory.

If you are looking for a care home for your Dad in the medium-term future it sounds as if he'll need a nursing home with good quality care for both his physical ill-health needs and his dementia. Our family experience is that it can be very hard to find somewhere suitable with a bed. The hospital will have to care for him in the meantime (whether the hospital is a cottage hospital or an acute one).
 

Aisling

Registered User
Dec 5, 2015
1,804
0
Ireland
I've come home from work to find mum in tears. On her exit from the hospital the doctor has said dad has given up. Getting mum through this is going to be my toughest challenge.
Thanks for your support on here. I've learnt that sometimes that there are no answers to the problems we face as carers. But coming on here helps to ride the many storms we face.



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Am so sorry Crag. Give me strength with some professionals. Your dad has not given up, he is very ill. What sort of doctor says things that stupid. Oh one meets them and so sorry you and your mum have this to deal with everything else. I don't know your health system but here a family can refuse to take a very ill person home and then things begin to happens for the patients good.


Please find the strength to keep refusing to bring him home. Your Mum would not be able to cope. It is so hard for you.

Loads of strength and virtual hugs.

Aisling
 

Crag

Registered User
Jan 3, 2015
76
0
Thanks everybody, this place is where I find strength.
I visited Dad last night, and he didn't look good at first, lay on his side against the bed rail. The nurse came in and let me know the next 24 hours are important
I got him playing with my hands, and he was waving them about in a good manner. He normally has a nurse 24/7 with him, but that wasn't the case yesterday. Watching him wipe a tear from his eye was a difficult moment, but have learnt not to show negative emotion to him.
I dropped a drip of water into his mouth from a syringe to see how he reacted, for his mouth to signal 'feed me' and was able to give him at least 6 full syringe loads. He came out with a few words which I couldn't make out, but it sounded positive. With that he turned to lie on his back and looked so much more comfortable, and had a nap. When awake again, I was able to give more water, and was able to go home and give mum better news once he was settled. I don't believe he has given up.
The nurse came in before I left to check blood pressure etc, and she commented he is comfortable. His cough is loosening, and his nose was running so maybe a cold has caused some problems.

It may be tiredness that's causing so much frustration, and bottling things up, and it's starting to hurt now. For the first time I find myself cracking at work I don't understand why the staff haven't been trying to get fluids into dad the way I've been doing. Maybe it's them that have give up and not Dad. His records show that he hasn't always refused food or drink, but because he was asleep at the time and they didn't want to wake him. I don't know what chance he has when this is going on.
I don't know what Mum expects of Dad if he comes through this, and wondering if I'm only prolonging the inevitable. He doesn't know who we are, but I'm sure he sees me as someone he knows.
Dad's always had a lot of pride and I know he wouldn't want to be put in a home. We have found a home for him, but I guess seeing it a couple of weeks ago was when I grieved for my Dad.
I know I'm giving it all my best, for Dad, and for Mum, but cant help wondering whether I'm doing right or wrong. Just totally dreading that I have to go through it all again when I get home. Sorry
 

annie2112

Registered User
Feb 24, 2016
2
0
dont give up,,,

hi there . your situation sounds very similar to mine in almost every way . we have since moved on, with dad makin a good recovery,,, we were told by hospital in Feb 2015 that he wouldnt survive very long,refusing food & drink, lost his swallow reflex at one point, lost a terrible amount of weight,May 2015 he was admitted to a nursing home ,not the best i must admit, although CQC reports said otherwise ! but it was local to my home & work , i went morning & teatime to at least ensure that someone was attempting to offer / encourage food,as the home always seemed to lack staff being around , it is so upsetting & frustrating to watch someone you love refuse even the basics of life, Eventually dad did start to eat & drink, & little by little started to "come back" to us , by Sept 2015 we had another battle to find a more suitable home that could manage the dementia as he was back on his feet and wandering around !! dad is now in a much better place although mum & myself would rather have kept dad at home, you have to consider the impact this terrible condition has on people caring for the person with dementia, its not anyones choice ,,, so keep doing what you feel is right for you all, keep in touch with ss & ask questions,dont let yourselves be forced into a position you know will fail , & above all be kind to yourselves, its not an easy time . take it easy when you can,,,
 

Crag

Registered User
Jan 3, 2015
76
0
Thanks Annie. I don't know where things go from here. It sounded to me that they weren't going to continue with feeding him through a drip if things didn't improve. This is what's getting to me, I got him wanting fluids last night. They've told us he's give up, which wasn't what I saw, yet I had gone there with little hope.
If they are not going to help him, what chance has he got?



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Crag

Registered User
Jan 3, 2015
76
0
Unfortunately Mum's been told Dad's reached the End of Life stage. Not sure what to expect when I go tonight.


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Kjn

Registered User
Jul 27, 2013
5,833
0
Crag , I don't know what to say . We are all still here for you x
 

Crag

Registered User
Jan 3, 2015
76
0
Thanks for the support and the PM's I have received.
Mum is staying with Dad tonight and I will spend some time with him tomorrow so she can try and get some rest.

I'm ok. I think reading other people's experiences with this horrible disease has prepared me for this moment, unfortunately I had not prepared mum so well. My pain is for not knowing how to get her through this. I've been lucky that mum has been there for me too.
 

Aisling

Registered User
Dec 5, 2015
1,804
0
Ireland
Thanks for the support and the PM's I have received.
Mum is staying with Dad tonight and I will spend some time with him tomorrow so she can try and get some rest.

I'm ok. I think reading other people's experiences with this horrible disease has prepared me for this moment, unfortunately I had not prepared mum so well. My pain is for not knowing how to get her through this. I've been lucky that mum has been there for me too.


Sending you love and support Crag.

Aisling
 

angecmc

Registered User
Dec 25, 2012
2,108
0
hertfordshire
Thinking of you and your Mum, she is very lucky to have you, what wonderful support and care you give to both your parents, take care of yourself too hugs xx

Ange
 

Crag

Registered User
Jan 3, 2015
76
0
Thank you everybody. It can feel a very lonely world going through this.
Dad looked comfortable and settled last night. I've seen him a lot worse over the last couple of weeks, but when your told he's at End of Life it feels so much more painful to see him than before.
I was telling Mum he must have been having a cheeky dream the way he was flicking his eyebrows in a mischievous manner.
Mum is a bit more settled too, I have done the phone calls to let relatives, friends, and neighbours know, as she would have struggled with that, but I still feel very helpless.