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Getting somewhere?

CAL Y

Registered User
Jul 17, 2021
120
0
After a month of broken nights I’m hoping that things are finally looking up.
My husband, Dementia and Terminal Cancer .took a very sudden downturn last week.
After a mix up , thinking the Hospice nurses would be looking after him ,I now find that it will be the district nurses..
I was in a state of collapse over the weekend and even, at one point threatened to walk away and leave him in their hands even though I know I couldn’t do that.

Looks like they are getting their act together.🤞. It has got to the stage where he is unable to help me lift him up.
At the moment they have given me morning and evening carers who obviously turn up just after I’ve seen him to the toilet.Not moaning ,that can’t be helped. and last night I had an overnight sitter and another one scheduled for tonight.
I manage to get 6 hours uninterrupted sleep. Could have done with twelve.
MH was up 4 times in the night again so I have to be grateful for small mercies. At least I slept through it.
My sister arrives today for a weeks stay.
Im hoping that with a couple of nights decent sleep and a few days out with my sister (brother in law watching out for hubby) I might be able to recharge my batteries.
 

canary

Registered User
Feb 25, 2014
16,172
0
South coast
I think its so bad that it gets to the stage of feeling you will walk out before anything happens.
Can you get the number of carer calls to 4 each day? It might give you a bit more time
 

CAL Y

Registered User
Jul 17, 2021
120
0
I think its so bad that it gets to the stage of feeling you will walk out before anything happens.
Can you get the number of carer calls to 4 each day? It might give you a bit more time
@canary. I’m working on getting more calls. I have a feeling it won’t be for very long anyway but I could do with it.
After my six hours sleep last night. I have been on the go for 3 hours and feel like I’m back where I started.
 

Duggies-girl

Registered User
Sep 6, 2017
2,916
0
@CAL Y I know it is not a lot of help at this late stage but your husband is likely to qualify for CHC The hospice applied for dad and it was immediately granted because he was terminal. I don't know what dads carers cost but it was just something that I didn't have to even think about.

We had district nurses and they were not very helpful apart from the one that turned up immediately after dad died along with his morning carer. They took over and cleaned dad up, they also put him in some clean clothes and made him look nice by combing his hair. I was very grateful for that. She also phoned dads GP who came a bit later.

I knew that dad was dying but I didn't expect him to go then, I thought he had another couple of days but he deteriorated very quickly that morning so we called the district nurse who didn't take long but she missed him by a minute. A dreadful time but a huge relief for me that it had ended and probably for dad too.

I hope that you get the help that you need and it is good that your sister is coming to stay. You need someone with you all the time from now on.

Thinking of you.
 

CAL Y

Registered User
Jul 17, 2021
120
0
@Duggies-girl . Thank you for your reply. I’m aware of the CHC but don’t think he will be around long enough for the paperwork to go through.
At the moment we seem to be very lucky with our community nurses. I’ve had lots of visits and phone calls and they seem to be very well organised 🤞🤞
Its a tricky one at the moment as far as round the clock care is concerned.
There is no facility for respite at the local hospice. It’s a very small unit and has to cover most of Devon.
If he only has a week or so to live…very possible….I want him to stay at home.
I have family staying at the moment. We have just poured the Aperol Spritz.
I will,see how things go before they go home at the weekend.
 

RosettaT

Registered User
Sep 9, 2018
654
0
Mid Lincs
When my mum was diagnosed with terminal cancer, we immediately got help from St Barnabas and given Marie Curie contact for over night care. We didn't even have to ask, not sure who contacted them but it was put in place without us having to do anything. The only thing that could have been a problem but wasn't in the end, is we didn't know until 4pm if Marie Curie could cover that night. As it happened we only needed them for 2 nights before we lost mum.
 

CAL Y

Registered User
Jul 17, 2021
120
0
Well. Why am I so naive. Just when you think you are going to get help, yet again they let you down.
My promised overnight sitter for last night did not materialise.
After a whole 6 hours respite the night before last ,I spent most of last night trying to lift my husband back into bed. When I wasn’t doing that, I was carrying him to the toilet. Half an hour each time plus another 15 minutes cleaning up the bathroom because we didn’t make it in time..
The district nurses have been wonderful, apart from one. There is alway one isn’t there. She has been reported.
It turns out that the office wallers had decided that they were treating a case of dementia. My husband has terminal liver cancer but it seems that as soon as they see the word dementia that throws the ball into my court. “You have to pay for carers etc”
I have, today kicked up a massive fuss about this but I am again expected to spend tonight the same way as I did last night. I have decided that I’m not even going to go to bed as it seems that I disturb him.

I had one of the “more important “ people from the urgent response team here this afternoon Again, silly me thought, Oh I’m getting somewhere but she was more interested in taking photos of DNR and medication documents etc and half of the time couldn’t even look me in the face.Just another box ticker. I walked out of the room, my sister more or less told her hoW useless she had been. My brother in law said, are you going to look at him. Reluctantly she did so. Absolutely bloody useless.
My family and I have seen 6 members of our family die from cancer ,dementia and so on in the last 5 years. We know what we are talking about and we know that my husband has very little time left.
Why oh why do they have to make it so hard.
I ended up telling this woman, I will look after him , don’t you trouble yourself but we have a serious safety issue going on here. I have osteoporosis, so if he falls on me you could be looking at two people with broken hips. Not that they give a damn.
 

canary

Registered User
Feb 25, 2014
16,172
0
South coast
Please speak to your GP tomorrow.
They can organise a "just in case box" of end of life medication so that it is all on hand, if you dont have one already, and the GP can apply for CHC very quickly and organise carers and overnight care.
If your husband falls tonight - call the paramedics to get him up again
(((((((((((((((((((((((((((hugs))))))))))))))))))))
 

Duggies-girl

Registered User
Sep 6, 2017
2,916
0
That all sounds really appalling @caly What are they there for. Thank heavens you have your sister and brother in law but you need trained people for this. I had my husband to help me but getting dad off that bed was frightening, even with being able to lower the bed, dad was a dead weight and I was scared to death that dad might fall and that would have killed him. It's not good enough.

I hope you get more help tomorrow and as for the CHC that was all done with no input from me and very quickly.