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Old 11-09-13, 06:36 PM   #1
jillb
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Default struggling

Hi all, it's Heth writing on behalf of mum (Jill)... we just thought we'd pop on here to update you about mums situation... Recently things have been getting harder and 5 weeks ago mum wasn't able to swallow any food so has had to just drink the ensure's and fortisip drinks. We are currently waiting to get a date for a PEG to be fitted which is taking forever and making everything really hard as she hasn't been sleeping and hasn't the energy to shower etc. Luckily the carers are helping as much as they can but they are very stretched. Today we saw a lady to sort out a new care plan which should be implimented next week so at least it should take some of the pressure off knowing carers can come and shower and do PEG etc (when we eventually get it.... "emergency" in the NHS doesn't seem to be an emergency by the way no matter how many people are shouting loudly!)

I don't think mum will have the energy to come on here and type anything but we just thought we would like to let you all know whats going on with us and I can always check for messages and show her when I am here.

Obviously it's scary as it is such a big change to have to deal with everything getting so much harder even having to put thickener in tea and water etc. Nothing seems easy and she is worried about how long she can stay living here in extra care housing because they only provide up to a certain level of care and the rest of the time she is on her own in the flat.

Hoping we shall get into a routine when the PEG is finally fitted but in the mean time everything is all up in the air and is making each day a struggle.. it's hard for her to see things getting any better from this perspective.

Love and hugs to all says mum,

Jill and Heth xx
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Old 11-09-13, 07:05 PM   #2
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Default Re: struggling

Lovely to hear from you both, and catch up your news.

Sorry to hear things are in decline Jill and you have the extra stress of waiting for all the support to be put in place to give you the help you need, I really hope they get a move on and give you that peace of mind soon.

Take care both of you. Xxxxxxx
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Old 11-09-13, 08:59 PM   #3
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Good to hear from you, sorry that mum is deteriorating.
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Old 12-09-13, 12:11 PM   #4
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Hi Heth and Jill

So sorry to here you are struggling.

I often thought that it would make life much easier if we could set out a plan well in advance so that as soon as we needed the intervention or support it would be there ready and waiting. It would save so much heart ache and pain having to wait for every little need to be struggled and fought for to be met.

However, the world we live in and the unpredictable/individual nature and progression of HD makes this impossible.

Just makes life so much harder having to fight for and wait for support.

Nice to hear from you both again though and I hope you get some practical and much needed support without too much delay.

Take care

Sue x
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Old 13-09-13, 04:44 PM   #5
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Default Re: struggling

Hi all,

Thanks for lovely messages... I have just shown mum :)

Just a quick update, we still don't have a date for the PEG but it is fairly imminent as we went in for an MSRA swab today which they do before having any op.

The biggest news today is that after a meeting with the care team it has been decided that mums care needs now exceed what they can offer where she lives (which is extra care housing) so we are now on the look out for a care home that actually understands HD (and that has spaces) where mum can settle in!

Seems to be lots of changes to get used to...

Will update if we have news.

Thanks again for messages I know that mum still likes to be connected to you all even though she is not actively on here.

Jill and Heth x
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Old 13-09-13, 06:55 PM   #6
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lots of love I hope things settle down soon and that new home hunting goes smoothly .


Jaq xxxx
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Old 16-09-13, 06:11 PM   #7
jan2012
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Quote:
Originally Posted by jaq View Post
lots of love I hope things settle down soon and that new home hunting goes smoothly .


Jaq xxxx
thinking about you both ,big hug to you both x
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Old 23-09-13, 05:36 PM   #8
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Default Re: struggling

Hia,

Just to say we have finally got a date for the PEG... Monday 7th October to go into hospital to get the op done on Tuesday 8th October... Two weeks today, let the count down begin!

Just hoping we can find a nursing home that we like and feels "homely"... as the first one we saw mum really disliked and was very upset.

We are still waiting for assessments and more meetings... the most annoying thing is having so many different departments all "helping" which basically consists of hundreds of e-mails and letters being sent within the NHS but not a lot actually being done. I'm sure this is very familiar to a lot of others too...

Anyway, hopefully things will improve with the PEG, just thought we would update...

Jill and Heth xx
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Old 23-09-13, 05:53 PM   #9
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Hi Jill and Heth

Really lovely to hear from you both

Good luck with the op and the home hunting

Dolphin
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