General Chat

Thank you all

I know its not going to be easy as have seen from others how stressful it can be even though we love our other halves

sometimes their illness makes it difficult to cope with on a daily basis BUT when we married it was for better and worse AND in sickness and in health and this could mean either of us
I love my hubby no matter what and don't want to lose him so we need each other.
he is my best friend as well as my hubby and my right hand so supporting him now he needs me is a not in question

I will be lost without him so not letting him go without a big fight. I admit I bully him gently to eat a bit more etc to try and spur him on

I absolutely understand Shirley. He is your husband and the illness that takes away so much still leaves a bit of him inside.............I saw the Mum I knew in her smile or the touching of foreheads she did with me.

Gentle bullying is good for him and a sign of how much you love him <3 <3

You sound a truely amazing couple. <3 <3

Shirley, have you seen Sally Magnusson's website about music for dementia sufferers?

She wrote an excellent book about caring for her mother, who had dementia. She was very musical and Sally discovered that even after all other memories appeared to have gone, music still meant something and her mother could still sing along!

The book is called "Where Memories Go" and the website link is below. The idea is to create a personal CD for dementia sufferers, but I haven't looked at it in detail.

http://www.playlistforlife.org.uk/

Michael loves classical music and still listens to it daily .well when he was home he did .

He can get quite emotional listening to it and I seen him him wipe away a tear when something has moved him .

H e is going to be in the lounge so he will be able to listen again although it wont be through his earphones as the lead wont stretch form the music center

Shirley, I think you can extend the headphone leads as we have the tv ones on an extension.

It will be trial and error to begin with but you can adjust things as the days go by and to have your hubby home will be good for both of you

Lizxx

Thanks Liz will get SIL to look into that we ar e looking at a new TV .he was looking at them before he was taken ill .
We have ours wall mounted but now looking at a different bracket so it can be angled for him to see . The old to is still going but a bit heavy so want a slimmer lighter one with a bigger screen

I admire your spirit greatly Shirley and can totally understand where you are coming from.


It may be better to get some wireless headphones - then you won't have the worry of wires trailing everywhere.

Also, despite his illness I hope he gets visits from his parish priest who would bring the sacrament to him. I've often heard it said that patients with this sort of condition can, quite often, recite or sing parts of the service that they once held dear.

xx

He has seen one of the officients from his local Catholic Church several time in hospital and has taken communion .

They know about him at the church anyway and its lined up for a priest to visit him at home ..

Grandaughter went in this lunchtime to feed him as I was having smart meters Installed he was a bit off colour and has a runny nose . Think he is going down with a cold . Wasn't amused on Sunday that one of the nurses who was dealing with his section had an awful cold . Did also wake up this morning too thinking I feel as if there is a cold hovering . I have taken paracetamol .

One senior nurse said they are having trouble finding an agency to take on his care package so he is still waiting to be discharged

Hello Shirley,
As others have said don't forget about yourself. You be no good worn out. Take care.

Anne x

Shirley, I don't know if you would be interested in this book. Rose Elliot, who is a vegetarian cookery book writer's husband has Lewy body dementia and she has written a book called I met a Monk; eight weeks to happiness, freedom and peace. I read a piece by her in a magazine and she explains the frustrations of the disease and the sadness very well. Maybe it will be available in a library.

Thanks Ann I will look out for that book sounds a good read :-D

Thank you x

PS he STILL isn't home getting frustrated now .

They say they can't get a care agency to pick up the care package

There was an news item about Kent and the lack of Care Agencies. They quoted the MM hospital having over 100 'bed blockers' because of that.

Is there a private agency who will do it if their payment is guarenteed?

We are having to pay anyway as hubby has assets just over the limit

His care manger.social services lady said they use agencies that the recipient gets NHS help with payment as well as a couple that they know that the patient is self funding

She did suggest I could look for myself to see if I can find one but I am reluctant as don't know what to look for and what qualifications I should be looking for

Did take a look online and only came up with agencies who offer live in care which we don't need

There's an agency which leaflets around here, further east of you.
Bluebird Care does have a branch nearer you.

When I was looking for my Dad, I looked to see what leaflets were in the surgery waiting room. If the Practice thought they were rubbish, they wouldn't have stocked them. If you ask them they usually know who is good and who is not.

There is a Govt body which does check on care providers, a bit like Ofsted. Not sure if they cover care in the community. One thing to ask is what training their Carers are given. They ought to be offered btecs or similar as well as being taught handling skills.

Thanks Det

I saw that one online . Think I will contact our doctors to see if they can advise

Well at last we have a date . It's next Monday am . The first carers are coming in at 12 noon .

Rushing around now getting things in I hadn't thought of like disposable pants . Was told they will send some with him but till he has been assessed by the incontinence team I will have to supply .

Asked too about the catheter bags and was told I need to contact the community nurse .

They use bigger ones that last a week so hopefully he will have had a new one fitted just before he comes home .

Got all the bed linen , wet wipes , wash bowl and two flannels one for his body and one for the nether region and also an antiseptic wash for people's hands and antiseptic surface wipes

Blimey it's all go and things to think of

It will be lovely to have him home though and hopefully he will keep well for a long time

Had my hair done on Tuesday so don't have to worry about that for six weeks so by then we should be in a routine

Good news, Shirley :-D

As has been said earlier, make sure you arrange time-off for yourself as a regular/weekly event. Unless you have a break even if its to go to the shops, you'll run yourself down. <3

That is good news Shirley and no doubt you will be counting down the days until your husband is back at home with you. It will be a challenging road ahead (I speak from personal experience), but take things one day at a time and accept all the help and advice offered. Sending (((hugs))) for you now. xxx

Thanks all

Yes I have told the carers team I will accept all the help offered

A member of the local Dementia team is coming next Wednesdayy to see how things are and how they can help

Think this is the team that offer 4 hours respite every week so the carer can take a break and do things they may need for themselves