any suggestions please

daylily

Hi.
Reading all your lovely replies has brought tears to my eyes.
It's been such a long long time since anyone cared about ME.
Now I feel really selfish saying that but blow it I think I''m entitled to feel down once in a while.

DD, I'll let you know about Crossroads lady (I'm getting really nervous now, silly isn't it :?:

Thanks again everyone
xxxxxxxxxxxx

dreamdaisy

Don't feel selfish: you are under a great strain and not well yourself. I suspect the lion's share of the care and attention goes to your husband as he is so palpably affected. I am sure the Corssroads lady will be pleasant and kind, make her a cuppa and tell her you like her jacket or somesuch - that breaks the ice, makes her feel good and that will get everything off to a good start! DD

daylily

dreamdaisy wrote:

Don't feel selfish: you are under a great strain and not well yourself. I suspect the lion's share of the care and attention goes to your husband as he is so palpably affected. I am sure the Corssroads lady will be pleasant and kind, make her a cuppa and tell her you like her jacket or somesuch - that breaks the ice, makes her feel good and that will get everything off to a good start! DD

I do that sometimes in shops etc, if I see someone with nice hair, clothes anything I'll tell them. It really makes peoples day.
There were two ladies obviously from a coach trip, all done up to the nines, and they looked brilliant and were ever so chuffed when I said so.

hileena111

Hi,
Just read your post this morning....Not a lot that DD hasnt said. You should be getting help....for him and for yourself as a carer....carers even when perfectly well themselves tend to get ignored but you need more help than the normal one if you dont ...do you have a carers association Locally?
I'll see if I can find an addy for you
Let us know how the assessment with hubby goes

Love
Hileena

tjt6768

Hi Daylily, is there anything social services can help you with? There must be some help you could get..
Really hope you get some.. Are there no family members that could take him while you stay at home and get some rest? Sounds like you really deserve it. It can be so horrible how much a stroke can change someone. A good friend of ours had one and he was always such a lovely, caring patient bloke, now he is down-right selfish and mean... On the other hand, my Grandma has had two strokes and has now got a sense of humour, something she really did lack before, and she no longer needs glasses.. :? Strokes are a very strange thing indeed..
Sorry for wittering, keep us up to date with things..

Tony

tkachev

daylily wrote:

Hi.
Reading all your lovely replies has brought tears to my eyes.
It's been such a long long time since anyone cared about ME.
Now I feel really selfish saying that but blow it I think I''m entitled to feel down once in a while.

DD, I'll let you know about Crossroads lady (I'm getting really nervous now, silly isn't it :?:

Thanks again everyone
xxxxxxxxxxxx

Hi Daylily,
I have crossroads carers to babysit (2 autistic children). They are fantastic and I never have to worry about leaving them in their care.Without crossroads I could not find a reliable carer at a reasonable cost. I always had to leave them with their Nanny but she finds it difficult at times. And the children are in the safety of their home with all their familiar toys.
They usually wash up and tidy up for me as they know I struggle. I love them!

Elizabeth

dreamdaisy

I hope it went OK daylily and that you are not too tired now. These things can take it out of one! Have a good evening, thinking of you. Oh - I had a thought about the missing millions: not hidden in your husband's wheelchair? Rolled up in the tube work or something? He has probably been sitting on it all this time, it's stuffed in his cushion! DD

daylily

Hi everyone.
Lady from Crossroads came-was here 2 and half hours.
Said there was no problem getting someone to take hubby around car boots for me on a Sunday. Had a nice fella called Pete lined up, he does a lot of work for them and he's a big strapping fella so he'll be able to manage hubby.
Then she said 'the cost will come out of hubby's DLA'
£39 for 3 hours min could be more with weekend work @ time and 1/4.
I said sorry can't afford that, hubby's DLA helps pay the rent on our privately owned flat.
This apparently is because I self-referred myself to Crossroads and the sw was not involved. :roll:
She said she'd contact sw and try to get her to come and do an assessment and then social will pay. Will not know until tomorrow what she has sorted out.
That's it so far. Will let you all know the next instalment :!:

dreamdaisy

That is a step in the right direction, daylily. You know that help is there and I think it would be a good thing for Social Services to become involved: you BOTH need help now and that is why they are there. I am glad she was nice tho - it does help! Take care. DD

cythna

daylily wrote:

dreamdaisy wrote:

This sounds like a plan, and we like plans on here! I think that their coming to see him is a good thing: they will have much experience in this field and will know how to handle him. Perhaps he may not like it at first but when he gets to know someone things might be a little better. YOU need support too, daylily, and a break from the carer's role. Do you have any help from social services re the physical care of him? I am guessing that there is a fair amount of lifting etc which must be so difficult for you. Is your GP aware of how much he has deteriorated lately? DD

We don't have any help as yet- getting to the point where we're going to have to have help. I sit on the floor to wash his bottom half then shuffle to the bath and pull myself up with the built-in handles. ( he cannot get in the bath and has a thorough wash down)
Just written to the Doc for advice-no reply yet.
Do you know if you have to pay for someone to help out or not :?:

Bit worried about money with the cuts coming in

Hi Daylily

I think you need to contact Social Services about care. I get care, and it's means tested. I pay £4 a day for twenty minutes of care-help with washing, putting on socks, bed making. This is the maximun abount you pay here, it works our at £16 for the hour. Most people don't pay the full amount, though everyone has to pay something.

About the washing:you need a shower. Grants are available from the Local Authority to put in a walk in shower. Again it is means tested, but I had mine done, and my contribution was only £400. It is a legal obligation on the authorities part to help you. If tou have an Anchor Trust near you they are very helpful.
Anchor Staying Put -

http://www.anchor.org.uk/Pages/home.aspx

They would arrange the works for you, organise an Occupational Therapist to assess your situation, help you with the grant application etc. You could also ring the hospital and ask for an OT to come and assess you.

Hope you get the help, you obviously need it. Good luck

Susan

daylily

hi Susan.
I'm afraid I cannot get a walk-in shower as we live in a rented flat and the landlady has only had the above bath shower put in before we took the place on. It took the letting agent about 6 weeks to talk her into central heating :!:
She's not mean just very elderly and she has lived here for 60 years and she doesn't like change, plus she has only been out of hospital 2 weeks after a stroke.
I'd hate to start bothering her now.
(Landlady lives in the house above our basement flat)
Now I've got the ball rolling with the Crossroads /sw worker things should start moving now hopefully.
It sounds daft but it never dawned on me that sitting on the floor washing hubby would qualify me for anything. I suppose it's just been the gradual slide downhill- never thought anything about it just did it.
Thanks for help-much appreciated
anne

sharmaine

Hi

It's not easy what you're having to deal with. My mum tried to cope with my step-dad's alzeimers and all the complications that caused and ended up quite poorly as a result. Take any help you can get.

Sharmaine
XX

daylily wrote:

Nearly 4 years ago the stroke and he's getting progressively worse. He definately wasn't this bad even 6 months ago.
The assessment is from Crossroads, a charity that helps out at home. They either sit with people or take them out I think. I'll find out tomorrow if they can help. I have heard they're very good.
I'll let you know DD what they say.
Hubby's just going to have to lump it or like it if they can take him out, I'm shattered. :!:

hileena111

Hi
Well you are a bit further forward and when social services get involved you never know what you might find you can have r are entitled to.....Keep us updated

Love
Hileena

speedalong

Hi Daylily,

it is hard when you have to say no to helping someone who depends on you do something nice - however, you are both dependent on you being as well and fit as possible and that means adequate rest for you too.

Look up some more car boots that you can do with him in the near future. With a bit of luck Crossroads will be able to escort him.

Do you get benefits for him? Do you get carers allowance etc - if not, you need to get some advice about all this - CAB are best.

Would he be too lethal on a scooter?! You could set it to very slow speed. Just thinking of you struggling to push 18 stone - hard enough for someone without arther.

Speedy

cythna

daylily wrote:

hi Susan.
I'm afraid I cannot get a walk-in shower as we live in a rented flat and the landlady has only had the above bath shower put in before we took the place on. It took the letting agent about 6 weeks to talk her into central heating :!:
She's not mean just very elderly and she has lived here for 60 years and she doesn't like change, plus she has only been out of hospital 2 weeks after a stroke.
I'd hate to start bothering her now.
(Landlady lives in the house above our basement flat)
Now I've got the ball rolling with the Crossroads /sw worker things should start moving now hopefully.
It sounds daft but it never dawned on me that sitting on the floor washing hubby would qualify me for anything. I suppose it's just been the gradual slide downhill- never thought anything about it just did it.
Thanks for help-much appreciated
anne

That does make it difficult, and is a clear demonstration imo (sorry Government!) why we need social housing at a reasonable rent-the council would put in a shower quickly and free! I'm glad you are getting some help-of course sitting on the floor washing your husband means you need help! Although I went two years of no baths, just sink washes, until I actually mentioned it to someone, so I'm no example :oops:

I hope it goes well for you.

Susan

dreamdaisy

Morning daylily, I hope all is well with you today. I really chime with what you said about adjusting - that you don't realise how bad things have become until someone spots it! Anyway, I hope you and Mr Daylily have a better day today. Thinking of you. DD

daylily

Good Morning all. It's blowing a gale here :!:
DD No dosh yet. I took all cushions off the sofa the other day just to check it wasn't stuffed in them-no luck :!:
Good job hubby doesn't rememberisn't it :?: :!:
Susan I am so relieved that it's not just me that has been a bit silly not realising when we need help. Things just become normal don't they :?:
Speedalong I get CA for hubby, CAB sorted it all out when he was still in hospital. Don't know what I would have done without them. The scooter is not possible as hubby has lost most of his sight with the stroke. He still keeps asking when he can drive his car :!: which we loaned our son. :!:

I'm sending hugs to all you lovely people who replied and indeed all the lovely people on the forum. God bless you all.
((((((((((((((()))))))))))))))

tkachev

daylily wrote:

Hi everyone.
Lady from Crossroads came-was here 2 and half hours.
Said there was no problem getting someone to take hubby around car boots for me on a Sunday. Had a nice fella called Pete lined up, he does a lot of work for them and he's a big strapping fella so he'll be able to manage hubby.
Then she said 'the cost will come out of hubby's DLA'
£39 for 3 hours min could be more with weekend work @ time and 1/4.
I said sorry can't afford that, hubby's DLA helps pay the rent on our privately owned flat.
This apparently is because I self-referred myself to Crossroads and the sw was not involved. :roll:
She said she'd contact sw and try to get her to come and do an assessment and then social will pay. Will not know until tomorrow what she has sorted out.
That's it so far. Will let you all know the next instalment :!:

Yes you need to be referred by social services.I have R.A so they assessed me for care needs. I get given some money to pay for these services Daylily.
You would have to go on a waiting list for crossroads and the waiting is long. Crossroads is about £11 per hour.
How about getting hubby out here-and there rather than nothing at all?Just a couple of hours per month?
Do contact social services as you obviously should be getting help as both of you have health issues.

Elizabeth

daylily

Good news :!:
SW doesn't need to come and do an assessment (she did one when we moved to Wales 2 years ago) and we got the help on Sundays taking hubby out :!: :!: :!: :!: No charge to us
Starting this Sunday a guy called Pete is doing the honours with hubby, I asked if it was OK if I go with them the first time and they said sure.
Hubby understandably wasn't too keen going out with a stanger so I'll trot along at first. At least I can show the man how I angle hubby so he can see things with his restricted sight.
Hubby's got something called bi-lateral humonimous haemianopia ( not too sure about the spelling). Basically he has lost the vision on the left-hand side and a bit at the bottom of both eyes.
Pete will come once a fortnight for 3 hours- just think, a lovely long read in the bath without interruptions Bliss :!:
I'll let you all know what Pete is like and how it's gone on Sunday
take care all
xxxxx

c4thyg

Daylily,

I've only just seen your thread and I have to say that you are amazing. What you are coping with and doing for your hubby, despite having arthur says everything I need to know that you are a wonderful person.

I'm so pleased to hear that you have now got Crossroads. I was involved with them as a child as my brother is autistic and they were always great with us. More than 20 years on I'm still in touch with our carer and she has become a family friend.

I hope that with the help of social services you can find all the help that you need. In the meantime, enjoy some time for you. I'm sure your hubby will be fine once he has met the carer and they get to know each other.

Cath xx

daylily

Thank you Cath from the bottom of my heart. I have been soooo
lonely these last 3 years.
xxxxx

c4thyg

daylily wrote:

Thank you Cath from the bottom of my heart. I have been soooo
lonely these last 3 years.
xxxxx

Daylily, I know a bit about lonely as well living alone with a toddler. I hope now you have some help you can find places to go where you can see people and feel part of the community again. Why not start with a trip to the hairdressers? My mother always told me that looking good was the start to feeling good and she was right. And you really deserve to pamper yourself.

Cathy xx

dreamdaisy

Oh my word. How absolutely, gloriously, stupendously wonderful that is. Crying. DD

ironic

Hi Anne,

Absolutely brilliant news! Reserve your best fluffy towel and get the bubble bath squirreled away for your well deserved me time. Now promise a week on Sunday you will keep the full 3 hours for yourself. No sneaking off to do housework. Ok?

Lv, Ix

cebeem

Fantastic news ...and no more than you well deserve.
The carer will I guess have experience and your husband after a few weeks will probably look forwards to his trips and visits....leaving you to get refreshed and have me time!

The eye condition is common and stroke patients neglect their bad side hence why medical staff will recommend you put things he will need more to that side , in the hope some retraining of the neural pathways may take place, and the patient is more aware of where the central line in their body is of the line of gravity and balance.

Their perception is also changed and for example if they are asked to put the numbers of a clock onto a circle ...they often put all of the numbers to the 1 side of it ...their good side! this little exercise can often help show family members understand how the patients way of thinking has changed.(although it may show in your husband).

The carers input is going to make such a difference to you both...I am so pleased you have been given this support...my very best wishes.