Help please. All forum users welcome.

[danny]

Hi everyone. I would be grateful if you could list/comment on what services you would like to see in the community for people with dementia and their carers.If you had a magic wand and funding was not an issue what would you like.

I am piloting a new project which provides support services from diagnosis right through the whole dementia journey in the community.It will not include residential care but care at home,in the community.The aim of this project is to provide seamless care under one umbrella but working in partnership with other organisations.

All suggestions/ideas are very much welcome.

 

[BeckyJan]

My husband would have been home with me for longer if there had been a night time service of carers competent in dementia care and strong enough to deal with his falls during the night.

Without cost issues 7 nights of two reliable carers would have been perfect. Practically 3 or 4 nights would have been wonderful.

 

[lin1]

I would have loved night time carers/sitters

I was lucky to have counseling at home once a month from age uk, It would be nice for everyone to have a similar opportunity, the lady that came to me never knew what she was going to face sometime it was a lovely chat n putting the world to often it was me pouring my heart out

Admiral nurses in each area

Something like a one stop shop, who we could contact for non medical issues

 

[elaine n]

I'd like someone to come and live with me so I don't have to do everything on my own all the time - a pipe dream I know!

 

[Winnie Kjaer]

Hello Danny

I would like sitter I can book at short notice and at length of time to suit me whether it be 1/2 hour or 8 hours with the same sitter.

I would also like someone to just sit with my husband whilst I am doing something else, but someone who actually wishes to be here and who will make an effort to talk to him, read to him and generally treat him like they treat me. He may have his eyes closed all the time but he is still there.

I would like someone to do the odd job for me like painting and decorating or small DIY
jobs. More to come but carer here so I will come back tomorrow.
Good luck x

 

[CYN]

admiral nurses and the same back up as cancer sufferers receive.

 

[Skye]

I agree with Jan, night sitters would be wonderful. The government (Scottish as well as English) is making noises about enabling people to stay at home for as long as they want, and at the same time cutting the services that would make it possibe.

I'd also like everyone to have a care manager, someone who the carer can contact in an emergency, who would have links to both SS and MHT and can summon whatever help is needed. This would have saved John's collapse and given us possibly years more together. I've been pushing for this in our area ever since it happened, sadly it's as far away as ever. The different organisations simply refuse to integrate care.

 

[Grannie G]

I too would have liked a night sitter. Someone who would have been on alert to prevent Dhiren falling out of bed.

 

[danny]

Thanks everyone. This feedback is exactly the sort of thing I am looking for.

The night care seems to be a service needed, do you think an on call service with two carers out and about at night would help.

 

[BeckyJan]

Obviously your suggestion would be better that nothing but does not satisfy a carer's need for sleep.

I did have Carelink to help lift when he fell, but that took 10 mins and after three calls a night, they had to call the ambulance service. There was at least one fall each night plus all the shouting and general agitation - so no rest for someone who was still 'on duty' as a carer again at 6.00 am the following morning.

 

[danny]

I agree Jan,it would not really solve the problem of getting a good nights rest.

 

[Winnie Kjaer]

Care Manager

Oh yes how I agree just one person to deal with instead of so many different ones and everyone passing you from pillar to post

Quote "The different organisations simply refuse to integrate care."

They even acknowledge this themselves but keep promising it will get better. Pigs will fly one day too

I would also like to see that once NHS CHC had been awarded it should not be possible to remove it for terminally ill patient. We all live with the constant worry that they will remove it at the next assessment due to the severe cuts. I know you cannot do anything about that Danny.

I would like all services my husband needs to use to be willing to come to the house and not for us to have to struggle to go to them and usually wait for ages to be seen.

Hospice told me recently at a course that it will soon be possible to receive all services at home including bringing the hospital to patient, as they wish to close more and more hospitals. Can you believe that?

I would like all domiciliary carers to be dementia trained and have a NVQ 2 minimum.
Some of this of course is not what you are actually asking about Danny but you just got me thinking.
Take care x

 

[danny]

Thanks Win. It is so much more useful when planning services to hear what you as carers want,I really appreciate you taking the time to post.Good to hear from you as well

 

[elaine n]

We need the same care and consideration that paid workers get, as in my thread but we don't. The proffessionals seem to think it's ok to go home at the end of a working day or for the weekend and leave us to it. I'm sure the only reason Gary was put on Lorazepam was because they find him difficult to manage in the day hospital not because I'd been telling them for 6 weeks what I'd been trying to cope with

 

[danny]

Just found this, what do you think.


http://www.nytimes.com/2009/06/14/nyregion/14cover.html?_r=2&hp

 

[lin1]

Just found this, what do you think.


http://www.nytimes.com/2009/06/14/nyregion/14cover.html?_r=2&hp

Wonderful, If only we could have something like that, especially if they had , the facilities trained staff, to cope well with those who's sundowning was bad

 

[lin1]

Hi again

for gp's to do bloodtests and arrange a scan whilst we wait for the first appointment with a consultant ect,It can take a few months for that first appoinment, then their is another wait for tests they want done, so to me it makes sence todo at least some of them before

for those who are alone during the day, to have regular
befrienders who are properly trained to spend a few hours every day with the person

for those who have carers coming in, they should have plenty of time, to give medication, bathe, change, give a meal and whatever else is needed
and time for a chat

 

[sanford99]

I could not agree more with the night time care issue.........for a lot of us, daytime is/has been manageable; it is the nighttime that causes/ has caused the most problems.............A night time centre??? What a relief!! I know my mum would love it!!!!!!!

In general though- we could do with SO much, but in the end, I just yearned for carers who would try and take a bit of control and charge rather than letting mum doing it for them; basically more dementia awareness in a nutshell.......(and of course more capability legally,) as we all know about safety and health etc....

We ended up with situation in principle that carer would come in, help mum shower get ready and breakfast; lunch there would be a case of mico meal and veggies ( ordered by me and in freezer) and eve meal was lunch if she had not eaten it as main meal or some sandwiches or soup etc.....or another main ( she always has plenty in!!!)......whatever she wanted but she had to have her 3 meals a day........

So,we organised home visits 3 times a day - morn, lunch and eve-with instuctions such as above.......All that happened was that she would refuse to get up for am call., would have half slice of toast for lunch and not get washed and and have some toast again in evening.............and that went on for ages without any carer flagging it up!!!!!!!!!!! Yes, they would note the form they had been there and mum ' refused food' but no one thought to tell anyone else about it!! No supervisor for example; it was only when I came over ( had been in hospital, assuming mum ok,,,,,,!!!) and looked at the care records that I saw no one had actually made sure she had eaten yor alerted anyone about it....................THat is a a big issue..........You think they safe cause of care visits in place.........Duh......!!!!

 

[Tender Face]

Weekend support

Oooh, Danny, I got all excited when I saw the word ‘seamless’.

Big concern of mine (still) is the bit ‘switch-off’ at weekends. This will be relevant to lots of people caring 24/7 for their partners or relatives too, but I am coming at it from the angle I know best, of course. 5pm Friday the daycentres are closed, the CPN has gone off duty, the carer support worker packed up for weekend etc etc ... many a time something happened at a weekend and I didn’t know whether to hit the ‘panic button’ for an out of hours GP or wait ‘til Monday morning and decide who to ask for help. To have had (even telephone) access to an Admiral Nurse or similar just to report a concern and advise me....

And the thought that families are somehow ‘free’ to pick up the baton at weekends even where care is not at 24/7 stage ... sure some are – but many have other responsibilities like their own young family, or of course family are too far away, so day care (or respite) facilities continuing at weekends would be marvellous. It worries me how many sufferers can become even MORE isolated and less stimulated at weekends than any other time, as well as carers feeling less supported.

Have you discovered the eighth day in the week, BTW?

Will watch this with interest, love Karen, x

 

[Izzy]

Sorry no time to look at the link at the minute but I will. The best thing that has happened to us is Direct Payments. I wish my mum had been able to benefit from it for longer. I think we are mega lucky to have a SW (and also his senior) who understands our needs (including mine). I think more people could benefit from DP if there was some system of managing the related paperwork. I can manage it but if can be time consuming and is quite a responsibility. I'm sure there must be people out there who could benefit but don't have a family member who can manage the paperwork for them.

We don't have admiral nurses and I think this would be a big plus if we did. We had excellent end of life care for mum and had access to Marie Cure nurses overnight. This is essential.