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
Daughter and former carer
I could have hindsight beforehand, oh what a difference it would make
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......!!!!
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
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.
'The best things in life are nearest: Breath in your nostrils, light in your eyes, flowers at your feet, duties at your hand, the path of right just before you. Then do not grasp at the stars, but do life's plain, common work as it comes, certain that daily duties and daily bread are the sweetest things in life.'
Robert Louis Stevenson
When my dad was receiving care at home I would have wished that the agency carers were experienced in nursing - Dad had dozens of different carers over a period of about 3 years. There were two carers who were fantastic but many had no clue and my mother had to show them over and over again how to help her tend to dad's needs. Admittedly they were severe. The agency carers ranged from 18 - 80 years old! The 80 yr old had been a nurse all her life and was fantastic but not strong enough to handle my dad on her own unless she had suitable back up. My dad needed two carers to help my mum but it was very rare that two came - well not at the same time as supposed to.
Well Danny you did say "if we had a magic wand and funding was not an issue"
"The best of life is further on, hidden from our eye beyond the hills of time" - Sir William Mulock.
Thank you again everyone. Everything so far taken on board.
`As we let our own light shine we unconsciously give other people permission to do the same`
One person to take responsibility for liaison between services. I've been 'signposted' so many times I'm back where I started and I still don't know what more I can do to help my mother. I have a responsible job, but this is like an extra job.
Inter borough agreements to allow people to vacate properties to move nearer relatives. I applied to my local authority sheltered housing to accept my mother from her home local authority - refused. If she lived nearer I could help more. I can't afford to move and wouldn't be eligible for council housing. I have to work full time and the commute would be too long.
If Local authorities organise care, it should be appropriate for Alzheimers or dementia sufferers (same one or two carers). Due to a change in contracts, there are now different carers coming in each week making it more confusing for mum. The pay is very poor and some carers struggle to read and write. I don't feel able to let them remind mum to take tablets so I ring her every day.
Ensure user friendly Baths and showers installed in all houseespeciallys for elders ! They are not designed for elders or people with mobility difficulties and she lives in elderly housing! My mother can bath herself (when she remembers) but needs a carer to help her get in and out of the bath. She can't operate the horrible clunky bath chair that was installed so they took it away. If a user friendly bath was installed she could bath herself.
Statutory carers leave. I would really like someone to be able to take her to all the usual health appointments etc. or to be able to get carers leave to do it myself instead of having to 'box and cox'.
That's for starters...
In the absence of Admiral nurses a CPN assigned via the GP to the person showing signs of dementia, diagnosed or undiagnosed. They should be the keyworker, monitoring the situation and liasing with the friends/relatives and GP.
A bit slow right now, will come back again to this thread.
Last edited by Sue J; 15-08-2011 at 10:21 PM. Reason: Addition
Where do I begin!
As carer of my Mother who lives alone, and working full time myself, there is so much that could be of help.
Day care availablilty should be increased. She currently has two days a week and we are unlikely to get any more. The rest of the time is spent walking aimlessly around shops buying things she doesn't need/want or know how to use!
As all ready mentioned one service to deal with all. I have spent so much time (most of my A/L entitlement) on wasted appointments or acheiving nothing. Mum is not too far away from needing a care home, or someone living full time with her. Sorting this out and looking after her and her house, leaves little time to even look or stop for breath.
If you are self funding my experience is that you are left alone to get on with it. Our local authority are just not interested. In February my Mum was assessed, and it was dedcided that they would book us one of there respite beds so myself and SIL could have a break. Albeit Mum would have to pay.
They have had to cancel all 3 of the bookings because the care homes won't take her. She's too plausible, and presents well and would not go voluntarily, as ' everyone in there is bonkers'. She is very aware of zimmer frames and disability and makes it known to the point of embarassment. Without a DLO in place we are stumped. Social services are not happy to do this.
All of the care homes said ' we really feel for you '! Catch 22 - need a break but can't get one!
MAGIC WAND says.........places where you can drop these mobile, well presented people to be looked after and entertained ...bit like playschool with sleepovers. She'd love a boyfriend and could probably find one at playschool! The in between of 'independent and full time care home' is what is lacking.
All the literature says there is so much out there to help, but the reality of filling forms, having assessments/meetings and dealing with so many different departments who so often contradict each other, means like us you get nothing only 'brick walls'.
I'm not having such a good day about all this AD, what it brings, and feel quite resentful to all the politicians that have not walked this path. When oh when will our Elderly and Dementia patients become a priority for this government, and not be the life changing burden, it feels like to their families.
I have cared relentlessly for 4 years so far, and there's a long way to go! I don't mean to sound uncaring because that is far from the case, but I am becoming resentful
Hope you are all having a better day!
I have only just seen this thread Angela. I would like to see Hospice standard care from the beginning of diagnosis through to end of life. I find it hard that such high quality of care for the person with the disease and the carer can be offered but only in order for the person to 'die' in peace rather than to 'live' in peace. Because Alan died of cancer rather than dementia, I am given weekly open-ended specialist counselling, free of charge, which is excellent. I need this to deal with the trauma that I experienced as a carer. I find it hard to accept that this can only be given if the person being cared for has cancer.
Night care ought to be an essential part of any care package.
Wife and Carer
based on my experience with my mum ( who to be fair still hasnt had a formal diagnosis)...
Mum lived a 7 hour drive from me and developed repeated episodes of delirium where she degenerated very quickly to hallucinations , physical aggression and psychotic behaviour. In between times she was well and basically self caring. Episodes were usually as a result of a UTI, but sometimes constipation and sometimes no clear pointer to the cause of infection. She had 9 emergency admissions and around 6 months in hospital over 20 months.
I knew when mum was getting ill by talking to her of an evening on the phone ( always worse), or her friends would ring to say she was becoming strange again. Each time would ring the GP, get antibiotics and arrange for a big package of homecare, but couldnt get any healthcare round her apart from a visit by community matron who would tell me she was fine when he visited . Until a few days or a week later when she would be hallucinating and he would insist on an emergency admission.
If mum could have had someone to stay with her for a while until the antibiotics had kicked in to oversee her eating and drinking and meds and generally nurse and reassure her i know she would have avoided all those admissions and saved the NHS a fortune. I would go up for as long as poss each time but with a full time job and a single parent with school age children there was only so much I could do.
Also, when admitted had to wait for hours and then again on the assessment ward before being moved to another ward, all of which resulted in total meltdown and violence as she was so confused and disorientated and terrified that by the time she got to the ward she would act as if fighting for her life, refuse all meds fluids and food cos people trying to kill her, so would be sedated. The stress of these episodes on her physically and on me mentally were indescribable, especially when she ended up on a general medical ward where the staff were clueless about delirium.
Rant over. hope it helps
Thank you again to every one for replying to this thread.
I just want to add that there is a purpose to this thread,there are people who use the forum responsible for service provision and hopefully,some of these suggestions will be looked into in more detail.
I have already put together a proposal for out of hours services down here from this thread.
`As we let our own light shine we unconsciously give other people permission to do the same`
So sorry to hear what you are coping with. It must be terribly difficult being aware of what is happening to you.
My mum would deny to everyone that there was anything wrong -or make up an implausable story as to why she was behaving so strangely. Never remembered what had happened prior to and on admission so again would make up her own explaination , like 'I fell so had to go into hospital' ( she actually fell on the ward the day they stopped the sedation and broke her arm)or one time told everyone she had diabetes because a friend of hers had been diagnosed - even had the nurses believing her on that occasion!
A fair few people on other threads have mentioned how much having direct payments from Social Services has helped them, and I would have gone down this route with mum if I had been nearer. You choose the personal assisstants and have the same one or two so they get to know you really well and can spot any changes in behaviour, help more when you need it etc. You might find it worth finding out more although you may need someone else to do the employing of them and paperwork?