Help please. All forum users welcome.

[Jancis]

Agency carers

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"

 

[danny]

Thank you again everyone. Everything so far taken on board.

 

[TextintheCity]

in an ideal world

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...

 

[Sue J]

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.

 

[clappy]

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!

 

[Helen33]

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.

Love

 

[bethan]

what we need

Hi Danny
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
Beth
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[Sue J]

Hi Danny
based on my experience with my mum ( who to be fair still hasnt had a formal diagnosis)...
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.

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.

-

Thank you Beth for writing what I can't, What you have written are my thoughts exactly. I'm not diagnosed but know what I'm going through. Have just been ++++ worse with an infection, worsening all other symptoms, GP came out - no help yet but I dread and would refuse to go in to hospital, I know it would make me worse. All I ask is for some, any help on a continual basis as I'm deteriorating fast and right now because of my age and other factors they don't realize how bad it is. Yes , they would save thousands and avoid distress to patient, carers, relatives and hospital staff if they provided an acute service.

 

[danny]

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.

 

[bethan]

Hello SueJ
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?

Best wishes

Beth
































J

 

[patilo33]

essential

Essential -Pressure pad that mum steps onto when she gets out of bed. This alerts me wigha buzzer, enabling me to come down stairs and take her to the toilet. Avoids 'puddles' on the living room floor where she sleeps, which i have to clean up in the middle of the night.

 

[hollycat]

Sorry if this exists already.

5 or 10 years before pension age, a LIFE BOOKLET discussing LPA, DWP, health checkups etc.

My hubby and I, for example were unaware that if you don't put on sufficient national insurance contributions, you don't get a full pension.

We live in an INFORMATION AGE and both consider ourselves reasonably intelligent, so why didn't we know about national insurance and its relationship to state pension.

Apply this principal to HEALTH in its broadest sense. This is going to sound really bad but do not mean it in a bad way:

We have got my mother to thank for getting alzheimers for bringing LPA to out attention.

In summary, some form of information leaflet to help the middle aged people know WHAT COULD BE COMING TO US and WHAT YOU CAN DO TO PREPARE FOR IT.

sorry if this exists already but we have never seen one.

Tks

P.S. whilst the latest TV dementia advertising is great for bringing it to the nations attention, it does lean towards BEING OLD. So on hindsight, LIFE LEAFLETS to us in our 20's is perhaps a better idea.

 

[FifiMo]

Danny,

From my point of view, the is a lack of acknowledgement from any of the authorities, about the role of the carer looking after someone with dementia. By this I mean that it is noble to try and meet the aspirations of the patient in terms of staying in their own home for as long as possible but none of this is possible without the needs of the carer being taken into consideration. On the one hand you hear that hospitals are short staffed and cannot cope with a dementia patient on a ward, yet the carer is expected to do this day in and day out single handed. There are no rights which the carer has that allows them to have their own health and welfare protected, nothing to let them have a quality of life, nothing that even lets them have their basic human needs met (eg sleep). If the system is going to improve, then there surely has to be some kind of immediate help available to carers. Help that doesn't have to be preceded by numerous forms and means testing. The severity of dementia and how it affects the patient and the carers needs to be acknowledged formally I think. Only by doing this and giving it the same level of attention as, say, cancer sufferers will the entitlement then follow.

One thing that I have thought about for a while, is if there is to be focus on people being helped to stay in their own home, would it be possible to set up day services by bringing someone to another person's home for the day and putting a carer in there to provide support. Bit like a mini day centre but in someone's home instead? Carers could get the respite they need but the dementia suffers might also gain company from other people and not be living in isolation. Carers could then be allocated to one place and be able to give attention for the entire day rather than running around from pillar to post where a high % of the day is taken up with travelling rather than administering care. With many day centres closing down, this would get around the lack of facilities as it would involve using people's own homes instead. I know this could only be done with people who are still mobile and in the earlier stages of dementia but this is often the point that there are so many hazards that prevent the carers from leaving them at home for any length of time on their own. I know with my mother that she would have loved going to someone else's house for company and we would have had the reassurance that there was a qualified carer there to watch over them. She would also have had not problem with someone coming to visit her in her home either. It could be seen to be a combination of "Big Society" and "Official Support" could it not?

Fiona
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