Support and care system

[Cole_H]

Hi,

I took 13 months of work to care for my mother after she broke her hip, it was soon after that I noticed some memory issues. I then returned to work but I am really struggling with the support and care system.

My mum was diagnosed with mixed dementia - suspected Lewy Bodies and was put on Aricept one year ago. This had an amazing impact but the effects are gradually wearing off.

After diagnosis she had one more meeting with the memory clinic where we were informed the funding was stopped and she would now be in the care of the GP.

The GP didn't even know about Aricept and asked me about it. It feels there is little support, no follow-up and it's down to me to be the bearer of knowledge.

Is this normal?

My mum had a social worker who then said that they had done their role and then left.

The Care system itself has been a real mixed bag - people not turning up, carers giving my mum uncooked food, not knowing how to make a fried egg or putting a plastic microwavable only dish in the oven and then giving my mum cauliflower cheese with melted plastic yum!

It's so awful, I literally have to laugh at how bad it is or I would have some kind of breakdown. Of course there was some great carers, underpaid, given minutes to travel to the other side of the borough for their next visit. I feel for them but at the end of the day I need to feel confident my mum is cared for.

This has been my experience with 3 different agencies, the current one has been an improvement but went down hill in recent months.

I feel totally unsupported, resentful and quite angry - it's difficult enough trying to come to terms with this horrible disease but it's opened the lid for me on system that is lacking in so many ways.

Have I just been terribly unlucky? I know there is no cure but I have read people been given combinations of drugs and other things to help. But I don't feel in a position where any practitioner could advise on this.

I really don't know what I should be doing next.

 

[bemused1]

Sadly for many of us this is the norm. My husband does not have a diagnosis so as far as his mental needs are concerned he doesn't exist. His medical needs are looked after but only because I do the chasing.
With regard to agencies, there are good and bad. You Don't say whether you are funding care yourself but if you are keep changing until you feel your mum is safe and looked after.
We have been lucky with our agency but even there I know with one or two it would not be so good if I wasn't' t here to keep an eye on things.
It is like banging your head against a brick wall and often when you feel least able to cope.
I hope it improves but keep posting, the least we can do is commiserate and who knows, maybe come up with a helpful solution

 

[Cole_H]

Sadly for many of us this is the norm. My husband does not have a diagnosis so as far as his mental needs are concerned he doesn't exist. His medical needs are looked after but only because I do the chasing.
With regard to agencies, there are good and bad. You Don't say whether you are funding care yourself but if you are keep changing until you feel your mum is safe and looked after.
We have been lucky with our agency but even there I know with one or two it would not be so good if I wasn't' t here to keep an eye on things.
It is like banging your head against a brick wall and often when you feel least able to cope.
I hope it improves but keep posting, the least we can do is commiserate and who knows, maybe come up with a helpful solution

Thank you. We do this by direct payment because the council ones were awful and I wanted to take some control - hence an improved service but one that has radically gone down hill.

I also top it up by paying some myself so my mum has more hours to enable me to work.

But work is quite stressful and this whole situation makes it worse. It's not ideal and I don't really want to give up work again. Although I am looking for a new job with less responsibility so life feels manageable. I am not really cut out to be a full time carer, my patience runs very thin. Despite knowing my mum's behaviour is her illness I end up arguing with her. The latest being that someone is stealing her inhalers - an accusation she is pinpointing on the only decent carer she has.

I find it really difficult not to get frustrated.

She was doing so well on the Aricept that perhaps I went into some kind of bubble over the condition and now I'm dealing with the reality again.

 

[Spamar]

I am appalled. If your go doesn't know about aricept, then get one who knows what they're talking about! Every surgery should now have a doctor who knows about dementia. If yours haven't, remind them the guidelines are the to be met.
Otherwise, I feel you've been unlucky with Carers. Keep searching!
I dont think there's one person here who finds it easy. I'm another one to whom caring doesn't come naturally, and I haven't had children to practice on! OH is entering the phase akin to the 'terrible twos' I think.
Good luck! Keep posting, there's a wealth of expertise on here.

 

[Beate]

I have never heard of a memory clinic stopping medication due to budget cuts, that is awful! Is the GP not prescribing it now? He should! The way it is in my borough is that the memory clinic doctor makes the decision about medication every 6 months but sends it on to the GP who is actually the one organising the repeat prescription anyway.

As for social services, they close cases when they feel they have done all there is to do but of course situations change and you always have the right to go back and request another assessment if you feel the help given is inadequate. You have to be pushy, if you don't ask you don't get. The new care act coming in April states that everyone has the right to an assessment, whether they are self-funding or not, so don't let them fob you off. If you are at the end of yout tether, they need to know as ultimately the duty of care lies with them, not you.

Good luck.

 

[marionq]

I have never heard of a memory clinic stopping medication due to budget cuts, that is awful! Is the GP not prescribing it now? He should! The way it is in my borough is that the memory clinic doctor makes the decision about medication every 6 months but sends it on to the GP who is actually the one organising the repeat prescription anyway.



That is how it is done in Scotland too. Wherever you are Cole H the set up is appalling. There should be a care book recording what they have done each day and if they don't do it change the agency.

 

[Cole_H]

They did not cut the funding for the medication just the clinic with the experts who monitor dementia patients and can advise on medication.

They asked if we wanted to sign a petition about it, which I did. We were informed the GP would manage it now but the GP doesn't have a knowledge of dementia.

It's a situation of diagnosis and then goodbye and good-luck

Thank you for all the comments, it's all very exhausting as I'm sure everyone here knows.

 

[Izzy]

As marionq says the system in Scotland is that the Memory Clinic decides if the drug will be useful for the patient and then informs the GP who then prescribes it. If your doctor hasn't heard of Aricept I wonder if this is time for you to seek a change of practice. I would have thought every GP, even if not a dementia specialist, should have heard of the main drugs used to treat dementia.

Would it be possible to clarify with the memory clinic if the drug has been stopped because of a budget cuts or for some other reason? The clinic stopped my husband's medication when his scores on the Mini Mental State Exam were below a certain level - below 10 or 12 I think. This is when they are deemed to be no longer effective. Your local health authority will have guidelines on the prescription of these drugs and you might be able to find these on the internet.

Would it be useful for you to ask for the social work department to do a reassessment of your mum's needs. I asked for this for my mother when she was alive as things had progressed and I felt she needed more care than she was getting.

I also use Direct Payments, although I know that the system is no doubt different here in Scotland. I moved to Direct Payments early on as I felt that the agency system just didn't suit our circumstances. I agree that so much is down to how the carers are. Please don't give up. Is there a local Carer's Association or Alzheimer Society that might help you to advertise for carers or be able to suggest a way forward for you?

 

[Spiro]

My mum had a social worker who then said that they had done their role and then left.

Otherwise known as "not holding onto cases". This is not unusual.

 

[Cole_H]

Sorry maybe I have not been clear, my mum is still on Aricept, the Dementia clinic put her on this a year ago and it was like a wonder drug for us but the effects are now wearing off and we are gradually going back to where we were a year ago.

My issue is that there is no expert to advise as the clinic only sees a person once, they used to see people every few months but due to cuts in funding this role has been handed over to the GP, who in my case is not knowledgeable in dementia.

I have to now do the research and advise the GP. I personally feel there is something wrong with that situation. I am willing and able to do that but it further makes me feel isolated in getting support.

When my father had untreatable cancer a whole process kicked in to support him and my family. That is totally missing with dementia and although perhaps you can't compare, dementia is an illness that deserves care and compassion. I just don't see it or I am looking in the wrong places.

The GP is one issue and then I see carers coming to see my mum, underpaid, untrained, and agencies who seem to be happy to hire anyone willing to do the job. Rather than it being seen as a profession, these people are treated like second class citizens within the health service and that is then reflected in the practice of some.

Obviously there are some great people in the care system, but it's been really difficult. I wouldn't trust some of these people to look after my dog let alone my mother. Coming home to find my mother with a piece of dry bread and uncooked bacon shoved in makes me want to cry my eyes out in despair or finding out that she has been left alone for 5 hours because someone forgot to turn up.

I am new to all this and have found elements of it quite shocking.

 

[Beate]

Would your mother agree to go to a Day Care Centre? It's a godsend for us, my OH loves it, he gets stimulation, interaction, exercise and a hot meal. It's usually accessible through social services, so as I said, get another assessment - there might also be help you hadn't thought about yet such as gadgets via telecare. Has an OT ever assessed her home? Is she in receipt of Attendance Allowance and council tax exemption? Are you in touch with your local Alzheimer's society, Age UK and Carers Centre? They are very good with filling in forms, signposting help or just lending an ear.

With regards to medication, there isn't actually all that much out there and it will eventually stop working. Have a read here: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=147

 

[nitram]

As far as the GP is concerned I would inform them that your mother's condition is deteriorating and suggest that he refers her to the memory clinic for a reassessment. This could well mean that she is prescribed another drug, eg Memantine, and the GP could then carry on prescribing this.

 

[Cole_H]

Would your mother agree to go to a Day Care Centre? It's a godsend for us, my OH loves it, he gets stimulation, interaction, exercise and a hot meal. It's usually accessible through social services, so as I said, get another assessment - there might also be help you hadn't thought about yet such as gadgets via telecare. Has an OT ever assessed her home? Is she in receipt of Attendance Allowance and council tax exemption? Are you in touch with your local Alzheimer's society, Age UK and Carers Centre? They are very good with filling in forms, signposting help or just lending an ear.

With regards to medication, there isn't actually all that much out there and it will eventually stop working. Have a read here:

Thank you. My mum hated the day centre, I sound like the profit of doom , don't mean to be negative. She was fine with it at first but said she was just left in a chair and then the bus that brought her home was then used for a school run so she was left for ages waiting for that to come back.

But we have to move, which is another worry, my mum says she can't wait which is good so I am hoping the new area will open up new services as it has quite an elderly population. I am preparing myself for added confusion in a new house but with her beloved cat and dog still with her and me I am hoping it won't be so bad. At least there is that element of continuity.

As I say once she feels settled I am hoping she will once again try a day centre. It would be great for me as well

Thanks for the link to the medication. I know they stop working and I didn't have high hopes for aricept but the change was literally overnight. After not doing a crossword or knowing what year it was for months and months it all suddenly clicked back in, almost like a fog lifted. You could see it in her eyes as well, like a light had switched back on. Her score on the test also increased dramatically. So I feel it's worth trying other medication if available.

Currently my mums memory isn't so bad, she is still doing crosswords and knows the date and year but it's her confusion, behaviour and mood that is declining back.

 

[halojones]

I am sorry that you and your mum are in such a difficult place, if I was you, I would look for a care home for your mum, then everything would be done for you both,she would be looked after properly, a huge weight would be lifted, and you could see your mum and enjoy your time together, instead of all the battles...It is really interesting to read your experience of the care for your father when he had cancer it is really interesting to know that it is very different and yet they are both devastating illnesses, it is so true, everything is made more difficult for us and it is really stressful ,on top of everything else....If a CH is not an option, what about a private home help??You have been caring so well, but it sounds like it is now too much, and you have to concentrate on your work, some life of your own as well....I wish you all the best xxx

 

[SueShell]

Sadly this is normal. My Mum was handed back to the GP for care from the memory clinic. Also I could tell some stories about carers! Mum did have a really good one who sadly left, but all the others Mum has has are pretty useless, caught one giving mum good wash using face flannel for bottom, yuk, cooking a scrambled egg and branston pickle sandwich, yuk, heating up meal which is still partly frozen.
As for SW, once your initial problem is sorted they close the file and next time you get a different one, no continuity at all, Sue

 

[Cole_H]

Sadly this is normal. My Mum was handed back to the GP for care from the memory clinic. Also I could tell some stories about carers! Mum did have a really good one who sadly left, but all the others Mum has has are pretty useless, caught one giving mum good wash using face flannel for bottom, yuk, cooking a scrambled egg and branston pickle sandwich, yuk, heating up meal which is still partly frozen.
As for SW, once your initial problem is sorted they close the file and next time you get a different one, no continuity at all, Sue

Sorry to hear it's not just me. I don't quite understand why it has to be this way, I guess it must come down to money or many of these care agencies just seeing as an opportunity to make money. One carer gets £7.00 an hour, the agency charges us £18.00 an hour. That just feels so wrong and they are treated badly, recruited badly and the whole thing is a mess.

 

[2jays]

Sorry to hear it's not just me. I don't quite understand why it has to be this way, I guess it must come down to money or many of these care agencies just seeing as an opportunity to make money. One carer gets £7.00 an hour, the agency charges us £18.00 an hour. That just feels so wrong and they are treated badly, recruited badly and the whole thing is a mess.

That's how it is..... Welcome to dementia land and "those who are here to help" .... But don't

Thankfully TP are amazing. Full of people who know, can advise and maybe give you a breathing space for fighting the next battle

Huge Hugs xxx


Sent from my iPhone using Talking Point

 

[cerridwen]

Sadly, your experience is all too common

Hi Cole_H and everyone who has posted
All your experience sounds similar to mine. Dad was first given a care package in his own home when Mum died in June. In September he deteriorated and needed more than the 15 minute medication call. Unfortunately it took EIGHT WEEKS and lots of chasing by me and by Dad's Community Dementia Nurse to get a reassessment. Even now, THREE MONTHS down the line Dad still doesn't have the full care package his dementia nurse has recommended. I made a formal complaint and this has only been partly addressed.
Dad is eligible for full funding but Adult Social Care is virtually bankrupt so he, my husband and I will have to pay for some ourselves. I don't mind that but it is worrying that the 'no money' situation will get worse for everyone going forward, particularly if we get a Conservative Government who have promised even more strict cuts in public sector funding. Also, my experience is that the quality of carers is patchy; SS supply and fund Dad's care agency at the moment and he is supposed to get help with washing, shaving and dressing. When I saw him yesterday after being away to visit my in-laws for four days, he had three days growth of beard and was wearing filthy clothes, the same ones that I encouraged him to change into the day before I left, which were clean then. He'd also had an accident in bed and the carer didn't change the sheets, leaving him in a soiled bed for two nights until I discovered it. It's a disgrace.
I am burned out and sick of fighting to get Dad's basic human rights met. Unfortunately I have stressed about all this too much, rather than be able to laugh at it. I wish I could find a bit a humour in all this and take it a bit more lightly. My advice is - keep on the backs of the care agency and SS. There are some good carers, some poor ones and the Care Manager needs to know what's going on. As for the rest (GP, Dementia Nurse and Social Services) they seem generally disinterested and/or overworked. All you can do is your best.
Cerridwen

 

[Lancashirelady]

Paid carers can be in a very difficult position when it comes to personal care. My Mum has a 40 minute call every morning to get her in the shower and dressed in clean clothes but she flatly refuses the carer's help every day and they are not allowed to make her get washed/showered. The nearest we get is if Mum is not already dressed the carer will distract her while she gets rid of yesterday's dirty clothes and puts out some clean ones. Is it in the care plan for the carers to check if the bed is dirty? If it is then I'd suggest you get snotty with the care company and if it isn't then demand a review of the care plan so that it can be included