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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

AIBU to ask you to become a Dementia Friend?

73 replies

lilac26 · 19/02/2015 14:49

I did the Dementia Friends course at college today, and now I'm a Dementia Friend.

It is just about understanding a little bit about dementia, and maybe making a tiny bit of difference to somebody by having that understanding.

The website has lots of information for those wanting to learn more about dementia, a video you can watch, and details of how to have face to face training if that is what you would prefer.

www.dementiafriends.org.uk/

OP posts:

Ludoole · 20/02/2015 03:39

This thread is playing on my mind....
How do you teach someone to be a 'dementia friend' when dementia is so unpredictable?
Our own extended family has walked away so is a dementia friend really going to stay when the situation gets intolerable?
Maybe they will and im just referring to my own situation...
Over 8 years ive been on the front line since dads official diagnosis and i wish i could walk away....

Ludoole · 20/02/2015 03:43

And in those 8 years ive never once understood the disease.....

AntiHop · 20/02/2015 20:04

I'm sorry to hear about all the difficult situations people are describing above. But I really do think this is a great project to help people in the earlier stages of the disease. When my mum was still living in her own home she got to the point where she couldn't remember her pin number. Her local bank would let her take money out over the counter without a pin number. This helped take the pressure off me and other family members she could manage to do her day to day shopping. Is this project helpful for carers when people are in the advanced stages of the illness? No. But that doesn't mean it's not a good project. It helps people in the earlier stages maintain their dignity and independence.

MyNeighbourIsHorrid · 20/02/2015 21:10

The civil service has a 10 minute e-learning module to become a dementia friend. It IS patronising bullshit that teaches you nothing about dementia. I have cared for 3 elderly relatives with dementia, each affected in a completely different way, all heartbreaking. It's not just a question of helping people count their change in a shop.
How can 10 minutes on line qualify anybody to do or to be anything?

DustyCropHopper · 20/02/2015 22:24

My nan had vascular dementia, it is an awful disease that steals your loved one day by day. It wasn't just get memories that she lost but also gradually all her skills, she forgot how to walk, how to get the food from her plate to her mouth. I have no idea what dementia friends is but anything that heightens awareness is surely a good thing.

KatieKaye · 20/02/2015 22:38

My DF had dementia and I saw him go through paranoid delusions, lose his inhibitions first in terms of language (swearing etc) and then doing things like starting to undress in public. gradually he lost the ability to speak and to swallow liquids, so drinks had to be thickened.
DM was diagnosed with dementia late last year. I'd hoped to bring her o live with me as I still feel guilty about DF going into a home, but he was not safe to be left alone with elderly DM because his dementia meant he could fly off the handle very easily in the earlier stages.
DM was in hospital at the time and the nurses saw what DM was like and at a case meeting made it very clear to me that I would not be able to cope with her and go out and work full time and also that DM would not be safe, even with carers coming in 4 times a day. So next week she will move into a home.
And I feel crap about it all.
Dementia took my DF away years before he died. And now it's taking my DM too.
It is a horrible disease and one that needs more funding. Many elderly people in hospital with chest or heart ailments or results of falls also have dementia and simply do not receive the specialist care they need. DM has been in hospital since September - a junior doctor tried to discharge her home after 2 weeks! (She was diagnosed with pneumonia 2 days later. And a pulmonary embolism about a week after that). So it is not just general awareness that needs to be raised, but also that of some medical professionals. I'm glad that DM was in a special elderly persons unit by the time she was diagnosed with staff that had made an active choice to work with people with dementia.

Rosa · 21/02/2015 13:00

I am re posting as although the idea is there I just feel it is a waste of money unless these ' friends' actually do anything. Do people with Dementia walk round with a label saying I have dementia please help me ' Nope . Also anyone who does this course is probably a decent human anyway who would have paitence with the elderly in the first place.
People with dementia need HELP , Practical HELP , the carers need HELP , they need support , they need a break , they need HELP . Is it there ? - NO

MissPenelopeLumawoo2 · 21/02/2015 14:49

So it is not just general awareness that needs to be raised, but also that of some medical professionals

Utterly agree, Katie. My DM was sent by her GP for a brain scan, the type where you have to just lie still for half an hour, when she was suffering from severe dementia and could not stay still. It took ages to do the scan and she got very distressed and fidgety- and for what- for us to be told she was in advanced stages of dementia! No shit! We cared for her every day, we could have told them that. Given that there was no treatment/cure anyway, what use was this knowledge? None whatsoever. Even at the hospital, when she arrived for her appointment the staff asked her for her name & DOB, would not let me answer for her at first. It was only when she stared blankly in to space for a couple of minutes and they had patronised her by talking to her as if she were a toddler, that they let me confirm her details for her.

I am sorry, I am going to stop now as this is only the tip of the iceberg and I could rant all day about dementia care , or lack of, but I will say I am sure that you are well meaning OP but it seems like a crock of bollocks to me.

AWholeLottaNosy · 21/02/2015 21:21

Ten minutes e learning? What a load of bollocks! I think all of us who have lived with dementia are all saying the same thing, it's the carers that need real support. This dementia friends thing is just cosmetic and doesn't tackle the real issues as that requires resources which are just not there at the moment. To all of you dealing with this horrendous condition, I sympathise with you all. You need so much patience and compassion and sometimes just a bloody break from it all. Please don't feel bad if you reach a point where you can't cope with it anymore. I certainly did and it was either him or me. My dad is now in a home and although it's not ideal, he's relatively content. Well fed, safe, with people who are trained to deal with this and have the support of each other. Being a carer is one of the hardest jobs in the world, unseen, unappreciated and under paid. Don't take it on to the cost of your own life as no one will thank you for it.

EdSheeran · 21/02/2015 21:48

Penelope we cannot make assumptions about people nor take their families word for it. We have to make every effort to communicate with individuals before we assume they are not able to do something.

needahandholdplease · 21/02/2015 22:14

By befriending the person with dementia you are in turn helping the carer by enabling them to pop to the shops or drs appt or out for a coffee.

Also I'm going to be blunt and say carers need to stop being martyrs. They need to engage with every service going from the alzheimers society to age uk to social services to mental health teams. In the early stages chances are it'll be the charitable sector supporting you but do not ever let it get to crisis point. It's so much harder to get support then than it is to prevent the crisis from happening. Stop wearing the 'its my mum and my duty' badge. Bollocks. It's hard bloody work and not everyone can do it. Your pride and insistence of doing the job yourself is detrimental to their care. Say early that you're not prepared to do x y and Z. Ask for help. Be prepared to pay for home help such as a cleaner and shopping service. if you get those services in early then when the time comes for care chances are they'll be more willing to accept it.

needahandholdplease · 21/02/2015 22:17

Also the funding will only appear for services if the demand is there. If you carry on doing it all and making yourself Ill in the process you won't count as a statistic for funding.

Also be blunt with your family member. Don't let them become reliant on you, maintain their independence and don't let them take advantage of your good nature. It is hard. Very very hard. But you need to look after yourself as a carer as dementia path is long and very very difficult.

MissPenelopeLumawoo2 · 21/02/2015 22:37

Penelope we cannot make assumptions about people nor take their families word for it. We have to make every effort to communicate with individuals before we assume they are not able to do something.

Ok Ed, that's great. So that explains why when my DM was in hospital she had food plonked in front of her, then taken away uneaten a while later, even though we had told the hospital staff that she could not eat without help? Because the nurses had to give her a chance to show them she could not eat, rather than take our word for it? It was her family that ended up coming in every day to feed her anyway, as no one had any time to help her in the hospital.

Same with the tablets- the staff knew she would not swallow tablets, she would just put them under her tongue and spit them out later, but it took days before the doctors would prescribe them in liquid form.

Its all very well to say you can't take someone's word for it, and an effort must be made to communicate with the patient, but how many missed meals/spat out tablets does it take before people realise? It would have been a lot quicker to listen to the people who know her best in the first place.

AWholeLottaNosy · 21/02/2015 22:39

'Carers need to stop being martyrs'. How fucking patronising is that? Have you ever been a carer? I tried everything I could to get support and IT WASNT THERE!!! I was ringing up social services, being continually fobbed off, being told I was on their emergency waiting list. For months! And nothing happened. The support just isn't there. There was nothing more I could have done to have tried to get support which was why I ended up having to find a care home for my dad as I couldn't do it any more. You have absolutely NO understanding of how hard it is to care for someone in this situation or what it means to have to take the heart breaking decision to put your own parent into a home.

needahandholdplease · 21/02/2015 22:40

Yes I have

Social services isn't the be all and end all of care provision you know.

MissPenelopeLumawoo2 · 21/02/2015 22:41

You have absolutely NO understanding of how hard it is to care for someone in this situation or what it means to have to take the heart breaking decision to put your own parent into a home.

Amen to that. Agree with you 100%.

EdSheeran · 21/02/2015 22:47

Sorry Penelope but I was responding to your specific scenario, not excusing poor care. I think you've misunderstood me.

engeika · 21/02/2015 22:58

Dealing with this myself. Ceasre - I could have written your post. That is the stage I am at. My mother won't have help in the house or carers in and insists that she can cope. She can just about - and I don't have the authority help her. The insurance company would NOT speak to me when she had her bag stolen. The hospital would not speak to me. The bank wouldn't speak to me when she was the victim of a credit card cars fishing scam..

I know it will get worse. and I don't know what to do. I have finally persuaded the doctor to see her - and I came in with her - and the lovely doc persuaded her to give permission for him to talk to me about medical matters so that will help.

needahandholdplease Please don't talk about being a martyr - that is unhelpful and offensive. I can see that you make some good points and getting help in early can be good - but it depends on your own financial situation, the form dementia takes, who else in the family is around etc.

CocktailQueen · 21/02/2015 23:05

Engeika - you need power of attorney! Do you have it? That would solve your problems.

engeika · 21/02/2015 23:12

Thanks. Unfortunately no - my mum won't agree to it. I can't force her into a car and drive her to the lawyer. She believes that she is fine - just a bit forgetful. Previously I haven't had other family onside as Mum is such a convincing confabulator that they believe her stories that she went shopping twice, went to church, to a play, to lunch with a friend - when she hasn't left the sofa.

Finally we had a severe problem two weeks ago, (she left taps running and there was quite a flood), and other family members have realised how bad she is so we are going to try again.

CocktailQueen · 21/02/2015 23:15

Oh, I'm sorry :( it's very hard. Good luck. Xx

ChristyMooreRocks · 21/02/2015 23:17

Oh, someone on my FB keeps sharing this 'Dementia Friends' thing and how she is taking part and how wonderful it is, with friends commenting on how great she is for doing it.

I assumed it involved actual volunteering, being assigned a 'buddy' or something, someone that you would go and visit regularly and help?

That's not what it is?!

AWholeLottaNosy · 21/02/2015 23:22

Engeika - I know it's hard but please try to get POA now because once she in deemed no longer mentally capable of consenting to it, it's much more difficult and expensive to obtain. I know people don't want to have to think about it ( much like they don't want to think about of funeral expenses ) but it will make it so much easier for you to sort out her affairs if you can do this. Sorry if this is something you have already tried, I know how hard it is to deal with this.

Ludoole · 21/02/2015 23:35

Needahandhold
Other services you say???
Alzheimers society sent someone to sit with him. Dad formed a bit of a bond then 6 weeks in we were told it would cost £20 an hour from now on.
I only get £6.50 an hour through direct payments...
Yes you can get other services involved but in our experience theres no consistency. Different people cause dad major distress. We have no choice to be "martyrs" as you put it as he needs familiarity, and having different faces around for short periods of time adds to his confusion.

engeika · 21/02/2015 23:49

I am not sure that we are not already past that point. I am going to try to get one of my brothers to help. (The other sibling doesn't live near us and thinks mum is fine. Of course she is if you only phone once a fortnight - she's great!)

There was a very heartfelt thread on here recently from someone struggling with this illness ans suddenly lots of people said that they had been caring for elderly parents too.

The caring is generally not talked about. Dealing with adult tantrums or incontinence is not like dealing with a toddler. There is shame and mistrust from people. If an elderly parent makes inappropriate comments or gets angry the reaction is very strong and explanations don't work. Caring is sometimes treated as "martyrdom" which is why the previous post was upsetting. We are human - what else do we do?

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