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Talk to Red & Yellow Care about enjoying time with family or friends with dementia: £100 + tickets to be won NOW CLOSED

(51 Posts)
AnnMumsnet (MNHQ) Thu 01-May-14 10:27:19

Red & Yellow Care - an independent healthcare company who specialise in dementia and offer both diagnosis and post-diagnostic care and support - want to hear from Mumsnetters about how to share enjoyable moments with loved ones who have dementia.

A report recently published by Red & Yellow Care in association with Alzheimer's Society found that 43% of UK adults don't think it is possible to live a good life with dementia.

Dr Nori Graham, Medical Director of Red & Yellow Care said: "This must change fast. It is this belief that gets in the way of people seeking help, getting formally diagnosed, and ultimately receiving the care they need to live well. We must reinforce the reality that a good life is possible for everyone – including those with dementia."

Red & Yellow Care now would like MNers to think about this topic and share their thoughts on this thread - add your comment and you'll be entered into a prize draw where one MNer will win a £100 John Lewis voucher plus two tickets for the Alzheimer's Show in London (16-17 May, 2-day ticket but not travel included) - worth 64.

Living with dementia or caring for a relative or friend isn't always easy, but likewise most of us know that it doesn't mean that you can't share enjoyable moments together. Red & Yellow Care would like you to share on this thread how you enjoy spending time with loved ones who have dementia. Has the way you spend time together changed, or not at all? Have you changed the activities you do together, or the frequency? Perhaps the topics of your conversations have shifted slightly? What do you enjoy most now? What new attitudes, if any, have you adopted overall?

If you don't have a loved one who is affected by dementia, how do you think you'd cope with this diagnosis in a close relation? Where do you think you'd look for support?

Whatever your views on dementia support, they’d like to hear them.

Thanks,
MNHQ

missorinoco Thu 01-May-14 13:27:22

At the moment, for us, it's about making the memories whilst we still can. My relative is in the early stages of dementia, so I am keen for us to spend more time together whilst so my children can know her for who she is.

It also showed her she still had a role after her diagnosis when she felt berefit. The children carried on as usual "Can you read to me?" "Will you sit with me and watch television?" "Will you play Lego with me?" <Advised sit next to the child and watch him play - he will be happy with that.> At the end of a short stay she was tired but clearly happier.

Readjust what you do. Excursions need to be slower, and less involved. I also think twice about when she visits. If the children are full on from a birthday I would suggest coming for the day but not staying over.

But it's early days.

Fishandjam Thu 01-May-14 14:06:20

My mother is in the later stages of dementia. What's made it easier and more enjoyable to spend time with her is to adopt "compassionate communication" - for example, when she asks where my father is, I don't tell her he died 30 years ago. I say he must have just popped out to the shops. If she asks me for the fourth time in 5 minutes what the time is, I simply respond rather than saying "I told you that two minutes ago!" It reduces the tension and upset enormously.

BellaVida Thu 01-May-14 14:06:32

For us it has been about carrying on doing the things she enjoys, but scaling trips down. She has vascular dementia and has had some mini TIA's, so we are cautious and make sure someone is always around in case she needs us. We do shorter, earlier visits with the children too, as she tires more easily in the afternoons. There are also a few other things she has asked to do, like visiting places from her childhood, which I think is clearly important for her to preserve some memories.

The saddest thing for me is that she knows when she is struggling to recall something, or find the word she wants and seems embarrassed. I still chat away to fill the gaps, but it must be unbelievably frustrating.

The worst thing is other people being negative, stressing her difficulties and reminding us she may not be with us much longer. I know that, but in the meantime, she is here and we will make it as happy a time as we can!

Roseformeplease Thu 01-May-14 14:26:07

Sadly, my relative died eventually. However, the thing that kept us going was showing her photograph albums and how long it kept her happy, talking about the distant past, even though she wasn't always entirely sure who we were. We also tried to be as upbeat as possible with each other when talking about her: rather than, "Ooh, isn't it terrible," we would try to highlight the little positives: the music she was enjoying, her new hairdo or how much she had relised a cup of tea.

AndHarry Thu 01-May-14 14:39:31

If you don't have a loved one who is affected by dementia, how do you think you'd cope with this diagnosis in a close relation? Where do you think you'd look for support?

I would be very upset if a close relative was diagnosed with dementia, mostly because I woud worry about their quality of life but also because of the personality changes that can come with the illness. I have several friends caring for elderly relatives with the disease and it's heartbreaking to hear how their mum doesn't recognise them anymore and becomes so frightened that she lashes out, or how their dad ripped the gas meter off the wall to stop the gas company sending him bills. I would also worry about how we would care for them as a family.

Looking at my friends' experiences, my first call for support would be to their GP. Then I'd make sure that my relative had their legal affairs in order and encourage them to contact a solicitor while they still had the capacity to arrange a power of attorney and will. I'd also want them to have as much say as possible in their care, not just at that moment but also for later on when their condition would stop them making the choices they would have made earlier. I suppose I'd be encouraging them to consider what adaptations should be made to their house and also, sadly, to look at nursing homes to find somewhere they would feel comfortable when and if the time came. I would also be looking at charity websites to see what I could do to support my relative, what I should be looking for in terms of degeneration and what else I would need to do to make sure they got access to the right services.

JuliaScurr Thu 01-May-14 15:47:32

my father is full time carer for his partner. They have found Carers UK and Stroke Association very helpful. Charities provide great specialist support

Rosa Thu 01-May-14 15:49:14

Its easy to say you can enjoy life with someone with dementia but its bloody hard.
Watching the person you know and love slowly change become more withdrawn , less talkative , less reactive , less predictable. You have to adapt where you are going , who with and then when you are out you have to make sure the person is secure / safe and monitored. Social events unless you are with friends that understand are hard to go to. Holidays unless it is familiar territory its more hassle than its worth.
Often the people are older and it is more likely that the primary carer is the wife/ husband. They are often 'mature' so it is harder on them . The support could so be improved .
Having someone close with dementia who progressed slowly and now seems to be worsening fast you take each week as it happens and try to adapt your life around them... You don't have any choice. You hope that you have good neighbours and good friends who can help and give you a break as the person is not yet ready for a home or other.. It is obvious that you want to keep them in familiar surroundings for as long as possible.
As for conversations well they just seem to pitter out ... Or you try to make conversation but it tends to be more and more 'current' its cold today, the foods nice , was that a nice walk etc etc. After reading a newspaper they can't recall one item they have just read its hard .

whattoWHO Thu 01-May-14 16:26:53

My relative is in the later stages of dementia.

Conversation is mostly one sided, but its lovely to see a spark of reaction while I chat. I generally compliment her hairdo, or her dress etc.

And chat about holidays and try to include her by mentioning past events we've shared, eg "do you remember when we went to Devon and it was so hot, it was reakkyy cooling to splash in the sea". That way it doesn't matter whether she remembers details but she can still feel involved in the 'conversation'.

Before the dementia was so bad, we played games such as bingo, snakes and ladders, happy families.

And loads of looking at photos.

CMOTDibbler Thu 01-May-14 18:05:55

My mum has Alzheimers, with massive damage to her temporal lobes. Unfortunatly, this means her receptive and expressive language is very, very impaired and she is very socially disinhibited.

She doesn't enjoy much, and has no interest in looking at old photos. But she loves for our dog to lie on the bed next to her, and takes pleasure from cuddly toys.

I guess mum has a 'good life' in that she has absolutely no insight - but she'd be horrified if she did

CrewElla Thu 01-May-14 19:14:58

It's hard but letting go of things has started to make it easier. Instead of trying to insist my mum remember something we just go with whatever she remembers. Going with the flow instead of trying to change things makes it possible to enjoy our time together.

HannahLI Thu 01-May-14 19:31:39

My grandmother has Alzheimer's progressed on from dementia and I am part of the team that provide almost 24 hour care for her now. She has deteriorated quite a lot over the last few years and she is battling to keep as much independence as she can and its frustrating to see her gradually losing control of each part of her life.

How we spend time with her hasn't changed that much, we are careful with how much we do do as being too tired can cause dramatic changes in her behaviour. She enjoys spending time talking and having coffee, particularly if I have my young boys with me who are 2 and 4 she enjoys watching them play. We are careful not to take her to environments that are too noisy so that she remains happy and we have adjusted to the idea that she can be fine and happy for an hour and then suddenly demand to go home. With anything I think consistency is key and routine activities like visiting the church cafe and more long standing familiar activities always work better and create minimal stress. Part of the ongoing issue with the dementia is that my grandmother has lost a lot of her conversation and so we always go in prepared to talk more.

In terms of attitude I think it can be very distressing to see someone you learn suddenly come at you with anger and agression and so for me I try and remember that those actions are the disease not the person and them trying to express their feelings on the situation. We also try and give vocal prompts to her when we are out so that she doesn't feel embarrassed when she can't remember who someone is. We are all very used to the situation.

Jinty64 Thu 01-May-14 20:01:04

My mother-in-law liked to sing songs from the Second World War. Luckily a residential home near us had a reminiscence group where they did this and had someone to play the piano. She also loved looking at old photos.

miljones1 Thu 01-May-14 20:29:06

I think if my parents were diagnosed I would be really devistated, especially as I live in a different country! I would count on help from other family members and try to find out as much as I could about how to support them effectively...

tinypumpkin Thu 01-May-14 20:58:50

It's so difficult isn't it. My grandfather had dementia and we took him to places he used to like (pre dementia). He was a very difficult man generally (long history) so it was always difficult to know how much he enjoyed things as I did not always have a good sense of this before the illness began.

In terms of support, we have a local charity called BRACE and also the usual Alzheimers Society etc.

sharond101 Thu 01-May-14 22:17:31

I am watching my SIster and Brother in Law come to terms with dementia in BIL's grandfather. It's difficult even from a distance. They are accepting of his condition but BIL's mother cannot accept it and it's making things harder. Practical support is essential although in this case is not given as the grandmother is too proud to accept any help. I like the idea of making memories and i think a great purpose f a charity would be to help that happen.

mamato3luvleys Thu 01-May-14 23:03:45

Yeah my nan and had dementia and loved looking at photos and books that she used to love to read,she was also deaf so life was quite silent for her we used to have to write most things down although she would/could lip read if she was in the mood. I used to humour her when she kept saying the same things as bless her she didn't know she was repeating herself. She also used to say to my mam "you shouldn't be here leaving them bairns at home alone" even though me and my sister were sitting there with our own children god knows who she thought we were! I truly ♡♥♥♡ my nan and and it was terrible seeing her become a shell of her former self.

LackaDAISYcal Thu 01-May-14 23:32:51

I'm speaking not as a friend or relative with dementia, but as a home care worker.

I see many different types of dementia and different stages of the disease, and would love to work specifically with dementia patients. I have seen several clients waste away as their families have been unwilling to accept their diagnosis or unwilling to accept that there are support services out there. Attitudes range from "mum was always working when we were children and her obsessions <with lost children> is her guilty conscience coming through" to "I don't think my Dad needs to be associating with those people <other day centre users>" and have witnessed family members buckling under the pressure of looking after a relative full time.

Whilst the majority of families are supportive of their relatives, the ones who aren't aren't doing it maliciously, rather they are not educated enough on the condition or aren't being supported enough. I do think that more can be done to support relatives. Respite care is woefully over-subscribed/under funded. My office has a waiting list of families waiting for respite places, and sadly dementia patients are the ones who suffer.

I also feel that the level of training provided by care companies to their staff is woefully inadequate, and that home care calls are so short that there is no time to engage with and develop relationships with the client. It also takes a special sort of person the be a dementia care worker. Better training of staff, better vetoing of staff, longer care call allocation, more day centre provision and better support for family members will go a long long way to making the lives of dementia patients much more bearable.

stephgr Fri 02-May-14 01:25:36

my father is in the early stages following diagnosis. We're trying to deal with it by finding out as much as we can about the condition, taking each day as it comes and trying to enjoy to the fullest each "good" day/moment.

ErnestShufflebottom Fri 02-May-14 13:15:43

With my grandpa, we often used to just sit and hold his hand. We would talk about the films he worked on as a set designer and he sometimes remembered something. We used to go for walks in the garden of his care home and sit on his favourite bench watching the daffodils blow in the breeze.

billybear Fri 02-May-14 16:14:33

im my husbands carer, he has nerve pain over his whole body on lots of very strong pain relieve the down side they make him dozy,unsafe to cook, drive etc, so I have to watch his medication taking,.very hard work, he gets very worked about little things, the fight we have had to get any benefits for him is terrible, in front of judges who have not evan heard of the medication he is on so there for answer is no. its taken 2 and a half years for me to finally get carerers allowance for him, he has pain specialics letters saying he is like this for the rest of his life..

GetKnitted Fri 02-May-14 21:29:37

I have been very fortunate in my life not to have to see a loved one go through this terrifying disease. Between cancer and dementia is like the devil or the deep blue sea. Think I will take up an extreme sport in my 60s so that I have another option. sad

My father has dementia
He was pottering around , feeding himself , joining in conversation , walking upstairs , until he had a chest infection ..
He was in hospital for 13 weeks ( a quarter of a year ) and is now in a nursing home .
He is doubly incontinent , has no strength at all , so is bedridden unless hoisted into his wheel chair ( which is made to measure and is superb )
I am completely overwhelmed by this .
I am unfeeling because it's too awful to think about
A year or so before this , he became a vicious , spiteful and unkind old man who said some awful things to me I cried for 3 days , overreact ? Me oh no
And now I'm uncaring .
It's not him , so where has he gone ?
Mum died at only 61 , Dad is 79 , which way is better ?

MrsO27 Fri 02-May-14 23:41:38

My grandmother had Alzheimer's. She often focused on the early part of her life so just listening to those stories from that time and asking questions about them meant we had a connection - something which was lost if we tried to speak about more current/recent affairs. It must be such an isolating and scary condition for the sufferer.

Hopezibah Sat 03-May-14 00:43:08

Great nanny had to go to a care home specifically where they could cater for dementia. They were in a separate part of the building to others so that it could be kept secure.

One of the things that was done for her by close family was to put together a photo album of loved ones so she could look through and see their familiar faces. Even though she wasn't always aware by then who was who, she found it comforting to have that photo album. I like to think it helped her have a good quality of life and a happy life.

Visiting her regularly was also important because even though it was sad for us to see her deteriorate, she had a laugh and a good time whilst we were there to see her.

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