Tag Archives: support

Advantage and disadvantage of living alone with dementia

I’ve had conversations with many people lately about the struggle, frustration, guilt, joy and loneliness felt by those caring for loved ones with dementia. It got me thinking the impossible question – which would I prefer, to be the one with dementia, or to be the one caring for and watching the person I love become a shadow of their former self? May sound an odd choice to question, but each has it’s own unique tragic side. Both sides of the story are polar opposites in relation to challenges faced.

For those caring, the daily challenge seems one of survival. No one would question the love they have for the person – this they have in bucketfuls – but at what cost to their own life? After all, many have had to give up work, their former lifestyle, have friends who no longer visit. They have the daily challenge of keeping their loved ones feeling safe and secure – no mean feat when faced with the constant repetition of the same question of who they are and where they are. Their love and loyalty know no bounds but at what cost?

As someone living alone with Alzheimer’s and currently in the early stages – I’ve come to the conclusion that I’m relieved I live alone, not to have a partner. I don’t think I could have asked or expected anyone to devote their life to me when I start to lose the mental capacity to look after myself. I certainly don’t want my daughters to have to make that choice. That’s why the decision has already been made, discussions had and documented in my Lasting Power of Attorney. I couldn’t live with the guilt of them having to make that emotional decision themselves in the future.

 So much more needs to be done for those living alone with dementia but also to support those who have put their lives on hold to care for a loved one – a challenging dilemma……

 

As always, I always trying and focus on the positives in this cruel situation I find myself in. The advantages are there is no one to question my reason for watching the same programme back to back or my wish to sit in silence without any noise to confuse the brain. We can’t change what is happening to us so we have to adapt our lives to make it easier to live with this disease.
However, it also means you have no one to comfort you on the darker days, no hugs of reassurance, no words of encouragement. I’m lucky as I get hugs from my daughters each time I see them, down the phone and on emails…

There are many people living alone with dementia who must just drift over the edge of losing capacity without knowing or planning – what happens to those? As friends stop visiting or they feel in need of support and no one is there…..

Kate Swaffer’s blog is absolutely fantastic – highly recommended. Click on the link below for another woman’s experience of living alone with dementia:

http://kateswaffer.com/2015/02/12/guest-blog-by-dr-judy-galvin-on-living-alone-with-dementia/

Remember, as always, this is just my opinion of the subject. It’s purpose purely to evoke thoughts and discussion. Everyone has their individual right to their own opinion and experience. I can only give my view or experience as everyone’s experience is different.
Feelings remain when facts are forgotten

Everyone of every age should attend a Dementia Friends session
Everyone of every age should attend a Dementia Friends session

 

Follow on from yesterday’s blog

I had another thought following on from the workshop in London which I spoke about yesterday……..

During the discussions, the researchers still seemed to be in the realms of the ‘elderly’ when they spoke of dementia and the types of trials they were undertaking.

Whilst the elderly are undoubtedly a signficant group, I highlighted the fact that, an ageing workforce, combined with younger people being diagnosed, would pose different challenges for the future and it would make sense to start asking those questions now. It will be a whole new generation of people with different needs and requiring different types of research. For example, more studies are needed on ‘working well’ with dementia and the needs, not only of those working with dementia, but also a need to support those who are trying to juggle work and look after someone with dementia. You may or may not remember but I’m due to meet with NHS Employers with regards to two Toolkits they are working towards – one to support employees with dementia and the other for carers. The meeting is now taking place at the beginning of February so watch this space………..

I’m currently part of the research being carried out by Dr Louise Ritchie from the University of the West Of Scotland into dementia in the workplace and they’re in the process of asking for more funding for this to develop further. I hope they’re successful. There are lots of good engagement projects coming out of Scotland.

I also think my generation will have different expectations of care homes in the future and this could also make for a very interesting study in preparation for future needs. The fact that the National Institute for Health Research is planning to consult with those affected by dementia can only be good and may bring about more ideas and thoughts on future needs.

We’re heading in the right direction but so much more needs to be done, but this can’t be achieved without more talented individuals being attracted into dementia research and people with dementia openly being offered the chance to take part in research.

Top 10 things people have said that I wish they hadn’t

Top 10 comments people have said to me when they’ve found out I’ve got Alzheimer’s – in no particular order 🙂

1. “Oh no you poor thing”

2. “So when will we know you have Alzheimer’s?”

3. ” I’d go off sick if I were you”

4. “You don’t look any different”

5. “How are you going to manage”?

6. “You’re so normal”

7. “We’d like to visit you at home” (I work full time)

8. The word ‘suffering’ many times over

9. “Is she capable of doing her job”?

10. “How long have you got”

Tomorrow, I’ll write the 10 things I’d like people to say to me.  Hopefully some of you will find this helpful if you’re not sure what to say to someone who is living with dementia.

Billy the Cat considers a dementia friendly holiday

Me sulking
Me sulking

Wendy left the iPad lying around again, so I thought I’d grab the opportunity to put paw to keyboard as I’m not happy.

They’re sending me to the cattery again…..they think I don’t know…..but I’ve seen the signs….
The first was Stuart squeezing himself into the salopettes and then the next few days/weeks spending all day on the bike. I’d never book a holiday straight after Christmas – although come to think of it, I’d never book a holiday..They should take a mouse leaf out of my book and simply have a constant supply of biscuits on the go – no more, no less. He now he looks ‘svelte, sleek, streamline and ready for the slopes’ (I’m sure those were the words he used)………

Gemma’s perfectly formed so no need for drastic exercise action ( what do you mean, ‘creep!” I have to keep in one of their good books!) but for ages now, all she’s done is monitor the snow forecast in some far off place instead of concentrating on me. Worse of all, I’ve seen the horrible house cum cage thingy they squeeze me into to get me to said cattery.

It got me thinking. I hate being away from home, as well they know, so I wonder what we need to do for Wendy? I think she’d go on holiday without a struggle so no need for horrible cage thingy. However I do think she’d need familiar things around her. I’d like my empty cardboard box with me – I’d let Wendy borrow it if she really wanted to. What? Why wouldn’t she want to borrow my empty cardboard box??!!!
A holiday can be enjoyable for anyone (so I’m told!). With careful planning there’s no reason why it can’t be just as enjoyable for those living with dementia. The main things to consider appear to be:

Be realistic on the amount of time to spend away. Wendy loves weekends away – any more and I miss she misses me too much.

If travelling with a carer to family or friends, discuss how best they can help before you go. People are often more than willing to help if they know beforehand. It’s also an opportunity for the carer to get a break and helping hand – never forget the carer.

Some people living with dementia can find it difficult to cope in new surroundings – involve them from the start. The experience can be very different according to the stage of dementia. Wendy would like lots of printed maps – visual and in words and not to be rushed.
Make sure they carry the name and address of where you’re staying at all times.

If staying in a hotel, a small friendly hotel is often better than a large one with lots of confusing floors and corridors. Be honest with them if you’re at all worried. If they’re worth visiting they’ll be more than accommodating and understanding, if they’re not, steer clear.

Each individual is different but crowded places are usually best left to the crowds.

Make the person feel safe and secure.

The earlier you start preparing for the holiday, the less stressful it will be.

Make sure you have ordered enough medication to last the holiday.

If going abroad – check the insurance covers any accident or illness linked to dementia

Wendy likes walking alone on the fells in the Lake District – she may now need to take compass, maps, GPS equipment, tent, flare gun and survival kit in case she gets lost or if all else fails, just tie a long piece of string round her wrist to haul her back in – ha!

Plan, plan, plan – don’t leave anything until the last minute. Be organised and enjoy.
I mentioned at the beginning that Wendy might like familiar things around her – maybe she could take me! Mental note to self to make oneself indispensable for cuddles……..
The Alzheimer’s society have a great fact sheet on the subject that goes into far more detail:

Travelling_and_going_on_holiday_factsheet

After all I’m just a cat – a very unhappy cat who’s being abandoned for the week. I can dream though…….

Me and my friend Bruce
Me and my friend Bruce

p.s. I’ll send you a postcard next week from my hotel prison cell

Alzheimer’s Press release December 16th 2014

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News Release​ from Alzheimer’s Society Tuesday December 16th

Hundreds of thousands with dementia facing exclusion this Christmas

• 71 per cent of people affected by dementia think a lack of understanding has caused people with dementia to be left out at Christmas
• Two thirds of people with dementia receive fewer invitations following their diagnosis
• Dementia Friends advert starring Chris Martin and Amanda Holden, alongside Gina Shaw, a person living with dementia, is back on TV screens calling for people to become a Dementia Friend this Christmas

This festive period, people living with dementia are at significant risk of being isolated, according to new findings revealed by Alzheimer’s Society. New figures released today (16 December) reveal that a lack of understanding about the condition has led to those with dementia being excluded during what should be a joyful time of year.

A new study, among people affected by dementia, was carried out by Alzheimer’s Society and reveals that:

• Half (49 per cent) of those caring for somebody with dementia believe Christmas is an isolating time for people with the condition
• Nearly two thirds (63 per cent) of people with dementia have found that Christmas invitations have dried up since their diagnosis
• 47 per cent feel that people didn’t have time to include those living with dementia at Christmas
• 71 per cent of carers think that a lack of understanding is causing people with dementia to be excluded at Christmas
• Almost half (47 per cent) of people with dementia admit that their biggest worry is how family and friends will react to unusual behaviour

Nearly 80 per cent of people with dementia name shopping as their favourite activity in their local area, yet 63 per cent of those polled do not believe that shops are doing enough to help people with dementia.

Alzheimer’s Society and Public Health England (PHE) are calling on people to join the half a million individuals and over thirty businesses who are already helping to make this Christmas a dementia friendly one by becoming Dementia Friends. Twenty of these businesses are on the high street and include Argos, Barclays, Homebase, Lloyds Banking Group, Santander and M&S.

A  Dementia Friend is someone who has learnt a bit more about what it is like to have dementia, and the small ways they can support someone living with the condition. Retailers are encouraging their employees to become Dementia Friends, and providing guidance on supporting customers with dementia, including paying for goods and talking on the phone. Many staff who are Dementia Friends will be on hand to support customers affected by the condition when doing their Christmas shopping this year.

A new guide, also published today by Alzheimer’s Society and PHE, contains tips on how best to support people with dementia at Christmas – both at home and in the community. From singing traditional songs to having a quiet room set aside at a party, there are many ways to include people living with dementia at Christmas time. To download a copy of the guide, visit http://www.alzheimers.org.uk/christmasguide

Jeremy Hughes, Chief Executive at Alzheimer’s Society said:

‘Christmas is usually a time when families, friends and communities get together but people affected by dementia can struggle to take part or get left out altogether. It can be particularly painful when invitations to social events dry up because friends and neighbours fear dementia and don’t know how to act.

The more people understand about dementia and become Dementia Friends, the more we can reduce the stigma and enable people living with the condition to feel more confident about taking part in their local community.’
Celebrity Dementia Friend, Fiona Phillips, is an ambassador for the Alzheimer’s Society. In 2006 her mother, who lived with Alzheimer’s, passed away. Her father was diagnosed with the disease shortly afterwards and died in 2012. She said:

‘I know first-hand the devastating impact Alzheimer’s has on those living with the disease and their families. Christmas is such a wonderful time of year but it can also be very stressful.

‘It’s so important for friends and families to support each other, both emotionally and practically. Just being on the end of the phone or offering to help with the shopping can be a big help for someone caring for a person living with dementia.’

Tom Walden (29) from London thinks that Dementia Friends in local shops will have a really positive impact on his parents. His father Peter has frontotemporal dementia and motor neurone disease, which means that Tom’s mother Brenda often finds shopping with Peter a struggle. Tom said:

‘We need to increase public understanding of dementia as people still don’t know that there are many different types of dementia with a range of symptoms and behaviours. My dad is prone to wandering off when he’s out and about with my mother, and has lost his ability to speak, but because he doesn’t display any memory loss, people don’t tend to realise that he has dementia and often find his actions rude or disconcerting.
Professor Kevin Fenton, National Director of Health and Wellbeing at Public Health England, said:

‘In the excitement of Christmas, communities and individuals often overlook the needs of people with dementia. It is, however, encouraging to see the growing support for those living with the condition, through the fact that there are now more than half a million Dementia Friends and over thirty supporting organisations.

Through little actions, such as having more patience and not leaving out those affected by the condition, Dementia Friends can make a big difference to the lives of people with dementia, at Christmas time and throughout the year.’

By 2015, there will be 850,000 people with dementia in the UK. Dementia Friends was launched to tackle the stigma and lack of understanding that means many people with the condition experience loneliness and social exclusion.

Anyone can become a Dementia Friend by watching a short online video or attending a face-to-face session. To find out more visit http://www.dementiafriends.org.uk

 

Think of the Carers at Christmas

Carers too need time at Christmas.

Carers often feel isolated and pressured at this time of year. Trying to juggle caring with all the normal hustle and bustle of getting ready for Christmas must be so challenging at times.

If you know someone caring for someone else this Christmas, offer to give them a break. Look after their loved one for a few hours so they too can go and enjoy the festivities. They may just need time to shop, time to wander walk round the shops, time to wrap parcels in peace or do a bit of cooking, or they may just need time to simply be by themselves.

Help make their Christmas a happier one 🙂

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From all those with dementia

This is one man's house in Melksham, Wiltshire! He does it for charity :)
Festive pic: this is one man’s house in Melksham, Wiltshire! He does it for charity 🙂

From all those with dementia:

Don’t be offended if I get your name wrong this Christmas – what does it matter

Don’t be offended if I put the wrong names on the wrong parcel – it’ll make opening them all the more fun

Don’t keep correcting me if I get things wrong – does it matter?

Don’t be offended if I can’t join in the constant chatter – if you don’t all speak at once I’ll find it easier.

Don’t be offended if I want a bit of peace and quiet

Don’t be offended if I can’t keep up with all the games and quizzes as I can’t think of the answers quick enough.

Don’t be offended if I can’t watch a film all the way through without losing the plot or falling asleep

Don’t get the hump if I don’t remember what you bought me

I can give a thank you hug

I can accept a hug

I can ‘enjoy’

I can be content in my own little world surrounded by those I love.

I can be asked ‘what do you want to do?’

I can be happy just being me

Come to think of it, you don’t have to have dementia for those things to apply – see we’re not that much different from everyone else…………let’s look after each other this Christmas.

mum's photos 127

A whole new world: technology and me

I’ve never really found new technology very appealing. I’ve never wanted the latest gadget or latest model. The reason used to be cost but now, what you’ve never had you never miss 🙂 I enjoy listening to others enthuse on the subject and their excitement is infectious but I’ve never aspired to owning any of it. I’ve been content with the simplicity of my uncluttered existence.

For example, people often chuckle at my ‘brick’ of a phone and some youngsters even wonder as to it’s function if they’ve seen my particular ‘model’ – but it serves it’s purpose. I text, I ring people – it does the job.

Recently, my ancient laptop (I know it’s old by the weight of it – ha!) has become very cumbersome and difficult to use. I have a wonderful friend, Helen, who is a guru in all things ‘Apple’. She’s got enthusiasm by the lorry load and a willingness to transcend that barrier of ignorance and guide me to new frontiers.

(Deviating slightly – I have an alarm that goes off each night at 8pm when I need to take my medication – up pops the word ‘tablet’ as a reminder………Imagine my total confusion when the same word popped up last Saturday morning. I wandered round the house for a good 10 minutes trying to work out what medication I was due……….it was a reminder to go and meet Helen to look at ‘tablets’…..Mental note – must be more specific on alarm reminders….ha!)

Back to the story – I now find it difficult to learn new things so we knew it was important to see if I could navigate the touch screen technology of a tablet. What I hadn’t twigged was I never use a mouse on my laptop – I use the square, touchy thing instead of the mouse, so the slidy technology of an iPad seemed to be ok. Hmmm, now I’m reading that back, that should tell you all you need to know about the limits of my technical terminology….:)

I asked Helen to advise me as to the best tablet to get. Before I could show a nano second of hesitation we were ensconced in this enormous Apple store (I could say at this point, ‘with not an apple in sight’, but I won’t), surrounded by an array of alien goods.

The guy that helped us was very patient and reduced from 6th gear down to first when he saw the dazed look on my face. I needed:

Keyboard – tick; lightweight – tick; will I have problems remembering security code….thumb recognition – tick.

We played, Helen demonstrated, I forgot, Helen demonstrated again…….her enthusiasm was infectious. “I’ll have one” – I might get lost many times over and I might lose my APs (not even sure what they are yet!) but I’m sure Helen will help me find them again.

So here I am, blogging happily on my new toy and I’m almost competent (well, that may be a slight exaggeration) with the slidy, touchy screen technology thingy.

Thank you Helen! I’m suddenly ‘cool’ – I’ve never been ‘cool’ in my life……..

For the sceptics amongst you – what do you mean ‘how can you do that, you’ve got Alzheimer’s….?’ Haha! I can do anything!

So many agencies out there wanting to help…

I was invited to an event organised by the local Clinical Commissioning Group recently entitled ‘Innovative Health and Care Service’. It was hosted by the local Health and Wellbeing board to hear about plans for whole system changes that are based on new ‘care hubs’ – a model for the future. This model aims to put both health and social care in one place or ‘hub’. The main issue appeared to be the need for a central coordinator to help direct service delivery. In this case, this means directing people to ‘elderly post- admission’ and  managing discharge from hospital. All sounded very promising with some very good ideas. There were about 80-90 in the audience all split off into table of 10ish.

When we went round the tables it soon became apparent that I was the only lay person…goodness knows how I got an invite as the rest of the audience were health care experts from all agencies. I can only guess it is because I am a patient at the practice group that was presenting the event, but who knows, maybe I asked to attend and I’ve forgotten -ha! But I’m very glad I was invited.

We were given a presentation on the results so far, which were encouraging, and then each table were asked to discuss 2 topics around the proposals. It very quickly became apparent that there are agencies who don’t know about each others’ existence even though they provide a service that everyone appears to need and want. I was fascinated to hear about groups and agencies in my small area which I knew nothing about.

My contribution was firstly, as always, to include the patient in any discussions as that appeared to have been missed off the list……….I also suggested that there was a need for something like a ‘Community Pack’. Each resident would have access to a community pack which would firstly give one contact name and number, but also have a list of all the activities and agencies in that area. All areas would be served by a central coordinator. and all activities and agencies would have to register with the central team in order to cascade their service. That way there would be no duplication of resources and people would know of the existence of those resources and resources would be better used. It would also be the only means of keeping accurate records. I wish I’d had a community pack when I was diagnosed, as I would have learned sooner about the support available to me when I most needed it.