Tag Archives: decision making

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

 

Lasting Power of Attorney

The Martin Lewis Money Show on Friday 23rd January advocated the need for everyone to take out a Lasting Power of Attorney. He’s 42 and he’s got one. None knows what is round the corner. I did mine myself – it does seem overwhelming when you get the form but if you work through it in small chunks it is as straight forward as any official form can be. There’s lots of help online. You can do one through a solicitor but it will obviously cost you a fee in addition to the £110 to register but it’s a small price to pay for peace of mind. Whatever it costs you it is nowhere near the cost to loved ones of unravelling finances if you can no longer look after your own affairs. Unless you’ve a Power of Attorney already, loved ones need to apply through court, which can be long and costly.

There are 2 types of Lasting Power of Attorney – one for health and the other for finance. I’ve done both so my daughters know exactly what I want to happen when I no longer have capacity. Some people put off having one because they think others have control over what happens immediately – this isn’t the case. It comes into its own only once you lose the capacity to make decisions. It is also a great opportunity to talk to loved ones about your wishes for the future – a difficult conversation but well worth having while you’re well.

You can only set up a Lasting Power of Attorney when you have mental capacity. Once you’ve lost capacity, it’s too late.

The Alzheimer’s society has an excellent section on its web site:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=154

but if you need further evidence that it’s not just for those with dementia then you can read about it from Martin Lewis on the link below

http://www.moneysavingexpert.com/family/power-of-attorney?utm_source=MSE_Newsletter&utm_medium=Email&utm_term=04-Jun-13&utm_campaign=family&utm_content=43

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People with dementia making a positive contribution to change – Part 1

voices

I went to my local dementia forum for the first time last week. It’s held during the day, so last week was the first opportunity to attend as I was on leave from work.

I arrived late (I’m never late!) as I had trouble finding the cafe but once inside I felt like I’d always been there – another WOW moment:) The session is for people with dementia who want to make a difference – a voice for those with dementia. It was led by Emily Abbott who is heavily involved in dementia awareness, and the forum is part of DEEP – The Dementia Engagement and Empowerment Project – advertised as a ‘growing band of over 40 dementia involvement groups across the UK’:

deep

http://dementiavoices.org.uk/

The people, as always, were wonderful and it soon became apparent that their voices had not only been heard but listened to. York City Council had consulted them on new signage for tourists for the city. They’d thrown out their first offering as they were too confusing for anyone, let alone those with dementia. But their views had been listened to and their second offering was much clearer and user friendly. The council have now asked the group to offer up suggestions as to the best place to place to position the signs.  Because we know the city so well we have invited a similar group,  the EDUCATE project in Stockport, Greater Manchester, which encourages people with dementia to get involved in awareness-raising in the local community and beyond.

http://www.stockport.gov.uk/2013/2996/41143/sdct

It will not only give us a chance to meet another similar group of like minded people but will provide a better test of the maps for getting around the city.

What a fine example of including users in decision making:)

Friday random ramblings

Keywords post diagnosis appear to be ‘adapt’ and ‘adjust’…..

Music

I’ve always listened to music or had the telly on in the background whenever I’m doing something. Now I have to have silence as everything gets confusing if I don’t and I can’t concentrate. I found that sad to begin with because that’s the time I listened to music, which I love.

However, now I make a point of ‘just’ listening to music so I don’t miss out – a new experience!

Mentoring

When I was diagnosed, I wasn’t directed to anyone who could help or advise me. Wouldn’t it be useful if you were given a ‘Welcome Pack’ whenever you received any diagnosis (mmmm, maybe not quite the right name!). It would contain useful leaflets and websites but most of all the name of someone who could guide you through the initial maize of confusion – but that person would also have had the same diagnosis. I’d be a mentor quite happily. Maybe they exist in some areas in the country – I wish they’d existed in my home town. I asked a local person yesterday and was told there is an organisation which has a contract with the local health service to provide support and information for people with dementia and their carers. They offer 1-2-1 meetings with people offering information and advice…………so why wasn’t I given this information when I was diagnosed? I wonder whether those offering the support also have dementia – I hope so. Such a simple solution but this is an example that NHS services are of no use if the system isn’t robust enough for it to work correctly. I’ll email them now and let you know how I get on……..

Thank you

BIG thank you to Helen Roberts, a student nurse lecturer at York University who has asked if she could  use my blog in class as inspiration for people with dementia.

Equally BIG thank you to Dr Louise Ritchie of University of West of Scotland for using my story and blog to help train Alzheimer helpline volunteers.

It’s not that I think my blog is anything special as many people with dementia use this medium to tell their story. I’m just happy they’re using the blog of someone who has dementia to show people we are capable of making positive contributions to decision making.

 

A tranquil image to end the week: Blackpool like you've never seen it before!
A tranquil image to end the week: Blackpool like you’ve never seen it before!

Guest blog: my daughter Gemma

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My turn to give mum a break for the day! I loved Sarah’s thoughtful, reflective post and it inspired me to list 7 things I’ve learned since my mum was diagnosed:
1) Memories might make us who we are, but they’re not the whole picture. Our emotions, our senses, our day to day interactions with people – they’re vital too. So my mum will lose more memories in the future, but can still take in a wonderful view, accept a hug, enjoy a home cooked meal, give Billy a cuddle…and I appreciate these moments more than ever.
2) I’m so full of gratitude. To some this might sound strange (and a bit cheesy) but I really am more grateful than ever for all the wonderful things in my life. For example, my partner Stuart and I recently went to a lovely hotel spa for my birthday. We’ve been there before, but this time we really relished every single moment and took the time to take it all in. Because it’s been a bit of an emotional rollercoaster recently, with lots of sadness at things lost and how unfair it all is, I appreciate the good things that much more.
3) I said to mum recently that I feel like a curtain to a whole new world has been lifted. I didn’t know much about dementia before and nor do lots of people. I’ve certainly had some ‘interesting’ responses to the news in the form of rather insensitive comments (thankfully this is very rare). But I completely understand. If you’re not touched by dementia, why would you know what to say, or what a diagnosis really means? And of course, it affects everyone differently, so there’s no ‘one size fits all’ response. Through my mum, I have access to a whole world of people living with the condition, carers, researchers, activists…and it’s inspiring! But I wish it wasn’t so hidden away – I want all the negatives and the positives to be out in the open for everyone to see.
4) This is why I’m so proud of my mum. That sentence doesn’t do it justice really. I can’t put into words how proud I am. My sister said recently (sorry to steal this from you Sarah!) that it’s as if having dementia hasn’t changed my mum…it’s just enhanced all the best parts of her personality. I couldn’t have put it better myself!
5) I’m in the latter stages of doing a PhD at the moment. I used to practice in the subject I’m now researching, and to be honest I had started to feel like I was a ‘cop out’ for not remaining on the frontline. But my mum is so passionate about research and how important it is that’s it’s made me feel more comfortable with my decision. Now to actually finish my thesis…
6) I don’t sweat the small stuff anymore – or the big (ish) stuff for that matter. For example, if I lose my keys, or get a date wrong, or get lost – it just doesn’t affect my day. Or if I reverse out of my drive into a parked vehicle…that happens to be my partner’s car…that happens to be a company car…well, no one was hurt and these things happen so I’m not going to waste energy beating myself up about it. (I can’t say Stuart’s reaction was quite the same).
7) I really do appreciate how lucky my sister and I am regarding early decision making. I’ve heard terribly sad stories where people don’t know their loved one’s wishes and they have to make heart-breaking decisions in the later stages of dementia. It was a very emotional, difficult experience to complete the Power of Attorney paperwork with mum but I know now that her wishes will be respected and that means a lot to me.

I could write about many more things I’ve learned but these feel like the most important to share right now. If I could sum up my feelings in one sentence, I’d say my mum is still my mum and always will be.

Mum giving me the gift of reading :)
Mum giving me the gift of reading