Planning for the future

[HarrietD]

NB: This post is about advance care planning, which is about making decisions about your future care and making clear your wishes at the end of your life. If you're not in a place where you feel comfortable reading about this, please feel free to click away from this post.

Hi everyone,

We've had the below request from Su Burns, the Associate Dementia Trainer for Alzheimer's Society's Training and Consultancy team.

She is currently writing a course on advanced care planning, and would love to have the views of people living with dementia (i.e. what is important to you when considering your future plans) to make sure the course content is authentic and representative of real people's views.

These would be used as case studies, and would be completely anonymous.

The course is due to be delivered in April, so the deadline is the end of this month.

Please take a look at the questions below, and answer as many as you're able to. You can also PM me instead if you'd prefer.

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Questions:

• Have you thought what your future wishes might be?
  
  
• Have you talked these through with anyone? This could be family, friends or an independent person.
  
  
• What would make it easier for you plan your future?
  
  
• If you have discussed it with someone, what helped? What didn’t help?
  
  
• If someone else started the conversation with you, was there anything they did to help you to make the right choices for you? What could have been done better?
  
  
• Have you found any particular information useful? This could be something online, leaflets, publications or face to face.
  
  
• If you haven’t discussed your future with anyone, what would help you to do this?
  
  
• Have you been offered this conversation?
  
  
• Who would you want to support you?

 

[Dunroamin]

• Have you thought what your future wishes might be?
• 
  
• Yes
  
  
• Have you talked these through with anyone? This could be family, friends or an independent person.
• 
  
• Husband
  
  
• 
  
• What would make it easier for you plan your future?
• 
  
  
• If you have discussed it with someone, what helped? What didn’t help?
• 
  
• I am retired health professional with a lot of knowledge about neurology and clinical psychology and I have an extremely early diagnosis due to this - neither of which are too helpful when you are the patient. Many do not believe I have anything wrong with me. Many professionals (this is not meant unkindly) have less knowledge than I do and give out misinformation.
  
  
• If someone else started the conversation with you, was there anything they did to help you to make the right choices for you? What could have been done better?
• 
  
• Communication between assessors and their admin was non existent. MY GP was also unaware of my diagnosis when I attended initially
  
  
• Have you found any particular information useful? This could be something online, leaflets, publications or face to face.
• My husband (no medical knowledge at all) has found the Alzheimer's support worker of immense value. She has signposted him to a support group, visits us at home, helped with POA's and advised who to contact for financial advice.
• 
  
• Due to my early diagnosis and pragmatic approach I am able to discuss my wants and needs (and hopes) openly. I find it helps when I have an 'off' day and enables me to be a kind of ambassador for the condition. I am appalled at the amount of avoidance and head in the sand approach of the vast majority and feel this is something that needs addressing.
  
  
• If you haven’t discussed your future with anyone, what would help you to do this? N/a
  
  
• Have you been offered this conversation?N/aN/a
  
  
• Who would you want to support you?

 

[HarrietD]

Thanks so much for this, @Dunroamin - really appreciate you taking the time to answer some of these. I'll pass your answers onto the Dementia Trainer who's writing the course.

 

[NotTooLate]

• Have you thought what your future wishes might be?
• I’m working at Living with my dementia. I wish to be able to live independently as long as I am able and as long as I am aware of my existence. I do not want to exist in a world where nothing is real to me and unknown. I want to be able to decide when I am ready to go.
• 
  
• Have you talked these through with anyone? This could be family, friends or an independent person. My daughter and son. My carers and have POA. They know my views and wishes and accept them, although it would be hard for us all.
• 
  
• What would make it easier for you plan your future?
• 1. Start treating people with dementia as people and not as someone on a path of certain death. I was told it was too late for me… treatment and care zero!
• 2. Allow the patient to be apart of there own life and care, not just one side and from a carers’ view alone.
• 3. Allow them to decide to go, while they can and if it is there choice
• 
  
• If you have discussed it with someone, what helped? What didn’t help?Be honest, upfront, it is going to be difficult. If the person with dementia is aware and not in denial, they have to be involved in what it decided. it is their life you are talking about. It is vital to know what stage the person is at.
• 
  
• If someone else started the conversation with you, was there anything they did to help you to make the right choices for you? What could have been done better? Be honest, upfront and start talking about it as soon as possible, not when the problem is one of solely keeping the person with dementia functioning
• 
  
• Have you found any particular information useful? This could be something online, leaflets, publications or face to face. Not for dementia sufferers, but there is a lot for carers. Should be more information about what can be done by sufferers living with dementia and not seeing them as dying with it!
• 
  
• If you haven’t discussed your future with anyone, what would help you to do this?
• 
  
• Have you been offered this conversation? No
• 
  
• Who would you want to support you?

I don’t think there can be any support while there is a situation where the medical profession can offer nothing, so charities end up offering support, which can only really be offered to the carers.

Support has to be given directly to the people suffering with dementia. Addressing them directly and not indirectly as if they have already gone. Many of us are still here and not lost all hope yet!

 

[HarrietD]

Thanks so much @NotTooLate, I've passed your responses on.