list

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As we are near the end of 2016 I thought it would be a good idea to share what we have learnt as a group and compile our own ‘DD’ list of mistakes that are made by carers. They can be big ones or small ones, knowing or unknowing.

This ‘call-out’ is open to anyone in the group to put forward 5-10 mistakes made by carers of people with dementia.

I can then collate these and create a master list that we can post on the ‘Dementia Downunder’ website.

It doesn’t matter if they have been mentioned before, and can relate to any area of dementia care. ( I can perhaps put them in categories)

I am really interested in what matters to YOU and what really frustrates you when you see these mistakes made when caring for people with dementia.

I will start us off with a few:

1.talking in front of the person with dementia about them.

2. Not caring what tv channel is on when a group of residents are watching.eg inappropriate or not suitable.

3. Continuing with a lifestyle activity when the group clearly do not like it or are becoming frustrated.

4. Excluding people from activities or conversations due to their stage of dementia.

5. Being lazy and not caring for the person to the best of your ability.

When dad was diagnosed I had no idea what dementia even was. Now that I know what it looks like I would certainly do things differently. Family and caregivers are impacted massively, so this list is to help make their life easier also.

This is my starting list:

• Tell everyone ASAP
• Get my financial affairs in order (will, advance care directive, power of attorney, guardianship)
• Organise all my bank accounts, service providers (gas, electricity etc) paperwork into clearly marked separate folders. (so a close family member could easily take over if required)
• Arrange my home to be changed to a ‘dementia friendly’ one. Eg rails in shower, label water taps “hot and cold”, etc…etc…
• Talk with my family heaps – offload my words of wisdom and stories to my wife and kids
• Make an impact on everyone I come in contact with – be super positive and tell them about dementia and how I am dealing with it. (no more stigma!)
• Talk with family and friends and have strategies on how to treat me along the journey and advise them of all the things that would upset me in advance.
• Write “My Life Story” document as a starting point for people to assist me. This document would change constantly and need to be reviewed monthly.
• I would write a massive list of everything I like and don’t like. It would be extremely detailed and include my fave colour (black), fave food(bbq chicken), fave smell(vanilla), how I like my coffee, etc..etc…(It would be in categories allowing for family to follow easily)
• De-clutter my home – free myself of things I no longer use.
• Write a personal diary to capture my thoughts and frustrations. (or blog)
• Hit the ‘bucket list’ real hard – eg go on holiday to fave destination, go parachuting etc…I would do this in reverse order with the most physically and mentally challenging things first.
• I would use video all the time. I would capture my favourite things and have them for the future when I can sit back and re-watch my memories.
• Visit the very best aged care facilities in advance and select the top 3 that I like based on my needs. Eg activities, environment, location to family.
• Sell my car and use the money to pay for new transport methods. Eg taxi’s and buses. (pay friends petrol money)
• I would make myself a personalised card that I could hand to people if I struggled with communication etc so they could assist me. It would have my emergency contact numbers on them.
• I would buy a dementia medical bracelet to alert people of my condition. Invest in a personal alert system and or KISA phone.
• I would try not to feel sorry for myself, but impart my knowledge and do talks in schools and community groups for as long as I am capable.
• I would surround myself with my favourite things and people.

This is my own personal list, and is very individual, and I am missing heaps of things, but I thought it may spark a conversation that would encourage many of you to add things that are important to YOU and we can all learn from these (and I may pinch a few of your ideas as well).

Approximately 1 in every 3 people will get dementia in the later years…a dementia plan is definitely worth thinking about!