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!