The answer to this question will be as varied as the number of people it applies to. Every individual person and family is different. A member of our Facebook community asked this question recently, so I thought I would do some research as well as share my experiences and thoughts with you all, with the aim of perhaps helping someone at this stage of the journey.
To get you started, here is an excellent article from the experts at Dementia Australia – Caring for someone who lives alone.
There are probably very few people with dementia who wish to move to a facility. My parents certainly didn’t. When I raised it, Mum said it might be OK for the social aspect but would rather be at home. Dad said if Mum died, he’d rather just go bush 🙂 My mother-in-law desperately didn’t want to. In fact, she went for two weeks respite care and decided she’d rather go to heaven than stay there, so she did!
My belief is, as much as possible, their wishes should be respected whilst at the same time balancing responsibility for their safety and what is actually best for them. I was speaking recently with a friend whose mother has dementia and father does not. As long as he is well, her mother is safe at home but the fear is if her father has another heart episode, her mum will need to go somewhere quickly. We discussed our expectations of quality of life which differs from theirs.
My parents hid their memory loss very well from me. Mum would say she felt a bit funny in the head and repeated herself a lot, but I did not know she had stopped doing the finances (Dad had never been good at it). About eight months later, I discovered a big financial mess. When I started investigating, I found Dad had been missing a lot of important aspects of his work as well. Then it began to sink in what was happening – tragically they were both struggling with early stages of dementia.
They were very adamant they wanted to stay in their home for the rest of their life, especially Dad. The best thing I did at the beginning was to contact ACAT (in Australia – the Aged Care Assessment Team – there is probably an equivalent in other countries) and get them assessed so they were then in the system for help. They began to have a cleaner come in – the only help they would accept. At least then I knew someone was there keeping an eye on things twice a week. They also had a good friend who visited most days which was wonderful for me as an only child an hour’s drive away.
I remember one day having a debate with myself 🙂 They were not living how I think a person should live or how I would like to live. However, they were happy in their mess and reasonably safe. So my conclusion of my debate was that I needed to reduce my expectations of how I think they should live and not treat them like children but allow them as much independence as possible. Through this process, I also gained empathy for them and realised how confusing and frightening this stage of their lives must be.
My wonderful case worker at the in-home care service that provided the cleaning, when asking her opinion on how long they could live at home, said it would probably come to the stage when something will force the issue and it can be dealt with at that stage.
In my case, that is exactly what happened. My Mum had a fall, not because she was elderly but because the back step had rotted, and injured herself quite badly. Dad was quite traumatised about the whole incident. Mum was in hospital for a week and when it came time for discharge, the social worker would not release her home, as she did not consider it a safe environment for either of them any longer. Then came the conversation I had to have. If I was not able to talk them into it, the social worker would have to take on the role of power of attorney and force the issue. I prayed and prayed and then had the conversation with as much compassion and patience and explanation as I could. A few years earlier, with my mother-in-law, the plan was to ease her in with a few weeks respite care then home again. With this in mind, I also tried to break the news by describing it as respite care. It actually was classified as respite to start with so I didn’t have to lie, although I did know it would become permanent. Thankfully, they agreed and even thanked me for caring for them. The post-script of this story is they both ended up enjoying being there.
In conclusion, here are some points to consider from the Dementia Australia article and from what I learnt:
- Get an ACAT assessment as soon as possible so they can access services to help them stay at home longer and so they are in the system ready to access services when required.
- Check how their finances are going – they may not be coping with paying bills, etc.
- Have a look around the house for any potential hazards.
- Check if they are remembering to turn off heating, stove, etc.
- Look for moments to discuss their wishes for the future while they still have some understanding to do so.
- Perhaps obtain a medical alert pendant for them to wear in case of emergency.
- Research independence aids.
- Get to know the neighbours or other friends who can stop by. If in a church, contact their pastor. If in another community, contact the person who leads the community.
- Put your phone number in their wallet in case they get lost and someone needs to contact you. Also, put phone numbers on their wall for people to call in case they can’t remember how to look up numbers.
- Give them a diary to record daily events in and help them to remember what’s coming up.
- Stay patient, compassionate and empathetic. Avoid treating them like children whilst balancing having to take responsibility for their care. Allow times to vent all your frustrations out of their earshot so you have an outlet and so it doesn’t come out when you are with them.
- Be ready for some difficult conversations and think them through well first in order to achieve the best possible outcome.
- Do a little bit of research into facilities so you have some knowledge if the time comes. If there are waiting lists, it doesn’t hurt to put their name down – you can always say no if it comes up. See my previous blog on this subject – Choosing a Care Home