Anyone with a family member who has Alzheimer’s disease or other dementia-causing condition knows the pain of saying “Happy Mother’s Day, Mum” only to get a blank expression in return. Alzheimer grief doesn’t begin at death. We begin to miss our loved one long before they’re physically gone, and we’re forced to face some serious decisions.
What is dementia? Alzheimer’s disease, Lewy body dementia, vascular dementia, Fronto Temporal dementia, and other dementia types may have different causes, but they affect every function of the brain – not just memory and cognitive processing, but personality and physical functioning. It’s relentless and there is no cure. This makes time precious!
Things to do for your loved one while you still have time
- Collect memories while you still can
People with dementia lose their short term-memory before their long-term memory. In the early stages, record your loved one’s memories in a scrapbook. This might include photos and details of her childhood, any pets she had, her early adult life, how she met her partner, what it was like when she had her children, as well as any other events that shaped her life.
Because music memory is the last memory-type to go, record her favourite songs, hymns, musical and dance numbers also. As time progresses, these recorded memories will give you a greater chance of reconnecting, finding things to smile and laugh about. Using sight and sound (photos and music) to prompt memories promotes a stronger connection with identity, keeping your loved one happier and healthier for longer.
- Plan your care options
When caring for people with dementia, significant advantage comes from in-home care. At home, your loved one will be calmer because they are in a familiar environment, with their own possessions and memories, doing activities they understand, with people they can still connect with. They won’t be overstimulated, or around other dementia patients who may be distressed or overstimulated.
You will need to prepare, however. Remove tripping hazards, install grab rails to prevent falls and add locks on outside doors to prevent the possibility of wandering. Talk to the family about who can help and in which way. In time, you might find in-home dementia care the perfect solution. Expert nursing staff and carers engage dementia clients in gentle, peaceful activities, and provide personalised care and targeted therapies. This makes you a member of a team who make the best decisions about your loved one’s care needs as things progress.
- Be prepared to grieve long and hard.
Patients with Alzheimer’s have a limited lifespan, no more than eight to ten years after diagnosis, sometimes as little as two. With any dementia-causing diagnosis, you begin grieving the moment you hear the real reason your loved one has been losing her way to the grocery store and forgetting her grandchildren’s names.
Losing a loved one by gradual inches is agonising to watch. She starts to forget more and more until she can no longer button her clothes, feed herself, walk or even swallow. You will need to give your sadness breathing space and find safe ways of expressing them. Pat White found that sharing her blog Memories from My Life about her mother’s Alzheimer’s journey helped her cope. She could interact with a community of people experiencing the same thing and provide important advice to other people on the same journey. Keep a journal, eat healthfully, exercise, get enough sleep, find people who listen and care. If you are the main carer, get respite care.
Caring for someone with dementia can feel very lonely at times, but there are support networks:
- Dementia Behaviour Advisory Service
- Alzheimer’s Association
- Alzheimer’s Association Helpline – 1800 272 3900
- Your family doctor
- Alzheimer’s Association Resource Finder
- In home care support from a trusted dementia care Whether respite care for you, or live-in, daily or weekly care for loved one, Sydney-based Private Care understands the Alzheimer journey. We treat clients professionally and with the utmost discretion, kindness and understanding.
Receiving the news that your loved one has been diagnosed with a dementia-causing illness changes your loved one’s life and your own. Call Private Care in Sydney from all regions in NSW on 1300 559 260 to find out how we can support you through this difficult time.