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A diagnosis of Alzheimer’s can be an unknown territory for patients, carers, and medical professionals alike. While many factors are out of our control and much uncertainty surrounds Alzheimer’s, there are helpful things you can consider.
Quick Links:
Understanding the disease
Children: Have the talk
Preparation
Patience
Your Next Stepz
This article won’t tell you everything will be “okay”. The truth is, it’s not good that your loved one has been diagnosed with this chronic disease. We hope we can provide simple insights to inspire you to have difficult discussions earlier and consider important issues now – before you are in crisis mode.
We hope we can provide simple insights to inspire you to have difficult discussions earlier and consider important issues now
Understanding the disease
Although much is undiscovered about this degenerative disease, one thing we do know is that Alzheimer’s disease is a chronic condition which gets progressively more severe over time.
What does that mean? It means that the patient will go through stages, each one presenting its own set of obstacles, these are different for everyone. They can include anything from memory loss, the inability to perform routine tasks, disorientation, a decline in communication skills or impaired judgement.
What should you do?
Do your homework so you can consider and understand your priorities and the available options and alternatives. For many people, maintaining their loved one’s independence for as long as possible is at the forefront of their decisions, wherever possible.
The options will not only provide parents or loved ones the freedom to choose, but it will also give them the reassurance and peace of mind knowing that all the options and possibilities have been properly examined and considered.
HINT: If a loved one is still able to carry out their day-to-day activities but sometimes forgets to take their medication, consider creating a call schedule amongst family members as the reminder they need as opposed to jumping straight into full-time care.
Children: Have the talk
Having the “talk” is a conversation that’s never easy.
Why? Because at the end of the day, we are our parents’ children. By having this “talk” we cannot help but feel like the parental roles are reversed, and feel it is not our place to let our parents know what they should do in their older years.
The thing to remember here is, these are your parents. While the “carer” role may be reversed, the will from both sides to do what’s best for everyone involved is still the same.
Will it be a difficult conversation? It will be. But would you rather feel uncertain about their preferences when the time comes, or confidently move forward knowing that the decisions you make on their behalf align with their wishes?
What you should do:
Begin an honest, adult-to-adult dialogue with your parent or loved one as soon as is practical to discuss their ideal vision for their long-term care. And remember to communicate with them with respect and dignity, so they truly feel like they’re being heard and their concerns are genuinely being considered.
HINT: A casual environment, such as over a meal at home, is the perfect way to start the conversation. It’s a comfortable way to ensure they don’t feel overwhelmed by the topic, and will also give them the reassurance of home and familiarity, knowing that the closest in the family have all come together to ensure a sensible plan is discussed.
Keep it small and intimate, and ensure the conversation is a two-way street where your loved one has the opportunity to share their concerns.
An effective way to transition to the topic may be to perhaps ask each family member to share their own preferences for care. If you feel unsure on how to approach things, simply think about how you would like to be approached if you were in the same situation.
Preparation
We all know end-of-life care is important, but it’s also incredibly personal. A study in the US showed that only 27% of children have had this discussion with our parents. Preparation is the key to creating an environment in which families feel comfortable sharing their thoughts and feelings about what is ultimately a very challenging subject.
Not only will it be a relief to be able to have an open, honest conversation, but it will also lead to lower stress and less worry for the whole family in the long run.
What you should do
Having a valid will in place that addresses the important factors is the first step.
Factors to consider include:
- Who will act as your parent’s executor?
- Have they an end-of-life care directive?
- Will they remain at home with a carer, move into a care home, or move in with family?
As much as it might be difficult to consider the worst-case scenario, these are all discussions to have and questions to ask early, especially while loved ones are still lucid enough to make their own decisions.
Patience
Seeing a loved one with Alzheimer’s is not easy. Therefore, it’s also important to remember to take care of yourself.
What you should do:
According to a study from the School of Psychology at Deakin University, almost half of caregivers develop depression during this journey.
Remember that it’s ok to feel anger and frustration. Share the burden by speaking out – establish a strong support network of family, friends, or external support groups, and seek help through councillors to ensure you are supported during this process.
Ensuring you have an outlet to discuss your feelings about your new situation is vital, and sharing with others on the same journey will make yours easier.
HINT: Take control and prepare. Put systems in place, have discussions early, make important decisions together with your loved one, and ensure your support network is in place.
Your Next Stepz
Alzheimer’s is a complex disease and this article only covers some of the factors involved in caring for someone who has it.
There are a range of organisations and resources that can provide relevant information and advice to both patients and carers.
For introductions to some recommended Alzheimer’s treatment support services and other relevant resources, simply talk to us.
