Getting Started: The Flow of Life and Responsibilities

Sometimes, life places a heavy responsibility on our shoulders just when we're least prepared for it. Discovering that someone you love has been diagnosed with a progressive and complex neurological disease—such as Alzheimer's or Parkinson's—is one of those pivotal moments. After the initial shock, your mind may be filled with questions and uncertainty: What do I do now? What is best for them? What will I face in the long-term? These are natural—even necessary—questions. Yet, amid the daily pressures, it's easy to put long-term planning on the back burner. However, it's not too late to consider or begin making steps toward care planning. On the contrary, starting to think now will help keep you, your loved one, and your family safer at every stage of the process.

What Is Long-Term Care Planning?

In its simplest terms, long-term care planning means considering the processes, needs, and support resources that will be required for your loved one today and in the future. In progressive diseases like Alzheimer's and Parkinson's, a person's needs change and grow over time. Planning means structuring care not just for 'today', but for 'tomorrows' as well.

• Daily care (routine needs such as nutrition, hygiene, medication schedules, etc.)

• Safety (preventing home accidents, avoiding wandering, etc.)

• Medical follow-up (doctor appointments, adapting to new treatments)

• Emotional support (psychological needs of the person and the caregiver)

• Financial and legal preparation (costs of care, legal documents, decisions about care directives)

Planning allows you to prepare for both foreseeable and new needs that may arise over time. This means less stress, more effective care, and a healthier patient-caregiver relationship.

Why Isn't It Too Late? Scientific and Emotional Truths

Statistics show that more than 70% of people living with conditions like dementia or Parkinson's are cared for at home, mostly by family members (Source: Alzheimer’s Association). However, nearly a third of caregivers only turn to long-term planning months or even years after taking on care responsibilities. At later stages, it gets harder to cope with sudden crises, and caregiver burnout becomes more common.

So why is it not "too late"? Because every stage is a new beginning. Even if the disease has reached a certain phase, the decisions made for the future can still make an important difference. Emotionally, you don't have to feel guilty or like you've failed: Care is a journey, and every journey allows you to redraw your path.

Remember: Now is the time to shape the future in a healthier way—both for your loved ones and yourself. Wherever you are in the process, every well-intentioned step you take is the right step for that moment.

Key Steps in Creating a Care Plan

1. Acceptance and Gathering Information

   • Read resources about the disease and its progression.

   • Ask your doctor what kinds of needs may arise in the coming years.

   • Evaluate your own family's limits and strengths.

2. Building a Care Team

   • You don't have to go through this alone. Think of care as a team effort.

   • Family members, close friends, neighbors, or professional care services can all offer support.

   • Try to share responsibilities and roles realistically.

3. Making the Home and Living Environment Safe

   • Check for slippery floors, sharp corners, and loose cables in your home.

   • For Alzheimer's patients, securing doors and windows is important; for Parkinson's, installing support bars in bathrooms and toilets can be essential.

4. Medical Follow-Up and Emergency Preparedness

   • Create a health file; store prescriptions, doctor's reports, and emergency contact numbers in it.

   • Make it a habit to keep a medication schedule.

   • Prepare a family emergency action plan for crisis moments.

5. Financial and Legal Issues

   • Care costs can be a significant burden over the years. Review your current income and savings.

   • If possible, consult a financial advisor or social worker.

   • Prepare the patient's powers of attorney, will, and care directives.

6. Emotional Support and Preventing Burnout

   • Create emotional space for yourself. Identify in advance whom you can talk to and who you can ask for support when needed.

   • Connecting with group therapy, support groups, or online communities can boost your confidence.

   • Be mindful to regularly make time for yourself.

Time, Guilt, and Hope: The Emotions of Caregivers

Research suggests that about 40% of long-term caregivers experience depression, burnout, or feelings of anxiety (Source).

Am I too late? is a very common question among caregivers. The sensitive truth is that achieving perfection in care is not possible. What really matters is to act when you notice needs and as your strength allows. Delaying is sometimes a form of self-protection, not just avoidance. Still, even taking small steps every day toward planning makes the future more foreseeable and hopeful.

"Care is not just about meeting physical needs. Every form of support—given with love, understanding, and by tuning into the spirit of the moment—leaves a mark in life as a memory, a smile, or a sense of trust."

From Real Life: A Family Story

Mrs. Emine, age 62, took on the care of her mother, who had been diagnosed with Alzheimer's, at home. In the early months, adjusting to the changes was very difficult. As her mother began to wander at night, sometimes showed aggression, and suffered memory loss, Mrs. Emine felt inadequate and even too late. On a psychologist's advice, she started taking small but effective steps: keeping a care journal at home, holding brief weekly family meetings, and creating a plan for emergencies. Over the months, things became more predictable and every crisis became easier to handle. Mrs. Emine said, "I was always waiting for the right time to start, but then realized that the right time was the first step I took right after the moment I was most afraid."

Long-Term Planning in Practice: Small but Powerful Steps

• Spend 10 minutes each week reviewing a topic about the care process and, if necessary, making notes.

• Create weekly or monthly checklists. (Example checklist below)

• Share challenges you face in caregiving openly with loved ones or your support circle.

• Stay updated on evolving technology and resources. (Other caregivers' experiences, community forums, association publications, etc.)

• Appreciate your small successes and avoid beating yourself up over mistakes.

Conclusion: Wherever You Are on the Journey, Strength Lies Within You

Long-term care planning is not bound to "too early" or "too late". Every new day is an opportunity to bring hope and vision to the care journey. Remember: care is not just a duty but a gift given with love. Even in moments when you struggle or feel you have fallen short, trust that each step you take matters. As you accompany your loved one on their journey, I wish you a process where you too remember your own path, and always feel safe and supported.

Resources

• Alzheimer’s Association. Alzheimer’s Disease Facts and Figures. https://www.alz.org/alzheimers-dementia/facts-figures

• National Institutes of Health. Caring for a Person with Alzheimer’s Disease. https://www.nia.nih.gov/health/caring-person-alzheimers-disease

• Carers’ depression and anxiety linked to dementia care: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4519752/