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Determining Your Path

This section of the Resource Area provides valuable information that may help to you plan and prepare for your dementia journey.  

One of the greatest concerns my mom had when we discovered changes in her cognitive skills was losing control over her life. She immediately felt vulnerable. This vulnerability and feeling of losing control is a common anxiety many of my companions have expressed to me as they navigate their plans and set a course for action. Here are a few steps my mom and I took to help her maintain a sense of control and autonomy from the beginning of her journey to the end.

1. Talk to a Medical Professional:
There are many conditions that can affect our thinking, memory, and attention. When noticing any changes, the most important thing to do is talk to a physician. Share with them what you are experiencing and mention your openness to consider dementia. Most physicians have an assessment they can offer right in their office. The sooner you understand the reason for the changes you are experiencing, the sooner you can choose the path of treatment or care.

2. Research:
The more you understand, the more prepared you are to maintain control, make plans, and cope. Take the time to research the disease you may be diagnosed with. Learn what to expect and find helpful resources available near you. There are many options to consider in relation to clinical trials, treatments, and care options. Being better informed will help individuals experiencing changes inform their caregivers and set up the support they need.

3. Assemble a Team of Supporters:
It has been my personal and professional experience that many of us wait too long to ask for help and to find a good group of companions to walk the journey of dementia with us. The sooner you share your goals and plans and expectations, the greater foothold you will have on your path. Who should join you?

A. The Inner Circle- Those closest to you will be the greatest support: spouses, partners, and family members. Having an initial conversation with those who will be on the journey with you will give you traction as you move forward.

B. Community Partners- The connections we make in our community can bring a great amount of support and encouragement if we reach out and share our stories. We can find allies among neighbors, friends, employers, and faith-based and service organizations.

C. Professional Services and Resources-There are many organizations, support groups, and professionals available to help with planning and support. Identifying a consultant and/or care manager like myself to help navigate the resources available can limit stress and speed up the process of maintaining desires and directions. 

D. New Connections- No one understands the journey we walk better than someone who is on the same path. When we reach out to individuals who are experiencing the same terrain we are, we can find a great amount of strength and encouragement. Not everyone is comfortable with formal support groups, but finding another person to talk to can provide a sense of community.

4. Create a Plan of Action:
The changes that come with dementia can cause individuals to have challenges with routines and functional activities of daily living like cooking, cleaning, medication administration, and finance management. It is helpful to develop a plan of care that will safeguard the direction of the assistance and supervision needed. Finding individuals early that can learn wishes and preferences will support your needs as your conditions change.

5. Get Legal, Medical, and Financial Affairs in Order:
To date, there is no cure or successful treatment for dementia. It is a progressive disorder that eventually impacts decision-making and judgment. It is so important for anyone experiencing health challenges to have conversations about medical and financial plans and wishes. This should occur early and often. 

Identifying those in your circle of support that will help manage your legal and financial plans according to your wishes is vital.

Setting up a formal and legal durable power of attorney (POA) for health care and a durable power of attorney for finances is essential. These legal documents identify a trusted individual to administer your wishes when the progression of a disease or condition makes it difficult to do so. Locating an attorney who specializes in estate planning and elder law can help draw up documents customized to meet your needs. It is important to keep in mind these forms are important whether you have $100 dollars or $100 Million.

Making these legal preparations early will do two things: 

1. Maintain a sense of control in decision-making and wishes when unable to make those decisions yourself.

 2. Protection from scams and court intervention.

6. Evaluate Safety:
A person’s memory, judgment, and attention skills are all crucial for functioning safely in our homes, and community, and while continuing some hobbies. Operating stoves, lawn equipment, motor vehicles, boats, and even guns can become a challenge for those experiencing dementia. It is important to be open to assessments and communicate stages to look for when safety is at risk. These are some of the hardest conversations to have but discussing them earlier with friends and family can make the care planning system smoother for everyone.

7. Plan Your Living Options:
There are many options now for living arrangements available to individuals experiencing dementia. Assisted Living communities with memory care units are a fast-growing industry. This can be a good option for individuals to consider in the early stages of dementia to create a sense of familiarity in a new environment. However, senior living communities are not financially feasible for everyone, and most people, if given a choice, have the desire to live in a home or apartment familiar to them. Talking with your care partners, care managers, and support team about your wishes early can help you prepare for your living-in-place options. Interviewing home care organizations, private care providers, and companions early can help them learn your routines and preferences with the goal to meet your needs later.

8. Stay Mentally, Physically, and Socially Active:
It is important for individuals and care partners to be as mentally, physically, and socially active as possible. There is a strong connection between a healthy mind and a healthy body. Sharing your journey with others will bring companionship and joy to your path and while it will not cure your condition, it can help alleviate the suffering and isolation many feel when diagnosed.

9. Eat, Drink, and be Merry
What we eat, drink, and breathe can impact the progression of dementia and the quality of our health in general. There are many diet recommendations to consider. Finding a nutritionist through a local fitness center, grocery store or medical team can help customize a meal plan. Hydration and consumption of healthy beverages are important. The key is to find what fits your lifestyle, desires, and preferences. Find what works for you and your care partner but keep it merry by joining in meals and conversations with others.

For more information on any of these suggestions reach out to me on the contact portal.

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