Six Things to consider after receiving a critical diagnosis
After you or a loved one receives a critical diagnosis, including but not limited to Alzheimer’s or any other type of dementia, your world will feel upside down. Shock, anger, fear and grief are all common emotions. Give yourself time and space to work through it and process the news. There is no right or wrong way to react; everyone will respond differently.
As the shock wears off you will start thinking about what’s next. What can you do to prepare for the challenges ahead? What can you do to stay in control of your future?
Below are six things to consider after a critical diagnosis:
1. Learn all you can about your diagnosis
It’s a very scary time, and there can be many misconceptions. Learning all you can about your condition can help you know what to expect as things progress, and help you cope with the changes ahead. Understanding what to expect can help you plan for the future.
For example, if your diagnosis is a type of dementia, whether it’s Alzheimer’s, Lewy Body, Vascular or another type, look for information from recognized sources. The UK Sanders-Brown Center on Aging, the Alzheimer’s Association, the National Institute on Aging and the Alzheimer’s Foundation of America are good places to start.
The National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) are a good place to start for reliable health information. As a rule, health websites sponsored by federal government agencies are safe places for accurate information. Talk with your doctor about other reputable sources she/he would recommend.
2. Build a support team
Build a support team with your family, friends and doctors; a group that can help with anything from companionship to emotional support to household errands.
Relationships may change. Some people will not know how to deal with your news and may pull away. For those who are there to support you, be honest with them and let them know what you need. Don’t retreat or isolate yourself.
Sadly, there can be stigma surrounding many illnesses. It comes from a lack of information and an inaccurate understanding. The best way to fight this stigma is to encourage family and friends to learn and to ask questions.
You and your loved one can join a support group. A support group can provide both social and emotional benefits. It gives you the chance to talk with others and a place where you can share tips and strategies.
Staying Connected – UK Elder Care - Caregiver Support Group
When: 3rd Wednesday of the month / via Zoom
To register please click HERE
If your diagnosis is dementia here are a few resources:
Lexington Memory Café: A social event providing a safe, comfortable environment where people with memory loss and their care partners can enjoy time together and remain socially connected.
When: Third Wednesday of the month, 2-4 p.m.
Where: Alzheimer’s Association – 2808 Palumbo Dr – Lexington, KY
To register: Call Meredith at 859-391-1227 or email at maplant@alz.org
Fayette County Early-Stage Dementia Support Group
When: 2nd Tuesday of the month
Where: Fayette County Extension Office
To register: Call Sarah at 859-323-6380 or Meredith at 859-391-1227
3. Plan for the future
Talk with an elder care attorney to help organize your financial and legal matters, including your will and power of attorney documents. Discuss your long-term care plans, continued health care plans and end-of-life care with your loved ones. Appoint someone you trust to make sure your wishes will be honored when you are no longer able to handle your own affairs. Failing to plan for the future and waiting too long to implement those plans can have serious consequences.
Use this checklist to develop the necessary legal documents:
- Durable power of attorney for healthcare: This allows the designated POA to make healthcare decisions on behalf of their loved one. ‘Durable’ means the POA remains in effect even after your loved one loses their capacity to manage their affairs.
- Durable power of attorney for finance: This allows the designated POA to manage their loved one’s financial affairs including paying the bills, selling property, contracts for services, making decisions on living arrangements, etc. ‘Durable’ means the POA remains in effect even after your loved one loses their capacity to manage their affairs.
- Advance directive/living will: This document states the medical care your loved one wants should they become unable to express their wishes. This includes:
- Refusing or requesting life prolonging treatment.
- Refusing or requesting artificial hydration and feeding.
- Stating wishes of organ donation.
This document will also state who the appointed Health Care Surrogate is. This is the person that will carry out your loved one’s wishes if he/she loses the ability to do so.
- Will: A document that states who should receive which of the loved one’s assets after death
- Estate planning: Safeguards your assets and ensures tax efficiency
4. Create a safe home environment
As abilities change, it is good to re-evaluate home safety. Talk with your doctor about a home safety evaluation, which can be conducted by a local home health agency. It may be covered by Medicare. This process would include installing grab bars in the bathrooms, adding lighting to dark hallways and stairs, removing throw rugs, rearranging furniture and decluttering to clear pathways. Consider a medical alert system or other technology aids to make sure that help is available when needed.
The American College of Emergency Physicians has a checklist of home safety recommendations.
5. Volunteer for Research
Research is an essential process in developing and testing new medical treatments and interventions. They can help scientists develop new drugs, surgical procedures, devices, or ways to use existing treatments.
For example, everything that has been learned about memory, memory treatments, and memory disorders is known because someone volunteered for a research study. The more researchers know, the greater the chance of finding treatment that will prevent or even reverse these brain changes. Check out the clinical trials that are going on at Sanders Brown Center on Aging - Clinical Trials.
ClinicalTrials.gov is a registry that lists all privately and publicly funded clinical studies conducted around the world. The resource is provided by the U.S. National Library of Medicine and is sponsored by the National Institutes of Health (NIH).
6. Adopt a healthy lifestyle
Making simple changes can improve overall well-being, brain health and help you maintain your independence.
Here are some things to try:
- Exercise regularly. Exercise improves blood flow and can improve your mood.
- Stay social. Spending time with others lessens depression.
- Eat a healthy diet.
- Get quality sleep. Sleep energizes you, improves your mood, and boosts your immune system.
- Learn how to manage stress.
Getting a critical diagnosis will have a profound effect on you and those close to you. Coping with the new realities can make it hard to think beyond the day-to-day. Learning all you can about disease and being proactive in both your current and future care plans can provide a sense of control and empowerment.
Stay well, stay healthy, stay connected,
Terri