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WHAT DO YOU DO WHEN YOUR LOVED ONE IS DIAGNOSED WITH EARLY ONSET DEMENTIA???




Two weeks ago, I received a call from a friend. He told me that he had a life long friend whose wife was just diagnosed with Early Onset Dementia. The friend was blindsided…as most of us are when we have a loved one diagnosed with a terminal disease. The friend did not know where to turn or what steps to take. Its hard to think logically or clearly when your loved one is diagnosed.

A week ago, I received a call from the gentleman whose wife had been diagnosed. This is one of the main reasons I started Loving Kimmy. To be there as a sounding wall, to answer questions, and to be available or support others faced with this horrible diagnosis. There is such a lack of resources and information on Early Onset Alzheimer’s and other forms of early onset dementia. This void is something Loving Kimmy hopes to fill.


I could hear the devastation in his voice. I sympathized and empathized with him. I told him the truth. I shared a few bits of my story of what I went through when my wife Kim was diagnosed. I told him the journey was not going to be easy, it would be really difficult.


I realized that it would be helpful if I created some bullet points of what to do when your loved one gets diagnosed? For starters, do the following:


1. Pray for strength and patience, because you and your family are going to need it.

2. Talk with your family, and close friends. Bring them up to speed. You will need their support. That being said, don’t be upset if you do not get some support from some people. Everyone processes this reality differently. Be patient.

3. Ask the doctor for the required paperwork to apply for Social Security Disability. Don’t be ashamed of this. You paid into the system and you are going to need help. As an elder care attorney said to me, “You won’t work as much as you think you will, you won’t be as productive as you think you will be, you will not make as much money as you think you will.” Early Onset Dementia qualifies as a “fast track” disease and the Social Security Department will process your disability claim quickly and often pay benefits retroactive to your initial diagnosis. The money you get can be used to help offset a change in income, medical bills, and more importantly, help with the costs of a caregiver or assisted living facility. If you have children under the age of 18, you will get additional funds on their behalf. Be the designated Payee for all.

4. Start Creating Memories. Take trips. Take photos and videos, especially if you have younger children. The truth is, you do not know how much time you will have with your loved one. The average life span for someone diagnosed with Early Onset Dementia is just seven years. I know of some cases where the person was gone in three years. In my case, my wife Kimmy is still alive at 11 years since diagnosis. If your loved one is able, suggest they write letters to their children or record video messages that can be read/viewed later on important days such as graduations, birthdays, weddings etc.

5. Look for support groups. Seek out counseling with a therapist who is experienced in grieving, depression, and family matters. Visit us at lovingkimmy.org. We will soon have a forum where people and experts can chat and discuss issues etc. Ask family members who may be involved with helping to also go to support groups so they can learn about the disease and how it will affect everyone.

6. Take care of yourself. Find time away from your loved one to rest and relax. Take a day or weekend trip by yourself. Play golf or go out with friends. Understand that more than 50 percent of the time, a caregiver of a loved one experiences a healthy issue before the loved one they are caring for does!

7. Follow us on Lovingkimmy.org. We will be providing updates in care, drug trials, and resources on a regular basis. In the near future, we will have a forum and a support group.




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