Month: February 2018

By:  Betsey

What do you do when a parent or loved one is first diagnosed with Alzheimer’s Disease?  For us, it was an overwhelming and scary time. We didn’t know where to turn or what to expect.

Below are our best tips for the time right after the diagnosis.

1.  It’s Okay to Grieve

It is okay to feel shocked and overwhelmed after the diagnosis. I remember when I heard the news, I couldn’t help it, I kept googling my mom’s specific type of Alzheimer’s Disease.  With any illness, people warn:  Do Not Google, but I couldn’t stop! There was no good news. Nothing I saw made me feel better but I wanted to try to understand what was happening.   It’s scary because you have no idea how much time you have but you do know that there is no recovery.  It is okay to grieve and take time to get used to the news in your own time.

2.  Forgive Yourself

As I detailed before, for a long time I felt very guilty. I had noticed the changes in my mom but didn’t consider Alzheimer’s.  I teased my mom for forgetting things. I felt like a jerk. It took me awhile, but eventually you have to forgive yourself and focus on the road ahead.

3.  Find a Good Doctor

Find a neurologist that you are comfortable with.  Get recommendations from your family doctor and do your research. It is okay to visit a few doctors to see who the family is comfortable with.  Lately, when my mom has a neurologist appointment the entire family goes.   It is nice to develop a relationship with the doctor and all of their staff as you will be spending a lot of time together.

4. Get Involved with the Alzheimer’s Association

The Alzheimer’s Association is wonderful and provides many resources. They have support groups, a helpful website, and a surplus of reading material. In the beginning my Mom signed up for the program where she was matched another person who had also recently been diagnosed with early on-set Alzheimer’s Disease. Through the Alzheimer’s Association, they would call each other at specified times to talk about what was going on in their lives and I think she enjoyed this program. Also, at various times, all of us participated in different support groups.

The most beneficial thing we did early on was set up a care consultation. Through this program a trained consultant from the Alzheimer’s Association met with our family to answer questions and provide resources. Looking back, I will always remember this time as the moment I realized how brave my mom was. She was still very much aware of what was happening at this point. She sat there  at this meeting as the care consultant discussed the changes she and we all would be facing. The care consultant advised that my mom stop babysitting my nephew immediately. It was devastating news to her. She loved babysitting my nephew but she never would have done anything to put him in jeopardy.  She didn’t argue or push back but I was horrified at how awful this must have been for her, sitting there, taking it all in.   I will never forget that meeting and thinking the whole time how  I never knew how brave my mom was and wondering what else I didn’t know about her.

5.  Make an Appointment with an Attorney

Find an attorney that specializes in elder care and estate planning and make an appointment right away. It may be hard to imagine right after the diagnosis, but a day will be coming soon where your loved one won’t be able to make their signature and will not have the cognitive function to make necessary decisions. It is important to get key documentation and other long-term plans in order now.

6.  Start Documenting

From day one, start documenting the changes that occur with your loved one and when they happened. Keep a timeline of key events and mile markers as later on you will want to reflect back on this time and see when certain changes occurred. My sisters and I discuss this all the time and we wish we had kept a better timeline following the diagnosis. We have tried to go back and piece together key periods and changes, but it is difficult, so start right away.

7.  Reconsider Driving

At first, we thought Mom was totally fine to drive. She seemed like herself. She maybe couldn’t do extensive math problems but surely she could drive up the street to Walmart? We fully intended to let her drive around to her normal spots initially and now that sounds totally crazy. Luckily, at a doctor’s suggestion, we did a driving simulator test early on. My mom’s reflexes were slow and her nighttime driving was very poor. The day my mom completed the driving simulation test was the day my mom stopped driving. That was a difficult time as my mom was very much aware of what was happening to her and she was sad to lose her independence, but it was definitely the right decision.

8.  Run for the Sun

Reconsider your loved one’s bucket list immediately. Has she always wanted to go to Paris? See the Grand Canyon? Make it happen immediately. Plan a trip, plan a family reunion, plan a celebration, and do it now. A few months after the diagnosis, we surprised my parents with a trip to Italy.  My mom is a proud Italian and had always wanted to visit.   Like many people, my parents had saved such a trip for retirement.  However, their plans accelerated quickly. When they went to Italy it was early enough that my mom was physically healthy and was able to enjoy the trip to the fullest extent. So, early on, go for it. Make a plan to cross items of your loved one’s bucket list and revise your own bucket list while you’re at it!