- Youngest Son went to religious school and did his Madrichim stuff and he spent the afternoon at the JCC playing in the BBYO Flag Football championship. And this evening is all about watching football!
- Husband went to the grocery store to get a brisket and cooked it for us in the crock pot. He also spent the afternoon at the JCC at the fitness center doing his daily work out. Then Husband spent some time cleaning the never ending cascade of acorns off our back porch.
- I worked some getting ready for Monday meetings and then took a long walk down Northaven Trail with a friend who generously gave her time and more importantly gave me motivation.
- We had a family sit down lunch with TJ's shrimp that Youngest Son and I picked up along with a veggie stir fry that Husband cooked. And then we got to sit down again with Youngest Son at dinner.
- Right now, Husband and Youngest Son are making a Braum's run for dessert!
A typical day in Northwest Dallas ... well maybe only typical if you are Jewish but the important part is it is a "normal" day. I appreciate each one of these days. Every single one.
And the last week has felt slightly less scary. I am trying figure out why and think there are several things going on ...
- Husband was invited to a museum, an art exhibit and movie by three different friends this week. This is the MOST helpful gift we can receive right now. Tom's intellect and curiosity is intact and he is terrific company. Getting Husband out of the house, socializing and staying mind-active is a high priority which I simply cannot do alone.
- A friend came over and sat with Husband for several hours to get his SSDI application submitted. HUGE relief to get that submitted as it impacts our financial health and Husband's eventual Medicare eligibility (more on this further down.)
- I interacted with lots of caring friends and family in all kinds of ways: phone, texts, social media, dinner date, in person, walking, meetings. I did not always hold it together but that was okay. I was fortunate as some patiently listened to me; I needed to talk - allot obviously - lol! Others shared information with me to help me establish our new normal. And many just sent kind words of support.
- I joined Early-onset/Young Alzheimers Female Spouses Caregiver Support Group on Facebook. This courageous group of women has already provided me a place of understanding, humor, love and support in a safe closed community. In full honesty, some of the posts are heartbreaking and tremendously scary. But it is more of a place where I can gather practical information about things I just would not think about yet that are the realities of Husband's diagnosis.
I will end with a PSA on SSDI and Medicare ...
Representative Colin Allred called me today to ask for 2020 campaign support. I am a big Colin Allred fan so I am honored to have the opportunity to talk with him directly. This timely phone call gave me a chance to share with him my latest issue of the heart and human rights.
We have learned that the over 8.5 million Americans qualifying for SSDI (Social Security Disability Insurance) must WAIT TWO YEARS to qualify for Medicare. This is beyond ludicrous and cruel. The SSDI approval process is rigorous, difficult and stressful and can take years. Once a family finally gets the SSDI qualification then their DISABLED loved one who cannot work must wait two years from SSDI effective date for Medicare. How is this okay? All I have found in my research is that the Congress has put in this two year waiting period policy in place only to save money. What the heck are disabled people supposed to do for affordable healthcare? And what about the disabled people with no family to help or care for them?
Representative Colin Allred listened to me with compassion as I shared the information on this issue. He too has experienced the tragedy of Alzheimer's in his family so knows the path of this terminal illness. He did not know about the two year wait for Medicare after SSDI granted. His first reaction was this must be a mistake; sadly, I doubt it. He gathered the information and we discussed how I can also submit to his office through the established process for collecting issue input from constituents. We will do that for sure. One would hope there would be bipartisan support to make SSDI and Medicare eligibility effective at the same date. SO, political activists, add this your list of issues!
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| Family Dinner: Husband's tasty brisket, avocado/cucumber/citrus salad, oven baked potatoes and fresh sliced strawberries. |
