August was a most fun month starting with a week on the Outer Banks. Great weather, good food (we stayed at a motel this year so NO cooking for me!!) poor shopping BUT we did get to see a Native American Pow Wow. While the tribe was small they were loud in voice and drums. A most interesting way to spend a cloudy day. Since most Alzheimer’s people do not sleep well I bought a handmade Dream Catcher to capture what dreams I do have. When I’m relaxed, with no decisions to make my mind feels settled. Speaking of decisions one big problem I had this vacation was packing – that has NEVER been a problem for me as we made a packing list years ago but the frustration was overwhelming – then came the meltdown.
I still try to stay alone as new conversations stress me and I find myself rambling on and on. Questions like “Where are you from?” are OK but then specifics start and I realized I’ve been talking, again, about things that either did not happen or I have the dates wrong and then I look to Tom for help.
If you have Early Stage Alzheimer’s you can understand these little frustrations. As I’ve tried to explain to friends and family & several times in my BLOG – they may experience things similar to this but it’s not the same. It is so hard to explain and with most folks I just give up and listen to how they do the same things and how we are all getting OLDER (remember that Alzheimer’s is not an old person’s disease) and I walk away frustrated that they do not understand. What I experience and what you may experience are so totally different. This is one of the main reasons I do not tell many people. We had a discussion in our group again about telling friends, family and neighbors but the above is why I am very select in who I tell. Here is where I am:
- Noticeable problems coming up with the right word or name
- Trouble remembering names when introduced to new people
- Having noticeably greater difficulty performing tasks in social settings forgetting material that I have just read
- Losing or misplacing a valuable object
- Increasing trouble with planning or organizing
I decided to not be so select as discussed in my group meeting and I let my small neighborhood know what was happening to me through an email newsletter that our Board sent out for me. I included my story that is very personal to me as well as links to the walk, donating and information about the raffle tickets. Our support group has talked about sharing and I never wanted to take this step but decided “What the heck!” I hoped to hear from more neighbors but we never know what goes on in other peoples homes. I hope to educate, not irritate. I will still be there to help any neighbor who needs me. I will support them.
On to better things like my two youngest Grandchildren who have no clue that anything is wrong with me and that makes me happy. As long as I keep driving and remember their names they’re good. Last month we did a special lunch for one child at a time and it was wonderful. They got to pick the restaurant and off we go, just the three of us. We are doing one last day at the River Beach and another special lunch before school starts. It’s wonderful and carefree and I can be ME. It is wonderful that Emma loves her GrandPa Redd so much and I’m ignored but Riley loves me more in his own funny way – always telling me that I smell good and that he will hug and love me even when he’s a teenager. I pray every night that my mind will be there. I so want to see both of them graduate from high school and head off to college. This is where my Dream Catcher comes to use.
Our Williamsburg EASE Carepartners Walk is October 25th .
Please join to walk with ME!! Donations are always accepted but not required to walk – just wear purple. I also have raffle tickets – $5/each for a 2014 RED Camry.
Link if you want to sign up to WALK: http://act.alz.org/site/TR/Walk/General?pg=informational&fr_id=5706&type=fr_informational&sid=18128
If you just want to donate to my cause: https://act.alz.org/site/Donation2?idb=1731837125&df_id=21953&FR_ID=5706&PROXY_ID=9353436&21953.donation=form1
Tom and I have been asked to speak at the October walk and we will also do a local radio interview. I will place the YouTube link in the next BLOG. I am so excited to be a part of this wonderful organization.
Our vision is a world without Alzheimer’s
If you have any problems or questions please email me: firstname.lastname@example.org