90 going on 3 … what does that mean? There is a fine line for caregivers to take as their loved one’s dementia progresses. To honor and respect the person you want to treat them as an adult, capable of making decisions for themselves. Reality often comes to bite you when you realize their choices […]
I can still remember the days when the kids were small and how excited they were to start their first day of school, well, mostly Bradley . . . Asheton not so much. The morning would be busy with making sure lunches were packed, school supplies were in the backpacks, the-first-day-of-school-new-clothes were ironed (Shannon doesn’t let anyone walk out the door looking like, as she calls it, a raisin) and then we had to make sure we were ready for work. It was hectic. It was exciting. It was our life!
Thanks to the fact that Alzheimer’s has not yet taken my long-term memory, I can still recall these things.
Flash forward to today. It’s about 7:15am, Shannon is getting ready for work, Dallas and I are sitting in my recliner watching the news. I hear one alarm go off and then another. Doors start to open and close. I know Asheton and Bradley are now up and about and getting themselves ready for the start of a new school year. With Asheton in College and Bradley in his Sophomore year in High School, it’s a far cry from when they were small.
Shannon leaves for work, Asheton and Bradley are talking in the kitchen and instead of cereal and juice, it was coffee and anything in the refrigerator they could either eat standing up or in the car on their way to school. (Asheton now drives Bradley to and from school because my driving is limited to just around the immediate area.) They hug and kiss me goodbye, get in Asheton’s car and away they go.
I know working parents have looked forward to this “First Day of School” for they don’t have to worry about summer day-care; being concerned with who’s doing what to who and why; settling arguments over the phone and all that goes on at the house during summer break.
Then there are the stay-at-home parents that once the kids are out the door they may breathe a big sigh of relief; dance a jig; excitedly make a grocery list so they can go shopping ALONE; have the computer/laptop/iPad/Tablet to themselves; pleased to not hear, “MOM! / DAD! every 5 minutes.
I know I’m generalizing and this doesn’t pertain to everyone but you get the picture.
I included the sentence above because the above scenarios do not pertain to me.
I’ll tell you why.
I have found with Alzheimer’s, I don’t like being alone. I’m pretty sure I have not liked being alone all my life so I will say instead, Alzheimer’s has MAGNIFIED my desire to NOT be alone.
Having Dallas around has helped me cope with my loneliness a bit but, although Bradley and Asheton spend the majority of their time in their rooms, I’m comforted in knowing they are here. I’m not sure they are as comforted as I am for I sometimes tend to hover. I don’t mean to do this but from researching the topic, I have found that hovering is a side effect of Alzheimer’s. Our loved ones, especially our spouses, tend to be a sort of “security blanket.” I guess when Shannon is not around, I then turn towards Asheton and Bradley.
I tell them to tell me so I won’t do it but since my short-term memory short circuits, I continue to do it. They do tell me at times and they do it politely so as not to hurt my feelings. When I catch myself, I back off on my own. I get mad at myself for doing this because I know they all value their privacy. That makes it a bit difficult when you have 1 person who is dependent upon the other 3. The last thing I want to do is to be more of a burden on them than I already am. It’s a slippery slope this dependent thing.
So, this “First Day of School” thing has me feeling a bit anxious. I know they have told me their schedules and such but if I don’t write it down it becomes like dust in the wind. Well, I forgot to write things down. DUH!!!
Shannon, Asheton and Bradley are very good about keeping me informed of schedules and such so my anxiousness levels stay at a minimum. Since Asheton tends to write these things down for me, I will have her write some things down on my message board when she gets home. (of course I will have to make a note to remind myself to ask her to make a note. Geeeezzzz this gets to be exhausting.)
Anyways, when I am anxious or, experiencing some other emotion, Dallas sticks close to my side. I am more than thankful for his presence. The link below is a video I made about this subject.
The advantages of having a pet when you have Alzheimer’s
So, this “First Day of School” thing has changed a bit over the years. This is due the ages of these young adults who live with us and because of my Alzheimer’s. The thing that gets me through it all is my support system, the BRASH System. (BRadley, ASheton, Shannon) Yeah I know, I still have some of my creativity left.
As a side note, if you ever want to see how much of unnecessary knowledge I still have, come by and watch Jeopardy with me. For some reason, I’m really good! Lol
So, whether you’re a working parent, a stay-at-home parent, or anyone else who has the job of raising these wonderful human beings called children, I hope your, “First Day of School” thing was a good thing.
Until Next Time,
I Have Alzheimers, BUT It Doesn’t Have Me!
Picture yourself in a movie. You’re standing on a sidewalk…in a big city…at a busy intersection. You look around, everyone and everything around you is flying by at the speed of light. You try to concentrate but everything is “blurry-like,” happening so fast, concentration evades you.
Well, if you’re like me, you’re not in a movie. You’re in reality, under the age of 65, living with Early Onset Alzheimer’s Disease or some other form of Dementia.
I know I can’t speak for everyone, for everyone’s situation is specific to that individual, but I’m pretty sure certain similarities can be found.
For instance, you’re at a family gathering. These are people you grew up with, spent most of your life and time with, laughed and cried together, supported one another in times of need. You get the idea. Now, you’re sitting on a sofa, surrounded by these very familiar people and you cannot get into the conversations. You hear what’s going on and, under “different circumstances,” you would’ve jumped right in to add a comment, an insult or a funny remark, however, by the time you are able to form a complete thought, the conversation has continued at light speed and your comment or funny remark would’ve made no sense. Or worse, when you do try to jump in, you stutter so bad, everyone turns and stares at you. So you just sit . . . and listen . . . and try to keep up.
I experienced this at Easter this past year. One of my brothers-in-law noticed my embarrassment when I stuttered trying to jump in the conversation. ” He came up to me and said, “Hey, we’re all family here. Nobody’s going to judge you. Stutter away!”
This also happens in everyday life. Conversations with your immediate family are often interjected with, “you’ve told me that before,” or “oh, I remember when you asked me about that yesterday.” They do it in a way that is not insulting, but just as a way of saying, “we understand and we love you.” At least that’s what my family does with me.
I try to find humor in this by saying things like, “I know I told/asked you yesterday, I was just double checking. DUH!” Or when my wife and I are watching a movie and I get so excited or crack up laughing at a certain part, she will turn to me and say, “do you not remember seeing this movie a couple of weeks ago?” I say “no” but then I say, “you know, me having Alzheimer’s will save you a lot of money. You can buy me only 1 movie and I will watch it every few weeks and it will be like seeing it for the first time!”
Some people don’t understand humor when it comes to Alzheimer’s but, when you’re making fun of yourself and not others, well, I don’t see anything wrong with that.
I have always loved and embraced humor. Thankfully, my friends and family know and understand this and laugh right along with me. They send me jokes, funny sayings, cartoons … all Alzheimer’s related.
When I sent an e-mail to my brothers and sister, telling them of my diagnosis, my oldest brother sent back a response saying, “just letting you know, you sent this yesterday also.” After laughing hysterically, which I needed to do in such a bad way, I knew things were going to be OK.
One of my childhood friends will say, “hey, do you have that $20 you owe me?” Of course, I immediately go into panic mode, trying to remember whenI borrowed $20. This is a friend that will drive 3 hours, each way, just to come spend a few hours with me.
Then, as the saying goes, “Along with the GOOD comes the BAD!”
This is what I call my dark or foggy times. It happens with no rhyme or reason. It just comes along, punches me in the face and, well, things get a little dark.
It’s sort of like spontaneously combusting, except I burst into tears instead of fire.
I’ve always been an emotional person but since developing EOAD (Early Onset Alzheimer’s Disease) it has heightened the emotion. Something could set me off as simple as a baby or puppy video. Or, a fond memory will pop into my head of “happier, more normal times.”
Watching a sad or emotional movie? FAGHETTABOUDIT!!!! I literally fall to pieces. I cried for about 20 minutes after watching “American Sniper” with Bradley Cooper. (if you haven’t seen it, it’s a must see, but, I digress)
Then there are the times when I don’t know why I’m crying or even when I’m crying. Tears are now just so commonplace, I don’t even recognize that they are streaming down my face. Bizarre, I know, but Alzheimer’s is a very bizarre disease.
I know I’ve probably said this a lot (and yes, I do remember saying it over and over again! lol) but I am not saying all of this to gain sympathy.
I DO NOT WANT SYMPATHY NOR DO I WANT ANYONE FEELING SORY FOR ME!
I am merely trying to give you a perspective of what a day in my life is like.
DO ALL OF THESE THINGS HAPPEN MULTIPLE TIMES A DAY? YES!
EVERY SINGLE DAY? NO! (but more than not)
DO I WISH THIS ON MY WORST ENEMY? NOT “NO” BUT “HELL NO!!!”
I took on the responsibility of becoming an Advocate for Early Onset Alzheimer’s Disease. I don’t have the world stage of a Maria Shriver, Seth Rogen or other folks who are able to advocate in a much bigger way than me but, I do what I do for it is my passion.
In my Advocacy speech I say, “this is the best job I have ever had in my entire life . . . that I don’t get paid for!”
Trust me, due to my Alzheimer’s Disease, I’ve met some of the most wonderful, courageous, artistic, compassionate, beautiful people that a paying job would have never allowed me to do.
You gotta see the positive!!!
Until next time . . .
Tomorrow I may not recall,
The things I should have said today.
I can’t help it, it’s just how it is,
So I don’t hold back saying what I want to say.
I may not always remember your name,
But somewhere inside, there’s a memory.
With a little coaxing it comes to the forefront,
Slowly appearing, again becoming a reality.
I hate that I don’t appear to be who I once was,
But inside, I’m still me.
My reality may be a little skewed and bent,
My speech a little stuttered, not flowing and free.
These are just minor setbacks,
So I don’t need nor want your sympathy.
Yes, I’ll get worse over time,
But don’t worry, Alzheimer’s isn’t contagious, you can catch it from me.
Just remember, life is short and unpredictable,
You never know what tomorrow may bring,
So express the love you hold in your heart,
Belt out that song you so badly want to sing.
Brian – 4/26/15
If you haven’t read the blog before this one, you may want to read that one first.
First of all, thanks for the outpouring of support. It’s appreciated more than you know.
Second, thanks to those of you who have sent me information and articles about Alzheimer’s.
My sister-in-law Jessica sent me an article that was recently published in Good Housekeeping.
It’s entitled, “My Husband Was Diagnosed with With Alzheimer’s – at 36”. Here’s the link to the article. http://www.goodhousekeeping.com/health/womens-health/early-onset-alzheimers
While reading the article, I recognized a lot of what I have been going through. According to Shannon and Asheton, I’ve been exhibiting signs for the past 3 years. I have only recently noticed the signs myself especially while driving.
When driving to locations that are very familiar to me, I tend to lose my way. It is quite embarrassing as well as frustrating. I used to get very anxious and call Shannon in a panic. Now, I use the GPS on my phone to get me from point A to point B. I don’t do it all the time because I still want to use my brain power. Yes, I still get lost and it takes me an incredibly long time to finally figure out where I am supposed to be going, but when I do, it is quite a thrill.
Yeah, it’s the little things that mean the most!
I have exhibited many other signs like repeating the same story or conversation over and over again, repeatedly asking the same questions, forgetting things that were just told to me, forgetting how to cook something I have been preparing for many years, etc… There are more but I won’t bore you with the details.
If you’re interested in finding out more, here’s a link you may find interesting about Early Onset Alzheimer’s.
The most glaring discovery about Alzheimer’s is it’s no longer an older generation disease.
Here’s hoping you will have an amazing day and an even better tomorrow!