Spring Cleaning in Summer

Memory is the only way home. ~ Terry Tempest Williams

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This post is not about cleaning per say, but more like a rearrangement. You see, Maureen and I shared an office (our spare bedroom) and it worked for a while but with both of us having ZOOM Calls, conference calls and all kinds of other meetings, it began to be a distraction. So, since I am perfectly comfortable sitting on the sofa with my laptop, I decided to move out of the office and make the sofa my office.

The reason why I bring this up is because it shows that working together for a common goal is much easier than not.

What also happens is we find things that mean a lot to us that had been misplaced. These things can be be of little significance and some can be extremely memorable. One such memorable item appeared.

Years ago, my Step-Daughter, Asheton, gave me a book entitled, “The Book of ME” A Do-it Yourself Memoir. From what I remember, she gave it to me so that I could record events, celebrations, etc, things I would not remember on my own. She knew how very precious memories were to me and she wanted to give me a method to assist me.

It has long been an axiom of mine that the little things are infinitely most important.” ~ Arthur Conan Doyle

With all the moving I have done in the past several years, the book was misplaced. I would search for it every now and then but would come up empty handed. I was so scared it was lost . . . that was until 2 days ago when it appeared. Maureen came across it when she was looking through some boxes. She knew how important Asheton is to me for I talk a lot about her and how much I miss her. Being she thought enough of me to get me a book I could store memories in was so very loving and caring on her part. It’s just who she is.

Throughout the book, there are quotes from different writers and authors so I may place one here and there . . . like here!

“Do not trust just your memory; it is full of holes; the most beautiful prizes slip through it.” ~ Georges Duamel

As I started reading things I had written, (starting about 7-8 years ago, when i was 52 or 53 (pre-diagnosis, but from what I was told, I was already showing signs of memory loss and forgetfulness) I felt as if I was reading someone else’s journal. I knew I had written on the pages for I recognized my handwriting but it still seemed like it was written by someone I didn’t know or remembered.

One reason, besides the handwriting, I know it was me is when I answered this question . . . “What signature clothes or accessories do you usually wear?”
I replied, “Flip-Flops, shorts and t-shirts, tropical shirts, dressy clothes but only when I have to. The rest of the time I am just, “Casual Brian”.
I can’t remember who gave me that nickname but I believe it was one of Asheton’s friends. All I can say is, turning 60 in September, I’m proud to say I’m still “Casual Brian.”

“I didn’t really say half the things I said!”~ Yogi Berra

There’s a note in the book that I wrote to myself that states, “Asheton gave me this book. She said it wasn’t because I was losing my memory, but just so I can remember things in the here and now. What a beautiful gesture!”
That speaks to the person she was and still is.

Every now and then, a person comes into your life and changes it forever. One of those people is Asheton Gloria Hill. I have a vivid memory of when I first met her and Bradley, Shannon’s children. It was a Christmas Party at Shannon’s house for the Advertising Department of the Pensacola News Journal, where I met Shannon. I found a comfortable place on the sofa so I could see and interact with everyone and sitting at my feet was this beautiful, blonde-haired 12 year old girl. At one point during the evening, she looked up at me and said, “you know, you can never leave here!” I asked her why, and she said, “you have brought laughter into our house!” and she hugged my leg.

“Write down the thoughts of the moment. Those that come unsought for are commonly the most valuable.” ~ Francis Bacon

I hope I never forget that memory. That reminds me, I better write that memory in my book so that I WON’T forget it.

Asheton and Bradley lost their Father in 2009 and that was a very tough time for them both. During the following years they unfortunately had a front row seat to a couple of my surgeries (back and neck) as well as the beginnings of my Alzheimer’s Journey.

I was a different person during that time. I was very angry, confused and frustrated. I was a bit of an ass during that time and they (as well as Shannon) were there to witness it all. It is said so many times, “if I could go back in time . . .” Well, until the #BacktotheFuture DeLorian can really go back in time, we all have to live with our consequences. All we can do is ask for forgiveness.

Asheton is now is living living in Oregon with her Partner Chris. I miss her terribly but I know she and Chris are very happy. My hope is that I will see her again one day while I still have my memory.

Memory is way of holding onto the things you love, the things you are, the things you never want to lose.~Kevin Arnold

Until that time, I will, once again, start filling up my book with memories from long ago as well as memories from today, tomorrow and . . . . .
I owe that to myself as well as to that little 12-year old, blonde-haired girl I met one Christmas in many years ago and who has now turned into a beautiful, confident and happy woman!

Until Next Time
PEACE

B

Somewhere Between the Mashed Potatoes and Strawberries!

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What do you mean Mashed Potatoes and Strawberries don’t go together? Have you ever tried dipping those sweet, delicious strawberries into the creamy, buttery mashed potatoes? No? Neither have I and I doubt I ever will for I can just imagine the taste. YUK!!!

Although the title of this post may make you think I’m going to write about food, you would be mistaken. It’s more like things that don’t seem to go together but as time goes on, they do. You’ll see.
This brings me back to a previous blog post “Changes in Lattitudes, Changes in Attitudes” https://bit.ly/2ZOaY0G where I referenced the opposite traits of the Cheetah and the Sloth. If you haven’t read that post, you should, but if not, it’s OK.

When living with someone who is structured, business minded, intelligent, organized, etc . . . and the other individual is ME, well how could anything go wrong? Throw in 2 different types of Dementia as well as other medical issues, that’s when things get interesting.

Let me explain so you can see the full picture . . .


Maureen wakes up at the crack of dawn, has her Chai Tea, heads into the office and starts working. I, on the other hand, have no idea what dawn looks like (other than the dish-washing liquid) and I will usually wake up long after dawn has turned into mid-morning. I go into the office, barely awake she tells me good morning and then immediately heads straight into telling me her, my, our schedules for the day. I usually have no idea what she is talking about for I don’t remember things from one day to the next, but if she says it’s on the calendar I just nod my head and then head to the kitchen to pour myself a cup of the the Morning Nectar of the Gods, otherwise known as COFFEE, which she had already prepared for me when she got up. All I have to do is flip the switch and that delicious aroma fills the kitchen.

I then sit down on the sofa, open up the Calendar on my phone and try to make sense of what I see on the calendar and try to remember all she said a few moments ago and appreciate all that she does for me. Since COVID-19 as well as some progression of my Alzheimer’s, I would not be able to run my own life as structured as she lays it out for me. She keeps my calendar organized, my medicines organized, my appointments organized, and so much more, all while running her own business. How she does it, I have no idea, but I am so very, very grateful.

So, what does this have to do with Mashed Potatoes and Strawberries? You’ll see.

I remember back in the early 70’s when my sweet, little niece would demand that I sit and watch Sesame Street with her every morning while she ignored her own breakfast and ate mine. Although it drove me crazy sometimes, I look back and I cherish those memories and wish I was back in the 70’s to relive those moments.
Anyway, during one of the teaching moments, Sesame Street characters used to sing a song, “Which one of these things is not like the others”? or something like that.

I bring this up because that’s the way some of the morning conversations Maureen and I have during “MY” first thing in the morning.
Now granted, she has already been up for several hours and her brain is moving at full capacity. Depending upon how I wake up (foggy, dizzy, sleep deprived, etc…) she will start out as she usually does on one topic but then goes right into the next one. The problem is, I’m still trying to digest what she WAS talking about as she is already into topic #2.
I need to say, she is doing nothing wrong. I have asked her from the beginning of our relationship to NOT treat me as if I have Alzheimer’s and she does that very well. When she switches topics. and goes straight into the other one without missing a beat, she doesn’t do it to be cruel, it’s just the way her mind works and because of my requests to not give me any special treatment.

I’m not sure my mind ever worked like that so in a way, I become quite fascinated as to how she keeps things straight. Any way, after she changes the topic, it takes me a little bit to realize that not only did she stop talking about one thing and switched to another, she is already half-way through topic #2. She sees the look on my face, realizes she has lost me and she says, “where did I lose you?” I reply,”somewhere between the mashed potato’s and Strawberries!) That’s my way of saying, “my brain was filling up with information (mashed potatoes) and all of a sudden, in comes another completely different topic (she mixed in the strawberries) that has nothing to do with the topic she was just talking about and it all mixes together into one big lump of instant brain fog. Then here comes the Sesame Street song in my head (Which one of these things is not like the other“?)

“Yes you did but I don’t know where” which is why I started saying, “it was somewhere between the mashed potatoes and the strawberries.” Although they are completely different I’m not really sure how I came up with that.
Welcome into my head.

Other than they both come from the ground, they have never appeared on any menu as any entree’ or on any plate I have ever been served. All I knew it was the first thing that popped into my head that gives an example of two things that were opposite. Plus it always gets a laugh.

I don't know where" which is why I started saying, "it was somewhere between the mashed potatoes and the strawberries." Although they are completely different I'm not really sure how I came up with that.
Welcome into my head.

Maureen and I learn things about each other, sometimes daily. It helps us both to understand the other one better. Will it stop her from giving me my morning briefing? No because I have come to look forward to it. Will it change the way she delivers it to me? Maybe . . . Maybe Not. It depends upon whether or not she remembers. If not, Strawberries and Mashed Potatoes will fly!

I guess what I’m trying to say is, there is a difference between “KNOWING of” someone with a Dementia-Related Illness and “Living 24/7 WITH someone with a Dementia-Related Illness. I know there are experts, or who claim they are experts when it comes to knowing all there is to know about Individuals with Dementia and some do a very good job of explaining things, but, in my humble opinion, if you want to know from the experts, talk to either a Care Partner / Life Partner or go straight to the horse’s mouth and talk with someone who is “LIVING WITH a Dementia-Related Illness.

Either way, be prepared to be served some Mashed Potatoes and Strawberries because if you have met ONE person with a Dementia-Related Illness or One Care Partner, you have only met ONE person!

Vulnerability and Dementia

Vulnerability is Not a Strength - Mobius Executive Leadership

When I start a new blog post, I always try to think of something I already know rather than something I would have to learn. That’s not to say, I can’t learn anything new, it’s just that I am more confident when I speak or write about something I already know. I also like to use definitions so that my readers (as well as me) fully understand what I’m talking about. With that said, the definition of Vulnerability is “the extent to which changes can hurt or harm a person; the quality of being easily hurt or attacked

What brought me to write about this topic was due to a conversation Maureen and I had just the other evening. You see, for those that don’t know, Maureen and I got into a relationship long after I was diagnosed with Alzheimer’s and as recently as last year, diagnosed with Vascular Dementia. (I could spend a whole blog post on “ALL” the things I have wrong with me, but as Maureen says, “you’re just bragging, now” so I try to keep it simple. 🙂

One of the things Maureen recently brought up to me was, the future. The conversation started with talking about how our relationship was going to change as I went further into this disease. I got very angry and yelled at her, “I don’t want to talk about THAT!” She asked why and I said, “someday, you are going to have to make ALL the decisions for me because I won’t be able to make them for myself and I don’t want to think that right now. Our relationship is going to be different when you are making those decisions.”

That’s when Maureen had an AH-HA moment. She said she went from worrying what it was going to be like for her to understanding what it will be like for me when that time comes. What it will be like for me is Vulnerability.

Here is a prime example of my trust in Maureen. several months ago, I was asked to speak at Mease Manor, a Care Community here in Dunedin, FL. I actually don’t remember the details of this day, however, Maureen, being my BUB (Back-Up-Brain, a phrase I borrowed from @KateSwaffer) told me that we were going to Mease Manor where I was going to speak. Even though I had been there 3 times before and had made some wonderful memories and contacts with a number of people (especially Quyen Trujillo) I had no recollection of where Mease Manor was nor did I have any idea what I was suppose to speak about. All I knew was Maureen said we had to go there and I trusted her enough to just say, “OK” for I knew she would not lead me into any harmful situation. That’s “MY” definition of Vulnerability! 

I’m going to paraphrase for I don’t remember exactly what she said and since she is not here right now, I can’t ask her. It went something like, “you know, you put yourself in a vulnerable position, moving away from everything and everyone you knew in Pensacola to come here to Largo and start your life with me!”

Not once did I think Maureen was going to take advantage of me for the mere fact that the $1.10 I had in my bank account and my Social Security Disability was my only income, I knew she was joining me in this relationship for other reasons (my dashing personality and good looks) and I felt comfortable with that. Now, after journeying together down the Alzheimer’s Highway for a while, we have formed a very strong, trusting and loving relationship and my feelings of vulnerability have decreased to a point to where they are almost non-existent. 

I know that I am going to still experience some insecurities when Maureen is out on business appointments and I have to make decisions on my own here at home. Those decisions won’t be earth-shattering but I will still still stress over deciding what I should do.

I’ve always been an anxious person going all the way back to my childhood and it has become more prevalent now with my Alzheimer’s. What I don’t worry about is when Maureen returns home, I can discuss my decisions with her and she can then help me sort things out. She’s really good about doing that. What she won’t tell me is, I’m wrong but she does enjoy laughing at some of the decisions which makes me feel good.

Another thing I love about our relationship is that we do a lot of planning. Maureen runs her own business, Caregiver Support and Resources, so she has to stay on schedule. It helps me to stay focused on what has to be done that day, and what I can start preparing for the next day. It’s something I was never good at before but now, I am thankful that I’ve grown accustomed to it.

I know I am going to be faced with more vulnerabilities as I travel along on my Alzheimer’s Journey but having Maureen as my “Travel Partner” (I guess I’m going to have to add that to her Titles) I feel confident that she will help get me over any hurdles that we face.

I would also like to add, if this topic resonates with you would like to reach out to us, please feel free to leave comment, drop us a line @dementiastrong@gmail.com our visit or Facebook Page @https://www.facebook.com/WeAreDementiaStrong/

Until Next Time . . .
PEACE!
B

Are There Do’s and Don’ts When it Comes to Dementia?

Are There Do’s and Don’ts When it Comes to Dementia?

Shortly after I was diagnosed with Alzheimer’s Disease in 2014, I came up with my tag line, “I Have Alzheimer’s BUT . . . It DOESN’T Have ME!!!”

What that meant to me was I didn’t want to be identified by my Alzheimer’s, rather, I still wanted to be identified as Brian. Well, things didn’t quite work out that way. Instead of continuing to identify me as Brian, it felt like more and more people started saying their good-bye’s. Phone calls, text messages, e-mails just went unanswered. It was a very lonely time and some days, it still is.

I use Social Media as a way to keep up with the latest trends, news, discoveries and anything positive I can find regarding Dementia-Related Illnesses. I also use Social Media to remain . . . SOCIAL. Most days I receive the “Memories” post that reminds me of past postings, photos and, of course, memories. While I enjoy looking at some of the photos, there are other photos that make me sad. These are usually photos of people I thought would be my friends forever but have now disappeared.

Don’t get me wrong, I am not complaining, whining, or looking for sympathy. I am simply trying to figure out why some of these folks just don’t engage with me anymore. These aren’t people who were just acquaintances, these were people I thought were my true friends and still would be throughout the rest of my life. This has proved not to be.

I am very thankful for those folks who still stay in touch with me. It brings me joy, smiles, warmth and all sorts of “feel good” feelings. I am so very thankful these folks have kept me as their friend and not toss me away like an old, used up newspaper.

This brings me to the title of this Blog Post, “Are There Do’s and Don’ts When it Comes to Dementia?” I know there aren’t really any rules but when I did some research, I came a cross the information below which is the closest thing I have found regarding the Do’s and Don’ts of Dementia

16 THINGS I WOULD WANT, IF I GOT DEMENTIA
by Rachel Wonderlin

  1. If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
  2. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
  3. If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
  4. If I get dementia, ask me to tell you a story from my past.
  5. If I get dementia, and I become agitated, take the time to figure out what is bothering me.
  6. If I get dementia, treat me the way that you would want to be treated.
  7. If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
  8. If I get dementia, don’t talk about me as if I’m not in the room.
  9. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
  10. If I get dementia, and I live in a dementia care community, please visit me often.
  11. If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
  12. If I get dementia, make sure I always have my favorite music playing within earshot.
  13. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.
  14. If I get dementia, don’t exclude me from parties and family gatherings.
  15. If I get dementia, know that I still like receiving hugs or handshakes.
  16. If I get dementia, remember that I am still the person you know and love.

These 16 things make so much sense to me. It’s basically saying, “treat me as Brian”. I know there are some things listed above that “may seem” wrong, however, don’t look at it as wrong. People who are Living with a Dementia-Related Illness may sometimes have their own reality. I go through periods of time when my own reality may be skewed. If someone tries to correct me and guide me towards the reality they have, especially when I’m in my brain fog, let’s just say it usually does not end up pretty for I become argumentative, unreasonable, foul-mouthed and even more confused as I was to begin with. I know this because I ask Maureen to tell me, when I come out of my fog, if I did anything mean or say anything foul. I try to learn from it, but sometimes it just doesn’t stick.

I know I rambled and may have gotten off topic but, this is what happens sometimes with those of us living with Dementia.
Some of my friends may have seen me acting in a peculiar way when I was in my fog. That could be a reason they stopped keeping in contact with me.
Some other friends may have had a family member who recently passed away with a Dementia-Related Illness. It may be too hard for them to see me going down that path.
Some other friends just may find it too hard to see me like I am. I didn’t like seeing my Grandfather or my Mother while they were on their Alzheimer’s Journey so, I understand.

Whatever your reason is for not staying in contact with me or someone else who is Living with a Dementia-Related Illness, those reasons are yours and yours alone. Just know, it’s OK. We may wonder why but the thing about Alzheimer’s and Other Dementia-Related Illnesses, we may just forget . . . until we see those Memories pop up on our Social Media feed.

Until Next Time . . .
PEACE

B