Lions, Tigers, Bears & Covid-19…OH MY!

Hey, have you heard about that COVID-19 thingy? It’s EVERYWHERE in the world, well, almost everywhere. Antarctica is the only continent with no confirmed cases of  #Covid19. The impacts of Covid19 are now being felt at the North Pole for planned aerial surveys and resupply flights have been canceled.

What does this have to do with Dementia Strong? NOTHING, nothing at all . . . or does it?

On any given day, those of us who are Living with a Dementia-Related Illness usually spend a lot of time inside. Sure, we go walking to get exercise, we go to the grocery stores with our loved ones, we go to #Starbucks, we may even take an occasional trip to the Grocery Store if we feel like it, as long as we dress in our Hazmat Suits. But there’s a huge difference between being inside because we feel more secure and less anxious and being “MADE” to stay inside for we don’t know who has or who hasn’t been exposed to someone with the virus.

We can no longer go to our favorite restaurant to have our favorite meal because you can no longer go inside. You can get it to go, but it’s just not the same when you realized you’re eating your favorite meal from a styrofoam container.

Visiting with your friends and family means using #ZOOM or #FaceTime or #Skype or #HouseParty or any other ways we can make video calls. Yes, it’s nice to be able to see their faces, hear them laugh, and find out what’s been going on with them, but the physicality is not there. You can send a virtual hug, but it doesn’t have the same effect when you can’t hug them. You can’t even visit them in a hospital unless you’re wearing a mask and gloves. It’s the little things that are missed the most, especially when we are ordered to follow the rules.

I know I mentioned earlier about going to the grocery. Maureen and I still go about once a week and yes, we follow the arrows on the floor at Publix telling us which way to go, and yes we wear our masks, and yes we bring our wipes and wipe down the baskets, even though we see the employees wiping them down before we do, and yes we follow Social Distancing, but yet, when we get back into the car, we start wiping everywhere. Talk about anxiousness setting in.

Maureen tells me “you know, you don’t have to go. I can do this by myself.” I realize she can but when it’s the only time during that particular day that I can get out of the house, I jump at the chance. I then started to wonder, does she say that because she may want to get out of the house by herself? We are together 24/7. Surprisingly, no one has been harmed during our “Corona Vacation”!

I must say, whether it’s been a day, 6 months or 10+years you have shared your life with someone, when you spend 24/7 with that person(s) for weeks and weeks, you learn A LOT about them. Some things you just don’t want to know. You can become closer and then distant, all in a 5 minute period.

Throw Dementia into the mix, well, that brings it to a whole different level.

I’m not trying to single “US” out but, the law should have stated, “practice social distancing and treat everyone like they have a Dementia-Related Illness” then they would have surely stayed away from one another.

No, I’m not looking for pity, it’s just a fact. Friends don’t usually call unless they are Dementia Friends or are related to Dementia Friends in one way or another.
They don’t visit, because, you know, they may catch it, even though we are NOT CONTAGIOUS!
They’re afraid to speak to us for . . .
– we may not understand what they are saying, or
– we may not be able to respond to the questions they ask, or . . .

Anyways . . . continue your #SocialDistancing, wipe down anything BEFORE you touch it and then wipe your hands AFTER you touch it, wear a MASK, and just be kind to EVERYONE. It’s a very unusual time for ALL OF US so just remember, although you’re wearing a mask out in public, your eyes can still show that you’re smiling!

Y’all Take Care,
Until Next Time . . . PEACE!

Brian

Don’t DO . . . BE, except . . .

“When you “DO” for someone what they can do for themselves, you disable them emotionally.” ~ Jack Hosman (Maureen’s Dad)

I believe I mentioned this phrase before, “DON’T DO, BE” but in the “Dementia World” it is so very important and worth repeating.

Sometimes, Care Partners, family members and friends may see a PLWD (Person Living With Dementia) struggling to do something and their normal reaction is to jump right in and do it for them. You don’t want to see your loved one / friend struggle, so you help them.

Unbeknownst to you, your loved one / friend get’s extremely frustrated and lashes out at you. In your mind, you were only trying to help them.
In the mind of the PLWD, you took away their ability to figure it out for themselves and, without asking, jumped right in and did it for them. In a way, you paralyzed them.

I can talk about this at length for it is something Maureen and I struggled with when our relationship started and we continue to do so to this day. You see, she is a “DO-ER” and a “FIXER”. It’s just who she is.
On the other hand, I am a stubborn S.O.B. (and a slow learner) and I can do ANYTHING and EVERYTHING I set my mind to, but then reality (ALZHEIMER’S) steps in. That’s when I ask for help.

I have to say, most of the time Maureen is very patient with me. Of course that has a lot to do with my responses to her question, “Do you need help?” If I answer her in a not-so-nice manner like, “NO!!! I CAN DO THIS!” she gives it right back at me. She doesn’t do it to be mean, she does it because I have asked her to treat me as she would anyone else. I don’t want any special treatment.

When I am in my “FOGGY STATE of MIND” she doesn’t ask me anything for I am not able to answer her questions. I can barely make sensible words (from what Maureen tells me at a later time) but I still try. That’s the stubborn part of me that is, I guess, always with me.

You see, when I first started my Advocacy back in the beginning of 2015, I started using my slogan, “I Have Alzheimer’s, BUT, It Doesn’t Have Me” because I was bound and determined not to be recognized as Brian, the guy with Alzheimer’s. I wanted to still be known as Brian, the guy who is Living Well with Alzheimer’s and he doesn’t allow it to define him. I still believe that to this day. I figure, if I allow it to define who I am, then I have lost the battle and I am nowhere near that stage of my life yet. I still have a lot to do and a lot to say.

OK, I got a little sidetracked. Back to “Don’t Do . . . BE.”

As the quote stated at the beginning of this post, doing for someone without asking “disables” them. It doesn’t physically disable them, but it does emotionally disable them. It takes away their confidence and when it happens over and over again, they lose their self-confidence and increases their doubt as to what they can and cannot do. This could start a mental decline and that’s what I fight, every day, not to go down that path. I know it will happen but NOT TODAY!

Actually, Maureen not only allows me to “BE” but she now asks me to assist her with things she is struggling with. That gives me such a boost of confidence and strengthens our relationship.

One last thing I would like to mention is for the Care Partners that are assisting their person in a Care Community. What if your person is non-verbal? How do you know if they are struggling with something?
That would happen over time, as you get to know your person, you would become more familiar with the non-verbal signs of them struggling and they may become more comfortable with you assisting them. It becomes a partnership as well as a relationship . . . one person helping another.

So, my main message / suggestion to you is this, “if you see your loved one struggling with something, don’t be so quick to jump in and do it for them. Ask them if they need some assistance. If it becomes something that could lead to them hurting themselves, you may want to ask them again to avoid any type of injury. Yes, I know it’s a slippery slope but as time goes along, you and your person will start working as a team and they may actually start asking for your help instead of waiting until it frustrates them. That is something I still struggle with but, more times than not, I ask Maureen for assistance and she is only too happy to jump right in.

Just remember, “Patience is a Virtue!”

Until Next Time . . .
PEACE

~Brian

 

What do “YOU” want your Care Partners to know about You

When you hear someone talking about the future and the plans they are making as to where they will be living, who will be taking care of them,
and how they will be taken care of, do you think to yourself, “I won’t need care. I’m in great physical shape, I am of sound mind, my spouse/partner and I have a great relationship so they will be able to take care of me if something goes wrong.

Scenario #1 . . . 25 years later. You Spouse/Partner is no longer with you. You have developed a Dementia-Related Illness and the time has come that you
are no longer able to live and care for yourself. You enter into a Care Community where no one knows you, no one knows about you and you are unable to tell them anything about your past. They have to figure things out the best they can as to how you would want them to care for you.

Scenario #2 . . . 25 years later, you develop a Dementia-Related Illness. Your Spouse/Partner finds it difficult to care for you at home. The 2 of you had already made plans as to where either of you would go in case the other spouse was not able to properly care for the other. The two of you also made videos years before . . .

One video was made for your future CarePartners as to what your wants, needs and wishes are, and the other video was made to your Spouse / Partner as to what your wishes are from them.

I have to say, the couple that made the videos were much more prepared than the couple that did not.

The reason I am writing this is because, at almost 60 years old and Living with Alzheimer’s Disease, Vascular Dementia, Type 2 Diabetes and underwent a Triple Bypass last year, I know that my time on this earth is precious and I want things to be in order when my time comes to move into a Care Community.

Just last week, I made 2 videos . . .
One to my future Care Partners and one to Maureen, my Care / Life Partner.
The one to Maureen was extremely hard and emotional but necessary. You see, sooner or later I will not be able to tell her how much I love her, I won’t be able to tell her Thank You for all she has done, and continues to do, for me. I want her to continue hearing my voice, telling her what it means to have her in my life. The other reason is she asked me to record my voice telling her that I lover her. You see, we both will reap joy from these little messages.

I’ve also asked her to sneak in some Peanut Butter, Ice Cream, Chocolate Covered Almonds, Starbucks Coffee (Venti, Pike Place, 3 Splenda, and half n half . . . just in case you want to come visit me when/if Maureen can’t make it.)

I know you have heard the phrase, “it’s the little things that make the biggest difference” but they really do. Being prepared with a plan for the
unforeseen future, being prepared with a Life Care Plan which includes Advance Directives is, what I would define as, mandatory.

The second video I made was to my future Care Partners. I told them of my love for music and how it lessens my times of anxiousness. I included some particular songs from my favorite artists and my favorite genres.

There’s nothing like listening to New Orleans Jazz Greats Al Hirt and Pete Fountain, the heavenly voice of Aaron Neville and the funky sounds of the Neville Brothers and the Meters. I had to include my country fav’s Tim McGraw, Kenny Rogers, Tracy Byrd, Dolly, Reba and Faith, just to name a very few.

I told them of my favorite foods . . . Peanut Butter, Cheerios, Coffee (duh!) Yes, I can (and have) survived on those foods and yes, I know I am
Type 2 Diabetic but you know, considering all else I will be going through, I don’t think a little peanut better and Cheerios will matter.

I also asked them to take me outside so I can feel the sun on my face and so I can take photos. I take a lot of photos for they help me remember
where I have been. I also know that when I look at photos, I may not remember where I have been but, as Maureen once told me, I can experience the warm feelings I had when I took the picture.
By the time I enter a Care Community I plan on having albums and albums of photos that will bring many, many fond memories and beautiful feelings.

Finally, I made one final request and I have included this is my video to Maureen. On my last day upon this earth, I have requested to have Maureen by my side.. Before she kisses my good-bye, I would like for her to put a little bit of Peanut Butter on her lips. Hopefully that will bring a smile to both of us.

You may notice that I tend to sprinkle my blogs, stories, conversations and other posts with humor. It’s not that I am making a joke about the things I write, it’s that I have found that a little bit of humor eases the seriousness of things. I have asked my future Care Partners to joke with me, share jokes with me and don’t be so serious all the time. In my humble opinion, laughter is a necessity of life and it also can ease the tension to make things a bit more bearable.

It’s also why I have decided to be cremated instead of having people standing in line to look at a version of who I once was. I don’t want my “Celebration of Life” to be a sad, solemn occasion. I want music to be played, I want food and alcohol, (and Starbucks Coffee) I want my guests to have 1 final celebration with me before my ashes are placed in a planter and I become part of a beautiful tree.

I hope you can take what you have read here and incorporate some or all the things I mentioned into your future Care Plan. These are mere suggestions for you to use or not. Either way, please make a plan for your future and make sure it is YOUR plan. No matter how many friends or family members you have, YOU are the one that knows YOU the best. If you wait for too many tomorrows to come around, well, let’s just say, don’t wait until it’s too late!

Until Next Time,
PEACE (and Starbucks)
Brian
#planforthefuture #dontwaituntilitstoolate #knowme #teamworkmakesthedreamwork