Role Models for those with Alzheimer's or Dementia

 I have some "heroes" or maybe just role models helping with my journey down the dark path of Alzheimer's. One being Michael J. Fox and the other being Patrick Swayze. 

Michael J Fox, comedic actor best know for his roles as known for his roles as Alex P. Keaton on TV's Family Ties, and as Marty McFly in the movie Back to the Future, was only 29 when he was diagnosed with Parkinson's disease. He has battled with its effects for over 30 years. In an interview with Smithsonian Magazine he said that he’s been able to remain optimistic because of his love for his family and the fulfillment he finds in helping others who are struggling.

Patrick Swayze, an actor, dancer, and singer who was named “The sexiest Man Alive” in 1991 by People Magazine, died at only 57 after a two-year battle with pancreatic cancer. His wife, Niemi Swayze, repeated in an interview what he had said to her:  playing even a small part in helping change the lives of those who are fighting the disease -- or their loved ones -- for the better is a "great honor."  He is another hero of mine as he never gave up. I can only hope that publicly voicing my journey dealing with Alzheimer’s/ dementia, is helpful to anyone who is dealing with any long-term issue to see that we have to rejoice in what time we have, not what time we might not have. What we can do, not what we can’t.

“How do you nurture a positive attitude when all the statistics say you're a dead man? You go to work.” - Patrick Swayze

That's right. Keep going. Keep putting one foot in front of the other. Let's look at what we can do instead of what we can't. Let's enjoy the time we have instead of fretting over the time we may not have.

A Mala bracelet that I made to repeat the mantra shown. I do still have intelligence. Maybe not as much or sharp as it once was, but I still have it and have to remember that as long as I'm still learning new things that I am on the right path.

“Alzheimer's currently has no cure and no survivors. But this will change.” – Alzheimer’s Association - @alzassociation

Night Terrors with Alzheimer's or Dementia

Recently I posted this on Instagram:

Having had night terrors or hallucinations where I wake up to a scream, my own, and see someone/something looming over me, since I was a child now presents different set of possibilities. Always terrifying, but something I’ve become used to now has me considering the possibility of demons or angels. Hard to tell as when one pops up unexpectedly, well, there goes the scream and they scurry away leaving me breathless and confused.(Although night fright is common among persons with dementia and Alzheimer's disease, I don't think it is related since I have had these since I was young.)

We know the tower represents an “aha” moment in our lives. Towers can fall when foundations are weak. Are my foundations weak? Is there a lesson I have not learned? Is there something that I am refusing to face? Seems odd to me that this has been happening for over 50 years and I still can’t connect them to anything in particular.I will hang on to the words, courage, faith, and fighting spirit and wait to see what unfolds.

I got the most interesting response from one person: "Ew how horrid for you 💜💖"

Well, I had to go back and assure her that this is very infrequent, so not really all that horrid. And, as it is not real, there are certainly more awful things that one has to deal with in reality, yes?  

On a brighter note:

Our two Anatolians have a job..... to protect our sheep from predators. However, they don't know the difference between a coyote and a skunk. Here they have "treed" a racoon. (The racoon was able to escape.)

“Alzheimer's currently has no cure and no survivors. But this will change.” – Alzheimer’s Association -  @alzassociation

New Alzheimer's Drug

They have come out with another new drug to slow down, buy some time, not cure, Alzheimer's in people with mild or early stages of cognitive impairment. Leqembi, developed in Japan, is an antibody that is designed to remove the sticky deposits that clog up the brain. With a cost of about $26,000 per year for the drug, hospital visits to receive the infusions, and required brain scans it seems a bit financially prohibitive for most people. In addition, in studies there were incidents of brain swelling and hemorrhage, or brain bleeds in (only 25% suffered neither of these side effects) too many people for my liking. The FDA has included a warning on the box that states that there is a risk of brain swelling. In order for physicians to prescribe it they must agree to go through a government database. 

According to the Alzheimer's Association, there are over six million Americans who are living with Alzheimer's. 

At lease they're trying. It sounds like another drug that I won't be using but I suppose they must try creating new drugs and watch people die from them in order to learn how to make them better. 

They haven't come up with a cure for the common cold, so I don't see my ridding myself of this disease in my own lifetime. Maybe we just need to accept that sometimes it's just that our time has run out and go out with grace instead of battle. It's a nasty way to have to go out though.

On a lighter note my garden is doing dismally this year with the wasps and grasshoppers devouring anything the high heat and lack of rain has left for them. But, my rosemary is doing well and, when cut,  dried and burned, fills the house with a wonderful scent.

 

Forgetful with Alzheimer's

 Left my credit card at the hardware store

Left my wallet at the bakery.

Got something in the mail that I didn't remember orderings, but when I looked I did.

Forgot to feed the cat his evening wet food. (Fortunately, he always has dry so he didn't starve.) 

Forgot to brush my teeth even though I have a watch that reminds me. 

Made a special card for someone's birthday then forgot to mail it. 

Got a form I sent to Social Security back as I had filled it out incorrectly. 

Couldn't remember the ________ (Insert here: day, week, month, year, birthday, children's birthdays, grandchild's name, etc.)

But, hey. that happens to everyone doesn't it? Well, yes I suppose once in a while, but certainly not on a daily basis. Well, guess I'd just better get used to it and try to remember to laugh at myself. 

On a lighter note:

I was so thrilled to get some luscious peaches growing. 

 

 

 

 

But, then the wasps found them and I had none 😕

 

Remember - Not easy with Alzheimer's

I posted this on Instagram but thought I'd repeat it here as I felt it really made an important point. The prompt word was REMEMBER.

Remember is a difficult word for someone with Alzheimer’s or dementia to deal with. Oh, how we wish we could remember. But, since we often can’t, we have to make new memories, new friends, and relearn things that we can’t remember how to do. A child does not get angry when he or she doesn’t know something. They just set out to learn. So, I will learn and learn as many times as I can without anger (well, maybe just a tiny flare up now and then). And, if I am successful then, hopefully, I will.

 

I have a group of ladies that meet at my home once a month to work on our different crafts and just chat for a couple of hours. I pulled out some embroidery to work on. Now, I have been embroidering for most of my life and I suddenly couldn't remember how to do a lazy daisy stitch. Fortunately, a couple of the ladies knew embroidery and one of them showed me how. I felt so stupid and found myself tearing up.... that's normal for someone with dementia, to cry. But, I didn't cry and proceeded to make some very nice lazy daisy stitches. If I set it down for a couple of days though, then I have to relearn it. 

 

My niece, who is trying to understand what I'm going through.... probable the only person who is..... said she read that people with Alzheimer's get angry all the time. Yes, I understand why they would. It's so frustrating at times. I do get angry but not around others. I don't feel they should suffer because of my upset when I can't do something or understand something.  Around others I cry. 

 

"Tell me and I forget. Teach me and I remember. Involve me and I learn.” - Benjamin Franklin

https://www.instagram.com/jeanchaneyaz/

 

Watch Your Words

Watching a movie that had a character from another movie. Hubby pointed it out and I said, "I don't remember." And, his reply was a very sarcastic, "Of course you don't." Well slap my face and push me down a bit further why don't you? He immediately realized that he shouldn't verbalize his frustration over my Alzheimer's and reached over to grab my hand. Yes, he will forget by today that he even spoke such an insensitive remark. But, the one with dementia, who can't remember much of anything these days, will never forget. 

Watch your words and reassess you thought process people. 

I have learned though to live with inflicted pain and most always show a smiling face to the world. 

Cheers!

I Used To Know How to Do That.

One of those days. I got all jazzed up about doing a knit scarf. It's supposed to be easy. First, I pulled out my interchangeable needles only to find that I had forgotten completely how to put them together. No problem. Off to YouTube. Several videos later I still had no idea. So, I picked out a pair of regular circular needles. Then, I took a skein of yarn and proceeded to use my yarn winder to make a working cake. HA! That was a disaster. But, after a tune I was able to figure out how to get it right and I had my ball of yarn. I just can't remember, after a million times, how to cast on though, None of those videos are making any sense either. I decided to just do the simple cast on (which isn't very good) go from there.  Now, it was time to begin. Well, I have been "beginning" all day. Nope. Not happening.

Do I give up? Should I push myself into near hysteria? Neither seems to be a good option. So I will just try again tomorrow. Some days are just like that.😟

Even trying to type this has been amusing. I am skipping letters, mixing up the order and forgetting where I was going with my thought. Please forgive me if this is jumbled.

On a brighter note, we discovered that our dog is actually a black Belgian Malinois. She has such goofy ears and even though she is very smart, she has a few quirks. Reading about the dog traits however has show that it is just part of her nature so it will be easier to understand. She doesn't care if I can't remember how to do things. As long as I remember when it's dinner time, and I don't think she's likely to forget to tell me! So grateful for her.