Bad Days With Alzheimer's

My friend Gail had this to say: "I know positives are hard to find on a bad day. I have to keep in mind, bad days don’t last forever." on her blog post today.  

This got me thinking. Yes, we all have bad days. And, for most, bad days aren't forever. However, for those of us with dementia or Alzheimer's how do when know when that bad day is the beginning of never having a good day again? I too have days, like Gail, when everything is wrong. I can't remember how to do simple thing, I stumble, hit my head, make mistakes, get confused. But, there are days when I totally, well not quite, forget that my brain is dying and there is no way to stop it. No pills, no cure, just eventually death. We can try to hide from that fact, but there is no hiding. One day, I don't know when, that bad day will never end. 

Death. I'm not afraid of death. What I am afraid of is living like the brain dead person I will be. A friend, who now helps a woman that has Alzheimer's, tells me stories. Stories about this woman unable to go to the bathroom by herself. A woman who doesn't understand what a toothbrush is.The thing is that I can see that this will not be troublesome to me as I will be unaware. But, what about the other people who have to care for someone like that?

Not throwing in the towel. Not thinking that death would be better. Just pondering the words, "Bad days don't last forever." 

On a lighter note. We are recovering from the murders of our two sheep and focusing on the antics of our newest kitty who has taken over the household. Nothing like a new troublemaker to keep a smile on one's face.

                                              Loki tormenting Charlie.              And, Loki tormenting Cassidy!

 

 

Kisunla and an Alzheimer's Choice

 My thoughts on the new wonder drug for Alzheimer's, Kisunla.

How low can these drug companies go trying to get people's hopes up? This one is a doozy. First, to take it will cost you almost $49,000 for an 18 month supply. Second, the side effects include brain swelling and brain bleeding. Nice. Third, patients only declined about 22% more slowly in their memory than those who received a fake infusion.  And lastly, it is only good for about 7 months of use. 

Keep in mind, these are statistics that I found online, and there are many conflicting numbers and thoughts, so do your own research.  This is just  my opinion  and my thoughts regarding the pharmaceutical companies. I certainly appreciate the research, but let's do more before we release something that just gets people's hopes up. Nothing can reverse the memory loss. Nothing can put Alzheimer's into remission. Let's keep working on it. 

Why do I feel the need to do research before popping a pill or getting an infusion or injection: Well:

Years ago when I reached menopause, my doctor insisted that I HAD to go on estrogen replacements. I refused because I didn't like what I was reading in my research. She was so upset with me. By the next year, however, oops, they found out that way too many women developed uterine cancer due to the added estrogen. She never bothered me again.

Also, after developing kidney stones in my 20's, I was told to stay off of any calcium. That was the thinking of the times. Now, of course I have osteoporosis from a lack of calcium all those years. It took the medical community many years to go "oops" again to a mistake that damaged many of us who blindly follow medical advice. 

Currently, my doctors have all insisted that I take medications for the osteoporosis. My research finds it to be a terrible thing to do. It hardens the bones, yes, but then makes them brittle with even more  catastrophic results. So, I refused. Fortunately, I have a new young doctor who applauded me and said, "I don't blame you for that." 

So, I know better than to bel9eve what drug companies come up with for their financial gain. Grasping at straws is not for me. I do take two medications that have been proven to be safe for those with dementia, but not proven effective for everyone. Since they're safe. I take them. Who knows if they've made a difference of not. I'm doing pretty good though so I'm not complaining.

On a lighter note:

It's hot out there in the Texas afternoon. My chickens are being treated to some iced veggies.

 

The Big A - Alzheimer's

When it rains it pours, or so they say. What a nasty string of bad luck we have had. A lot of it is because we try to be good people. So, we tried to save that little kitty only to have to put it down. (In my last post.) Then, another barn cat hat a large litter that somehow found their way into the area where we store the dog and sheep food. Mama cat tried to get in but had to go past the big dogs, and of course, their job is to protect the sheep so they killed her. All the babies died. 

A few days later, a little dog found his way to our pasture. People dump dogs all the time around here so we thought we would be kind and keep him. He got along with the guard dogs, sheep, and our little dog so we were feeling good. However, a few days in he attacked and killed our ram and badly mauled three of our ewes. He is gone. I'm not sure I can continue to deal with death this way much longer. Not sure we will continue to raise sheep. I do know we won't be taking in any strays in the future.

The next day, hubby got the call that he has skin cancer. 

I do believe that we have events that happen in order for us to learn and to grow. I'm kind of tired of learning at the moment. 

The Big A reared its head again when I somehow ordered two of the same Tarot decks. It is something that I try so hard not to do. I sign up for classes I forget to take, buy things I already have, yet forget to get things I need. I balanced the checkbook this morning. A two hour job. Something that used to take a few minutes. But, it balanced. The extra deck will become a gift. Most things can still be dealt with and I'm grateful for that. 

Here's a photos of "Buster". He was a cutie. I never got any of the little baby kitties. I suppose I should be more hardened to death living on a "ranch", but I was not brought up here and I think my heart is too soft. 

Follow the Yellow Brick Road = Alzheimer's

I was reading the post from my online friend, Gail, who has battled with the diagnosis of Alzheimer's for about the same time as I have. In her post, she lamented the loss of friends, the dismissive attitude of physicians, and the feelings of being an outcast.

For some reason, I have not found this to be an issue at all. My friends don't seem to care and we laugh together when I can't remember something. My doctors ask me how things are going but still treat me with the same respect everyone deserves and we can still joke around and be just as comfortable as we ever were. In England, where Gail lives, they have something called and Admiral Nurse that visits and helps you through the rough spots. We don't have any such thing here. It is interesting how attitudes can be so different. If you're interested, click HERE for her post. 

It is kind of interesting, to me anyway, that nobody seems to care if my brain is dying, as it appears that Americans are more accepting. But, if I even mention that I use Tarot cards here in the middle of Texas people back away as if I have leprosy or am actually the devil himself. Now, that is proof that ignorance abounds.

My hubby believes that my brain is just finding and making new pathways as I still have to do all the banking, bills, cooking, and, well, everything. I still spend hours with my puzzles. I'm not sure if that's the difference. We have no help here. Nobody here things having Alzheimer's is any different than having an arm in a sling. Life goes on. I'm not dead and I refuse to life like I'm just marching towards it.

It has been proven that even in old age, the brain is still capable of creating new neurons. These pathways take about three months of practice.  "Neuroplasticity is the brain’s ability to reorganize itself by forming new neural pathways throughout life and in response to experiences. While the brain usually does this itself in response to injury or disease, when humans focus their attention enough, they can slowly rewire these pathways themselves." From: How to Rewire Your Brain.

Yes, I have bad days. Yes, I get angry at myself when I do ridiculous things. Yes, I get angry when I can't remember how to do something simple. But, I'm still smarter than I was when I was two, yes? I'm still smarter than my dog, yes? 

In an earlier post I talked about the three brothers, all diagnosed with Alzheimer's after death. Two died young, one lived to an old age. When they autopsied the last brother his brain was in worse shape than his siblings. The conclusion was that he never gave up and worked tirelessly on his math books that he wrote. I refuse to give in.  Or, follow the yellow brick road to get where you want to go.                 

For the photos: 

Hubby found another kitty that couldn't even stand up. He brought it in for me to care for until we could get it to the vet. It bit me hard a few times as it was starving, even though we leave plenty of food out for our barn kitties. Hard to eat when you can't walk. Anyway, we took it to the bet and it had severe neurological issues, and because it bit me, it had to be put down for rabies testing. Fortunately, no rabies, but it was so sad.

Little Loki thought he was going to have a new friend and even shared his favorite bunny with the newcomer. We had to throw the bunny out because the visitor was full of ear mites too.

I've learned my lesson. Barn cats stay in the barn and nature just has to take its course without my intervention in the future.  

(Still waiting for Blogger to figure out why nobody can find my blog. I suppose it's just not meant to be.)

Alzheimer's Society Disappoints AGAIN

I follow Gail over at Too Young for Dementia and was do disappointed, again, with the Alzheimer's response to the uproar, from those of us living with dementia and Alzheimer's, over their latest campaign that shows us as victims that hurt our families over and over. What on earth is wrong with them. I, for one, am so proud of those of us who refuse to give in and work daily to find ways to work around our difficulties.

Here is the link to the information about the petition:

Alzheimer's Society declines to accept the petition to withdraw The Long Goodbye

 

Let me know what you think. 

 

(Although, I know very few people read this blog as it can't be found on the Internet unless you are clicking from somewhere I've posted the link. I contacted blogger and they have been working on finding the issue for months. Hopefully, they will be able to correct it so that more can find a positive and upbeat version of living with Alzheimer's.)

 

On a lighter note. Our rescued kitten that we found with still closed eyes is now almost 6 weeks old. We named him Loki, after the god of mischief, and he is indeed living up to his name. 

 

Post is NOT for everyone sensitive to death relatred to Alzheimer's

Who knew there were so many kinds/causes for dementia? I have the run of the mill Alzheimer's for which I am grateful. 

PLEASE DO NOT READ FURTHER IF THE CONVERSATION OF SUICIDE OR EUTHANASIA IS SOMETHING YOU WOULD FIND DISTURBING    

Robin Williams was one of my favorite comedians. His works made you laugh and yet cry at the same time. His life was like that as well. When he discovered that he had one of the severest forms (Lewy Body, a more aggressive cognitive decline with a more impaired life that can include hallucinations,  paranoia, confusion, and a shorter survival time) of dementia, he ended his life. Good for you, Robin. He knew he didn’t want to live that way or for his family to remember him that way.

Not to think I am thinking of following in his footsteps, no, fortunately I do not have this awful form of dementia.  Having Alzheimer’s though has made me much more aware of the eventualities that can befall some of us. For some, ending life while still able to control one's functions, to know one's family, to be more than a vegetable should be a given choice. I get very angry when we know it is time to put down our pet when he/she is in pain, but for some reason won't allow humans the same dignity. 

I'm happy to see that some state, Oregon, Washington, and Montana have begun to allow active euthanasia, a choice to be given a lethal drug to allow death. All states allow passive euthanasia (death from the patient refusing food, water, treatment) yet this can be lengthy and painful.

Not sure what took me here today. I was writing a post for my Instagram about laughter and came across a quote from Erma Bombeck. “There is a thin line that separates laughter and pain, comedy and tragedy, humor and hurt.” So, my thoughts went to Robin. 

Hope this hasn't upset anyone. Just my rambling thoughts. 

On a lighter side:  

Here is Loki. We found him abandoned when he just over a week old, we think. We've had him for almost a month and now he weighs over a pound and is thriving. 

 

Shame on the Alzheimer's Society

Oh my. Have you seen the new promotional video from The Alzheimer's Society called "The Long Goodby"? It is such a disservice to all who have the disease as it just tells us of how we will repeatedly die and make our families miserable. I posted the following response to their video:" I have dementia and Alzheimer’s, and I must say this video was horrible. What a disservice to those of us, who are working hard to educate the public about the fact that a diagnosis of either does not mean impending death it means learning to adjust. Shame on you."

On Facebook a reader responded this was: "Jean Chaney It's absolutely horrendous for everyone who has Alzheimer's to see this, makes me so angry. My mum has Alzheimer's and I'm dreading her seeing this one, such a negative, scary proposition. She was so anxious with the last one." 

As if this isn't hard enough to deal with we have to have the Alzheimer's society pushing such drivel. No wonder so many with dementia turn to suicide. Geez!!!!

 On a lighter side: I spent a week with my friends and family in Arizona and after I returned we had guests from Canada and, later today I have a friend from Arizona coming to stay. Life is good. I refuse to die on your schedule, Alzheimer's Society! 

And, spring is here and the farmer's market is bursting with goodness.