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.

 

Numerology and Dementia

Always on a hunt to explore new things I have become interested in numerology. Today I got an email inviting me to explore the meanings of my numbers in relationship to my life path. (It's very simple: you take your birthday of month, day, and year. Total all the numbers and then reduce. For example: 5-27-1909 would be 5+27 = 32 0r 3+2 + 5; 1+9+10 plus as 9 = 19. 1+9 = 10 reduces to 1. Then that 1 gets added to the 5 to be a life number of 6.)

Anyway, I did mine, and came up with number 5, and began to read how adventurous I am and how I embrace change and enjoy visiting different places and cultures. I thought "this is nonsense" I am nothing like that. Until I realized that I simply can't add anymore and redid my numbers to the number 4! Yes, spot on, exactly me: practical, disciplined, hardworking, with a strong sense of responsibility. I am very organized and reliable and very resistant to change. (I was also warned not to become too controlling or rigid in relationships, HAHA!)

Anyone who knows me knows that's exactly who I am. My ex mother-in-law, with whom I am still close, was amazed at my sudden decision to move to Texas. She didn't think I had it in me. Well, Alzheimer's has made me a bit more prone to making quicker decisions as I am aware of the time limits that are now imposed on me. 

Does it really mean anything? Who knows. It does give me another area to learn more about and explore (from within the confines of my safe home. No venturing out to places unknown with people who don't speak my language and eat weird foods!).

You don't have to wait for a diagnosis of anything that tells you your life expectancy has suddenly got a timeline. Have fun learning new things. I'm having a delightful time playing with all of this, new to me, world of the occult. (Occult means "beyond understanding". It does NOT mean devil worship...geez!)

On a lighter note:

Spring. Hoping for peaches that we can eat before the wasps get to them.

A New Doctor - Alzheimer's Blog

One of the most annoying thing is having medical professionals argue that you certainly don't have Alzheimer's even though I went through extensive testing with a neurologist. Fortunately, hubby and I decided to change primary care physicians to a local doctor and he actually accepted the diagnosis. He did say that it was not anything he could have noticed but listened carefully as my husband assured him that you just have to live with me to see the decline. It is a slow decline, thankfully, but one that both he and I are painfully aware of. 

I know there are some kinds of dementia that has a very fast decline. There are some kinds that cause all sorts of physical ailments as well. If one has to have it, the kind I have is the kind to get. Not that anyone has a choice though. 

I'm preparing for a trip out of state soon to visit with my grown children and grandchildren. I was able to set up the flight this time by myself without any issues at all. Yesterday I even got a call about what services I might need and would up spending the next half hour chatting with the agent about her aunt who has early onset Alzheimer's and became non-verbal very quickly. I am grateful that I could give her some good advice and made her smile a bit alone the way. It is a harder journey for the loved ones I suppose than the person dealing with the disease. 

Spring is beginning and my garden, small as it will be, is ready for planting. I don't think I ever really wanted to have a garden but hubby, smart as he is at knowing that people with cognitive decline need things that force them into activity daily. Not that I ever run out of things to do already with dogs, cats, birds, chickens, sheep, a husband and a house to care for.

Several days ago one of our friends was hospitalized and was clinically dead for over 25 minutes. They were able to resuscitate her, but they told her husband that since she was gone for so long and had no response to any stimuli at all that she would never go home. He was already getting ready to pull the plug when yesterday she awoke and actually knew who he was. You just never know.

On a lighter note: 

Here's our pear tree welcoming spring.

Anxiety and Dementia

A friend, who also does an Alzheimer's blog, posted a photo of the skin surrounding her fingernails which, due to anxiety, she has picked on severely. She still has lovely fingernails though. I couldn't even think of posting a photo of my fingernails, or lack of fingernails, and the chewed off skin surrounding them. Horrifying! She said that she believes it is the dementia that is causing the anxiety. I responded to her blog post to say, "Well, why wouldn't we be anxious?". We have no playbook. Nobody can tell us exactly what is going on since it appears that everyone with this disease has a different set of symptoms and a different timeline. We read that we could be dead in 5-8 years once diagnosed. We read horror stories of people who are so disoriented that they wander, forget to eat, shout at loved ones. So, we wake each day wondering if this is the day we can't remember our family and friends. Tomorrow maybe? Maybe we'll get hit by a bus before that ever happens? Anxiety? You bet.

I do try not to live there. I try to remain positive. I try to ignore all the things that get my panties in a bunch all day long. Today I found myself screaming because I couldn't figure out how to untangle the sheets. This morning I had done my taxes.... by myself... dealt with hubby's doctor issues over multiple phone calls.... all by myself. I was exhausted. Tangle sheets were nothing, but to me it was something I could finally scream about. Literally, I screamed out loud for several minutes. It did make me feel better.

On a lighter note:

Here's a photo of a low carb blueberry cheesecake that I made. Yum!

Family Makes a Difference

Many of us travel a lonely path. Some from illness, some by choice, some from simple neglect. But, in my journey I am fortunate to have many people who truly care for me cheering, usually silently, in the background willing me to move forward. All of my family is now very far away but that's just the nature of today's society. Gone are the days when everyone lived in the same little town for generation. after generation. With Zoom, cell phones, social media, cars, and airplanes, it's easier to stay connected. Well, except for family members who are strongly opposed to all of those things, LOL!

This past week one of my son's came with his long-time partner to visit. We had such a good time. His girlfriend is into tarot and such as well so that made for special bonding time as we made some Witches' Bells and Witches' Balls. My son, even though he doesn't "get it", is supportive of what he thinks is our "nonsense". If it makes mom happy, that's all that matters, right? Good boy. Raised you well!

I think my husband and I amused them both no end with our memory issues. He has cognitive memory decline, so added to my dementia/Alzheimer's, we can be quite the team. It's funny that the one with Alzheimer's fills in all the words he can't remember! Even my son's girlfriend, who has a health condition that is affecting her memory, depended on me to be able to fill in missing pieces. Sometimes I really think that's why my decline had been slowed since I have too many people depending on me to do everything. 

One of our trips took us to Fredricksburg, a German tourist town. Surprise! We found a small shop with tarot cards, witchy necklaces, runes and more. Wow! Made my day. I even got a photo of me with Zoltar!

They gifted me a beautiful leather bound journal that I have been happily turning into a grimoire for the past couple of days. 

I will go to visit them again and the rest of my family at the end of March for 5 days. Life is good.  

(What would I do without my AppleWatch that just told me to take my pills? I have it set for all kinds of things that I would otherwise forget during the day.)