01.11.20 Bits and pieces of dementia writings over the last two years

Since I laid it all out there in my last blog post about recent events in this dementia journey I want to share that I am coming out of the bad spell. It’s not at all back to “my normal” but it is better. Better for me may not be what you think of as better but for now I can’t describe it.

The “nice” thing about not remembering is that I don’t remember the things from last week. I had to look up the blog and read it to know what happened.  Weird.

Over time I’ve started writing blog posts about what’s happening in my life with dementia.  I write a bit and then don’t publish it. They are just pieces I’ve written and are not connected but all relate to dementia so I’m putting them here with dividers and hopefully something in one of them will help someone out there. Happy Saturday ya’ll!

2018 How I live my life is determined pretty much by how this dementia monster is behaving in my life! It’s been 7 years since I first had neuropsychological testing in November 2011 and was sent on to see Dr. Shamsniam a neurologist in Metairie, who did several medical brain tests. His medical conclusion supported the neuropsychological testing done by Dr. Susan Andrews.  They diagnosed Vascular dementia from having several TIAs (Transient Ischemic Attach – Mini Strokes) that damaged various parts of my brain. Frontotemporal dementia (FTD) from having a shrunken brain in the Frontal Lobe and Temporal Lobes. Other lobes are also shrunk but the majority of the shrinking is in the Frontal and Temporal lobes.

I honestly still have a lot of times that I think “This is all garbage. I am as okay as the next person.” I am able to think that way from time to time because of the life Roy and I live. I am very thankful that my dementia journey has gone slowly and that I am not what most people think of looking like when you have dementia.

I am thankful that God has given me this time as still being mostly Rosalyn. I know  God is in control of everything and my journey is in His hands.

When an older person is diagnosed with dementia they probably had it for years before then. Their pathway from diagnosis to death is typically short.

This has taken a while to write because I change from time to time.  Some days I am really mean, mostly to Roy. I was mean and rude recently to our new RV space renter and I had to apologize later when I realized what I had done.

2019 I just listened to a video by the writer of Still Alice. in it she points out that the more knowledge and experiences someone with dementia has the lesser degree dementia will affect you leaving your abilities in tact longer.  the information there helps explain why i am still able to function as well as I can.  she mentioned that cross word puzzles don’t help because youa re retrieving existing knowledge.  learning something new is what help.  our travels and also living in the RV definitely helped me learn more. this is exciting to me  because it explains a lot.

This is the video:

http://www.alzheimersweekly.com/2017/04/alzheimers-isnt-destiny.html

2019 I haven’t written a lot recently about my shrinking brain filled with holes.  In the past when I had a day or even a few hours of conversation, activity, socializing and simple interaction with others, the rate my brain had to run to keep up just wore me out.  A good night’s sleep or several hours of trying to not think helped me recover to a better place.

The last couple of weeks have involved repeated conversation, activity, socializing and lots of thinking. No longer has getting a good nights sleep helped and I certainly have not had several hours of not thinking.  It just didn’t stop. Things outside of our control, good things, bad things.  I am not complaining, it’s just life but I’ve been waking up with brain mush.

I hear it from others and read it as well. You need to keep your mind working, get out, see people, socialize, keep busy. Really??!!  That might be accurate at some time down the dementia road and it was true for me before recently.  Now any one of those things tires my brain out so much.  You can’t imagine how much I wish I could be the social person I use to be.  If someone asked me to do something I’d say yes and I’d be dependable about it.  Let me spend an afternoon visiting with just about anyone or any group of people and I thrived.

While I still can I continue to try to be an advocate for dementia awareness.  Today I want to share some of the things that go on sometime in my daily life, living with dementia.

Sometimes, now, I am in a situation where I don’t remember the name of someone I am talking to.  I’ve gotten quite good at this now and can hold a conversation without ever saying a name, but it has taken practice.   I can also hold a conversation that is more chit chat than substance which tends to mask what’s going on inside my brain.  I noticed that in mama when she would smile and give a seemingly normal response which was actually just a cover-up response when she didn’t really know what we meant.  When people ask how I am doing I always say fine, who really wants to know that can’t remember one thing that happened that morning or the day before????

I spend some time of the day on the computer on Facebook, writing my blog, googling information for caring for my garden. This is getting harder and harder each day.

When I get ready for bed. I take my night time medication, so many tablets to take in the course of a day… I crawl into bed and am at last in my “happy zone.”  Not that my day is not filled with happy moments, just that when I’m in my room alone there is nothing required of me, no one is talking to me wanting a response.  I read both some portion of a book and also my Bible.  I love that our church is reading the Bible together in our own time.  I find that when I read in that quiet time (that may last hours) I retain a bit more of it than when I read during the day when there is activity or just someone else around.

One day during 2018 This week on Thursday when I woke up I felt like my brain was in a fog.

I usually check my phone for emails, Fox News, Facebook before I get out of bed.  None of it was making sense to me.

When I got up and tried to write one of my blogs my brain didn’t know how to do certain parts of putting it together.  My writing didn’t make any sense.  I went from one blog to the other trying to get something started.  It didn’t work.  I started crying because even though these things have happened before they all haven’t happened before on the same day.

I tried to paint rocks and couldn’t come up with anything about how to do that.  I couldn’t remember how to make my oatmeal breakfast.  I knew what to use but not how to put it together.  That was a brief maybe 5 minutes and then it came to me.

My balance isn’t good occasionally but Thursday it was difficult to walk straight a lot of the time.

Roy asked me a question that I should know the answer and the answer was nowhere to be found.

Late in the day things got better and I went to sleep really early hoping that would help. I typically now sleep at least 12 hours every night.  When I’m in bed reading and then going to sleep is the time I am at peace.  There is nothing to figure out or remember. No one to try to say the right words to. When I got up this morning I felt much better.

I know that those of us with some form of dementia sharing on here and on Facebook groups help those who are the caregivers understand. It is very saddening to me when I read someone who is a caregiver wanting their loved one to change back to how they were, or they think their loved one is being stubborn, or honery. They may just be expressing feelings which are fine but when they actually think their loved one has any control over how they are or that their loved one doesn’t wake up every day and throughout every day wish they could be normal again, please please try to approach every obstacle knowing that your loved one would do anything to be normal again. Being mad at their loved ones doesn’t help anything.

Two things that have happened in the last few months are 1) losing my memory of the order of the New Testament and Old Testament books. That really might not seem like a big deal to most of you but I taught 3rd and 4th graders the Books of the Bible every Sunday for years.  I could say the books backward after all those years but when our pastor says “Turn in your Bible to XXXXX” unless it is a super easy one I have no idea where it is.  Super easy is like Genesis, Matthew, and Mark.  Our pastor preached through some of Romans for several weeks so I marked it with the page ribbon and that helps. He’s in Genesis now and I’m thankful since that’s an easy one!
The other thing is 2) I’ve sung hymns from Baptist Hymnals all my life and know all the words to all the songs.  I could sing without looking at the hymnal.  I can’t always do that now – knowing the words.  I’m thankful we have the words for the hymns or other Christian songs up on the screen.  There is something about knowing the words and being able to freely sing praises to God without reading the words that I treasured.

Well, that’s it for pieces of blogs that I started but never posted. I am dealing with an abscessed tooth and a possible dry socket along with the brain fun! I’ve been on amoxicillin for two weeks and Tylenol/ibuprofen for the pain. If not better by Tuesday I have an appointment to go back to the dentist and have a root canal. Imagine being crazy and in pain plus an abscess!

Life is Good! God Good! All the time God is Good!

It might not seem like it should be, but this was difficult to put together. It’s done and it makes me relieved to finally get these little pieces all in one place and out there!  I really do have to be doing better to put this together. I will blog as long as I can, I will share my love for our Lord and what he’s done in my life while I still can, I will read and learn as long as I can, paint rocks as long as I can and garden as long as I can. I love these things and they bring me joy! I thank God for that joy and all the joy He allows me to have in my life!

Ya’ll have a great weekend.

 

11.23.19 “Gooch of the Day,” by Andrew Kane

Andrew Kane’s mom had dementia. He wrote this FB post on the group Being Patient: Brain Talks which I read from time to time.  It helps me a lot reading how others handle what they are going through or how the caregiver describes life with a dementia patient. My personal dementia journey has included so many ups and downs, so much frustration, and sadness watching what was me leave over time. I do want to share more with ya’ll but I can’t seem to sit down and share. I will though, soon.

Andrew obviously loved his mom. I love her nickname “Gooch” and hope this will help educate someone, give comfort to someone or a better understanding of the awful disease called dementia..

Here we go “Gooch of the Day”

“Gooch Of The Day”… (as seen on my instagram) … unfortunately this will be the last “Gooch Of The Day” as my mom, “Gooch” (my dad’s nickname for her and her grandkids called her) passed away last night from complications caused by Alzheimer’s and old age.

LET ME FIRST PREFACE THIS by explaining I am posting this to assist others with family members affected by Alzheimer’s to explain some of the things that my family experienced.

My family was one of the lucky ones as Gooch was still as happy as ever. I can’t imagine if she became mean as many people with Alzheimer’s do.

She became a little girl again and would laugh and joke and even pee in her pants from laughing so much! She was always happy and still very proper and polite always thanking everyone or helping other people. She even offered her wheelchair (stroke related) to a physically fine stranger that was standing next to her as there weren’t any more chairs in the room.

She lost her filter as age often does and always said what was on her mind. We would just say “shhhh Mom”.

Her recent and short term memory deteriorated over the past 3 years relatively rapidly but she could remember so much from the past. Just recently I asked her what our phone number was on Barberry Lane where my sisters and I grew up. Sure enough sh,e blurted out the number with area code …(315) 637-3___… amazing… no hesitation!

So back up 3 – 4 years in Connecticut, she was found wandering around her assisted living facility several times not knowing where she was and even going outside looking for her car which she did not have for several years. They could not assist a resident needing memory care. It was time for her to move back to Syracuse.

That reminds me that every move made things worse so if you need to move your family member try to decorate the new place as close to identically as possible which is tough as usually you are down sizing as we were. Change always causes problems… “where am I”, “let’s go home”…”this is your home, mom. See the painting of…” I would reply.

As she became “younger” she would talk about the past more and more and think she was living in the past. She thought the Nottingham Health Center was her high school, Nottingham High School.

You had to learn to tell her “therapeutic fibs” so that she would not think about her failing memory and then get upset…. “Dad’s out golfing mom… probably having a beer with the boys afterwards” and she would huff and puff and then forget it. If you said “dad’s dead mom” that would just cause anxiety.

One of the most negative things that really affected her was anxiety. Anxiety that she didn’t know where she was, anxiety about where Dad was, anxiety about losing her memory.

The busier you kept her with activities the less anxiety… but for the times that nothing was going on and family was not with her the Savior was “Kiffy”, a Hasbro mechanical cat that meows, purrs, lifts it paw, wiggles it ears and opens & closes its eyes. All you had to do was give Mom Kiffy and she would settle down. You see Gooch had cats while we were growing up and most recently had the real Kiffy which unfortunately she could not care for and was given to a niece. In comes “Kiffy” to save our Mom. My family and I thank Hasbro for manufacturing moms’ mechanical cat (they also have mechanical dogs and babies). Find the thing that calms your loved one.

We were also “lucky” as mom didn’t forget any of her kids when we came to visit. She had trouble with me as she often thought I was her brother. But at least knew I was family. But my three sisters were normally recognized immediately. Often this is not the case and I am sure she would have forgotten us eventually if she had lived longer but who knows.

Be patient more than anything. Realize it is not their fault and they have no control. I originally was not patient with her continually asking me the same question over and over. I would say things like “Mom you just asked me that”. I fed the beast that was within her and she would get anxious and upset.

Not until she moved back to Syracuse did I learn to be patient as her primary care giver. You have to just answer as if it was the first time she asked you and then attempt to get her focused on something else… that is why keeping her busy is so important. It hurt so much seeing what was happening to her but we always felt comfort that she was a happy person overall.

Mom (“Gooch”) passed away due to Pneumonia/fluid in the lung, fluid around the heart which was caused by asphyxiating on food and liquids & medicine required to bring her temperature down as high blood pressure, irregular heart beat and low oxygen levels had to be regulated. The inability to walk to get rid of the fluid in the lungs and heart was a huge detriment as well.

I sincerely hope that this helps others that find themselves in a similar situation.

And thank you Being Patient: Brain Talks as your members educated me and in turn I hope to educate others!

Roy and I just had our family Thanksgiving gathering with our two sons and their families. We are worn out but very happy!

My precious granddaughter Madisyn brought to me her twin baby dolls, Madison and Mason. I’ve loved them and she is letting me have them for when the time comes in my dementia journey that they may give me a calming comfort.  I’ll share photos and more about them in a future blog post!

I hope each and every one of ya’ll has a very very HAPPY THANKSGIVING!

 

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10.11.19 Dear God, by Jean O’Brien

Jean O’Brien has dementia.  On the Facebook Group “Being Patient: Brain Talks” Jean wrote a personal public letter to God about her life with dementia.  A lot of it rang so true in my life. However, I’ve never been mad at God about me having dementia, like Jean has. I believe He gave me dementia for some purpose of His. I have begged him to help me get through it and to let me live as long as possible in a good state of mind. Jean gave me permission to share this letter with ya’ll.

Dear God,

I’m not gonna go through all the, “why me’s?”, which, in the end, is not important and quite frankly, won’t do any good. You know why and that’s just something I have to deal with. It is what it is, something I have come to believe and live with.

I must admit that sometimes, I can get really mad at you, especially on those bad days when everything and anything seems to go wrong, like banging my face with the lid of this big garbage can or getting into the car and smashing my head against the side of it. How could that even happen? I’ve been getting into cars my whole life, I’m a professional, in fact, I even drive one. I shake my head in disbelief! No wonder I’m going cray-cray!

Or how about today that it took me so long to get a prescription authorized by the vet, to lose it just an hour later. Thank you, God, for that young lady who told me that if I lost it, not to worry because I’m in the system. I giggled when she said that! Lose stuff, who, me?

Now I look for things in the strangest places instead of in their “normal” spots, which can literally drive you crazy. Oh, I forgot, no pun intended, that’s what this is all about.

You did go a little too far God, and I’ve been meaning to talk to you about that. You gave me (I don’t know if that’s the right word), all these other physical issues, like having to wear that darn Darth Vader mask at night or arthritis inherited from my mother, rest her soul, at the same time that I’m losing my mind.

That’s really a messed- up combination, God, and now I find out that the emotional side of me is crumbling too. Well, I already knew that, but now I’ve earned the label! It’s like one of those Girl Scout badges! I don’t blame you, God, but you’ve got to cut me a little slack once in a while.

Thank you, that there isn’t much more that can go wrong with me, but then again, I better keep my mouth shut! I’m not mad at you for that, but on those sucky days, I’d just like you to give me a break. You’ve heard me yell at you – well, not AT you, To you, along with some other choice words- sorry about that, God, but I know you understand. Sometimes, I think you’re so busy with the world’s problems that you don’t have time for me or is that I’m just not listening. I know you’re always there.

It’s been almost 3 years since I was diagnosed, and I think I’m dealing with it pretty good, until I’m not. I can accept that one day, I’ll die, like everyone else, and I’m not afraid. I know you’ve got me, or that I’ll grow old and have those moments that everyone just shakes their heads and smiles.

Well, that’s already happening and only you know, God, where this is going to go. Thank you for giving me a sense of humor, although my wife thinks she’s funnier – that’s so cute, along with that spark of hope during this difficult time. I’m not hopeful for a cure, but I am hopeful that this will progress slowly and I’ll live forever and a day, and drive everyone else crazy!

I know it’ll be ok. But I’d like to ask you a favor and give me a head’s up when crazy is about to happen – like whisper in my ear or something. I don’t get any warning with this one, I don’t get to grow into it slowly and anticipate the craziness of my disease before it happens. It just happens, out of the blue, like driving to the wrong doctor or rehearsing in my mind, when it’s time to turn at the light. My memory has weakened but it’s my confusion that paralyzes me and that’s probably the scariest part of this.

Dementia has a mind of its own, how absurd is that, and it has no heart. It robs you of everything you are and everything you have built during your entire life, without your permission-quite frankly, it doesn’t give a crap who you are, where you’re from, how much money you have in the bank-nothing. If it’s gonna get you, it’s gonna get you.

Thank you for teaching me to go with the flow of my new life, to “embrace” it, sorry God, but I hate that word, it just ****** me off, as well as the word journey. I’ll embrace my granddaughter and take the journey of a lifetime- but not this. You’ve got to think of another word – I say Walk, but that’s not enough to describe this.

But please help people understand that this really messes with your mind and that we can easily fall into a deep, dark depression. Please have them learn about everything that can happen to us so that they can handle it better at the time.

Please send us good, supportive people who will lift us up, make us laugh and help us accept this disease, while respecting the fact that we are grieving our old lives.

So anyway, God, I have a couple of things I’d like to ask you for – I figure while I have your attention, I should take advantage of it. So here goes:

Please don’t turn me into a mean old lady, making everyone’s life impossible.

Please give my wife a second chance at love. I don’t want her to be alone.

Please continue to build my kid’s relationship so they always have each other to lean on.

Please put good people, like my wife, in their lives, supporting and loving them just as if I were “here”.

Please guide my kids in their careers so wonderful things come their way that they use to contribute to this world.

Please take good care of my granddaughter and whisper in her ear every night, that Gammaw was blessed to be loved by her.

Please take care of all the babies that I may not “know” or that I may never get the chance to meet.

And finally, God, please watch over and protect my family until we meet again.

Ok God, it’s late, and I know you’ve got a bunch of other people who need you.

Thanks for listening,

I have thought a lot recently about sharing how I am right now in this dementia journey. Jean’s letter to God sounds like my journey in some ways. Jean can still write and communicate fairly well like I can which is what drew me to share her thoughts initially.

I will share it soon. It always helps me to share and I’m always hopeful it helps you be able to care for someone you love better, and for my family to care for me better.

We’re going to have a family weekend so please pray I survive. If surviving on happiness is possible that will be us!

Ya’ll have a Blessed Weekend!

 

04.28.19 My Two Mothers, by Joann Snow Duncanson; and a personal note

Your Mom with dementia may still be here or she may have passed on. She will always be with you, as close as your heart. Bless us all in this journey 💗

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Two Mothers Remembered, by Joann Snow Duncanson

I had two Mothers – two Mothers I claim
Two different people, yet with the same name.

Two separate women, diverse by design,
But I loved them both because they were mine.

The first was the Mother who carried me here,
Gave birth and nurtured and launched my career.

She was the one whose features I bear,
Complete with the facial expressions I wear.

She gave me her love, which follows me yet,
Along with the examples in life that she set.

As I got older, she somehow younger grew,
And we’d laugh as just Mothers and daughters should do.

But then came the time that her mind clouded so,
And I sensed that the Mother I knew would soon go.

So quickly she changed and turned into the other,
A stranger dressed in the clothes of my Mother.

Oh, she looked the same, at least at arm’s length,
But now she was the child and I was her strength.

We’d come full circle, we women three,
My Mother the first, the second and me.

And if my own children should come to a day,
When a new Mother comes and the old goes away,

I’d ask of them nothing that I didn’t do.
Love both of your Mothers as both have loved you.

For support for this journey of dementia, join Memory People on Facebook. All the members, both dementia patients, and dementia caregivers, walk this with you, each step of the way. You are not alone. 💜

This is the link – Memory People on Facebook It is a closed group so you will need to join to see anything. I don’t necessarily feel that this is the “Best” Facebook group about Dementia but it is a very active group and you get to learn from others there.

On a personal note, the dementia I have has been on a roller coaster ride recently. I am still on the strongest dose of the medicine Galantamine. About two weeks after passing out due to my blood pressure being low I started taking my blood pressure medicine again. My blood pressure stopped being so low and is back to normal to a bit above normal. I am now taking my blood pressure every morning to see how it is that day and if I need the medicine or should skip it that day. This is so totally out of the norm for me and is just another weird thing my shrinking and holely brain is doing.

I’ve had difficulties recently putting my thoughts together or even having thoughts to allow me to write a blog post. Even things that other people wrote that I repost just don’t bring any thoughts to help me post it and share with ya’ll why I am posting it. It is a terrible feeling to start to do something I’ve done almost a thousand times now and nothing happens in my brain. I think nothing and that’s something that has been going on

from the beginning, just not all the time. I use to describe my dementia as not being able to think and that is a really accurate way to describe how it is sometimes. It’s not always that I can’t remember something, a lot of times it is that my brain won’t begin the thinking process to get to what I need to know.

I get great anxiety when I go to social events and want to talk to someone but then my brain stops thinking, I panic and can’t say anything. I just want to go in a corner and cry. I have never in my life had a problem talking. Anyone who knows me knows that talking a lot is probably something I was mostly known for. In addition, I can listen to others talk but when they get complicated with their talking my brain stops and I get anxious about what I will reply because I don’t know what they said. If this happens I don’t say anything to the person talking, just nod or smile every now and then and hope my brain starts working again.

I ask that when talking to me please tell me the basic substance of what you want to say not all the details leading up to it or surrounding it. Oddly enough I have always been a person who did exactly what I am asking people not to do. Please don’t avoid talking to me, just please try to understand how I handle conversations best. The frequency that all of these things are happening let me know that this small and holely brain thing is progressing. I am thankful that God has seen fit for this to be a slow moving brain thing and not a quick downward disease. I was first diagnosed in 2011 which is 8 years ago. Vascular dementia has a time span of between 8 to 12 years and I’m hoping I’ll be a special case and hang on longer than that!

I want others to learn about dementia from my experience but don’t want to sound like I am bitter. I do hate having this and would prefer to be able to think clearly and not have to avoid some social settings. But I know it’s all part of God’s plan for my life and He will be with me every step of the way. I did not intend to write so much today but when it comes into my brain I want to share! Hope each of you has a very Blessed Week!

10.06.18 Communicating with others when you have dementia

Saturday, October 6, 2018 – Somehow most folks believe that someone with dementia shouldn’t be able to carry on a semi intelligent conversation. They do not realize that when someone is diagnosed with dementia it may take several years to get to where conversation is a problem.  In the mean time the patient loses that capability on a very slow manner.
When people who know I have dementia talk to me they are surprised that my conversation skills are still fairly good.  Some days my conversational skills are great so I talk a lot then.  Poor Roy! The times that they are the best is when I am talking to people I’ve known a long time. Long enough to have deeply rooted memories to talk about. I can also talk for a while with no problem about my medical conditions and other people’s medical conditions and medicines.  I don’t know why that is, but I can!
During short conversations I’m still pretty okay but during longer conversations I can feel my conversation skills fading away and I tend to say things just to be talking.  My ability to remember what’s been said earlier in a conversation is not good.  It’s those times that I say stupid things or even inappropriate things because I have no filter stopping me from saying those things.  It is more than frustrating and I feel like I can’t just all of a sudden be quiet so I keep blabbing. Poor Roy lives with me and constantly hears the weirdest things come out of my mouth and just lives with it.
My inability to come up with the correct name for something is much worse than it use to be sometimes, not all the time.  However I’ve learned to just say “the thing” or “the place” or “you know what I mean”.  That works well with Roy but with others I feel I need to work hard to talk right so my brain is working so hard while I talk to them that I’m exhausted afterwards.
At times when my conversational skills and brain capabilities are not so great and I mostly stay home or just stay quiet.
Peter Berry, the man with dementia in the UK who puts out a weekly video, explained so very well in this video some of the problems people with dementia have carrying on a conversation. He describes it so well that I have to share this.

Please don’t not stop talking to me because you’ve read this and know it can be a problem for me.  I am no where near it being a problem all the time.  I need to have conversations with dear friends and family and be in their presence when I can, as long as I am able to.  If I am out in public it is because that day I can so let’s visit.  I am now learning that when I hit the wall in my verbal communications to just say “I can’t talk.” I also do better at my own home so if I invite you over, please come!

As my verbal communication goes away I am so hopeful that my written communication here and my ability to read hangs on as long as possible.  I am speaking out as much as I can now so that what I want is known.  When I can’t read any longer please come over and read parts of the Bible to me.  We’ve purchased a audible Bible for me to listen to when I can no longer read.  Most of my books on my Kindle can be audible for just a couple of dollars.  Reading opens my world and I love that and hope I will get to do it for a long time.

I’ve just written a five part blog post about our experiences so far renting Dora to families/couples for their vacations, tailgating, etc. We haven’t shared with many people all that’s happened while she’s been rented and in between.  It’s time we do that so I hope to publish them one part a day next week.  Dora is in the shop right now having many parts of her big awning replaced and her paint buffed.  We hope to have her back from the shop on Tuesday and she leaves with a young couple on Friday for the weekend.

Ya’ll come back now, ya’ hear!

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09.01.18 Brain Healthy Foods, Reposted from 09.01.15

blueberriesSeptember 1, 2018 – I wrote this three years ago, seems like yesterday.  My blood sugar and A1C are significantly better than they were back then.  My blood pressure (without medicine) is now under control.  Not sure about recent cholesterol since I stopped taking medicine for that.  I have an appointment with Dr.Valdes to go get current blood testing and check all of my medicines to determine what I should still be taking.

Our eight blueberry bushes are being moved into the full sunlight in a week or so where hopefully they will make blueberries in abundance for me to gobble up on since this is one of the best brain foods around.  They are fairly expensive in the grocery but they are so helpful!

 

Tuesday, September 1, 2015 – Several months ago the focus of my shrinking brain journey turned to eating brain healthy foods as a way of pumping up what’s left of my brain!!!  I really don’t know if it’s working but I have lost 20 pounds and know that just overall healthier eating is good for my whole body, not just my brain.

I also have Type 2 diabetes and have had difficulties controlling my blood sugar.  Since eating most of the items below and cutting out most of the junk I previously ate, my blood sugar levels have also come down some.  If you’re concerned mostly about sugars look each food item up and learn about that aspect.

I’ve been asked several times what is considered brain healthy food. Sometimes I forget some of it, so I thought if I put it all down here you’ll know it and I will have one place to go to remember it!!  This information comes from various sources.

Every source I’ve checked lists blueberries, spinach and nuts as the three highest foods to improve brain health.  I can’t say in what order all the rest melonsare ranked in brain healthiness so pick what you love and eat those!!

The list below tells the name of the food, the recommended daily amount if it is known and what I actually eat.  I consider this a list of foods I previously would have felt were splurge foods.  Since I’ve cut “almost all” unhealthy foods out of my diet I have the money to eat the “splurge” foods and really enjoy them!

I offer this list as someone who is absolutely not an expert in great brain food.  If you’re 60 or older and have noticed some cognitive decline, give it a try.  If you’re young and want to eat foods now that may help you later in life, give it a try!  If you’re a caregiver for someone with dementia, absolutely give it a try.

Eliminating as much sugar and bad fats are key!  If something below contains that, eat in moderation if you must eat them.  Also, WATER, WATER AND MORE WATER are a must. As much as you can, as often as you can and then drink some more!

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Blueberries – 1 cup a day in any form, fresh frozen or freeze dried – These are the very best for your brain and I avocadoeat them everyday.  Always keep frozen ones available for when the fresh run out.  Adding frozen blueberries to hot oatmeal is delicious!!!  Haven’t tried freeze dried but I’ve had blueberries covered in yogurt which are delicious.

Strawberries, blackberries, blackcurrants, huckleberries – Not as high as blueberries but delicious and worth adding to the diet.  I eat all of them whenever I can get them.  I try to keep on hand frozen strawberries, pineapples, blackberries and mangoes.

yogurtYogurt – a cup a day – I buy low fat Dannon vanilla yogurt because of the low fat, it tastes good and it’s fairly cheap.  I buy two large containers each week and that gives me a cup a day to add to smoothies or fruit bowls.  I’ve learned that smoothies are best for if you don’t have time to sit down and eat a bowl of fruit but the bowl of fruit is the better of both choices for you.  I daily make either a smoothie or a bowl of three types of fresh fruit, granola, flax seed and chia seeds mixed together.  You don’t taste the flax or chia seeds but they are very good for you.  You can buy small pouches of them for under $1 each that last for a couple of weeks.

Salmon, albacore tuna, sardines – 4-ounce serving, two to three times a week. – I love tuna in just about anything!  The others won’t make my grocery list!!

Mangos, bananas, kiwi, grapefruit, pineapples, cantaloupe, watermelon – at least two servings a day.  I eat all of these as much as I want!

Green and black olives – a few a day – I eat a can of black olives whenever I want to about once or twice a week.

Nuts and Seeds – an ounce a day of walnuts, hazelnuts, Brazil nuts, filberts, almonds, cashews, peanuts, sunflower seeds, sesame seeds, flax seed, and unhydrogenated nut butters such as peanut butter, almond butter, and tahini. – Walnuts and Pecans are the best, I eat at least 10 a day of nuts2walnuts, pecans, almonds, cashews, shelled or in the shell peanuts, and sunflower seeds.  I sprinkle flax seed and chia seeds on anything I’m eating in a bowl.  See my note about this in Yogurt. Also sunflower seeds (peeled) make a delicious addition to any salad!!

Avocado – 1/2 of an avocado to one daily. – I make avocado and sliced cucumber sandwiches , put them in salads and eat them with some italian dressing, and guacamole!!!  If you do not like mayonnaise use the avocado instead of mayonnaise on any sandwich!! This is a new addition to this information:  Avocados can be frozen by cutting them in half, taking out the pit, putting them in a freezer ziplock back and removing all the air (I use a straw).  When they come out of the freezer and thaw they are perfect!

Red wine – one glass a day – I don’t drink this every day but sometimes.

Celery, carrots and peppers – I buy a bag of fresh carrots and whole celery every week and much whenever I feel the need for something crunchy.

Broccoli and Cauliflower – 1 cup a day –  Raw is best – I love it that way and cooked (I only buy fresh, not frozen)

Whole grains –  Whole grains, such as oatmeal, whole-grain breads, and brown rice – I choose kaleoatmeal and whole grain breads.ark Leafy Vegetables –

Kale (a super food), collard or turnip greens, spinach – a handful a day – I stick with kale and spinach.  Kale or Spinach in a fruit smoothie is my preferred method of eating it.  You do not taste the kale in the smoothie but you’re getting the benefits!!  Kale can also be baked in the oven – toss in some olive oil, salt and pepper it, layer on a pan and back until crisp.  Spinach I love in salads also.

Beans – 1/2 cup of any beans will do.  I prefer red beans but then there is the sausage and fat that goes into the flavor so I skip beans mostly1

Pomegranate juice – Because pomegranate juice has added sugar (to counteract its natural tartness), you don’t want to go overboard,so approximately 2 ounces a day, diluted with spring water.   – This hasn’t been on my list but I’m going to give it a try!

Freshly brewed tea – Two to three cups a day of freshly brewed tea — hot or iced – Must be fresh brewed, not powdered.  Don’t add all the sugar and cream, a day of lemon juice adds an interesting twist!

Dark Chocolate – One-half ounce to 1 ounce a day

Crabs (also shrimp, lobster, crawfish to a lesser degree) – Eat as much as you want, I do!!! Crabmeat salad and boiled crabs, shrimp and crawfish. Fairly certain that only boiled seafood should be eaten for any type of diet!!

Tomatoes – one a day, don’t really know.  I buy enough to eat one a day whole if I want to.  Feels more like a treat that way!!shrimp crawfish crabs crabs

Curry contains Turmeric.  Haven’t tried it yet.

Eggs specifically, the yolks – one a day or more at once.  We eat egg salad sandwiches, scrambled eggs, sliced eggs on sandwiches, omelets, etc. but  not very often.

Pumpkin seeds – a handful a day – gonna add that one soon!

Add high, but safe, levels of B6, B12 and folic acid through vitamins.

I’m sure this isn’t every food that is brain healthy.  If anyone has additional items that should be on this list, let me know and I’ll add them.

I’ve enjoyed getting to splurge on these treats knowing they are helping, not hurting, me!

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08.25.18 Rewiring My Brain and Stepping into Alzheimer’s World, by Bob DeMarco

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Once you start to understand how things work in Alzheimer’s World – you get calm and comfortable.

Once you get calm and comfortable you give off a better “vibe” to someone that has Alzheimer’s.

Over time as you learn how to understand, cope and communicate with a person living with dementia you will find that instead of being at odds most of time you begin to relate better to each other. Once you start to relate to each other you find that it is much easier to operate in a world filled with Alzheimer’s disease.

The key word here is relate.

You relate well and get along best with your closest friends don’t you? Well in order to relate well with a person living with dementia – you have to adjust to the circumstances. I decided I would find a new way to communicate with my mother who was living with Alzheimer’s disease. I wrote that on my da Vinci pad in 2004. This was at the same time I was coming to another conclusion, something had to change and that something was me.

I did not perceived the changes in communication as being difficult. After all, I had been studying communication and decision making all the way back to college days, and ever since. I figured some practice and I would get the hang of it.

What I did not immediately perceive was how difficult it would be to change all the things I had learned over the course of my life.

For example, I had to learn how NOT to feel bad when my mother said something mean spirited to me.

I knew consciously that every time my mother said something “mean” to me, she didn’t mean it. I knew this because she never said any of those things to me before dementia started affecting her brain. Her ability to think and feel.

So, I knew it was Alzheimer’s that was causing her to be so “mean”.

Nevertheless, when Dotty said something mean, and even though I knew she didn’t mean it, I still felt sad, angry, and often snapped back at her. In other words, I reacted the way I would react to anyone that treated me in that way.

All I can say is, Wowie Zowie. It is very hard and very difficult to change patterns of behavior that you learned over 50 years.

I had to rewire my brain.

I decided it would be easier if I could put myself in a new place. This is why I invented Alzheimer’s World. Instead of trying to relearn my entire life, I decide I would start a brand new life, a second parallel life.

My new second life would reside within the confines of Alzheimer’s World. In Alzheimer’s World all the rules, feelings, and methods of communication would be different.

I started developing some ideas about how I would communicate effectively with someone that couldn’t remember they were mean to me, and really couldn’t remember my “too long” explanations of this and that.

In order to get control of my emotions I knew I had to move fast and seamlessly into Alzheimer’s World. I had to get there before the anger came up. Anger, even though I knew I shouldn’t be angry.

I came up with an idea that worked. As soon as the craziness started, I would take one giant step to the left. An actual physical step to the left. As I made this step, I would tell myself that I was going into Alzheimer’s World.

It took a while, but it worked. My brain was rewired. More or less segmented into two parts, real world and Alzheimer’s World. Over time I learned to separate one from the other.

Once I learned how to step seamlessly into Alzheimer’s World something wonderful started to happen. Dotty finally, after a few years, stopped saying all those mean and nasty things to me.

She started telling people, Bobby is a good boy.

Here is the best part. The better I became at communicating in Alzheimer’s World, the sweeter and more cooperative Dotty became. Not that the world is perfect. Dotty is still Dotty and she can still be a big pain in the butt.

You see, once I accepted that I needed to communicate and interact with Dotty in her new world she became happier and easier to deal with.

Now, we didn’t leave the real world. Alzheimer’s World is a combination of the two worlds. In Alzheimer’s World it is understood that the person can’t remember the now. They can’t remember the sentence before this one.

In Alzheimer’s World it is perfectly fine if someone asks the same question 20 times in a row.

This is how communication goes in Alzheimer’s World. In Alzheimer’s World it is perfectly fine if a person says NO 20 times a day. NO does not have the same meaning in Alzheimer’s World. In fact, in my opinion NO has no meaning in Alzheimer’s World.

Once you start to understand how things work in Alzheimer’s World you get calm and comfortable. Once you get calm and comfortable you give off a better “vibe” to someone that has Alzheimer’s. If you can get to the “vibe”, the person living with Alzheimer’s becomes calmer and feels more secure.

Let’s put it this way. If you were sent to live somewhere where all the people were purple and they spoke so fast you couldn’t understand a word they were saying — how would you feel?

If you felt like all the purple people didn’t like you — how would you feel all day long?

If you were stuck in this purple world and couldn’t figure out how to get out, and couldn’t understand how you got there in the first place — how would you feel?

Alzheimer’s World can be a wonderful place. In fact, most Alzheimer’s patients are very sweet once you get to know them. They are very appreciative.

Keeping stepping to the left. You’ll find the door to Alzheimer’s World.

This article is a repeat of an article that was published previously. It ranks in the top 25 most frequently read articles on the ARR, and has been widely shared via on Google+ and Facebook.

https://www.alzheimersreadingroom.com/2011/06/rewiring-my-brain-and-stepping-into.html

By Bob DeMarco, Alzheimer’s Reading Room

Ya’ll come back now, ya’ hear!

08.10.18 Alzheimer’s and Dementia from the patient’s perspective reblogged from January 2015

August 14, 2018 –  Since I originally wrote this in 2015 I’ve found two very interesting dementia patients who still communicate pretty well.  One, Rick Phelps, started a Facebook group called Memory People. Here is a link to that group: Memory People on Facebook   I’ve shared some of Rick’s writing before and plan to share soon one he just wrote about “anticipatory grief.”

The other dementia patient, Peter Berry, publishes on Facebook a weekly video on different dementia topics and an update on how he is doing. Here is a link to his facebook page: Peter Berry On Facebook

10460724_539323889537944_4082775068952904086_nThis week I want to share about Alzheimer’s from the patient’s standpoint.

“I’m Still Here” is a song about dementia, written from the patient’s point of view. It can be a helpless feeling after you get an Alzheimer’s diagnosis, and the support of your loved ones can help ease the stress that this disease causes. Click on the photo below to watch this short video!

i am still here graphic to go with song

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ALZHEIMER’S PATIENT’S PRAYER BY CAROLYN HAYNELI

Pray for me, I was once like you. Be kind and loving to me, that’s how I would have treated you. Remember I was once someone’s parent or spouse. I had a life and a dream for the future.

Speak to me, I can hear you even if I don’t understand what you are saying. Speak to me of things in my past of which I can still relate.

Be considerate of me, my days are such a struggle. Think of my feelings because I still have them and can feel pain. Treat me with respect because I would have treated you that way.

Think of how I was before I got Alzheimer’s. I was full of life, I had a life, laughed and loved you. Think of how I am now, my disease destroyed my thinking, my feelings, and my ability to respond, but I still love you even if I can’t tell you. Think about my future because I used to.

Remember I was full of hope for the future just like you are now. Think how it would be to have things locked in your mind and can’t let them out. I need you to understand and not blame me, but Alzheimer’s. I still need the compassion and the touching and most of all I still need you to love me.

Keep me in your prayers because I am between life and death. The love you give will be a blessing from God and both of us will live forever.

How you live and what you do today will always be remembered in the heart of the Alzheimer’s Patient.

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The following links are to stories from Alzheimer’s patients. Please spend some time reading each one of these stories told in a way that only they can:
|108I just found this blog called Welcome to DementiaLand by Wayne who does have a last name but I couldn’t find it just now.  I don’t know whether it’s my brain issues or his that make navigating his site difficult.  His level of sharing is great though and I felt strongly it should be included here.  

http://dementialand.chewtor.co.uk/#category2

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Interview with Alzheimer sufferer Richard Taylor: ‘You turn into a person you don’t know any more.’

http://www.spiegel.de/international/zeitgeist/interview-with-alzheimer-sufferer-you-turn-into-a-person-you-don-t-know-anymore-a-688049.html

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An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer’s but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

http://www.agingcare.com/Blogger/David-Hilfiker

108Harry Urban has lived with Alzheimer’s disease for seven years, “We have no typical days. You have your good days, your bad days and your Alzheimer’s days,”

http://www.agingcare.com/Articles/alzheimers-patients-share-their-experiences-153702.htm

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The video below  of a five year old singing “Peace in Christ” seemed appropriate to me to share with you today.  As a Christian with dementia, having peace in Christ is what gets me through every day. I hope you enjoy hearing this song!

Until next time,

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Click on the links below to go there!

Dora and the Explorers

Wacky Wonderful Wednesdays 

07.30.18 – When Language Fails in Dementia – AND – Dementia Medicines, by Teepa Snow

Monday, July 30 – Here is Teepa Snow with another amazing video that covers oh so much valuable dementia information.  She doesn’t just cover one aspect, there’s lots in this one.  I can already see some of the things I do in this and some that I hope are a long long way off.  The second video below is about three of the dementia medicines available today.  I’ve taken all three and am currently on Galantamine. Namenda is the fourth medicine but I think it is considered for midstage dementia and the three she talks about are for early stage dementia.  For me it’s been difficult to tell when I’m taking the medicine if it is doing a lot.  However when I’ve had to get off of any of them the decline in my thinking and being able to communicate is drastic.  I hope you will learn something from these two videos to educate you in taking better care of your loved one with this horrific disease.

Teepa Snow

When Language Fails in Dementia

Dementia in the middle-to-advanced stages diminishes communication & language. Watch Teepa Snow convey the power of music. See her demonstrate how to use rhythm and movement when language fails.

The left hemisphere of the brain processes language (left for language). The right processes signing, rhythm and curse words. How can dementia caregivers use these facts to help people having trouble with words and thinking? What is the best way to suggest a word? Or is it better to let someone struggle and figure things out on their own? Watch Teepa Snow offer tips on how to do your part with empathy, compassion, and concern.

What Do Aricept, Exelon & Razadyne Do?

See Teepa Snow talk about the top medications for Alzheimer’s & dementia. In plain English, she explores what they do and how they work. Get clarity on Aricept, Exelon and Razadyne (generic donepezil, rivastigmine and galantamine).

On the web page that I found the video on there is a table explaining the various medicines.  Here is a link to the page with that table.  It’s a little ways down the page past the video.  http://www.alzheimersweekly.com/2013/04/what-do-aricept-exelon-razadyne-do.html

Ya’ll come back now ya’ hear!

cooltext1838781539Click on the links below to go there!

Wacky Wonderful Wednesdays

Some Things I Learned About Dementia