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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Click on the links below to go there!

Wacky Wonderful Wednesdays

Some Things I Learned About Dementia

 

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

1d-5guilt.

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,

psalm 26 73

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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

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07.12.18 Deficits in Executive Function in Alzheimer’s and Related Dementia

Thursday, July 12, 2018 – I haven’t written about my dementia lately nor have I shared information about dementia that I’ve found in my reading.  Mostly because I haven’t been able to absorb much lately and putting the information out there just wasn’t happening.
All dementias are different so what is commonly thought to be what memory loss looks like can be very different from individual to individual.  I have new learning deficiency, short term (recent) memory deficiency and others including Executive Function deficiency. If I can help others understand that there is no one way that people lose their memory that would be a big accomplishment.
This article below is about one of the aspects of frontotemporal dementia which is one of the aspects that affects me a lot, Executive Function. When I saw the article from Alzheimer’s Reading Room in my email I thought I really should share this.
From the article:
Executive function is an umbrella term for cognitive processes that regulate, control, and manage other cognitive processes. These processes include planning, working memory, attention, problem solving, verbal reasoning, inhibition, mental flexibility, task switching, and initiation and monitoring of actions.

Executive Function is something I’ve been dealing with a lot the last two years. My deficiency in this area became very apparent to us when we were on the road last year.  Making plans during our travel has always been my responsibility.  I have always been an organizer and planner and I loved doing that.

When my brain was working at its best I could see the overall goal (the big picture), determine all the steps that needed to be taken to achieve that goal and on down to all of the details.  I was very good at that so now that I can no longer do any part of that well on most days, I just don’t like it.

The planning for our travels became very difficult because of my growing loss of Executive Function.  Having to compare two or more RV parks in various locations and remember what I found from each was impossible for me.  The parks we’d stay at depending on several factors (price, how far we would travel in a day, how close they were to what we wanted to see and on and on) Remembering what step I just did or read or found out (or I should say NOT remembering what I just did) made moving forward with the next decision something I couldn’t do without being frustrated.

We realized after a few months that if I couldn’t do this any more we couldn’t travel.  Roy could not be responsible for the driving, setting us up and taking it down at a park, all of the planning, driving us in our truck to and from places and just a lot more things.  He helped me with the planning as much as he could.  I wrote down each thing I did to try to remember.  While that helped it made everything much harder, taking some of the joy out of our travels.

For me to write today’s blog post and organize it properly my Executive Function had to be doing pretty good.  It is at the moment and I grabbed today’s good time to put this together!

Deficits in Executive Function in Alzheimer’s and Related Dementia

Brain Executive FunctionBy Carole Larkin, Alzheimer’s Reading Room

Shall we ponder some of the issues regarding slowly losing executive functions in Alzheimer’s and related diseases today?

First, let’s define what executive function is.

An article by Leilani Doty, PhD, the Director of the University of Florida Cognitive and Memory Disorder Clinics tells us that executive functions generally take place in our frontal lobes, right behind our forehead.

These functions include our ability to plan things, to solve problems, to organize things in our heads, to develop the initiative to start something, to make an appropriate decision, to consider consequences of our choices, to form an idea, to prioritize things, to be able to control your own emotions and to be able to think abstractly.

Additionally executive functions include:

  1. the ability to use working memory (to hold the item in your head long enough to use it or apply it to something else),
  2. the ability to pay attention to something without getting distracted,
  3. the ability to focus in on important details, to work towards a goal (plan), to adjust to changes (shift gears midstream)
  4. and, to know when to stop an action or task that has been completed.

These things are what place us above other animals; in other words what make us human.

Dr. Doty breaks it down into 4 main steps:

  1. Start: Think about the problem and what needs to be done. Think of a way to solve the problem. Consider resources, past experience, new possibilities, values, deadlines, etc.
  2. Maintain: Start acting on the first step and continue until that step is done.
  3. Switch: Do each step and move on to the next step in order to complete the task or solve the problem.
  4. Stop: Evaluate the outcome. Is the end result good, is it adequate, is it finished, or is more action needed? When done, then stop.

And here are some finer brain actions within the main steps of executive function:

  1. Forming ideas to do an action.
  2. Starting an action.
  3. Maintaining an action until the step is finished (knowing when a step is done).
  4. Switching behaviors to do the next step needed.
  5. Regulating, controlling and adjusting body actions to deal with changes and new information along the way.
  6. Planning a tactic down the road to deal with a new issue or new direction.
  7. Holding details in working memory.
  8. Controlling emotions.
  9. Thinking abstractly.

Knowing when the whole task is finished, stopping that task, and moving onto a different task or activity.

Follow this link to see the full article: http://alzonline.phhp.ufl.edu/en/reading/ExecutiveFxLatest.pdf.

Note from Rosalyn: I ask that my family and close friends read the full article above.  Please do it for me.  It explains more than just what Executive Function does, it says how it affects someone with dementia and I think will explain a lot about how I am different now than I use to be.  Please read this. 

Back to the article: Phew! That’s a lot of things that executive function controls.

Dementia Caregiver Information (and anyone else who is around the patient a lot)

Now imagine the neurons in that part of the brain beginning to die. Think of it as if there is a light bulb representing that part of the brain and it begins flickering; sometimes on strongly, sometimes on weakly, sometimes not on at all. Well that’s how it is for years and years in Alzheimer’s and other related dementias.

How do you (the caregiver) know when the person’s executive function is OK, kinda not OK, or definitely not OK, because it’s always fluctuating? The answer is: you don’t know.

You couldn’t possibly know. Because, of course, you are not inside their heads watching the neurons fire, or not fire. So here you’ve come face to face with the true evil which is Alzheimer’s or another dementia.

You are the caregiver. The one with the whole brain (theoretically). At any given moment, you are responsible for their safety and their continued existence on this planet. Yet, they deserve to be self-reliant and independent as any other adult would be. They know it and you know it.

What to do? What to say? Stressed out much, are you at this moment?

So now, I think we are talking about talking risks here, folks. We do it with them all day, every day. We don’t want to, but we’re forced to. They force us to because many times they are not even aware that the light of logic and reason is weak or has gone out. Oh and by the way, self awareness is another executive function.

To think about taking a calculated risk by trying to control the environment or the circumstances in which this action (or non action) takes place, as much as possible. By tipping the scale on the side of safety as much as you can, you are taking a calculated risk as opposed to an uncalculated risk. It takes courage, I know, in the face of the anger and other nasty emotions that you will faced with, from the person with the disease.

But at least try.

Alzheimer's Reading RoomCarole Larkin MA, CMC, CAEd, DCP, QDCS, EICS is an expert in Alzheimer’s and related Dementias care.  She also is a Certified Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementias issues. Her company, ThirdAge Services LLC, is located in Dallas, TX, and her website is www.thirdageservices.com.

Original content the Alzheimer’s Reading Room

The Alzheimer’s Reading Room is the publisher of high quality expert content and news for the Alzheimer’s and dementia community.

Ya’ll come back now, ya’ hear!

06.21.18 Some Things I Learned About Dementia – Love them, be kind to them, be sweet even childlike sweet originally published 12.19.14

Thursday, June 21, 2018 – This was originally written in 2014.  I have to admit that while re-reading this particular blog post from 2014 it brought tears and heartache to me.  I have read so many stories and episodes that caregivers have shared of how difficult care giving is and it absolutely is.  It’s horrendously difficult to watch your loved one suffer and turn into someone unrecognizable.  A common comment from spouses of someone with dementia is that “It is so hard to grieve the loss of someone who is still living.”   I now see these difficulties from the other side and feel the importance of others understanding this horrible disease from our side as well.

10609479_773060536095512_770022682920397739_nOriginally published 12.19.14 – Nothing in today’s blog is from any source other than our experience with Mama. She lived in our home during the final stages of Alzheimer’s. While we were moving from one house to another (and doing renovations on the new house) she lived in a local Assisted Living Home. Most of the main points I make below can, and I hope will be, used in your care giving. I’ll share what we did that seemed to work and you take it from there to fit your situation.

This week’s blog started out being about two other topics. However, as I collected information to share and writing pieces to add into these blogs, one thing keeps tugging at me to be shared first.

So here it is: Love them, be kind to them, be sweet even childlike sweet. Always strive for patience and calmness. Pray often for these things. It may not be in your nature to love others, be kind to others or be sweet to others. If not, I beg that you try it during this time. fake it if you must, but be loving, kind and sweet to them.

BE LOVING

Are caregivers saints?? No, but sometimes it will feel like everyone expects you to be one and you may feel heavily weighed down with this responsibility. My solace was knowing that God is my Savior, my King, my everything and He would never leave me alone as I cared for Mama. My pastor was a great comfort during that time. My husband was my hero loving Mama like she was his own Mama and allowing our household to be completely turned upside down for a long time. Normal took on a new meaning and I can’t stress that enough. We learned to laugh a lot and be silly to break the stress that sometimes hung in the air. My sister was my primary relief and was wonderful about coming to stay with mama as often as I needed her to. She’s my only sister, so it fell on us to care for mama in her last years, as she10734192_10152473918576198_829463759479924163_n so willingly loved and cared for us during our childhood years and on into our adult years.

These Alzheimer’s patients (I’d like to call them victims) didn’t make the choice to lose themselves to this disease that eats away at their true being, a little piece at a time. They are very dependent on their caregivers for a lot during the middles stages and for everything during the final stage.

It is easy to say “They don’t know what’s what, so why even care?” Can I say strongly enough “Shut it”. Don’t even go there if you have a loved one in need of your care. Most likely they were one of your primary caregiver when you were a baby growing into a child, teenager and didn’t let go until you became an adult. They loved and cared for you then and now is your opportunity to return that love and care.

Making the decision to become the primary caregiver may not have been a choice you made. You may have gotten it by default or you were the only one available. Whatever the reason, you have in your hands the heart and well being of someone for the final years, months and days of their lives. It’s a lot like being a parent, only the roles are reversed now.

Near the latter stages of Alzheimer’s Mama didn’t always know either my sister or I was her daughter, whose house she was living in or even who she was. Then nearer the end she couldn’t speak, walk, or smile any longer. This decline occurred over maybe a month or two so I know we were very blessed at that short period of time.

She had the most beautiful smile, I just had to share that!

During this time I started calling mama “pretty girl”, touching her face lovingly with the back of my hand, and loved her like a child loves to be loved. No matter what was happening in the rest of the house or how many times she’d call me into her room for the same thing over and over I “tried” to always enter her room with a smile on my face. She responded with sweet smiles and if she had been agitated like they sometimes are, that would stop.

10606322_770140433054189_4461898516402014795_nWhen they leave the world of reality for their bizarre little world, creating peace and happiness in some form for them is key.

I had two little beanie babies that we gave Mama as her babies to pet and love, and she was so happy with them. Mama loved to be needed and be helpful to others. She took right to taking care of the babies in the same way she use to take care of us. We would talk to them and she’d tell me stories about them and the joy on her face during those times was so heartwarming.

When she’d tell me some absolute foolishness I’d go there with her to her weird little world, and we’d have a grand old conversation.

Most people benefit from the touch of another person. These wonderful people are no exception. Mama often applied hand lotion to her hands pre-Alzheimer’s and her hands were always soft. She responded so well to having that done while living with Alzheimers that we made a regular practice of doing that. Just that simple act calmed and soothed her spirit. Don’t just stop with the hands and arms (and while doing that do it slowly so they enjoy it longer) every now and then do their feet and legs. The stimulation this gives them is so therapeutic to giving them another moment of light in their otherwise darkening world.

In one of next week’s topics I’ll share more about how we tried to provide a peaceful loving environment for Mama based on her love for the Lord.

Your Alzheimer’s patient isn’t my mom, so your choices will be different, but they all deserve all our love and kindness. You will see that message in my different forms throughout the weeks this blog is written.

index Please come back next time when I’ll share two topics: Learning about your loved ones lives before it’s too late and how to use their passions from when life was good to bring some joy into their current lives If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.

If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is rosalyn@selu.edu if that is an easier way to communicate.

Until next time,

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