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Newbe Here...My mind is blank
flashdrive
Posted: Friday, March 28, 2014 8:25 PM
Joined: 3/28/2014
Posts: 2


Hi everyone, I just started today. My father and my grandfather had AD and I seem to be showing things that are pointing in that direction myself.I am going thru testing right now.

 

I have a question...I have a wonderful relationship with God and I'm terrified that I will forget Him. Can anyone give me some insight on this?

 

There is so much I want to say here, but my mind is blank. I'll write more tomorrow.


Paul Hornback
Posted: Saturday, March 29, 2014 8:16 AM
Joined: 8/9/2013
Posts: 584


Flashdrive, welcome to the boards. I have Early Onset Alzheimer's disease and I struggled with your same question initially. I have a wonderful relationship with God and after much prayer, He put my heart at ease about the disease and its impacts with respect to my relationship with Him. Each day I read the Bible, pray, meditate, and write which keeps me connected with Him daily. I think this keeps Him fresh in my mind so even though I might forget other people, He remains in my heart and on my mind.

I write a daily devotional blog for Alz and dementia patients. It is currently focused on the Psalms. If your interested you find it at:

http://www.faithfulfoggyliving.com/

Let us know how your testing comes out. Keep your faith strong and God will help you through all you are experiencing. He has brought me great peace and comfort through my ordeal and I know He will do the same for you.

God Bless, Paul


alz+
Posted: Saturday, March 29, 2014 11:59 AM
Joined: 9/12/2013
Posts: 3608


what a beautiful first question!

My experience is that the soul part of us, beyond mind and body can become even more light filled.

 When my father died I was sitting with him holding his hand and singing. My children had flown in and it was quiet night on ward. Although he had not spoken words in many years we communicated easily. He had trouble letting go of his body, his last thought communicated to me was his worry about his wife, my Mom. I promised him we would take care of her and he could go to Jesus when he was ready. He opened his eyes, they were brilliant and clear, he squeezed my hand and left.

 

Other people I have known in end stage Alzheimer's appear to have light radiating out of them.

Our consciousness is very aware through the whole experience and some one like you or Paul will be aware - maybe even more aware than ever - of the divine presence.

 

Also have found Alz people develop a 6th consciousness / awareness level that reads instantly the energy of people around them and know who is sincere and who is sick of us or angry immediately and we react to it. 

The environment will be a large part of how one goes through this illness. Find people willing to learn how to communicate with dementia. it is a spiritual practice on many levels. Many people will refuse to go there.

Just my opinion, but based on being a caregiver at times and now having EOAD and knowing the gentle effect those who get it have on me, and the opposite from those who refuse to learn. Not judging them, but hope you find the gentle people.

love to all


Mimi S.
Posted: Saturday, March 29, 2014 7:01 PM
Joined: 11/29/2011
Posts: 7027


Welcome to our world, Flashdrive. Why that name?

I'd suggest you ask your librarian to get you a copy of:The Alzheimer's Action Plan by Doraiswamy and Gwyther of Duke University. It will show you the kind of testing you should be undergoing. The MRI will most likely be used to show that you do not have certain conditions that can mimic dementia. It's most likely way too early for any dementia signs to show up. Also sophisticated blood tests will be used to also eliminate other possibilities.

The neuro-psych will possibly be divided into two or three sessions. You said you flunked the tests the doctor gave you. These will be similar but will probe many more area. 

Please, don't be upset if you don't have the foggiest idea of what some answers are. 

Just do your best and let the experts figure out what the pattern discloses.

When you do get your results, you also want to know what your best area are. that will help you figure out how to make for your weak spots.

Many of us on these boards are convinced that participating in Best Practices has enabled us to stay longer in the early stage.
1. If you are prescribed meds, take them. Don't wail until you get worse.

2.Build up your physical strength. Strenuous exercise so that you get your heart pumping at a faster than normal rate for a time. Research has shown that this can actually build new brain tissue!
3.Strenous mental activity. A variety is best.4
4. Mediterranean Diet. I also take Omega 3 and antioxidants.

5. Maintain or increase your socialization activities.


Myriam
Posted: Saturday, March 29, 2014 9:11 PM
Joined: 12/6/2011
Posts: 3326


Wanna welcome you, too, Flashdrive! Many years ago, I had a boyfriend whose nickname was Flash. You brought back great memories and some regrets for me.
Forget-me-not
Posted: Sunday, March 30, 2014 12:45 AM
alz+ wrote:

what a beautiful first question!

My experience is that the soul part of us, beyond mind and body can become even more light filled. 

 When my father died I was sitting with him holding his hand and singing. My children had flown in and it was quiet night on ward. Although he had not spoken words in many years we communicated easily. He had trouble letting go of his body, his last thought communicated to me was his worry about his wife, my Mom. I promised him we would take care of her and he could go to Jesus when he was ready. He opened his eyes, they were brilliant and clear, he squeezed my hand and left. 

  

Other people I have known in end stage Alzheimer's appear to have light radiating out of them.

Our consciousness is very aware through the whole experience and some one like you or Paul will be aware - maybe even more aware than ever - of the divine presence.

 

Also have found Alz people develop a 6th consciousness / awareness level that reads instantly the energy of people around them and know who is sincere and who is sick of us or angry immediately and we react to it. 

The environment will be a large part of how one goes through this illness. Find people willing to learn how to communicate with dementia. it is a spiritual practice on many levels. Many people will refuse to go there.

Just my opinion, but based on being a caregiver at times and now having EOAD and knowing the gentle effect those who get it have on me, and the opposite from those who refuse to learn. Not judging them, but hope you find the gentle people.

love to all

What a beautiful post! This is my hope that when words fail us, DH and I will still be able to communicate on a soul level. I try to hone this skill with meditation, learn to listen to inner voice in silence. Do you have any other suggestions how to learn to communicate with dementia? This subject is very dear to my heart.

flashdrive
Posted: Sunday, March 30, 2014 11:57 AM
Joined: 3/28/2014
Posts: 2


Thank you all for your heartfelt replies. I am taking this one moment at a time and I'm praying to have a clear mind for God. If all I have is God, I'll be fine...thank you.

 

I lead a devotional group on a social network every day. It really lifts my spirits to start off my day praising God. Its getting harder to be able to pray spontaneously. I try to write down what I want to say but its not as spontaneous as I would like. I pray what's in my heart.

 

Again, thank you so much for making me feel welcome


alz+
Posted: Monday, March 31, 2014 11:03 AM
Joined: 9/12/2013
Posts: 3608


t here are probably 10 similar books out there, the one that got me and my husband to understand AD was LEARNING TO SPEAK ALZHEIMER'S

Other people have favorites.

the blog by bob dimarco called ALZHEIMER READING ROOM (?) I think - he exudes the patience and open mindedness people need to make the person with dementia feel safe, comfortable and happy.

 

Before I learned these things I cared for my Dad by looking into his eyes and being silent and letting him convey what it was he felt/needed//wanted.

It just sort of happened. No one else in my family did this.

 

There is a nurse who has videos online - very good as she demonstrates how asking the ALZ patient one way or another affects the outcome. How to approach people.

 

I have food poisoning so ca not write more but search Learning to speak Alzheimer's and on the page will be OTHER CUSTOMERS ALSO BOUGHT and then choose from there.

I know this is going to be ok for you.

love for all

 


Paul Hornback
Posted: Monday, March 31, 2014 5:45 PM
Joined: 8/9/2013
Posts: 584


flashdrive, just keep praying as best you can. God hears our prayers and the Holy Spirit even helps us when we can't pray as well as we'd like.

I'm encouraged that you still lead a devotional group. I still teach a Sunday School class for young adults although it is getting much harder to think spontaneously, like you have said. However, my wife fills in for me when I falter.

Keep your positive outlook, keep praising God, and with His help we will both get through this bringing honor to Him. You are now in my prayers!

God bless, Paul


Forget-me-not
Posted: Wednesday, April 2, 2014 6:53 PM

alz+ thank you so much for your advice and wisdom. I ordered Learning To Speak Alzheimer's for a start and will take it from there.

I hope you got over the food poisoning--it's a miserable thing to go through. I value your input very much and am grateful that you take the time to guide us caregivers along and give us the insights we need.


alz+
Posted: Friday, April 4, 2014 10:26 AM
Joined: 9/12/2013
Posts: 3608


Forget-me-not wrote:

alz+ thank you so much for your advice and wisdom. I ordered Learning To Speak Alzheimer's for a start and will take it from there.

I hope you got over the food poisoning--it's a miserable thing to go through. I value your input very much and am grateful that you take the time to guide us caregivers along and give us the insights we need.

appreciate knowing some of my experience is of good use.

 

It is a fatal illness, those of us who have it can not tell you what is wrong, whether an abscess in a hip like my father suffered unnoticed in nursing home, a bad tooth, a needle in a foot (things I have witnessed).

you are everything to us as we lose contact with familiar reality.

 

we may never be able to say it but we love you so much, we are frightened, we are not stupid, belligerent on purpose, we know you have lost your dreams for a time, that we may be costing you money and years and we are so grateful. We don't show appreciation enough, but like infants respond to love and care and attention, we might respond - you might learn to see it. We all hope our caregivers learn to see how much you matter to us.

In the divine sense, what you are doing is part of the great spiritual path few choose to walk.

 



Amerongen
Posted: Friday, April 4, 2014 4:34 PM
Joined: 6/13/2012
Posts: 243


That brought tears to my eyes. I had to wait a while before I could read it to my wife with AD. Yes, we caregivers do realize you depend on us and love us or it would not be possible for us to continue. That was a shot of reality from the person with AD's point of view.
CyndiR
Posted: Sunday, April 27, 2014 8:18 AM
Joined: 6/20/2013
Posts: 311


Flashdrive--Welcome though I am sorry you have to be here.  I hope what I am going to say here will help you somewhat. 

 

My father became a born-again Christian in 1977.  From that time until about a year ago, he was in church every Sunday and Wednesday evening unless he was too sick to attend or if the weather did not permit (occasional snow storm in NC). Even as we could see that his memory was slipping and became concerned about his driving, his faith in the Lord remained strong.  Once we placed him into assisted living last year, we tried to keep him as active in his church as humanly possible until his behavior became volatile and unpredictable.  Even then he kept saying how he missed his church.  He also lost the ability to read and was unable to spend time reading his Bible, but if you started quoting a verse, he would take off with it and was crystal clear on where the verse came from and what context it was used.  Towards the end, when he was unable to move around, I would spend time with him and read to him from his well worn Bible.  No matter what kind of day he was having, this one thing would give him some peace and bring a smile to his face.  On his last day, as he was going through the death rattle, he only quieted down when I sang Amazing Grace to him.  His faith was that strong and deeply ingrained in him, and dementia did not take it away from him. I rejoice that he is now in Heaven, healed and whole.

 

if at all possible, if you can surround yourself with people and an environment that will reinforce your faith, I don't think you will have a problem.  Peace to you.


Paul Hornback
Posted: Tuesday, April 29, 2014 8:00 AM
Joined: 8/9/2013
Posts: 584


CyndiR, Thanks so much for your encouraging post about maintaining and practicing our faith. I feel the same way. As long as we surround ourselves with people and an environment that reinforces our faith, we won't have any problem remembering the Lord as the impacts of dementia slowly increase in our lives. I think that is why I write a daily devotion (faithfulfoggyliving.com), read Scripture, pray and meditate each day. I hope even when I can no longer do this, someone else will read to me and pray with me each day.

Thanks again for your encouraging post and the story about your father. It stands as a wonderful reminder that God works in our lives throughout the course of dementia.

God bless, Paul


Peace39
Posted: Thursday, May 1, 2014 1:46 PM
Joined: 4/29/2014
Posts: 2


CyndiR 

Wow, gave me goosebumps…… My father is 77, sounds a lot like your dad…..He was just diagnosed 4-25-14 Alz.  My heart is breaking, confused, and somewhat still in denial (thinking it must be something else). But I will educate myself on the disease and read all the helpful posts possible.

 

 

Peace


Myriam
Posted: Thursday, May 1, 2014 2:34 PM
Joined: 12/6/2011
Posts: 3326


Welcome, CyndiR!
Iris L.
Posted: Thursday, May 1, 2014 2:57 PM
Joined: 12/15/2011
Posts: 18219


Welcome, Peace39.  Your father's hypothyroidism must be treated aggressively.  After two or three months of normal thryoid levels, you may see an improvement in his cognition and functioning. 

 

I noticed an improvement when my hypothyroidism was treated.  My TSH was not as high as your father's.

He probably won't return to normal, but there may be improvement.

Iris L.
 


Peace39
Posted: Friday, May 2, 2014 8:21 AM
Joined: 4/29/2014
Posts: 2


Iris L.  I agree !!  His TSH is an 8, and only a couple of months ago was 4.5…..I have hypo and am treated and feel so much better, so I understand the importance of that so well, that was my suggestion to them is to treat aggressively….. He was put on Levo .50, Septa (for sinus infection which they found on brain scan, and Aricept all at one time, then started feeling sick….. IMO the aricept can come after the thyro is normal so we are not introducing too many meds at once.  

 

The other problem is my mother continues to keep nothing but junk junk junk to eat in the house and now he is eating very little and too much sugar.  I still think there is another underlying problem going on, there is no way that my dad in one month is gone to crap !!  I want answers and am going to make an appt with his doctor to talk privately.  My dad gave his permission for us to do that.  

Peace


Iris L.
Posted: Friday, May 2, 2014 1:15 PM
Joined: 12/15/2011
Posts: 18219


Peace39, you're right about introducing one drug at a time, if possible, to assess the response to each.  This doesn't apply to antibitiotics, if the patient has an infection.

Be sure your father signs a HIPPA form and adds your name on it.  This will give the doctor permission to discuss his case with you.  Otherwise, you can talk with the doctor, but the doctor cannot discuss with you.

There is some suspicion of a correlation between diabetes and dementia.  You may want to do some google searches for this.  We patients try to follow the Mediterranean diet, which includes eating lots of vegetables and fruits in order to gain antioxidants, and also adding fish for omega-3 fats.  A heart healthy diet is a brain healthy diet.  Patients tend to develop a sweet tooth but this must be moderated especially in the early stages when there is hope for improvement.
 

 

If you visit the Caregivers board, you will get many more tips and advice from the very knowledgeable and caring caregivers there.  Don't forget us patients, though. 

Iris L.
 


Myriam
Posted: Friday, May 2, 2014 1:19 PM
Joined: 12/6/2011
Posts: 3326


Aricept can cause stomach upset for many who try it. My doctor switched me to the Exelon patch. You may want to speak to his doctor or encourage your father/mother to pursue a prescription for the Exelon patch. I wouldn't do without it.
 
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