01.23.15 Some Things I Learned About Alzheimer’s – From the Patients Perspective – Reblogged August 2018

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.

1d-510 REQUESTS1d-5

The following links are to stories from Alzheimer’s patients. Spending some time reading each one of these stories told in a way that only they can:

108Norman Mc Namara, diagnosed with dementia five years ago aged just 50yrs old.

http://tdaa.co.uk/norms-pages/

108Interview 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

108

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

108Leah, a 58 year old former elementary school teacher, was recently diagnosed with vascular dementia. This blog is her way of reaching out to family members and caregivers of others with dementia and Alzheimer’s who want to know what life for their loved ones is like.

http://www.healthcentral.com/alzheimers/day-in-the-life.html

108Harry Urban has lived with Alzheimer’s disease for seven years

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

1d-5guilt.

1d-5Please come back next time when I’ll share several links to stories written by Alzheimer’s caregivers. 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,

psalm 26 73

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01.16.15 Some Things I Learned About Alzheimer’s – a personal blog original – reblogged 01.05.18

rosalyn useI didn’t plan to publish a new post today.  After Wednesday’s visit to my neurologist (I call him my brain doctor) I changed my mind.

I open my personal life on my personal blog but have only shared about my mama’s journey through Alzheimer’s on this one.  I am sharing my story because it is different than someone with Alzheimer’s but it includes memory loss and thinking deficiencies you may see in a loved one.  I’m hopeful that knowing my story may help someone and that’s my whole intent in anything I write about.

I’ve known for about three years now that I have many lesions in my brain (I call them little holes) caused by having multiple TIAs (Transient Ischemic Attacks – mini strokes ).  I also knew that I had atrophy in my brain but the emphasis originally was placed on stopping the lesions from increasing in number, until now. Since the initial diagnosis and for quite a while before that, I realized my memory and thinking were not what they use to be.  I have a high IQ and was always able to do multiple things at once and the decline in a couple of areas (short term memory and thinking) had become very noticeable to myself and my husband in the last 5 years or so.

Three years ago, after a series of psychological testing by Dr. Susan Andrews a neuropschologist followed by numerous dr-shamsniamedical brain tests by my neurologist Dr. Morteza Shamsnia, I learned about my circulatory problem, the lesions and some brain atropy.  Dr. Shamsnia prescribed Plavix (a blood thinner) to prevent more TIAs and Aricept which you all probably know as a medicine for Dementia patients with mild to medium cases (early to middle stage) to improve memory.  I am hopeful it will help improve my memory and thinking.

I was also told that I had to diligently use my CPAP for the sleep apnea which I have.  I wasn’t good about using it until then and unfortunately the lack of oxygen may have opened the way for the multiple TIAs I’ve experienced.  Since then I find I cannot sleep if it’s not on me. I see this as God’s way of pushing me to do this important thing to stop these TIAs.

rosalyn use 5At a visit a few weeks ago, my neurologist said he wanted a new MRI to submit with my request for Social Security Disability which I plan to pursue.  I had the MRI shortly after that appointment and returned yesterday to see Dr. Shamsnia to get the results.  The good news is that there are no new lesions so the Plavix seems to be doing its job.  I brought him the computer chip out of my CPAP (it records every time I use it) and he could see I use it all the time.   Yay for me finally listening to a doctor and doing what he tells me to do!  He told me that because of the importance of this to my brain’s health, I should get a back up battery for it should we ever lose electricity at night.

Now that the increase in lesions is under control, the focus shifts to cerebral atrophy (shrinking brain).  I haven’t followed up with as often as I should have or this focus wouldn’t have taken so long to come up.  In his words, I have significant brain atrophy far more than someone my age should have.  I have had it for a while but we don’t know how long and we also don’t know the cause of it.

Here’s a brief definition of Cerebral Atrophy I found at the National Institute of Neurological Disorders and Stroke website:

Cerebral atrophy is a common feature of many of the diseases that affect the brain. Atrophy of any tissue means loss of cells. In brain tissue, atrophy describes a loss of neurons and the connections between them. Atrophy can be generalized, which means that all of the brain has shrunk; or it can be focal, affecting only a limited area of the brain and resulting in a decrease of the functions that area of the brain controls. If the cerebral hemispheres (the two lobes of the brain that form the cerebrum) are affected, conscious thought and voluntary processes may be impaired.

I didn’t know this to ask whether mine is general or focal. I also didn’t think to ask him what percentage my brain has atrophied.  I need to bring my husband for my next visit so all the questions are asked. Dr. Shamsnia didn’t mention Dementia and I have to admit that I was terrified to ask the question so I do not know if that is part of this but the definition of Dementia is filled with symptoms I have.

Dementia is characterized by a progressive impairment of memory and intellectual function that is severe enough to interfere with social and work skills. Memory, orientation, abstraction, ability to learn, visual-spatial perception, and higher executive functions such as planning, organizing, and sequencing may also be impaired.

I will have to work up the courage to ask about dementia at my next visit. You’d think I’d be comfortable asking about it rosalyn use 2since I write about it but since its me, my fear kicked in.  I should have asked because then I could face it or scratch it off of my concerns. I know that God will cover me with his love and as always will walk with me through this storm as He always has.

The causes for cerebral atrophy are: 1-Stroke (he says mine were just mini strokes and wouldn’t cause the atrophy),  2 – Malnourished (ha! I definitely don’t look malnourished BUT a vitamin deficiency of some sort is in that and could be the cause), 3 – Brain injury (which I’ve never had that I know of).

Because the main probability for me is a deficiency of something, the next steps are to see what my family doctor does blood work for (I had a blood test Wednesday morning).  If my normal test doesn’t include things that I could have a deficiency in (causing the atrophy) Dr  Shamsnia will order those tests.  Once we know those results, he will know what to address to start putting an end or slow down to the continuous atrophy.  People my age normally have approximately a one percent brain size loss each year until they die.  Mine is not a normal amount.   I’m also to try to get copies of any brain MRIs I’ve had in years before 2011 to see what showed up then.

rosalyn use 0I have an inability to take care of two things at once any longer, much less 5  things.  If I cannot focus on the one thing I’m doing or have any interruptions I don’t produce the quality of work I strive for.  I still live quite independently but my Hero husband has learned to pick up the slack in our daily lives and helps me remember things all the time.  Having a phone with a memo pad on it and Google calendar alarms help a lot!

Dr. Shamsnia says that me doing the research for, and compiling the three blogs I publish, is excellent for keeping my mind active.  Oh, and spell check on the computer helps disguise the deficiency in my typing that has been very apparent in recent years.  I can still type 100 wpm but my one mistake I’d make has changed to 10 mistakes.  My brain just doesn’t tell my fingers the correct words but spell check saves the day! Our RV lifestyle is also good for it, since when we live on the road most of the real life responsibilities are greatly reduced.  God has guided us through this life changing process and I am so thankful He is there every day with us.

Dr. Shamsnia is putting together a letter to Social Security detailing my journey and I’ll be applying online shortly.  He feels that with his documentation I will be able to get it.  I will share with you that journey as it maybe helpful to someone doing that for themselves or their parent with Alzheimer’s.  Social Security disability is a mysterious world to me, so if anyone has any advice please share!

I’ll get back to sharing information about Alzheimer’s and will include, when I have them, updates on my brain atrophy. I have to admit I have a deep concern that some of the things I’ve shared about what Alzheimer’s does to someone, are the things I may face.  There I’ve said it out loud.  My son and husband already know that what I write to you all is also written to them in case I need them to know these things I find important for caregivers.

rosalyn use 1

Enough of that,  ya’ll have a fabulous weekend!

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01.09.15 Some Thing I Learned About Alzheimer’s – Mama’s interesting conversation original, reblogged 01.06.18

mama reindeer ears
Mama at Thanksgiving, a very good day for her with all her family around her. She loved these reindeer ears so we let her wear them. The dialog below occurred around this time.

Roy and I are deep into constructing a new house which takes up lots of time. So for the next couple of months I’ll be posting this blog every other Friday.  Once the house is finished I’ll go back to weekly publishing!  Thanks for following our blog!

I planned to wait a bit before posting today’s dialog until you all knew my mom a bit better.  When I was putting the finishing touches on the original blog for today I kept thinking about this and realized this is what I’m suppose to share today.  Possibly someone out there needs to read it because their loved one is in this stage or nearing it.  The dialog below was fairly typical of a lot of evenings with mama during the last stage of Alzheimer’s.

I will believe these ramblings of mama’s will be very eye opening for some.  When I’ve referred to “this bizarre little world they live in” this is that world.  Sometimes these ramblings would go on for hours and skip a few days and then pick up day after day.  Having a baby monitor handy to take with me wherever I went I was able to get away from the constant rambling but still be in touch so I could step in if she really needed me.  If you have the money to buy a monitor with a video screen I’d say get that.  I didn’t have that but feel it would be a valuable tool in caring for them.

Something I want add here is that even though she doesn’t say it in this piece below she began calling her bed her “rack”.  Anytime she hollered out it would be something about getting her off “this rack”. Took a bit to make that connection but since she said it numerous times a day we figured it out!  Here we go with:

fancydivider1ONE EVENING IN NOVEMBER WITH MAMA

Sunday night November 18, 2007 – 9:35 p.m.

After me going into check on her twice when she’s called and Roy going in to check on her twice I went upstairs to our bedroom and I’ve been listening to mama talk through the baby monitor for about an hour now. Since I can’t go to sleep until she’s asleep I decided to type what she’s saying.

“Where is my chair. I can’t find my chair. Someone took my chair. They don’t have anything better to do than to take my chair.”

“I have so much to do and I never get finished. I have so much to do but I enjoy doing it. Sometimes I think I do too much but sometimes I enjoy it. Uhmmm… But I need to do it and I enjoy it. Uhmmm it hurts but I enjoy doing it. It hurts too.

10013906_10152873429361718_2039051400472671846_nIt hurts but I have to do a lot of stuff. But you know it’s good and you’re suppose to do it. But it’s hurting you when you have to do it. It hurts, because it’s something you’re suppose to do. You’re suppose to do it, you need to do it. You have to do so much. You need to do certain things. Whether you like it or want to do things but that’s the way it goes. Oh Lord help me to realize it. Certain things you got to do whether you like to or not. And it hurts whether you like to do it or not. Thank you Lord for giving me the common sense that things have to be done whether you want to or not. “

Long silence.

“So many things I need to get so many things off of my mind. And I need so badly to help and do things that I mainly would not like to do but Lord knows no I can’t do everything I want to. And I just can’t get everything done. NO and I can’t get everything done for everything. Ohhhh I know I can’t … but I gotta try. I need to try and I do try pretty hard sometimes. I do try. But it doesn’t always work out for me. It just doesn’t work for me. My mind just doesn’t work in that way for me. Ohhhhhh ……. I wish it didn’t. Lord Help Me. Oh I know the Lord would help me. I feel like I need to do. He knows what I need and I just can’t do it. And Lord you know I can only do so much and you know my feet and legs are just hurting so much. Help me please Lord, I can only do so much, ohhhhhhh. Help me Lord. Please help me.”

(I went downstairs to see if I could reassure her and if she needed something and she said “no, I’m fine” and then “thank you darling”.  I go back upstairs.)

“Lord Help Me please, I’m so limited in what I can do. I can only do so much and then….. , help me please. Lord help me please, cause I’m limited in what I can do. Ohhhh. My girls love me and I know they do but I can’t help it. I can’t help but cry. I can’t help it. I deserve to cry. “

(I went back downstairs and told her I loved her and covered her back up. She hollered “I love you” as I was leaving and I told her “I love you too.”)

She blew her nose

“I can’t believe it. I can’t help but cry. My ….. just hurts hurts hurts. And I can’t help it. Uhmmmm. My behind hurts too. My stomach hurts so bad. I don’t know why. But it hurts. I don’t know why. Uhmmmm. “

Long silence – She blew her nose.- Long silence.

“It hurts my behind so badly. Long silence. Oh it hurts so bad. Uhmmmm. I try to keep it from hurting but I can’t help it sometimes. Uhmmmm. But I try and it doesn’t always help. I wish somebody could help me to do that. It doesn’t help me though. No it doesn’t help a bit. Uhmmmm. Silence. (It’s 9:54 now.)

It didn’t help, not a bit. No matter how much you try to help it just doesn’t help. No matter how much you …. for it, it doesn’t help. It doesn’t help a bit. Silence. I d10805619_570046056465727_6872502226160874895_non’t think so. But it seems like it doesn’t matter, matter how much you try to help it but sometimes it doesn’t seem like it does. Sometimes…… and then it seems like it hurts more and more. And hurts and more and more and hurts. (She’s getting quieter now with more silence in between sentences.) I can’t help it, it seems like. Hurts more and more. It seems to be worse and worse. Sometimes they get worse and worse. I guess I can’t do anything about it. Uhmmmm. My knees get worse and worse too. And the dog gone feet they get worse and worse and worse. And my feet do to and I don’t know what to do. I can’t get them any better, I don’t know why they won’t get better. Feels like they get worse and worse, instead of better. Uhmmmm. They are getting worse NOW. I can’t get any better. They don’t get any better. I can’t get them any better. ………………

Somebody could come and help me. Somebody could come and help me a little bit and all that pretty chair all over there you could come and help me a little bit. (She starts getting louder.) Come and help a little bit it won’t kill you, it might make you feel better for helping somebody. Somebody it wouldn’t hurt you. I don’t think it would. I don’t think it would hurt you at all. It certainly wouldn’t……… Uhmmmm. I don’t think it would. Uhmmmm. A little bit of … wouldn’t hurt anybody. Uhmmmm. Uhmmmm. It never hurt, might not make you happy but it wouldn’t hurt you. It wouldn’t hurt at all. It wouldn’t hurt at all, it might not help you any but it wouldn’t hurt. They’re never busy, they’re just blabbing, blabbing, blabbing.

Oh, I lost a shoe (she doesn’t have any shoes on, just socks). Don’t know where my shoe is, well heck another shoe lost. Another shoe gone. Another shoe gone (she starts to cry). Oh where is my shoe. Somebody took my shoe or I lost it. I lost my shoe. Oh dog gone I lost another shoe. Uhmmmm. It hurts when I lose another shoe. Uhmmmm. I lost my other shoe. Oh what am I do, what am I do. Oh, I lost another shoe. Dog gone. Somebody come help me find it. I lost another shoe. Uhm, I can’t find it. I can’t find it. Somebody help me. Somebody come help me, please. I can’t find it. I can’t find my shoe. Ohhhh, they are hard to find. I can’t find it. Somebody can come and help me find them. Could somebody come help me find them. I might not, I’m gonna try. If somebody would I sure would appreciate it. Silence. I can’t find it no where. I can’t find it no where. Noooooowhere. My feet and toes hurt soooo baaaad. I can’t find it and can’t feel them anywhere.

Oh I wish I could. Is there anybody in the room? Rosie? I thought maybe there was one of the girls in the room. Rosie? Shoot I thought it was one of the girls. My …. was hurting so bad I thought it was one of you all. I needed to know who it was. And I couldn’t see and I didn’t know what to do. I didn’t know who it was and I just wanted to be sure. OHHHHH. I didn’t know who it was and I wanted to be sure.

(I go downstairs and peek in on her but she’s laying there smiling and quiet so I go back upstairs)

10897013_10152939097016740_8571813695345601818_nMy knees hurt so bad and I didn’t know who it was and I just wanted to be sure. I just wanted to be sure and my …… Somebody can help me if he can. Somebody will. Who is that touching on my feet (nobody). Is that somebody touching my feet? I hope it is somebody that is willing to help me for a few minutes. Why didn’t you answer me (sounds mad)? I don’t bite. Please somebody help me. Please somebody help me. Please somebody help me. I can’t get out of this rack. I can’t get out of this bed. Somebody please help me. Please. I can’t get out of this bed. I can’t get out of this bed. Somebody help me PLEASE. Don’t be so greedy. I’m not gonna hurt anybody.

I don’t hurt anybody and I don’t bite anybody and I’m not gonna hurt anybody but I would appreciate it if you would help me, just for a little few minutes.

(I went downstairs to see if there was really anything I could do and when I walked in and asked she said “no, I’m fine”. I said you were calling for help and she said “I was?” So I went back upstairs)

“I surely would appreciate it if somebody would help me. Rosalyn. Rosalyn. (She says calling me, loudly. I just went down there so I don’t go again.) Rosalyn. You don’t have but one mother in here calling for you. (Of course I go back down – her underpants and socks are off and she says she doesn’t know how that happened – I put new underpants and socks on her, tuck her in and tell her I’m going to go back upstairs and try to go back to sleep so maybe she’ll go to sleep.)

Never, never. ……. But it hurts and it hurts and it hurts. And you can’t do anything….. Uh hummmm. Nothing, 68191_540179176119082_3188283374700687354_nnothing, nothing. I tried so hard so many times. So many times. I’ve tried and tried so many times and it didn’t work. And I’ve tried and tried so many times and it didn’t work. It didn’t work, it didn’t work but I tried and tried and tried. But I really tried.”

Long Silence – sleep maybe?

“Who is it, who is it, who is it? Somebody say something. They’re taking the cover. We need it we need it cause it’s cold outside. We don’t need it, we need it rather because it’s getting colder outside, outside. Getting colder outside, outside all the time. It’s cold forever. …… somebody must have borrowed some of it. No somebody must have borrowed some of it. Somebody must have borrowed some of it cause some of it’s gone. Goodness sakes you never know, you never know.

Okay – enough typing – It’s 10:40 and she’s still talking so I’m going to bed and listen to her on the other monitor and pray she goes to sleep soon.

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The following is another brief ramble the next day.

Nap time on Monday – 1 p.m. Don’t turn it over like some people do. Please please please let people know you care about them. And when you can help somebody, they know it. And it means a lot to them. It hurts when you know. It burns some up when you don’t show that you care about them. It means a lot to them. You need to let them know…… I need to know. Somebody help me. Please somebody help me. I can’t get up.

fancydivider1

Please come back next time when I’ll share another aspect of Alzheimer’s to help you understand it better. 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,

psalm 34 18

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1.02.15 Some Things I Learned About Dementia – our relationship with music and how it can re-awaken our souls 1.02.15

January 2, 2015 – Happy News Years! I am hopeful that 2015 will be a great year for everyone! I appreciate each of you that have started reading my little Alzheimer’s blog.

????????????????????????Having shared with ya’ll previously about how Mama responded so positively to listening to Christian gospel music, I wanted to share two videos I found on blog.TheAlzheimersSite.com about how music reaches deep into the mind of an Alzheimer’s patient unlike most other interactions do. Seeing this happen is way better than me telling you it can happen so here it is!divider 6The uplifting new documentary “Alive Inside” has been described as “a joyous exploration into our relationship with music and how it can re-awaken our souls.” The film follows social worker Dan Cohen as he seeks to demonstrate music’s ability to combat memory loss and return a sense of self to those suffering from it. See heartwarming clips from the film in the trailer below! It will make you want to run out and do this now, it makes such a difference.

alive insidedivider 6The Alive Inside video above gave Dave the inspiration to do the same with his mother who’s living with Alzheimer’s.

Watch and compare the differences of Dave’s mother’s personality before and after she is given opportunity to listen to music. A folk choir director for years, music has been important to this mother and her family. This son’s inspiration to reach his mother’s soul will amaze you and give you hope that there still is a little bit of your loved one inside of them, despite their Alzheimer’s. In case you miss the quick blurb that shows on the screen briefly, Dave’s mom’s communication at this point was limited to just four words. Watch what listening to songs she knows does to her ability to speak.

mans mother with songdivider 6Right before I was ready to post this week’s blog I came across the following regarding music and Alzheimer’s patients and wanted to share it. Click on the title below to watch this wonderful video.

Meet A Choir of Alzheimer’s Patients Who Sing FROM MEMORY

divider 6Please come back next time when I’ll share some things from the Alzheimer’s patients viewpoint. If you want to get10473348_794838303907612_7424689563724033928_n 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,
isaiah 40 29

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