WhWhat it's like to live with someone with early s... - Page 7

september · ‎03-09-2010

@Noel7 I understand what jenniferjuniper was getting at. When you're dealing with someone who has dementia, you need to learn to ride with the tide at times, and not get distracted with harmless things.

If and when your family member starts doing things that are harmful to him/her, or to other people...that's when you need to step in and take action That's why a few of us have brought up the driving issue. My husband had to stop driving two years ago, so I've been through all of this.

Trinity11 · ‎11-16-2014

@september wrote:
@Noel7 I understand what jenniferjuniper was getting at. When you're dealing with someone who has dementia, you need to learn to ride with the tide at times, and not get distracted with harmless things.

If and when your family member starts doing things that are harmful to him/her, or to other people...that's when you need to step in and take action That's why a few of us have brought up the driving issue. My husband had to stop driving two years ago, so I've been through all of this.

I'm so sorry.... My mom had to stop driving because of a diagnosis of dementia. The physicians told us that even in early stages of dementia a person cannot drive. It truly is a difficult diagnosis for both the patient and their family.

My best to you, september.

september · ‎03-09-2010

You got it right, trinity. Once someone is diagnosed with any type of dementia, their driving privileges need to be closely monitored. For 1 year, my husband was allowed to drive locally and to not go on any highways.

this worked okay for a while but needed to be changed once his reaction times and judgment skills declined. Family members need to keep on top of this.

Financialgrl · ‎03-13-2010

Dad had dementia. He was tested and the diagnosis was that it was not ALzheimer's, just dementia but memory loss and doing odd things is evident in both. It's been about 5 years ago so maybe this sentence the doctor said is too simplistic but I was told - "all Alzheimers is dementia but not all dementia is ALzheimers". My BF is in assisted living and his Alzheimers progressed pretty fast. Just seemed like he was a little forgetful but by the time he was tested a few months later - the doctors said he has moderate Alzheimers.

He's being monitored by a geriatrician (one for the brain and another for internal medicine). All the drugs they give u to slow progression have not helped and they caused other issues so the docs have taken him off those (Aricept and something else). The hardest thing to do (since I've seen it with both dad and now BF) is watching someone slowly slip away. It's funny cuz BF lives about 3 hours away and I call him daily and visit often. Two of his children don't do either and they have already slipped from his memory. The doctor said that patients tend to hold on to "constants' in their life. Calling/visiting help a lot.

Poodlepet2 · ‎03-09-2010

Last year, I was critically ill and when I came out, I noticed my short term memory was impaired. Over the past three months it has not only gotten worse, but at times, I feel as if I don't fully understand what is being said. My gait is changing.....and my children are always saying thing like "you said that already." Or "you're repeating yourself.." I make lists of things to do....then misplace the list or forget to refer to it.....I can't seem to localize sound anymore. It has happened more than once that on one o my frequent trips to the BR, I actually feel asleep: thankfully, as my body was lunching forward, I woke up.

Yesterday, I had an MRI and brought the CD home for my DH to review-let's just say this is his area of expertise. I saw his face cloud up: lots of bright white spots are all over.....damaged axons....what are they? Old micro strokes? Demylenating disease? He's setting up an appointment for me to see a neurologist, but I just have cold, sick, sad feeling..... I know there is nothing anybody to say, but it's frightening to see these changes in yourself.....

Poodlepet2

Trinity11 · ‎11-16-2014

@Poodlepet2 wrote:
Last year, I was critically ill and when I came out, I noticed my short term memory was impaired. Over the past three months it has not only gotten worse, but at times, I feel as if I don't fully understand what is being said. My gait is changing.....and my children are always saying thing like "you said that already." Or "you're repeating yourself.." I make lists of things to do....then misplace the list or forget to refer to it.....I can't seem to localize sound anymore. It has happened more than once that on one o my frequent trips to the BR, I actually feel asleep: thankfully, as my body was lunching forward, I woke up.

Yesterday, I had an MRI and brought the CD home for my DH to review-let's just say this is his area of expertise. I saw his face cloud up: lots of bright white spots are all over.....damaged axons....what are they? Old micro strokes? Demylenating disease? He's setting up an appointment for me to see a neurologist, but I just have cold, sick, sad feeling..... I know there is nothing anybody to say, but it's frightening to see these changes in yourself.....
Poodlepet2

@Poodlepet2Please relax and don't try to interpret tests without some feedback from the neurologist. I received an x ray for my son years ago where it appeared he had lung cancer and it was pneumonia. I was so worried and even for myself I received devestating news about being in heart failure after my recent heart attack. If you look up things on the internet often times they are frightening. You have to realize that cognitive issues are very common after a major health event. Even myself I find I am not who I was before the heart attack. I really believe we just have to live life on a daily basis not projecting what might be tomorrow.

My heart goes out to you and I hope when you see the neurologist that he can allay your fears.

One other thing....you write very coherently and well. I think that speaks volumes. Please take care of yourself....

151949 · ‎03-09-2010

A friend who just had back surgery a few weeks ago called and we spoke about why she has to do PT - to strengthen her core so she can move easily and moving prevents scar tissue in post surgical backs. So after we hung up he said "i don't understand why she would have scar tissue in her back" and I said - because she had an operation on her back, scar tissue will form where they cut it open. He said well, I just can't understand where that would come from. So I took his hand where he has a scar from a dog bite when he was a child. I said just like your dog bite made a scar here when it healed her back will make a scar where the operation was. He said he just could not understand it, and went outside. Mostly it is just the little things like this - he'll be 100% fine all day then we'll have a conversation like this, which makes me wonder what is happening in his brain at that moment that causes this.

As for the driving - the neuro said when he is not able to continue to drive she would tell me so. He is still a very good driver.

151949 · ‎03-09-2010

@Poodlepet2 About 25 years ago I had chemo for renal carcinoma. The drug was experimental and was not approved as I was given it. My cancer has not come back though. During this time the side effects were brutal including seizures. My MRI looked just like you describe. The falling asleep while walking - sounds suspicious of a petit mal seizure. I am certainly not an expert in neuro diseases, this is just a recount of my experiences. It took about 2 years for my body to get back to normal after that chemo, and was another 2 years before they took me off the drugs.I still get spasms in my left hand which was a side effect of the original chemo drug.And my memory is no where near as good as it was before then, which made working difficult.However, I'm alive and alert enough to be irritated by the spasms so that is a good thing, and if this is what it cost me - so be it.

september · ‎03-09-2010

@Poodlepet2 wrote:
Last year, I was critically ill and when I came out, I noticed my short term memory was impaired. Over the past three months it has not only gotten worse, but at times, I feel as if I don't fully understand what is being said. My gait is changing.....and my children are always saying thing like "you said that already." Or "you're repeating yourself.." I make lists of things to do....then misplace the list or forget to refer to it.....I can't seem to localize sound anymore. It has happened more than once that on one o my frequent trips to the BR, I actually feel asleep: thankfully, as my body was lunching forward, I woke up.

Yesterday, I had an MRI and brought the CD home for my DH to review-let's just say this is his area of expertise. I saw his face cloud up: lots of bright white spots are all over.....damaged axons....what are they? Old micro strokes? Demylenating disease? He's setting up an appointment for me to see a neurologist, but I just have cold, sick, sad feeling..... I know there is nothing anybody to say, but it's frightening to see these changes in yourself.....
Poodlepet2

@Poodlepet2 Please try not to worry. You said you had a serious illness, and that can affect you in many different ways. I wish you the best and hope you get good news from the neurologist

september · ‎03-09-2010

@151949 wrote:
A friend who just had back surgery a few weeks ago called and we spoke about why she has to do PT - to strengthen her core so she can move easily and moving prevents scar tissue in post surgical backs. So after we hung up he said "i don't understand why she would have scar tissue in her back" and I said - because she had an operation on her back, scar tissue will form where they cut it open. He said well, I just can't understand where that would come from. So I took his hand where he has a scar from a dog bite when he was a child. I said just like your dog bite made a scar here when it healed her back will make a scar where the operation was. He said he just could not understand it, and went outside. Mostly it is just the little things like this - he'll be 100% fine all day then we'll have a conversation like this, which makes me wonder what is happening in his brain at that moment that causes this.
As for the driving - the neuro said when he is not able to continue to drive she would tell me so. He is still a very good driver.

I'm sorry, but there are going to be good days and bad days. On the good days, you think all is well. On the bad days...it's very frightening.

Have you looked into joining a support group in your area? This was so helpful to me.