For Valerie - Our Journey With Early Onset Alzheimer's Disease
Saturday, June 17, 2017
Takes My Breath Away
I've written about this before....
Tomorrow is Valerie's Birthday.
it has now been over 8 years since her diagnosis of Early Onset Alzheimer's Disease. She has been bed bound since June of 2011. She no longer speaks, except for a word or maybe two...
There are times when Valerie hasn't seen me for a while.... maybe a few hours... and when I walk over to her chair, there are times when there is an intense look of recognition. If she could, she would leap up and give me a big hug. It's her birthday tomorrow, but I feel like I got a gift! This happened today!!!
the expression on her face, her eyes so big and shinning, her smiling face, her whole body comes alive... Val used to say that sometimes God makes miracles we can't see... I can see this one and am very thankful beyond measure...
Sunday, May 14, 2017
new old posts
I've been posting things I written several years ago so I have a record. just didn't have time to put things up here before....
Got A Job Interview Tuesday - Need Help
Got A Job Interview Tuesday - Need Help
(written july 5, 2013)
Not sure if I should take the job, even if I am lucky enough to be offered this position.
Yeah money is so tight it's starting to choke me, us. I don't know if I can/should take a job even though we need the money, Val's quality of life is the issue. Yes, we have 27/7 care now, and all the Aids love Valerie. But I'm her husband. I don't think I can or even should let go. I don't want to let go even if I have to. I know that someday I will. Maybe.
It's just I don't think taking a job is more important that my being with Valerie all the time.
Yes I do take breaks. I play music with my friends. I have even seen 3 movies in the past year.
But I don't know. I HATE that I even have to make this choice. Sophie's Choice??
I've been caring for Valerie now for over 5 years. I know one day, things will change and I will be really alone. Unless I go first of course. (Sometimes I wish I would.)
I know years ago, if I put this question to Val, she would tell me to take the friggin' job. I know also that now, if Val could tell me, she wouldn't be sure at least. I fear she would feel scared and abandoned and start to cry. I would too.
I don't know that I can focus enough to even hold down this job if I get it. I have enough stress in my life, do I need more by taking a job? Yes I need the money, but Val is more important than anything.
Yes it's close by, a 20 minute drive. Yes its a job with computers. I know that most people, even you guys here will tell me to take the job and somehow, it will work out. Really? I have no confidence that it will. It may make things worse for both of us. I mean, we're not going to starve, but I have no comprehensive Health Insurance. If I don't have a job when Valerie passes, I won't have a dime to pay the mortgage, or anything else. I know that's a big concern for most people. I just don't care. I want to be with Val every second of every day, near her when she cries, sneezes or says a few words I can understand. If I get a job, I won't be there for those things. I don't care about anything but being there for Valerie. I've always said, I will worry about tomorrow when it comes, and not one second before.
So what's the BEST reason I should or should not take this job?
Of course I may not even get the job so this would be moot for now. But how could one go on with life, when the person you love, even more than yourself is on a slow ride to heaven. Part of our wedding vows was this:
"Wherever you go I'll go, and whatever you'll face I'll face too."
I just can't figure life out sometimes, maybe some of you can. Let me know.
thanks
guy
(written july 5, 2013)
Not sure if I should take the job, even if I am lucky enough to be offered this position.
Yeah money is so tight it's starting to choke me, us. I don't know if I can/should take a job even though we need the money, Val's quality of life is the issue. Yes, we have 27/7 care now, and all the Aids love Valerie. But I'm her husband. I don't think I can or even should let go. I don't want to let go even if I have to. I know that someday I will. Maybe.
It's just I don't think taking a job is more important that my being with Valerie all the time.
Yes I do take breaks. I play music with my friends. I have even seen 3 movies in the past year.
But I don't know. I HATE that I even have to make this choice. Sophie's Choice??
I've been caring for Valerie now for over 5 years. I know one day, things will change and I will be really alone. Unless I go first of course. (Sometimes I wish I would.)
I know years ago, if I put this question to Val, she would tell me to take the friggin' job. I know also that now, if Val could tell me, she wouldn't be sure at least. I fear she would feel scared and abandoned and start to cry. I would too.
I don't know that I can focus enough to even hold down this job if I get it. I have enough stress in my life, do I need more by taking a job? Yes I need the money, but Val is more important than anything.
Yes it's close by, a 20 minute drive. Yes its a job with computers. I know that most people, even you guys here will tell me to take the job and somehow, it will work out. Really? I have no confidence that it will. It may make things worse for both of us. I mean, we're not going to starve, but I have no comprehensive Health Insurance. If I don't have a job when Valerie passes, I won't have a dime to pay the mortgage, or anything else. I know that's a big concern for most people. I just don't care. I want to be with Val every second of every day, near her when she cries, sneezes or says a few words I can understand. If I get a job, I won't be there for those things. I don't care about anything but being there for Valerie. I've always said, I will worry about tomorrow when it comes, and not one second before.
So what's the BEST reason I should or should not take this job?
Of course I may not even get the job so this would be moot for now. But how could one go on with life, when the person you love, even more than yourself is on a slow ride to heaven. Part of our wedding vows was this:
"Wherever you go I'll go, and whatever you'll face I'll face too."
I just can't figure life out sometimes, maybe some of you can. Let me know.
thanks
guy
Vomiting.
Vomiting.
(written dec. 10 2012)
Val vomited about 30 minutes ago, I had just come from the bathroom. Really scary, mot sure why she thew up. She never vomits. I'm going to call the doc I the morning, but I don't think I'm going to sleep tonight. I helped her get it all out, but I was really scared. I washed her up and sitting here thinking what if I had been in the bathroom for another minute. God I had this dam disease.
(written dec. 10 2012)
Val vomited about 30 minutes ago, I had just come from the bathroom. Really scary, mot sure why she thew up. She never vomits. I'm going to call the doc I the morning, but I don't think I'm going to sleep tonight. I helped her get it all out, but I was really scared. I washed her up and sitting here thinking what if I had been in the bathroom for another minute. God I had this dam disease.
Oh The Things They Will Forget!!
Oh The Things They Will Forget!!
(written aug. 21 ,2012)
AD patients forget. They are characterized as older, feeble, forgetful certainly, but oh they things they will forget.
The brain controls everything, so they are not just forgetting memories, they forget how to do things.
The motor functions, the automatic things we all take for granted.
And to really understand what is going on, it isn't that they simply forget to walk, talk and move, the brain simply stops working properly as more and more neurons die.
What the general public does not understand is that this is a physical disease of the brain.
Not a mental illness!!!!
But we keep using the phrase, they are forgetful.
So, yes, they forget to say, uh... push. Yes, they forget to push when they need to have a bowel movement.
All of the above is to ask if anyone here has ever administered an enema. Although we have been regular, I fear the time may come, sooner than later, where this will need to be done since Val is now bedridden.
We're always watching her diet, and adjusting. Also we used stool softener, and laxitives as needed. But again, the time will come. I have the enemas ready to go. Have any of you had to do this?
I know I can call the doctor and have them send a nurse to do this, and yes, they will probably show me, but if any of you have had to do this, let me know. I could use the advice.
Again, like a boy scout, I'm trying to be prepared. I dread the thought of having to look this up on youtube, so if you can share your experience, I'd appreciate it as I'm sure others would too. I'm sure I can look this up, but getting practical experience for people who have done this themselves is much more helpful in my opinion.
I know this is not a subject we really want to talk about, but you have to, if you are caring for someone at home.
Ya gotta pop the poop group. sorry ;>)
(written aug. 21 ,2012)
AD patients forget. They are characterized as older, feeble, forgetful certainly, but oh they things they will forget.
The brain controls everything, so they are not just forgetting memories, they forget how to do things.
The motor functions, the automatic things we all take for granted.
And to really understand what is going on, it isn't that they simply forget to walk, talk and move, the brain simply stops working properly as more and more neurons die.
What the general public does not understand is that this is a physical disease of the brain.
Not a mental illness!!!!
But we keep using the phrase, they are forgetful.
So, yes, they forget to say, uh... push. Yes, they forget to push when they need to have a bowel movement.
All of the above is to ask if anyone here has ever administered an enema. Although we have been regular, I fear the time may come, sooner than later, where this will need to be done since Val is now bedridden.
We're always watching her diet, and adjusting. Also we used stool softener, and laxitives as needed. But again, the time will come. I have the enemas ready to go. Have any of you had to do this?
I know I can call the doctor and have them send a nurse to do this, and yes, they will probably show me, but if any of you have had to do this, let me know. I could use the advice.
Again, like a boy scout, I'm trying to be prepared. I dread the thought of having to look this up on youtube, so if you can share your experience, I'd appreciate it as I'm sure others would too. I'm sure I can look this up, but getting practical experience for people who have done this themselves is much more helpful in my opinion.
I know this is not a subject we really want to talk about, but you have to, if you are caring for someone at home.
Ya gotta pop the poop group. sorry ;>)
There is only One ??
(written aug. 9 2012)
I called the Alzheimer's Association hotline to find a dentist who cares for patients who are home bound bedridden. Valerie needs to have her teeth checked. She has upper dentures.
Since we live in New York city, I didn't think there would be a problem. Well, guess what, I was wrong. Again.
There's only one, the women at the AD hotline said. How can there be only one in all of the New York City area?
And to make things even better, they do not accept medicaid. Wow, this is just unbelievable. Such a simple thing like getting a dentist's care becomes such a problem.
Maybe some of you know better than me. Let me know. I'm about to bust a vein!!!
Plans?
There is a National Plan To Cure Alzheimer's Disease
Ok great. Where' the National Plan to CARE for the Alzheimer's Patient??
Ok great. Where' the National Plan to CARE for the Alzheimer's Patient??
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