We need to document the collateral damage caused by family caregivers who go unpaid and have to give up gainful employment elsewhere.

Financial stresses on the caregiver will undoubtedly effect the level of care and long term health of the caregiver.

Lisa, Does your mom have any access to an occasional home care worker. It sounds like you need a safety valve. My MIL had access to limited respite care for her husband to allow her to regain her strength and health.

Does your mom qualify for Medicaid? You might call around to home health care organizations and see if any of them have an idea of how you can get a respite.

Until then, we need to help you document your dual bad days so they can be reported in testimony to Congress or whatever agency has input.

Have you checked with local senior services to see if there is any respite care program available?

Try this link; http://www.louisianaanswers.com/

Try the links in the red column on the left.

Looks like they may have some resources for you to consider.

Hope these help.

Mark,
Thanks so much for all your hard work and input. Mom does NOT qualify for Medicaid but I have been forced to give up some of my caregiver duties to my 87 year old father and a sitter twice a week.
My doctors told me that part of my recent decline was due to stress. They told me to decrease my time and duties with Mom. I have done this but not without great regret. My Mom is/was a wonderful, loving, caring Mom. I feel guilty not being able to care for her like I want to.

I will document as you said perhaps if Someone in Power will listen!

Thanks.

Lisa,

Sounds like you need your doctor's orders in writing, maybe as a diagnosis. It can be kept in the file of issues for when there is finally a hearing about supporting caregivers. Medicare needs to step up and help those who choose to remain at home. As the discussion goes, Medicare is being penny wise and pound foolish.

Think of what your work load would be like if you had a home health worker come by every other day or so.

As we get more documentation of people in your situation, we can blast Congress from a number of sides. The AD Association should be able to help collect anecdotes of others in your situation.

Is your dad in good health considering his age?
My mom is 84 and still going strong. She was much worse while caring for my dad. In the two years since he passed, she has bounced back, except for falling and breaking her shoulder needing a shoulder replacement surgery.

Good news from my end.

I got my back pay check from SSDI on Friday. We did not know how we were going to pay bills next month. Now, we can take a deep breath and start moving forward. It only took 5 weeks and two days from my hearing to get the first check. It will be three years since I started the process on June 6, 2006. Now, I need to try to get the start date fixed. It appears they may short me three months of back pay.

Maybe SS can do some things right after all.

Anytime anybody needs some web research done, I am willing and able. I need something to keep my mind active. I know when to stop before I get exhausted so it is not a burden.

The internet is about the only place where I can do research at a pace that is acceptable to my mind. I cannot do library research because I easily overload trying to read pages.

I am good at text searching with Firefox browser.

Mark,
Congrats on receiving your check! That is good news.

I'm having a difficult day today so I'm not going to say much.

I'm very glad about your check and all.

Hi to All,

Today is my 55th Birthday. 55 and Alive! Wow, I guess that is an achievement. Or is it?

It's really strange, though. I thought @ 55 I'd be settled, happy, and fairly contented. NOT!!

This Alzheimer's demon really has me by the throat! I am fighting but I'm also getting tired.
Today is just another day and I just another year older! I'm tired. Maybe I'll nap??

Lisa, my birthdays - next one, 54, in about a month - tend to be times for harsh realities to beat me up, too. I think it's because birthdays and other anniversaries are times when we can't help reflecting on the year since the last one.

I'm trying to figure out this whole fighting back thing, too. I want somebody to write a book for me, "The Zen of Alzheimer's." Some way to accept what I can't fight, and still fight the rest. Something.

Oh, well - - Happy Birthday!

Alan,
I have been trying to get the motivation to write such a book but from a Christian perspective, based on my favorite verse (Psalms 46:10) and Phillipians 4:6,7... "Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made know to God. And the peace of God, which surpasses all comprehension, will guard your hearts and minds in Christ Jesus."

I have had enough of arguing with God. I never win the argument. For some time, I have learned to accept my condition. Yes, I have pity parties from time to time. But they pass.

Support group helps me see what others are going through that is much worse than me.

I watch "Life" about the cop who was set-up and wrongly convicted of murder and developed a zen like acceptance of his incarceration.

A problem I have is differentiating between acceptance, apathy, and dementia induced confusion.

This morning was one of those confusion mornings.

BTW,

I had the 54 yo birthday in January. They are survivable.

I forgot to mention.

Happy Birthday Lisa.

It is tough when you start to do something but forget by the time you get it started. My earlier comment was started so I could say Happy Birthday. By the time the reply window was open (maybe a second) I had forgot my intention.

Yes, this conditions is challenging.

My current struggle is trying to figure out which Medicare Advantage program I should enroll in. Too many variables. I am leaning toward a Secure Horizons plan.
They appear to cover meds well. Can't find any of the doctors I like on their list though.

Alan and Mark et al,
Thanks so much for the birthday greetings. It was an ok day. I've been tired today.

Yes, birthdays are times for reflecting but reflecting what? I can't seem to figure that out. I barely remember my last birthday. I don't remember what I did, what gifts I received or anything?!

What will I remember next year? If anything? Is this what the future holds?

Sometimes I can't remember whether I ate or took my meds?! This sure is a crazy life!

Alan, my library doesn't have and can't find the book ( actually not the book but the cd's) of " "Alzheimer's from the inside out." Any ideas as to how I might find it??

I miss my daughter and my sister!

Lisa, you might ask your nearest Alzheimer's Association office if they have that book in CD for lending out. Otherwise, beats me.

Trouble remembering meds? Oh, yes. It's like I'll think of it once, and if I don't take my meds then, I discover them much later. Many have been the times I've looked at my pill holder, and note with equal surprise if I have or haven't taken my pills.

My last birthday, 11 or so months ago? I'll have to get back to you, can't remember a thing. I remember fragments of Christmas, though.

Mark, there are plenty of Christians with AD, and/or close to someone with AD, that any well-written book should do well. Get an agent, and go for it! In your book, you can meditate on acceptance, apathy, and dementia induced confusion. I think I have all three any given day, and I'm alright with that. I can't do any more about dementia induced confusion, I'm on medicine, I know to rest between things, but it still bites me frequently. Acceptance sure, to an extent. But I'm quite fond of well-cultivated apathy, when it comes to things I can't do anything about.

I've thought of a book too, but my perspective would be different. I don't endorse any supernatural belief system. Maybe Jon Stewart would have me on the Daily Show!

But I digress. What I meant a while ago was to ask, please tell me how you differentiate among acceptance, apathy, and dementia induced confusion?

This isn't a book....but I have always liked this quote and it has helped me deal with my sister's EOAD and my mother's AD.

"Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment. "

Buddha

On forgetting to take your medications, I found this reminder that may help some of you remember.


http://www.amazon.com/Medcenter-Talking-Alarm-Medication-Reminder/dp/B000VUM79G/ref=sr_1_1?ie=UTF8&s=hpc&qid=1239571199&sr=1-1

Ok,

What do WE do now???

Acceptance is just that. You have acknowledged your condition, accepted that it is beyond your control, and made a choice to not argue with yourself, God, your disease, and any other entity, real or imagined. This choice usually starts as a logical or academic choice. It can eventually become a belief and have an emotional basis. Sometimes, it includes a perspective of "how can I use my condition to improve life around me, etc?"

For me, I have learned to slow down and enjoy simple pleasures, I am better at picking my battles. I have more compassion for others who are struggling with life. and so on.

Apathy is the often unhealthy attitude of "I don't care." When I find my saying those words, I know I have to stop and refocus my perspective. Apathy can manifest by dumping on others or failing to complete responsibilities.

Dementia induced confusion is how I describe the bad days. I can't get my brain to grasp what is happening. It is like I am in a cloud. I am not apathetic, accepting, wallowing in self pity or any such characteristic. I am just too mentally exhausted or confused to put a rational though together. My wife can tell these times. She might suggest I take a nap. She knows I am not up for company or other activities that need me to pay attention.

Sometimes, these times are combined with a head ache. I call them mud head aches. My head hurts and feels like it is stuck in the mud. Lethargic and sore.

Is this making sense to any of you?

Hey Everybody

WE MUST NOT QUIT TALKING, YELLING AND SCREAMING to our state senators and constituents!

WE MUST email these PEOPLE DAILY. They must have this disease in their face as we have it in our bodies. Maybe then, they will listen.

If we can get 1 PERSON AT THE STATE/SENATE level to agree and educate the others on his/her level, only then will we be able to head toward DC to push bills. Bills for insurance coverage, caretaker insurance, consistent informantion to the national public on a ddb (daily damn basis)! Then and only then, will we see and receive action!

Email all friends, families, etc., to become an advocate have these folks write/email their congress regarding the need for education regarding this disease.

Our governments first, on a state/county level must be educated first, then and only then can we pursue the government on a national basis.

Like I've said in the past, I can't do this by myself. We need to get off our butts and type, type, type to all of our local governments. We MUST GET ONE PERSON TO LISTEN TO OUR CAUSE, get our foot in the door, so to speak! EDUCATE, EDUCATE, EDUCATE!

We must continue to support each other on these threads. Yes we will disagree from time to time, but, we must all try to remember (ha ha), we're all in the "same boat" and this unity can only make us stronger! When one of us hurts, I truly believe we all feel that hurt. When one of us notices more diminishment we all feel it! WE ALL WALK THE SAME PATH WHEN IT COMES TO THIS DISEASE, THIS MONSTER CALLED ALZHEIMER'S!

I have been under quite a bit of stress lately and I know this gives the monster a head up on me. In knowing this I must learn to relax and deal with the anxiety. One thing I have learned and I pass this on. Each one of us are on quite a bit of meds. Our bodies are what? 90% water. Drink water with lemon every day. The water will replenish our natural fluids, flush our system of toxins and protect our liver from these drugs.

If anybody can come up with something else, please, by all means let's talk. We're all in the same boat!

Those of you who have this monster and in addition, are caregivers to a loved one. I personally commend you. I worry about my own self. You, you have to worry about both of you!

Some of us have ill spouses or have recently lost a spouse and are alone. No, you are not! We're all family here. I only wish we could all meet once a month (free of charge of course) and bond with each other. Strength comes in numbers!

M

Dear Lisa,
Belatedly, I wish you a HAPPY BIRTHDAY! 55 is great! There are a lot of senior discounts that begin at 55. You still have 5 years left of the nifty decade.

Thank you for being a welcoming and encouraging presence on these message boards.

Iris L.

Mark, you make sense all too well. Heck, I wish I didn't understand how you feel!!

So much of dementia is luck of the draw. The disease eats one way, we can't do math anymore. It goes another way, we get furious at the drop of a hat. Yet a different direction, we die in just a few years, but another way gives us many times that. I think the part that processes religious faith is in the temporal lobe, probably some others pitch in.

To sharpen a fine point, I think that sometimes, apathy is the best among bad choices. The truth can be overwhelming, and I don't begrudge many of the short-term solutions that get us through the night. Just sometimes. Special occasions.

Bad days? If I'm lucky, I can hunker down at home all those days. If not, allowances must often be made.

Headaches? Started about same time my dementia started to show. Your description is as good as any.

I got a copy of the radiologist's report from a FD-PET done in 2002. It shows decreased signal in the mesial (or medial) temporal lobe bilaterally. Makes sense. That is the area that handles visual imaging and processing. I used to have a photographic memory with visualization skills of the highest order. Now, I cannot visualize the wall behind me. I know it is there and what is on it, but I cannot picture it.

As for religious faith, maybe it is an over learned faith. Since it predates any dementia by decades, maybe the memories are unaffected. Although, my faith is stronger in the last five or six years, since I stopped arguing with God.

I know others whose faith is how they make it through the day. I met with a Secure Horizons rep today. He is only 33 and been battling MS for ten years. His faith is a big part of his ability to cope.

As of Friday, I will have Secure Horizons health care and will no longer need to travel to California for routine health care. My meds will be cheaper too. $96.40 per month sure beats the $432 per month I paid out for last month.

Isn't Social Security wonderful. If they had approved me when I first applied, I would have saved $340 per month in health care premiums over the past year.

At least now I can start trying to plan for a future.

I decided to post to this thread because "detached" describes how I feel. I learned this weekend that the daughter of a cousin of mine is in the Los Angeles area working at a popular, socially active women's magazine. For a moment I felt envious, because she's probably enjoying the high life, meeting celebrities and creative people, going to fancy restaurants and nightclubs, wearing fashion, driving a brand new car, and living in a beautiful condo. I imagine her living the life I used to live about 30 years ago when I first came to LA.

Why don't I still have that life? Then I think, I couldn't keep up with those people, so why even think about it?

Is it okay to pine for one's old life or should we just forget it since it's gone?

Iris L.

Iris, I can only quote from Dylan Thomas:

Do not go gentle into that good night.
Rage, rage against the dying of the light!

I thought I'd copy & paste the whole thing, for those who don't know the poem:

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

You're still a great therapist, Alan. You captured just the right words I need to get me to ponder the shrinking of my life. I'm not the only one who has these thoughts. No, I won't go gentle into that good night! Thanks so much for re-introducing me to Dylan and giving me a boost.

Iris L.

Iris,
You said an interesting thing, is it ok to pine for our old life. I know I do. I miss all the things I could do if I wanted to. I miss working, driving a car and being able to get around without this stupid old cain. No you are not alone. I think we here feel the way you do. Thats why I'm getting help. I have my second visit tomorrow. I started on Anoxa today, made me sick this morning and my stomach hurt so bad and I started sweating so bad and my face turned white. It's ok now, what a way to start the day. Maybe it's me getting used to the new med's.

Sharon

Hi to All,
I think I have to talk some more about detaching.
I think I am detaching from my Mom. I'm not sure why exactly but I have some ideas.

She is no longer the Mom I once knew and loved.
She is much more difficult to be with. (Or is it me?)
She just sits in the recliner and does nothing to get better.
Am I afraid I'm looking at my future self?
Am I afraid she's going to die?

Mother's Day is Sunday. I bought my Mom a small rose bush for inside. I hugged and kissed her but it doesn't FEEL the same.
I am grateful that I have a wonderful Mother and Father.

I don't know, I just can't get my brain around this?! Or is it my arms??

Lisa, to borrow from another great song, this one by Lennon/McCartney:

And when the night is cloudy, there is still a light, that shines on me -
Shine until tomorrow! Let it be.
For though we may be parted, there is still a chance that they will see -
There will be an answer! Let it be.

Dearest Alan,

Yes, it was/is a great song. I'm not sure I understand it's use in this matter??

Do I let my feelings be? Let me be? Let Mom be?

I'm confused.

Lisa,

You say your mom just sits in the chair and does nothing to get better. That is her right but also, what evidence is there that she can get better? There comes a stage in this disease where the emotional energy to try is just gone.

Feel relieved that you still have that energy. Start saying your good bye's to your mom. As you said, she has changed and is not the same mom anymore.

Whether AD plays a part or not, the cycle of life often ends with those older loved ones losing a grip on who they were.

Go ahead and start detaching. This disease warrants detaching and then just remembering how the LO used to be.

She is starting down a path that is not one we can follow her on. Maybe later we will take the same path, but not now.

Focus on who she has been for all of your life, not who she is becoming. It is like when a friend moves away. You may lose touch, but it does not change who they are and the relationship you had with them. Regardless of what they are like after moving away, the history you have together is still true.

Cherish those memories. They are still valuable.

Lisa, some people would have read the verses, been confused, and just dropped it. No, not you . . . now I have to remember what I was thinking . . . oops, can't do that . . . ok, let's see if I can figure this out.

I think I was on a spiritual point. That now, your mom is in darkness, with you her light. The disease has parted the two of you from your old relationship, but there's still hope of good times before it's over.

Or . . . did you ever post, then in looking back, it looks like it could never have made any sense?

Lisa, you may find this interesting. I am currently reading the book "the Tibetan book of Living and Dying" and just came across this section. On page 228 it states,

Letting Go Of Attachment

The ideal way for a person to die is having given away everything, internally and externally, so that there is as little as possible yearning, grasping and attachment for the mind at that essential moment to latch onto. So before we die we should try to free ourselves of attachment to all our possessions, friends and loved ones.

end quote.

As I read this it made perfect sense to me, spiritually. In order to ascend to the next level, if you will, we truly need to let go of our attachment to things and people but not remove our love. Attachment and Love are two different things.

So, responding to your original post, Lisa, yes I think this is a natural part of the process. Sure there may be a brain component to it, neurochemical reason for detachment, but it is also a normal and much required spiritual component in dying a peaceful and good death.

Dear Mark, Alan and Summerskies,

Thank you so much for sharing your insights. I do feel a little better about what is going on with me and my Mom. I do Love her. I guess I just miss the Mom that raised me. But, she's still there in some form. I guess I just have to accept it. As my sister says, "It is what it is."

Alan,
I do sometimes post things that later I either don't understand or don't remember posting. Kinda scary, huh?!

Interesting discussions. I like the term "detaching" - its better than apathy. I have been experiencing this more or less lately as well, with friends, family members, and even with things I used to value or be important to me, hobbies, pastimes, etc.
Maybe its a type of protective response to the condition; to keep us more level emotionally as we drift deeper into it. I have heard other references from various sources that seem to support the discussions and feedback about this phenomena.

Lisa, I was listening to Maria Shriva on Good Morning America this morning talking about how her children had helped her learn how to adjust to dealing with her father's new condition. She said the children interact with Grandpa as he is now, whereas she tried to interact with him as he used to be. She had to learn to adjust to him as he is now. Her words: "Stop trying to make them who they were. Let it go."

I think for myself, I have a hard time giving up the old life because I have nothing better to replace it with.

Iris L.

Lisa, it's typical that I'll be reading posts, and thinking about a response I'd like to make. Then, there it is, a response I've already made.

Or, this morning, getting an email from a buddy. He was bragging about taking a dip in the Gulf, near St. Petersburg. I saw him last week, and I'm sure he would have mentioned going to Florida a week, but I can't remember it. Stuff like that, forgetting things, yeah, it happens a lot.

Scary? You bet. Feels like another piece of my brain has died.

Noel, Alan, Iris et al,
Thanks for sharing your insights and feelings. This sure is an interesting yet frightening disease .
The roller coaster never seems to stop. Up and down and all the curves, it's hard staying on sometimes!?
Detachment, apathy, sadness, depression, anger, frustration and then sometimes Happiness!

Wow, what a Wild Ride!

Hi to All,
Well, It's Mother's Day. I have to say I'm feeling rather blue today. My daughter is away so that makes Mother's Day Not quite so special.
Today is probably the last Mother's Day I will spend with my Mom. She has declined dramatically. She told me early this week that she'd had enough and she wished she'd just die! She said she wouldn't kill herself but that she just wished it was all over.
I told her I was sorry she felt that way and was there anything I could do to make her life better? She said, "NO." She closed her eyes again and drifted back to sleep. She is sleeping more these days and keeping her eyes closed more and more even if she's awake.

Today, I've tried so hard to be with her and make her day better. Sometimes, it seems like no matter what I do it's wrong and no matter how I talk to her is wrong.
I really wanted today to be special but I guess "It is what it is."

I hope your Mother's Day is better than mine!

I guess I'm already missing my Mom!

Lisa, I don't usually post but I noticed nobody answered yours yesterday and I wanted you to know you were in my heart, thoughts and prayers. God bless you for all you do for your mom....I so worry about my daughter having to take care of me. She says she will not put me in a home...and I tell her she will someday probably have to, but if she does for me what all you have done for your mom I will be so very blessed. Kudos to you Lisa....God (or whoever you believe in) must be smiling at you and very happy with you. If i were closer I'd offer to come help. Thank God she has you, what a blessing you have got to be to her.

Hope you have a better day today!!!!!

Hi Everybody

I've been reading over the past posts on this thread. Everybody is complaining about our state/nations' systems, but, I'm not hearing anything positive action wise.

pick up your phone book, get the address for your congress men/women and WRITE THEM/EMAIL THEM!!!!!

That's as positive as you can get. If your name is in their face weekly/daily, then, you know you've done your damndest (is this a word?)! It's better than sitting around on our butts complaining---time to take a negative and make it positive. Next time you go to your doctor's visit, ask them to write to your local congress person for ACTION NOW! EDUCATE,EDUCATE,EDUCATE!

This is the only action we can take with little effort typing on our laptops!

Keep Screaming
M

Dear LB1981,
Thank you so much for your kind words. Thanks for thinking of me. We all have a difficult road to hoe!

Dear Mary,
I keep kicking and screaming but still not getting much attention. I haven't given up!!

Hi to All,
It's been a while since I posted so I thought I'd say hello. Hello.
Yes, I am detaching from my Mom but I realize that's ok. She's still my Mom and I love her but our relationship is different. Very Different.
I still find myself carrying this demon inside. The seroquel helps some but it's still there brewing. I find when I increase the seroquel I get sleepy and gorked! I hate that feeling. That drugged feeling! Ahhhhh!
I find writing on my new blog helps some too. Feelings, thoughts and plain stupidity!

I am, also, detaching from others but I think that's ok too. Sometimes, I feel better when I talk with y'all.

"Gorked"?

Hey Alan,

Do you like my word "gorked?" It's like being spaced out, loaded um kind of drugged.

Make any sense?

Makes sense to me. But in my condition, who am I to judge what makes sense?

Ah yes, it has that long word, for when things sound like what they are. Uh, something like onomatopoeia. (Thanks, spellcheck!)

Dearest Lisa

Please take care of yourself. I know you must care for your mother, but, you must take care of you first, otherwise, you'll be useless!

In my opinion, I think you're "detaching" from your mom because now it's a person who is locked in a shell/body. I'm sorry to hear she's getting worse. When I met your daughter she appears to be very mature and helpful. I know you don't want to put your mom off on her, but, she is younger, stronger and I'm sure, very understanding. Probably a little afraid!

Get her to help you. You have a lot on your plate and it's affecting your health, I absolutely can not tolerate the thought of you diminishing too soon. I need your up beat, happy, positive self to keep me plugging along with the cause and just in general.

Take care of you
M

Dear Mary, Mark, Alan et al,

Thank you for your humor and your kindnesses. Sometimes, I just don't know what I'd do without y'all.

Mary,
Yes, my daughter is very capable but she lives in Atlanta not here. She helps when she can. My sister just came in for 3 weeks. It was great except we BOTH got sick (bronchitis). My sister and her hubby are planning to move back to help me just as soon as they can sell their house in NJ. Everyone, please start praying for that sale!
I am trying to take care of myself because I don't want to become a burden to ANYONE!! But, my Dad still works and I have a sitter for 2 days a week so I can get out. Unfortunately, she's declining, very weak, unable to walk without assistance (sometimes wheelchair), is incontinent, loosing weight and is generally confused and unhappy. Sometimes, my heart breaks when I look at her.

Thanks to ALL of YOU!

Hi to All,

I am trying something new today. I will attempt to post my blog to see if anyone can click on it and go directly there. Here goes.
http://lcc-thoughtsfromtherollercoaster.blogspot.com/

It's supposed to be all on one line.

I'm just a flop. My sister started the blog for me. I don't know how to do any of this! Ahhhhh!

Perhaps you can cut and paste? I don't know how to do that either!

help!
Oooops, did it work?

It works! It opened in a new window. I'll try to read some later, looks interesting.

Alan,

Thanks for checking. Apparently, I have to type it in that way (even though it doesn't look right when I first type it). When I hit enter, it looked like a blog site.

Thanks again.