Just wanted to drop a quick note in to say hello.

Just joined this site. I am a caregiver to my Mom with EOAD. Looking forward to getting to know you!

Good morning Janie!

So nice to hear from you today! Yes...the voice is back...and YES!!! I am aggravating the co-workers once again! (wouldn't have it any other way)

It's been a really tough week at work, and had one of my breakdowns yesterday...sat bawling at my desk because I had made a little mistake on a project I was working on. My cube partner (affectionately referred to as my 'cell mate') encouraged me to not get so upset...when I tried to laugh at her...in the midst of the tears flowing, a, um, how should I refer to it...a nasal extraction, bubbled out. I was a mess, but we both started cracking up. In the midst of despair, just letting a boogie bubble brought laughter that went on for a good 10 minutes.

Yes TGIF!!! Hopefully you have great plans for a wonderful weekend! I will be working tomorrow, and caring for my dear mom. Working on Cat's Corner has really made me just want to be closer to her. Plus I have to see if I can find some pictures of her as a child for that part of the website.

Anyway...thank you for starting my day off with a smile (as you always do). I'm sending a huge (((((HUG))))) your way!

Good morning, Cat ..... hopefully your laryngitis is gone and you are BACK to aggravating your co-workers!!

It's Friday already. Sometimes I just don't know where the time goes. I used to celebrate "TGIF" back in the "good ole' days". But, now that I work at home, it's just another day. Oh WELL!!!! Better than the alternative!!

Thanks Janie...

I have been having a wonderfully emotional time developing it. It brings to the surface a lot of emotions that I haven't thought about for sometime...but just reinstates my determination to get the information out there.

I appreciate you taking the time to visit. It means a lot to me.

I'm on the final stretch of this cold....still have laryngitis (which I am sure my co-workers are THRILLED about) but am breathing a bit better, and coughing a bit less.

Thanks for dropping a line this morning....you always put a smile on my face!

Hey Cat,

Hope you're feeling better today! Your site is great! And, I applaud you for your efforts!!!!

Your Mother raised a very good daughter.

Hi everyone!

Just wanted to check in with everyone to see how you were all doing.

I've been sick all week long, so I have quarantined myself to my room and my computer until I feel better.

Just missed my new friends here, so I thought I would stop by and say hello!

Snowlynne, so wonderful you and Larry talk alot.I know this means so much to you both.The one thing we have to understand it that a [person may have a illness, physical or mental , are able to communicate until it is viewed other wise.
The one thing that was so sad was to see my mother change to a less smiling person because she had all these demons that caused her to view things in a fearful way.So tormented.My husband is unable to converse in the now , only the worries that consumed him when he had a business.He smiles for the daily aide , the males from the VA, never for me.He sees me as the one who is responsible for where he is now.Cannot relate his illness was caused by things beyond my control.He has said 2 times he is bedridden because I threw him across the room.The only fall he had was the result of his Parkinsons and the misuse of the walker.But I do not press the issue as what he says is his truth .Who can fight that.My mother loved people and could conversate about so many things, especially politics.The something took over her mind and she lost all the great abilities she once had.I would give all I have to have that mother with me.

Larry & I talk alot.

Hi Janie!

Thanks for asking. It's been a loooooong day, but I did get a smile when I saw a post from you.

Been having a lot of sad feelings about Mom today. Just heavy on my heart.

Thanks for checking in!

Just wonderin' .......

How's doing today??

WHEW!! I've been fighting my way through the cyberworld to get back here!

Cat, I found your site! BEAUTIFUL home page!! Did you take that picture? I found another site, too, but it's private so I don't know the ages of the members:

http://health.groups.yahoo.com/group/mymotherhasalzheimers/

Hon, I think Moms_Buddy has given you some really good advice - especially with reference to talking with your husband. I don't like to see you getting yourself so isolated!!

And, oh lordie, it's so true; we think WE are the only ones who can "do the job!" What a burden we put on ourselves. We don't mean to; we just want to make sure our loved ones get the very BEST of care (ours.)

But, that is soooo self-defeating in so many ways. What a juggling act you must be doing. Trying to keep ALL those balls in the air at the same time, and NOT asking for help?? YIKES!!

The best thing, especially now that you are so stressed, that you can do for your mom is to take care of YOURSELF!!

And, if that means you have to have someone else do that laundry or shop for those groceries ... or take the kids to ball practice, or "sit" Mom for awhile, then DO it!! They may not fold those towels just like you would, and they might buy the wrong brand of soup, but ... hey, next week this time, what will it matter?

You need to take care of Cat!!! Your mom has raised you soooo well, to take on such awesome responsibility. But, did she remember to remind you to stop and smell the roses every now and again?

Come on now, darlin' ..... Please be good to yourself. I don't want you to crash and burn!

quote:

I don't talk to my husband about it. I don't know how he would react, or if he would even understand my thoughts and feelings about it. I do feel very alone most of the time, and that, in turn, makes me feel like I am in charge of doing everything, and I feel like I can't count on anyone to do anything. It's a terrible feeling. Ahh...spewing at the fingers again. Sorry.

Mornin', Cat!! One of the biggest mistakes we make as caregivers is underestimating the power of understanding from our partners. We don't share with them cause we don't want to bother and worry them; we don't want them to MISunderstand our need to talk.

My husband is not a "talking" man. Getting him to discuss his own feelings requires the use of a power winch and a come along. When I vent to him about ANY problem I am having, his first reaction is to "kill" whatever is upsetting his wife. Despite the challenges of talking out my feelings to him, I decided that I NEED to be able to do so. There have been times when I literally have told him to sit DOWN, and keep his lips buttoned and just LISTEN. If I need help with a decision, I will ASK. If I need protection from something, I will ASK. But what I MOST need is simply to talk - to express the inner feelings OUT LOUD. Sometimes this may mean tears (which few men deal with well)... none of this means I am losing my mind or melting down - it means I am DEALING with the feelings I have and I need my partner to know how I feel and to be my "sounding board." Getting started can be difficult...Sometimes it helps simply to sit down and tell a spouse, "Look. I NEED to talk about this with someone and you are my best friend, but I am afraid to be open with you because...." and lay it out. Besides helping to open needed lines of communication with this issue, it also helps open the lines of communication in our marriages in general and that is never a bad thing!!

I "hear" a touch of "perfectionism" in your statements. Despite how we go on about the incompetancy of others when we vent here, HONEST, everyone is NOT an incompetant dolt!! There are folks you can count on in certain scenarios, some anytime day or night, some not on your life. Just because someone's approach or "ways" of doing things is different from yours does not mean they are wrong or inadequate - just different.

One of the biggest mistakes made by caregivers is thinking that "nobody but me can care for my loved one." Das crapola of the highest order. There are some areas of caregiving where I excel; there are other areas where I barely get by and some I downright suck at. Good caregiving requires that you FIRST, take care of yourself, then oversee caregiving to arrange for the best GENERAL care that we can for our LOs. Where we are weak or unable to give adequate care, we find the right person for the job. It will NEVER be perfect, but by honestly evaluating your strengths and weaknesses within the framework of your Mom's needs, you can arrive at a solution that is good for your mom and good for YOU as her primary caregiver.

Please do not think you have to apologize for sharing your frustrations and anguish here - we KNOW it's a terrible feeling and are here to help. Spew anytime your fingers get the urge!!

I hope you have a GREAT weekend. I am sure you will be busy, but try and carve out a little time JUST FOR YOU!!

Sure....the link is:

Early-Onset_Alzheimers_Kansas_City-subscribe@yahoogroups.com

Don't be misled by the Kansas City in the title...there are people from everywhere in the group. I need great communicators in the group!

Janie...I wish your whole post made it. I feel a connection to you already.

Cat, I just finished a long post to you and (somehow) I got knocked off line.

Anyway, "part" of what I was writing is that I am very glad to hear you have a Yahoo group started. Also wondered if you'd want to post a link to it here? It may help populate your group with more EOAD folks just like yourself!

And, most likely, your husband WOULDN'T understand your thoughts and feelings; it's not HIS mom!! But, he could very well be a soft place for you to fall, if you'd let him in just "a little."

((((( Cat )))))

Thanks Janie...

Incidentally, I was on the phone the day after I found out about Mom's diagnosis to the local chapter. The only group that I could find was an adult children of parents with Alzheimer's group. Needless to say, all of the adult children there, were my Mom's age or older. I do 'own' a support board for Early Onset on Yahoo, and it's finally beginning to get some new members, and we are trying to get together a 'chat time'.

I don't talk to my husband about it. I don't know how he would react, or if he would even understand my thoughts and feelings about it. I do feel very alone most of the time, and that, in turn, makes me feel like I am in charge of doing everything, and I feel like I can't count on anyone to do anything. It's a terrible feeling. Ahh...spewing at the fingers again. Sorry.

quote:

Ronnie...

I know exactly how you feel. The loss I feel watching my mother with this disease is beyond words. It has to definitely be the most devestating loss of my life, and I am just 34. Knowing what the future holds is even more devestating as well.

Honey, the above is what you wrote on February 8th.

You are the same age as my younger son. I cannot fathom his reaction to my getting EOAD!!! I suspect, since we are very close, that he would go into major meltdown. OMG, just the very thought of it makes my heart hurt for him.

And, you are so young! My heart hurts for YOU as well. I'm wondering if you are sharing all this emotional angst with your husband? (I wouldn't think he'd make that "lazy" remark if he truly knew that you are torn up inside.)

And, in that (so far) the only support groups are for people much older than either you OR your mom, you must feel very alone. Have you called the local Alzheimer's association in your town to see if they have an EOAD support group?

I'm thinking of you and truly hope you can find a LOCAL group that will help you get through this!!

Please keep us posted, honey.

PS - I don't know if you're in Kansas City, Kansas or Kansas City, Missouri. Here's a link:

http://search.alz.org/sitemap.asp

Guilty as charged. I've been holding my breath.

Yesterday my husband got off work early and said "I was just feeling lazy today."

I wish even HE knew how much I wish I could have a day where I feel lazy.

Just having a hard time dealing....

Moms_Buddy said:

quote:

... I have a standing appointment with myself every couple of days to sit and feel abjectly sorry for myself for 15 minutes... I usually get bored after the first 5... I also spend some time every couple of days trotting out things that anger me... I talk out loud, chewing out this person and that, yelling at doctors, bureaucrats, lawmakers and idiots of every genre (who cares if the neighbors think I am crazy - it keeps them off my back! )... Even if there is NO ONE around to listen to me (for which I am usually thankful!!), I listen to me!! Generally after punching a relief hole in all the pent-up destructive emotions, I feel better...

---------
I've gotta tell you, MB, that this is an attitude adjustment technique I wish I'd heard of years ago!! I applaud you for your "reality check" system!

CAT, how are things going with YOU today? You've been very quiet; I only hope it's because you've been busy and not because you've been holding your breath!

~ Janie

Another good way to find others with similar situations (if they don't seem to exist in established groups) is to ask your mom's doc if he/she has other patients with similar problems who might be interested in getting together over coffee every week or two... If so, perhaps you could put up a card on their bulletin board to form an informal support group of like-minded individuals... home health places, councils on aging, nursing homes and assisted living places, local churches and even pharmacies or a small classified ad in your local newspaper might be other sources to help y'all get together...

You can just attend the one that doesn't fit and over time, other folks in your shoes will wander in and feel out of place also! Even though the situations seem very different on the surface, there are LOTS of similarities running just under the surface... Other support groups - most noteably 12 step programs - detail coping skills that are directly applicable to getting through life's difficulties (one day at a time, easy does it, the serenity prayer, don't sweat the small stuff, etc.). Over the years, I have found that coping is coping, no matter what the challenge is... My biggest enemy is self-pity. Every time I catch myself wailing "why me?" I answer with "why not?"... Helps me to adjust my attitude which is the key to living with most of my mental faculties intact from one day to the next... Channelling anger effectively is another must... does no good to wail and rale and scream at the universe for the inequity of the situation or to blast health care workers, or our relatives with age-old family issues or to suck everything up to form a deep, dark depression... Anger has many shades - irritations should not be allowed to become hurricanes of fury!! Pick your fights carefully and spend your energy where it has the best chance of effecting positive change. I have a standing appointment with myself every couple of days to sit and feel abjectly sorry for myself for 15 minutes... I usually get bored after the first 5... I also spend some time every couple of days trotting out things that anger me... I talk out loud, chewing out this person and that, yelling at doctors, bureaucrats, lawmakers and idiots of every genre (who cares if the neighbors think I am crazy - it keeps them off my back! )... Even if there is NO ONE around to listen to me (for which I am usually thankful!!), I listen to me!! Generally after punching a relief hole in all the pent-up destructive emotions, I feel better. Nothing has changed, but I have adjusted my attitude and I can carry on throughout my day without the heavy load of all that negative stuffing. Every dog must have its day - every negative emotion has to have its own airtime. If I can give those feelings expression in a safe environment, I feel more balanced. By allowing myself some "rave" time, when I have to deal with the individuals with whom I am angry, I find that my approach is much more effective than if I simply hurl a nuke at them...

Early onset Alzheimer's is a particularly disturbing condition for caregivers because our loved ones are so young and so are their caregivers!! At 53, it is troubling to me to know that some of my runnin' buddies throughout the years are now NOT enjoying their 50s as a result of this terrible disease... Their kids have to grow up real quickly and deal with so many disturbing emotional issues. Despite the worry and pain, remember one thing: if life can't always be rosy, conversely, life can't suck ALL the time either!! The hard times you have now embody experiences you already have survived and are continuing to survive. Build on those successes and whenever possible, share them with others! None of that changes the facts of the situation, but we CAN change our attitudes about those things, which is the secret to survival. Ya can't help what you feel, but you CAN help what you do with it! I hope that your experiences will light a fire under you and that you will find a way to help yourself and others whose lives have been so rudely interrupted.

Good luck!! You seem like a tough cookie - I'm bettin' that you will not only hang in there, but will get through this experience with resources to help others for the rest of your life.

This message has been edited. Last edited by: Moms_Buddy,

WOW 11 kittys! I'll take 10...okay...maybe 8...okay...maybe 4...okay...I can't take your babies from you.

Thanks for your very kind words Moms Buddy. I tell you what. You hit the nail on the head with all of your words. Actually, everyone here has so far.

We do have a support group that I joined for Adult Children of Parents with Alzheimer's. I went a few times, and it was, unfortunately, not beneficial at all. What I was hoping to find was a support group for younger adult children...primarily focused on maybe Early Onset, because, frankly, my issues were different than all of the others at the group who were retired, and taking care of their parents who were quite elderly. I didn't feel like they could truly understand where I was coming from, what kind of advice to give me, or how to juggle the stressors of every day life. I found that researching (which I do during all of my 'down time') is my primary form of 'support' and now I have found this forum for another form of support.

Thank you all for being here.