I can't believe it! In my deep dark pit this past while, I started to take Celexa again, giving it another chance, and it seems to be helping a bit. Then I pulled really hard on the big girl panties, and drove the 2 hours drive to the first Alzheimers Association support group. I was so surprised, I was thinking it would just be a few people stating experience and an Administrator. In fact the "one in charge' of the 4 times a month meetings, is a well known Social Worker the works full time for AZ. Assoc., and she is a strong figure in our state for petitioning for help for Caregivers.
Well..we all went around, (about 20 people!), introduced and told our stories. Tears, and laughter, perfect understanding, and so much new information. Did you know that when you are stressed in a situation, for month after month, year after year, that your body chemistry actually changes? The Social worker assured me to keep on taking the Celexa for at least a year because of this.
Anyway, the group was quite taken aback at Dado's fast progression, and it was interesting to see just how educated I had made myself, so many of them there were really clueless. Saying things like, "I don't know WHY my Mom keeps lying, and falling down, and she drives me crazy!" (ummm, she has Az....) And the Social worker was great with these people.
She was looking for 2 caregivers from Hawaii island to attend a State Assembly Meeting in Honolulu, Tuesday April 2nd. It is all about petitioning for more help for all of us, especially in the area of free full time Adult day care. She assured me that the fact that Dado is in a home does not make any difference.
So I am awaiting further instruction from the Dept. of Aging, will I make a speech, how long, content etc.
Wow. Of course I volunteered, and you know, they are having a hard time finding a second person, I find this surprising. I JUMP at the chance to make any kind of difference. ( that may sound conceited, hope not)
Of course it is all expenses paid....just one day. Too bad we don't get a night in a snazzy Waikiki hotel.
I am working on building up my health that is still low...vitamins, protein powders, fruits and veggies. I want to be in great shape for this, and everything.
That is awesome Coco!! You Go Girl :) I know you will do a fantastic job. Please keep us posted
I did know that about our bodies chemistry. For 2 years my doctor checked my serotonin levels regularly. I am glad you have decided to give the medicine a chance. So happy to hear you are starting to feel a bit better. ((Hugs))
Coco, so often we feel completely powerless as this disease destroys our loved ones. Glad you have an opportunity to participate in something that may help fellow caregivers in such an important area. You have such a huge heart and I cannot think of a better ambassador. You go girl!
Thanks too for the information about how long-term stress fundamentally changes our body's chemistry. Hadn't even considered this very important fact.
Good for you, Coco! When Sid was more independent than he is now, I was a delegate to the Alzheimer's Washington DC Forum - I did it for 3 years, and it really makes you feel like you're being pro-active and contributing. You'll be great, and it will give you a chance to meet new people and feel alive.
Besides how good you will do....people will be shocked that you are so young and so is Dado. This may help even more. And, as many can see on here we keep getting more and more younger people. So sad.
My neurologist put me on Zoloft. I have been on the full dose now for about 6 weeks and it has made a huge difference in how I am able to cope. In his notes to my PCP he stated that I should be on the Zoloft for a minimum of one year....so I would say the social worker is on to something from her experience. Good for you going to this meeting....gals and guys like you and Joan are going to be real trail blazers for us and maybe even some of us will be involved too. Keep going tot those support meetings.
And I'll say it again!! "Coco, you ROCK!!!" You are such a roll model for us all!!! With all you are enduring and facing, even with your weak health, you don't hesitate to step up. How wonderful of you to help our cause and speak for us. Thank you, Thank YOU!
Thanks for mentioning the age thing JudithKB*. Despite being a "bit" up and down in the emotional department, I have been trying to take care of myself, and also, despite deep well earned sunshiney wrinkles, I am looking pretty good. Short sassy hair cut one month ago so it is just at the right phase. My typical tomboy tendencies are smothered as I debate about what to wear ha ha.
I have some real nice slacks, and a great top. May have to spring for shoes. OH to wear MAKEUP again! I will try to at least get a picture that I can post on my profile.
Oh and of course...lol...thinking about what I will say.
Thanks for all the thumbs up. Slowly slowly I am recovering, not all the way, but climbing up out of the valley in to the hills.
As always...right behind Nikki!! Waiting for your autograph lol You make us proud Coco. Glad the celexa is helping and giving you the energy to make all of our voices heard. Thanks for doing this.
Coco--how wonderful! I have been doing advocacy work since about 2008, when I spoke before a Senate subcommittee. That time (my first public speaking "job" re Steve's AD) was the hardest, but it has become easier with practice. And it so helps me to raise awareness of EOAD and to educate the public. I think you'll find that it gives us a purpose, and helps deal with the sadness. Right before I signed on this morning, I was trying to figure out what to wear to a speaking event this Thursday. We were asked to wear purple--the Alz Assn color.
My experience has been that I am given a general topic and the length of the speech; I write it (talking points) and whoever is in charge, reviews it. They don't really make changes. I print it out in a LARGE font, so I don't need to wear my reading glasses! And I practice a lot at home beforehand, making sure it fits into the time limit and to give me confidence. Good going!!!!
P. S. I actually prefer when there's a Q&A session after the talk. People ask things like--what was the first thing you noticed (short-term memory loss); does your husband still recognize you (yes), etc. When asked how to deal with problems, I always try to put in a plug for my favorite coping technique, therapeutic fibbing.
Coco, yes, you are the right person to be our ambassador! As JudithKB* says, I think people will be shocked that someone as young as you and Dado are dealing with this horrid disease. I know you'll do us proud! We want a full report. Much love.
Coco, I'm right there with everyone else! You ROCK! Tell it like it IS! Speak from your heart & you can't go wrong. I'm sure you will look beautiful in whatever you wear. (((HUGS)))!
Good for you, Coco! You'll be great. I did some advocacy when DH was in the early stages, but as you well know, the time comes when it's difficult to leave your spouse for long. I admire all those of you who work to improve life for those with dementia and their caregivers.
wonderful news coco! keep us updated on how its going. and for heavens sake dont sugarcoat the facts! tell it like it is here on joans. its time folks get a real picture of AD and what it does to the caregivers. divvi
wow everybody thanks so much for your encouragement. I hope it becomes a helpful thing. I will keep you updated of course.
MarilynMD yes I remember reading about your advocacy. Funny I had already thought of doing large print so I don't have to wear my ugly glasses. And I will wear a purple orchid in my hair.
I almost want to think it is not a big deal, that I am just getting fantasies..about making a difference, or having something good come out of it all. But what a great cause, free daycare for Caregivers , 5 days a week. Of course we should get that, think of all the money that is being saved by us doing ALL the work. I hope sometime down the road too, that every caregiver should get some kind of financial help.
When I think of what that 10 hours I week help I got, just 10 hours, and it helped a bit to keep my sanity. But it was not enough to stave off exhaustion, sleeplessness, overworked, depressed, and trapped. Oh guys I will do my best to be heard.
I don't know how many states do it, but Washington state pays for day care for women working minimum wage jobs. How much more valuable to our spouse and the contributing of taxes would it be if states provided free day care for those working spouses that do not make enough to pay for it? Or for spouses who do not work - they deserve it too.
Where I live and surrounding areas Adult Day Care charges are based on family income. But this is a local matter, not a state or federal one (though the daycare centers might be using state and/or federal money). It makes a lot of sense to subsidize families in this way and enable people to work. I believe there is benefits to working (I could live live 24/7 with my wife) and the person doesn't have a lifetime loss of income. If someone takes a few years off from work there is a good chance they will go back to work making less than before, which also means paying less taxes than before.
Even someone with a good paying job has trouble meeting care expenses. I stay afloat through help from my FIL. Don't know how people with fewer financial resources manage.
And I think spouses who do not work need day care so they don't become a statistic themselves.
this is a link to who is sponsoring this event at the State Senate on Tuesday. Funny I did not find these guys before. Check it out , maybe there is something in your state like it.
Had an amazing experience in Honolulu, and learned so much in just half a day. I will be back later to post on it. I want to type it in my diary and then cut and paste. How wonderful to discover that having a voice, and not being shy, has a payoff.
HAWAII FAMILY CAREGIVER COALITION Petition to State Senators and Representatives-regarding HB1432 (Aging and Disability Resource Center Bill and, SB106 (Aging Omnibus BIll)
I have included some things to read about these bills below, if you are interested. Basically, the HB1432, is implanted on one island, and they want it on every one of the 5 major islands. It is a one stop shop for caregivers to go and get all the things done, for free, like Medicaid, Medicare, placement, support, funding and just anything to do with our plight. How nice it would have been if we had this when I was tearing my hair out.
We split up in to teams, one team from each island, consisting of the lobbyist, a representative from AARP, and two caregivers. Apparently this was a new strategy to include a caregiver to speak. It was not what I thought!! (one big meeting and it is all over) We went to the State Government building, just a beautiful 5 story building in downtown Honolulu. Each team was assigned to no less that 14! senators and reps to go see, about 15 minutes each. Man I learned so much, I really did not know how the government worked, and that our voices CAN really make a difference. Out of the 14 people , at least 12 seemed very receptive and wanted to sign the bill, that basically had funds cut and we want it re instated. IT WAS SO EMOTIONAL relating our story, briefly but effectively. I made sure to include that though this caregiving experience has been the toughest and saddest thing ever, it has also been the most rewarding.
We walked up and down and all around my legs were sore later, lucky I wore comfy shoes. (and…nice slacks, pretty blouse, and a light fitted blazer jacket) By the time we got to the final ones, I did not have to read off the paper anymore, and lol had my voiced raised in the righteous plea.
The lobbyist who knows most of these politicians, was so pleased and told me so how happy he was I came. AND, one of the senators from my island is a doctor, and knows the caregivers who take care of Dado! He knows them well as they helped in his election team.
My flights there and back, though only 35 minutes, were FIRST CLASS, ha ha, they brought me a newspaper, snacks, free wine, and kept wanting to refill my drinks. I was in row one. On the way back there just happened to be a lady next to me that sponsors support classes for brain related disorders, and was very in touch with all this, knew everybody. She gave me some names people to contact on this island if I want to get involved.
We never realize what we can accomplish until we try. I am SOOOOOO proud of you. In my experiences as a delegate to the Washington DC Forum, I met so many people and learned so much.
The "one stop shopping" for FREE is a fabulous idea. It would have saved me from the Hell I am currently going through trying to get answers and information. One thing I do know for sure is that politicians do have a human side in there somewhere, and the one thing I also noticed was that our personal stories moved them. I told this to MarilyinMD when she was a DC advocate last year, and she had the same experience. She said that they listened and were moved by the personal stories.
Give some serious thought to going to the DC Forum, if not this year, then next. The Alzheimer's Association has scholarships and can help with the cost of the trip. I'm hoping to go next year. We can meet and spend time together. How cool would that be? In the 3 years that I attended, Hawaii sent one or two delegates each year.
How exciting for you Coco. When you think about how many officials were there that is a big deal considering the population of even your largest Isaland. Sound like you made lots of new contacts and that will be so helpful to you and others that need help in the future and even now. You might even be able to get a job for yourself out of this new adventure if you were interested. You will need to keep us posted whenever you learn something new that would be a help to all the caregivers.
It sounds to me like there was a lot of inter-action and not just speeches. This is good I think. Did anyone comment about your "youth" as a caregiver?
Coco, way to go!!! If the struggle that you and your Dado have gone through have a secret purpose, it is to let your words be heard by those who can help so many. Best of luck to those who listened and are able to do promising things for all who are caregivers. Thank you again for all you have done for us.
Coco how fabulous!! I love that you "had my voiced raised in the righteous plea." It is amazing what we can accomplish when we find our voice. Yes, Dado would be so very proud of you ♥ As are we! ((hugs))
You will be a wonderful spokes"person" for the cause! You will do a fabulous job speaking as our representative. Share from your heart, speak from experience, and you will be heard by many. WTG!
I debated if I should post this, because I do not want to take the focus off of the wonderful work you have done Coco.... but I just wanted to share with you that for the past month I have been working to try to change a federal regulation about staffing requirements in facilities. It is a daunting task!! One I will admit this week I wondered if I had the fortitude for. But you dear Coco have given me the push I need to continue the fight! I want to thank you for that ♥
Joan I do have a question for you too, I tried to get involved in the DC forum this year and was in the thinking stage of can I really do this? when I discovered " Due to record demand, the 2013 Forum can no longer accept registration or housing requests, as it is at full capacity." Now that is fantastic!! But I wondering if you are planning on going next year, when do you have to register? When things calm down in your world I would like to talk with you and get an idea of what one needs to do.
And that leads me to my next question, have any of our members here signed up to be an advocate with the Alzheimer's Association?
Nikki----just FYI, the reason (I assume) that the 2013 Forum filled up so fast is that in honor of the 25th year, the Association waived the registration fees. Of course, we still have to pay for airfare and hotel, although I recall there is funding at the federal and local association levels for those going who need assistance. So I will be there---was there last year also----and to be honest, will be interesting with the stalemate in Congress about so many things (not a political statement, just the truth) what the focus is this year and how many of the legislators we actually get to meet with.
Nikki--I do a lot of work with my Alz Assn Chapter--but I don't think I ever formally signed up to be an advocate. I didn't sign up for the forum this year because last year I paid all of my own expenses, and with the cost of the hotel and the registration fee, I decided that I'd try to go every other year. Instead, this year I'm attending our chapter's Memory Ball (next week), which is their biggest fundraising event.
texasmom--great that you're attending again. Please post about your experiences when you come back!
It would be really wonderful if next year some of us from this website could plan to go and spend time there together. I think it's especially important for those of us with LO's dx with the younger onset dementias to go. Last year, I spoke with Rep. Elijah Cummings, and he asked me how old Steve was when dx. You should have seen his face when I said 60. I later found out that Rep. Cummings is in his early 60's; so you can see what was going through his mind.
Coco--sounds like you had a great start to your advocacy "career"!
PLEASE let us continue this thread with everyone's input, of course Nikki! It is not just about me and it is so interesting to read what you all have to say. I am casting my vote for MarilynMD when she runs for the White House...