Joan and Marilyn MD, the Alzheimers Organization is going to send me to Washington DC for the Advocacy Forum April 6 to 9th. It is all expense paid all the way here from the Big Island, plus hotels and meals of course. They feel I would be a good representative from our island.
As the time draws nearer, there will be lots more to say here. I AM honored to be going, and I know it will further the cause for help. But..I am just so sad I can barely function. Even though in some ways my life is good, finances are good for now, Dado is in the Veterans home and it is all paid for, and my health seems to be holding up.
Please help lift me up in this time. I know that so much good can come from all this, but every time I see his sweet face and think of him I am just crushed. I am seriously considering going back on the Celexa that I took for a few months last year. It did help to makes things smooth, I guess I just fight it because I fear prescription drugs and think that I am SUPPOSED TO FEEL all of this.
But the doctors told me that constant sadness and depression drains your serontonin levels and that there is no need to take them forever. I want to be well. I want to be a good performing member of this crazy mixed up world and to bring help and joy to people, I know I can. I have tried exercise, lots of rest, eating well, and fervent prayer, and I still cannot stop hurting. Time to trust that sometimes, medicine can help.
thanks, and I going to grab that rope, right now. I have been such a mess and have not wanted to bring you all down here. Please know that I will be ok, and I care for all of you.
Hey Coco it's OK to be going through a down time, that's the time for those of us that are in a strong period of time to reach down and offer a helping hand to lift you up knowing that when we have a down time your open hand will be there for us.
So here is my hand please take it, lean on me for now. Knowing that your work with the advocacy forum will help so many. We need every single one of us that will step up and tell our story. You are strong.
A side note on the anti depressant meds...just last week my neurologist for my migraines told me that when one has been on one of these meds and then goes off ( takes about 6 weeks to get it out of your system) that should the circumstances present where the meds are needed again, they are not as effective for some reason..why who knows, tolerance to the medication? If anyone else has heard this I would be interested in that opinion. I was not wanting to go off Sertraline, as it helps a lot with the control of migraine for me. It also helped a great deal in the last year of Ozzie's life and certainly gets credit for helping me get through his death, funeral and all the estate matters. When people tell me how well I am doing, I grin and just say it isn't me it's drugs!!
Coco - great news and what a privilege. I would definitely talk to the doctor about it. You were not on it that long so maybe it will still be effective. Or he might want to try another one.
Mimi - that sounds like it could be true. You would have to try it to find out and I am certain you do not want to do that.
Coco, my heart aches for you. This is such a wonderful opportunity for you to advocate for us all - and I know you will miss your Dado while gone. Just think how far you have come on this journey!!! You have been awesome. Talk to your doctor, I'm sure he can give you something to smooth out the edges and get you through this. I'm so proud of you, to have followed your journey on this site - and to see how you have grown in so many ways.
We are all here for you, excited for you and lifting you up as your journey continues. (((((HUGS)))))
Coco, Doesn't it seems like every good thing in life now has to be balanced by something not so good? Going to Washington is a great opportunity for you. What do you have to lose by going back on an antidepressant? That it won't work as well? That you will feel better? Yes, probably too many people are depressed and on meds, but of all of those people, caregivers definitely have a valid reason to need some medication help. If you recognize that you are down, then you probably need some help. Meds aren't the answer to everything, but they can help even out the mountains and the valleys, so why not take it? Think of it this way: do you want to spend a few spring days walking around Washington with a little rain cloud over your head? If you start now, hopefully you will be feeling better by April.
Coco, I know you will do well in D.C. speaking for all of us.What an honor to be chosen.I've marked the date on my calendar and will be sending you good vibes.We all wish you ewll. Go for it! Enjoy it!
Coco--I tuned in here today and believe me, I needed to read something good. So happy that you're going to the Advocacy Forum in April--you will be great! I want to address several issues:
The Forum: when I attended for all 3 days, I found it exhausting. I'm in good shape physically, so I think it was the mental stress of focusing on AD for 3 full days. I had previously visited offices of some Congressional reps and had already testified before a the Senate, so I had some experience under my belt. My advice to you is to try to get yourself into a better frame of mind before you go. Don't stress over speaking to the members of Congress--you will be talking mostly to aides--young people who work on the Hill. Occasionally, someone who has specific interest in AD (i.e. Senator Barbara Mikulski) will make time in their schedule to actually meet with the advocates. I think the main purpose of having advocates there is to bring real faces to the disease. You will be asked to tell your and Dado's story--you can cry and get emotional--that's ok. I know with your engaging personality you will hit it out of the park.
Taking meds: If you need them, take them. I'm not a pill person and have been able to get by without drugs, but I use exercise, shopping, chocolate, wine, etc. to help me. If the Celexa helps you, go for it.
Steve was taken to an inpatient hospice on Weds. because of seizures. His vital signs are good and his body isn't shutting down. I am taking it day by day--the end could be near, or he could rebound and go back to the ALF. Thanks, Coco, for posting your good news.
Coco, I agree with the others - take the meds to help with the rough edges. I cannot think of a better advocate for us than you, so I hope you got to Washington DC and let them see the real face of Alzheimers and an Alzheimer spouse. As Marilyn says, your engaging personality will definitely make a strong impression on those with whom you meet!
Marilyn, keeping you and Steve in my thoughts and prayers.
Coco, I am so glad you are doing this - I can't think of a better representative, you have been through so much, and battled so hard. You know what it is like to live in the trenches, day after day. And sometimes, when you have already tried all of the other remedies for being down, meds are the answer. If you need some pharmaceutical help to get yourself prepared for this, then I say, you don't need permission from anyone.
I know how hard it is for my son to be an advocate for us, and I know that this won't be easy for you either. But the more people we have helping us fight our battles, the better off care givers and people with dementia will be in the future, even if its too late for us and our LO's.
Coco, Sending prayers for strength, I know you can do this, and do it well. You will knock their socks off. And if you need the Celexa, take it. Nothing wrong with that.
I made a decision on the meds. Took a celexa last night and it totally zombied me out, I really really do not want to take those. So, I have dug out my Omega oils, vitamin B, and am going to pick up some St. Johns Wort. I am going to make a big effort to go the natural route, if it does not work within a month I will reconsider.
MarilynMD I also had done that advocacy last year in Honolulu, petitioning our government , going office to office asking for funds for the Office on Aging over here. (they did receive the needed funds) I found it very educational and rewarding. And that was great to tell me how exhausting the DC trip could be, and to build myself up. I am starting today.
Also Marilyn I am sorry to hear about your husbands decline, I send you strength and love and hope. If Dado has any major problems in the time of this trip, I will not go.
I will update more on the upcoming trip as I learn more. Once again, thanks for all the encouragement.
I am thrilled that you are going to the DC Forum. You will be a wonderful representative. I have been to the Forum 3 times, and would like to help you plan the trip to maximize your effectiveness without sacrificing your energy and sleep. Please check your email for details.
Awwwwww, dear sweet Coco ((Hugs)) I think sometimes we are just too damn hard on ourselves, expecting too much of ourselves. I was in full blown mourning for close to two years after placing Lynn. It is life altering and it hurts like hell, be gentle with your self my friend.
Low Serotonin levels are very real and need to be addressed. Mine were "dangerously low". Have you been to your doctor and at least had your levels checked? I hear you on not wanting to take pills, but there are a whole bunch of them available and not all will make you feel crappy and like a zombie. I too went a more natural route, but I needed my doctors guidance to do so.
YOU are worth the effort and you deserve to feel some light and joy. The sadness will always be there, but it doesn't have to consume us. Coco, please do take care of yourself as you are precious to many of us. Love you ♥
Coco It is so exciting that you re going to DC for the conference. I have looked and would love to attend. It is not to be this year. My youngest daughter lives in DC. Make sure you take a little time for yourself while you are there. You deserve it. I have read your post for awhile and know you are going through so much. I know you will do great there. Thank you for going and representing all of us who are dealing with this.
All of your comments, love, and support, reach deeply in to me, in to the place where not long ago, I thought would never be filled again. For those of you that feel drained of life and hope, please know, that with perserverance and for me, my faith and prayers, AND taking good care of yourself, that life can shine brightly again, here and there.
I will keep you all updated on DC. Joan and MarilynMD have given me so much insight to it. And, as silly as it sounds, THANKS Joan for telling me not to worry about what to wear. ( :
Oh Coco, how wonderful that you will be a voice for ALL of us. Sure wish we could get together when you are in DC (I only live an hour away) but I know you will be so busy that you won't even have time to think! Like jackie said - take some time for yourself while you're here. At least see some of the monuments. (((HUGS)))
So looks like it is on!! I just heard from our local chapter, and they want me to submit the exact dates I want to go and they shall make travel arrangements. My sister who used to live there wants to meet me there a few days earlier and she is going to show me around. (She has a healthy income, and will treat me well) I have never been to the east coast so something new.
Also, the guy in charge, (Chris), asked me if I wanted to go as an Ambassador. Not sure what this will entail, it sure sounds important. ( ; Joan or Marilyn, do you know? I did ask him to send me the information and forms for that.
Now I am thinking too of who can stay that week at my house, to feed cats and keep an eye on things. I do hate to leave Dado for that amount of time, but I know he will be ok and this is really important.
Coco.......... ......You are truly an amazing girl and I just want you to know that I've been following you through all this and will keep on doing so.........You are an inspiration to all of us. ................GeorgieBoy
Am sure you'll do a great job representing not only your state, but all of the AD community. Have a great time, put on a presentation and enjoy the East Coast!
Coco (and Joan)---being an Ambassador means you are assigned either to your US representative or US senator, and meet with them (or more likely someone in their local office) before you go to DC and also after. The idea is to establish an ongoing relationship with your congressman/senator, in addition to seeing the various ones we try to see in DC. There is also a monthly phone call with the public policy office of the Alz Assoc. which can be quite informative.
awwww thanks for all the love. Fiona68, Joan, marty*, and Georgieboy, you are all so uplifting.
and texasmom thanks for that too! I am awaiting to hear back from Chris on travel plans etc. I did see on their site where you sign up, to be an Advocate, which seems to be Ambassador too. I am really looking forward to learning more, and hopefully even make a difference.
I will be flying in ahead a couple of days to spend time with a sister before. This will at least give me a chance to catch my breath after the very long flight.
They are lucky to have you and this is all such good news. Will you be able to let us know ahead of time if you are going to be on c-span or you tube?
My husband used to go to DC once a year for a work related thing, at cherry blossom time, so I tagged along for the museums, restaurants, and Georgetown shopping. I don't know if it is still there, but in Georgetown there was a shop called "The Magical Animal" with the cutest cat stuff you can imagine.
they were building the WWII memorial the last time we were there, but they had finished the Korean War memorial. I love the way they did it. We also saw the Holocaust Memorial but you might not want to visit something so sad at this time
The intensity of the Holocaust Memorial is beyond belief. While I have buzzed through many museums/memorials that can't be done with this Memorial. In my opinion it is a several hour commitment.
If I had to pick one of the activities mentioned above, it will be the Holocaust Memorial. The other would be the Vietnam one. However, I think during the forum there will not be time for all that. I do have a day before with my sister, so we shall see.
It is on! Leaving my island of Hawaii April 4th evening, 3 flights later arriving Ronald Reagan Airport Saturday the 5th late afternoon. This gives me the rest of that day, and Sunday with my sister. The Forum is Monday, Tuesday, Wednesday, then I fly back home Thursday really early, arriving back on my island Friday afternoon . Whew. About 12 hours flying time each way.
More updates as they come.I do have someone to stay at my home and take care of things...good....and Dado will be visited and told each day that I will be back. I am working on my soul and spirit to make this a success.
Coco, you might want to check out the Washingtonian Welcome Guide. While it is $3.99 at newsstands it is free to view on the web. Go to http://www.washingtonian.com and click on the Welcome Guide link. A new issue just hit the newsstands today so a new digital version should be available in the next few days.
Coco My daughter lives in DC. I go up about 2 times a year. On the mall you will find the Vietnam memorial, WWII, Lincoln, Korean also. The washington monument is in the middle. You can see all of these in just a little time. You have to walk a lot. If you have a chance to walk it, it is amazing. I am going March 20th for 4 days. Every time I go it is exciting. I hope you have a chance to see some. My thoughts and prayers will be with you during the conference. Have a great trip. Thank you for doing this.
If you want to go up the Washington Monument you have to either get you ticket before oor get there early like at 8, then come back for you time. Same with the Holocaust.
thanks for all the tips everyone!! I will definetely do the stroll in the mall jackie29, I have heard those memorials are cool, especially the Korean one. As to the Holocaust, sounds like I will not make that due to your comment Charlotte. I will not be making any plans BEFORE for anything, my main focus is the Forum. One day though I would really like to go to that, I have always been fascinated with the second world war and all the atrocities, and what human beings are capable of good and bad.
(by the way Charlotte, I just wanted to say though I have not replied to many comments lately, I have been following, and my heart and prayers are with you and Art in this tough time.)
The stroll on the mall is worth it because of all the walls: WWII, Korean, Vietnam - one for men, one for women, Lincoln Memorial all on that stroll. Here is a link that shows a quick map of the mall:
Hi everyone!! Just getting ready for my first meeting and I am so THRILLED to be here. My sister is signing up for the whole program she is so for the cause.
Had a nice sunny day yesterday and did some walking and exploring. The flight over took 18 hours with layovers and all, but no sweat, I feel fine. More later just wanted to say Aloha and love to you all. Patty
So good to hear from you. I have been thinking about you, and was hoping that you would check in. I told my policy advisor to look you up. She is with the Florida delegation, and her name is Linda.
Are you the only delegate from Hawaii? Usually Alaska and Hawaii only get to send one or two. You will see all of the delegates from each State Monday evening at the State roll call.
There will be a lot to learn and absorb, but I know you will do great!
I have posted a "live" update on the Alzheimer's Advocacy Forum on the home page - www.thealzheimerspouse.com. It is under "Breaking News", and has been taken from the Alzheimer's Association website. By "live", I mean that the Alzheimer's Association is continually updating it with news and information about what is going on at the Forum. You can have kind of a "virtual" attendance by keeping track of it.
I have been thinking a lot about you dear Coco.. and many of my long time friends here. Tonight I decided to drop by and see how you are doing. How excited you must be!! I know you will be fantastic! How wonderful that your sister decided to join you :) Much love my friend ♥
Hi Nikki..been thinking about YOU too...I have been off the net so to speak, just getting estate things wrapped up...as Phranque would say I am phinally phinished with the worst of it.
A friend of mine is at the DC meeting. She was so excited to go. She never posted here but her DH died of ALZ 3 years ago...she is " giving back" support the way she received it. Not everyone can do that...but maybe in time....