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  1.  
    My thread on dh update was getting kind of long, so I made this new one. I sure hope any one else that needs to add on to this subject will feel free to join this thread.

    I am now on "leave" from my Farmers Market space, they will hold it until end of September without me having to lose it, and re apply for a space. Despite friends and others on this end that insist I need to keep it, take a break and go back, it is not as important as keeping my sanity. Of course money is a big issue, but I am not thinking about that for at least a few weeks, and living off a bit of savings.

    In the next few weeks I plan on checking out some facilities, just to see. I just cannot commit to it right now. I know I had mentioned that Dado may have fast moving "Familial" type AD- however this is not a proven fact and I may just be observing a swiftly moving "regular" disease. Whatever it is it really sucks big time.

    Personally, I feel a bit lousy about myself, having only been caregiving for 1 year 8 months now. I try to compare myself to others here, yes, I am younger than many, (57), yes, I still work, and need to.I don't want to sound like I have it harder than anyone else, and in fact, know how much better than many it is.

    I just cannot bring myself yet, to go for "Food stamps" which some have suggested. It is too much like welfare and I am already receiving Quest, State Medical.

    Hope and prayers going up for all of you. Sometimes, I think it is REALLY ridiculous, that we here cannot connect in real life. I know, that if any of you lived close to me, and were willing to meet, I would try my best to swap time and help and work together. There must be a better way.
    •  
      CommentAuthormary75*
    • CommentTimeAug 7th 2012
     
    I think that villages may have worked that way.
  2.  
    Wish we could Coco...I'd love to jam in person with you. Don't feel too lousy--your case of caregiving snowballed pretty quickly. It overwhelms.
  3.  
    Coco, Don't be shy about asking for help. If you need food stamps find out about them. I look at it this way. We have worked and paid taxes for many years. And if we need help, we are just getting some of our money back.

    I am 53 and DH is 61. DD is 16 looked into free or reduced lunch for this year. We still make to much money! But I did look into it.

    I too, feel DH is moving so much faster now into his AD world. I do wish we were closer. I would buy you coffee and have a nice visit :)
    •  
      CommentAuthorJudithKB*
    • CommentTimeAug 7th 2012
     
    Yes Coco...I have paid taxes for many many years and never had anything free ....you get my share....
    I don't need it. Go and get signed up for food stamps. It will be a big help to you. I had an Aunt that got them and they gave out the best cheese and butter you ever wanted to have. Every penny helps.

    Hope things are better for you today and in the coming weeks. Things have kind of slowed down just a little for me.... Just a little thing I have that I look at every once in awhile...maybe it can help you too.

    "When you think you are drowning in life.....Don't worry, your life guard is walking on water."
  4.  
    Coco, like Blue and JudithKB said, apply for food stamps and whatever else that will make it easier for you and Dado. You, as well as the rest of us, have paid taxes for years to fund these programs.

    I was a single mother of two and getting no child support out of my deadbeat ex-husband. I was laid off and it was the hardest thing I ever had to do was to apply for food stamps to feed my children. The woman at Social Services said not to be embarassed, that these programs are there as a safety net when times are tough and it was not welfare. I used them for three months until I got another job.

    Good luck to you and I will continue to keep you and Dado in my prayers.
  5.  
    JudithKB thanks for the quote it is a reminder for me that there is a "plan" for even me. Right now this part of the plan is wearing me out. Coco - go for the food stamps it won't be forever- we all know that one day we'll have plenty of time to work or whatever. Don't have that worry along with the rest you have.
  6.  
    coco--it is unfair to yourself to compare your caregiving experience/duration to others'. We all come into this with different strengths/life experiences/relationships with our LO's etc. Just as each AD patient differs, so do caregivers. Perhaps if you could put Dado into a facility for a respite stay, it would give you the time and energy to clear your mind and make the decisions on how to proceed.
  7.  
    Coco,

    Thank you for your message of strenth on my other topic. You, blue, and I are close in age; I am 52 as is husband.

    When he was home, I thought, this is the worst. When he went through hospital, rehab, alf, hospice, I thought this is the worst. I was always called, it was not respite in any way. I think this is mostly because of his rapid decline; something was always happening. I once posted, I think in response to Marilyninmd that I thought I would not have any true peace while husband was alive but have now found with the bill collectors and Mother and Father's "input" that this is not true either.

    I think I posted to you Coco and to Emily that one of my greatest reliefs was to put the phone on a ringer tone again as husband could not tolerate any kind of ringing phone. Now, living alone, I thought I don't have to fear the phone anymore or the mail. Wrong! Both bring threats from bill collectors and admonitions from Mother (Father is not so much interested). Oh, and I fear the mail too, more threats, more collections.

    No peace yet!
  8.  
    abby* this is so awful, I pray for a way for relief , you have so much else to deal with.

    I took some of your advice and set up an account on Etsy....whew it took half a day and still not done.! Not so much to try to lure people, but to have a "free" website to send people when they ask.
    Thanks so much, I mean, I don't expect a huge rush, but it is something to make me have a wee bit of hope..

    Today is a respite day and I am going to see a counselor!! My new medical covers it, and I just feel it will be good to talk to someone outside of it all. I may get prescribed something, or not. One of the main issues I want to talk about is my anger at useless selfish "friends" Then I will spend a few hours on the Black sand beach carving gourds.

    As much as I was concerned about taking this time off, and not having much cash, so far, (less than a week lol), I am feeling a big sense of relief not having to rush around searching for coconuts , husking , chopping, cooking, bagging, etc, I love my work but I truly need a break.
    •  
      CommentAuthorJudithKB*
    • CommentTimeAug 8th 2012 edited
     
    Coco....Just a littl advice from an Etsy person. Establish 2 days at the most for shipping and put it on
    your site so you are not having to run to the postal place and then people don't expect deliever so quick.

    Don't listed too many things at one time. Just one or two every other day...that way people that didn't see what you listed the first time maybe they will see it the 2nd, 3rd, or 4th time. Also it helps to get people to return to your site. Make announcments that you will be having something new and different by the end of the week...it also helps.

    As I think of other things that might help you I will post them. I know this is OT...but, don't know where else I would post it....sorry if I offend someone.
  9.  
    Thanks for that advice Judith I took it all in!

    Some good news to report...how refreshing. On another thread I mentioned how the certified kitchen that signs my permit so I can sell the coconut candy, backed out of their deal and wanted a huge pile of money to continue on. ( I was told they are getting in to drugs...wonder...why they wanted extra money?)

    Anyway I told them forget it. So if I want to continue, I have to go through the WHOLE routine again, find someone willing, pay them a big sum of money , wait for the Sanitation Dept. to accept. I was almost ready to say forget it.

    TODAY I called the Sanitation/Health Dept. , and talked to the big boss, I was lucky to get a hold of anyone of a Friday. He remembered me and my product from before and all the rules and regs I followed. Anyway, after some discussion, he said "You know, because you cook your coconut at such a high temperature, and now that you are not wholesaling anymore, we can give you 4 month temporary permits just for your Farmers Market, and you may just sell it there. You will not need a certified kitchen and there is no fee"

    I was bowled over, and just short of offering to kiss his feet. SO I am still taking the rest of this month to catch up, and get things in order. Using savings and it is ok! At least it is just a break and not the end of "Coconut Patty"

    Dado has sure liked me being home and not stressing on getting so much work done. He is still in his own world of course, but, the new dose of seroquel and me being here to monitor his bathroom habits has helped.
  10.  
    Oh, Coco, what great news! Sometimes things just have a way of working out for our benefit! I'm so happy for you and that you can take some off in the meantime.

    Of course, it's not the end of "Coconut Patty"!!
  11.  
    Wow Coco, What a blessing! I am so happy for you.
    •  
      CommentAuthorJudithKB*
    • CommentTimeAug 10th 2012
     
    Just would like to know just how many titles you have?? We are all jealous...."Coconut Patty" and
    Princess of "P"....what else?? I just put "P" because that covers both...you know what.

    So glad things are working out for you. It is like living on a yo yo string. Down..Up...Down...Up....

    But, we tuff guys and gals will all make it through this and be stronger and better for it....and best of
    all...no where else has to tell us we did a great job....we know that already.
  12.  
    Coconut Patty rocks.
    • CommentAuthordivvi*
    • CommentTimeAug 10th 2012
     
    thats excellent news coco! things never tend to stay on the down. we are all on a ferris wheel that keeps turning. one day good one day good one bad, one good 2 bad.. grin
    hang in there coconut patty!
    divvi
  13.  
    OH MY GOD!!!!!!! I HAD NO IDEA ABOUT HIS TEETH!!!

    (and first off thanks for all your love)

    I just got back from taking him to the dentist, to have a loose tooth pulled. Then dentist let me sit in with him and hold his hand.

    He had a MESS in his mouth. Broken crown, teeth that were cracked and broken and the dentist could not believe all that had happened since his last visit less than two years ago.

    He could not even comprehend how he had knocked out a bridge. Oh I did not know, taking care of his teeth is the only job I have not done! He does brush but I kind of knew, not a good job.
    And he never tells me when he has pain, even after his falls he never says he is sore.

    He cried on the way home. I cried in the dentist office. And now, I am more determined than ever to have what is left of his life have some happiness. The dentist said that there is no use really trying to save his teeth, more will have to come out soon they are just deteriorating. However he did ask me to please do the brushing for him. He did a quick clean job as the tartar was so horrid. (and did not charge for that, he is a lovely caring country dentist)

    It just makes me see how far along he really is.

    And I still remain Coconut Patty, and your friend. (aka Poop Princess too) please I know you are all jealous.
    • CommentAuthorabby* 6/12
    • CommentTimeAug 10th 2012
     
    Dear Coco,

    Good news on the market situation!

    I would love to have back a dime for every dollar my husband spent on his teeth. Professional orthodontics in his youth, he was left with a gorgeous smile and didn't have to do much other than whitening which I didn't think he needed but it was not my call.

    However, after years of generic dilantin for his seizure disorder he developed periodontal problems. He had these treated, and then it got better when he stopped that med. Dental specialists wanted him to have this and that done. About 18 months ago now, I finally said no. To what end?

    Your dentist sounds humane!

    As always, sending you best wishes.
  14.  
    Coco--Let us know the details about your Etsy sales, I would love to buy your candy!

    I have been cleaning Steve's teeth since Jan. every day with a little product called "The Doctor's Brushpicks". I get them at Walgreen's and the dentist says his teeth now look great--you just stick the little brush in between each tooth at the gumline. The dental hygiene at the ALF is poor and Steve is prone to gum disease if he doesn't have good mouth care. It's no big deal to do it, and I joke with him that I'm going to dental school and going to make a lot of money (a retired CPA--making a lot of money always brings his smile). You can do it.
    • CommentAuthorLFL
    • CommentTimeAug 11th 2012
     
    Me too Coco-let me know about your Etsy page-I'd love to taste such fresh coconut! Thank god your dentist is kind and humane. When I took DH to have his teeth cleaned the dentist told me he needed 2 root canals (didn't clean his teeth). Had the root canals done for $3500. The dentist then approached me and told me DH needed periodontal work done - about $3000-$4000 and it needed to be done right away. I told him we needed to waith a month when the dental benefits would begin again so we could afford it. He brought me into his office and told me that I was putting my husband's life in danger by not treating the gum disease immediately and that I would need to sign a waiver saying that I refused dental care. Needless to say, he no longer has our business.
  15.  
    Judith, who on earth would you offend?