I Need You

Do not ask me to remember,
Don’t try to make me understand,
Let me rest and know you’re with me,
Kiss my cheek and hold my hand.

I’m confused beyond your concept,
I am sad and sick and lost.
All I know is that I need you
To be with me at all cost.

Do not lose your patience with me,
Do not scold or curse or cry.
I can’t help the way I’m acting,
Can’t be different though I try.

Just remember that I need you,
That the best of me is gone,
Please don’t fail to stand beside me,
Love me ’til my life is done.

– Author Unknown

88 comments

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  1. Imsong Lee says:

    JAB:

    I like the poem: “I need you”
    It sounds like my wife if she could say it.
    Thanks for sharing.

    Imsong

  2. 365andMe says:

    “The BIG Brain Puzzle Book”, by Terry Stickels, is a puzzlers’ delight. It has three levels of difficulty with seven different types of puzzles. The types are; creative thinking (thinking outside the box), mathematics (computational skills), logic (analysis and deduction), language (definitions, usage, and sentence structure), visual (observation, spatial reasoning and pattern recognition), wordplay (word and letter manipulation), and knowledge (book smarts and memory).

    The book’s cover says “over 200 puzzles that make you think,” and that it does! Also, the book comes with the answers and many of the answers have brief explanations, so you can understand how to solve them. This really comes in handy when you go to level 2. I am not a big puzzler, with cryptograms being my favorite, but some of these I have not seen before. Others were new takes on old style puzzles.

    “BIG brain” is an enjoyable, thought provoking, and mentally exercising book. Lots of these puzzles took time for me and that was only Level 1. This book is sponsored by the Alzheimer’s association and includes the ten signs to be aware of and where to get more information. This was a most enjoyable way to spend time exercising the mental muscles.

    1. AlzCarer says:

      “This book is sponsored by the Alzheimer’s association”

      I checked up on that ;) and ’tis true:

      http://www.alz.org/we_can_help_puzzlebook.asp

  3. Lin Cochran says:

    You and Bob DeMarco are my heroes, teachers, and guides.

    Thanks for your work.

  4. Lin Cochran says:

    JAB, I hope you don’t mind…I put your blog down as one I follow

    LCB

    1. AlzCarer says:

      Mind? Lin, if I help in the least little bit, I’m very glad to hear it. (((((Hugs))))), dear lady.

  5. Yuonne Denos says:

    Wow that was odd. I just wrote an extremely long comment on http://www.alzcompend.info but after I clicked submit my comment didn’t appear. Grrrr… well I’m not writing all that over again. Anyway, just wanted to say fantastic blog!

  6. Teppie says:

    I left AlzCon. I don’t agree with censorship. I always found your info helpful. So here I am.

    Stephanie M

  7. Stephanie Zeman says:

    JAB just read your last note on Alzconnected I haven’t been there long enough to realize how much information you have amassed and shared over the years. You have a right to be angry and will be sorely missed by the families on the forum. Glad you have your blog to help you continue with your work. Please use my e-mail to keep in touch. You are an incredible person and I wish you well. I’ll keep you and your husband in my prayers.
    Stephanie

  8. Sue says:

    JAB, I have lurked on the AlzCon site for over two years. I learned soooooo much from that board. My mother passed this past Aug. 2011 but I still go to the boards from time to time. I guess I still need that connection. I just hate the changes that have happened to the boards. The closeness is just not there anymore. Thank you for all your help to me and all the others on the board. Is there anyway you can set up a message board on your site here? It is probably not feasible because I know your plate is full but it’s a thought. :-) I will follow your blog. Again thanks. Sue

  9. Lurk says:

    I have missed you for awhile on the other board. People would write in their questions, and I would write a brief response and not be able to wait to see what you had to say. Their loss. I’m glad you’re not lost forever–wouldn’t want to come to SD and track you down.

  10. heidi says:

    Jab
    love this poem oh so true I cry with my Husbandsincontencise issues nad not feeling whenhis diaper is wet, so true I do cry for I donot want to see him go toa cather buthe might ,butyes so true. GadI bookmarked this page come here more foten than the alz connect now too.Iknow yuo had aweath ofinf too that you shared withme nad Ihave copied some of thelinks down in my oldcomputer thatcrashed nadburned causeit needed moreramnow have this siet bookmarked too to followyou too heidi

  11. Ken Garrett says:

    JAB
    I suspect my comments in ALZCom in your “departure” thread was as much an act of defiance toward ALZCom as it was to also keep a connect with you. I am in my 8th year of Caregiving my wife, Jane, 5 at home, and 3 years in a Care Home, alone. My Jane is Stage 7. Plus I have been through all the legals (and still am).

    I suspect my defiance toward ALZCom has shown thru as ALZCom changed my password from time to time without notifying me. Perhaps a silent message? But one-upsmanship does not get my attention as much as responsible assistance to those who are need within the Caregiving-Dementia world.

    I was chatting with a very old friend in Chicago (I am on the West Coast) this morning via phone and she is learning as her husband graduates to a new Dementia level. From her description of his daily activities I suspect he is lingering around Stage 3 or 4. But I left my friend with the word to “not go it alone”; for I could tell by her settled demeanor the Devil has knocked on her door as yet.

    Ken

  12. Susan M says:

    Thank goodness I found you. So sorry about the other, but I will be coming here more often. We have friends with family diagnosed with AD, and others in my family showing signs. So far we have dealt with 6 family members with the disease, so AD is always on my mind.

    Thank you for your blog and your research. You are needed.

  13. Nicole (Nikki J) says:

    I am constantly in awe of your incredible work in disseminating knowledge to your fellow caregivers. You have without a doubt improved the lives of countless patients and caregivers.

    Wishing you and your husband peace comfort and strength.

    Thank you for all you have done and are doing.
    Love
    Nicole

  14. leah Friday says:

    jab: i lost my mother sometime ago, but while i was caring for her, your posts on the “old alzheimers site” were precious information to me. i had a feeling that things would blow up with the new administratiion. in my experience, it is probably a bunch of well-educated 20-30 yrs old kids who believe they know what is best (without any experience of their own) for everyone.

    you are well respected, and i love your presentation style–gentle and to the point. Please don’t let those young turks get you down…

  15. Dazed says:

    Jab/Sunshyne, I appreciate you so much. Wherever you post, I’ll try to find you. You’ve been such a wonderful help to me.

  16. Judith says:

    Great site but I would not expect less!!! Thanks for the heads up to all.

  17. Anna says:

    JAB, I’ve been a ‘lurker’ on alz.org since last April when my mom moved in with us. She was diagnosed with Alzheimer’s disease. I was going to become a member of alz.org today to add my voice to the choir of people who hate what the new forum has become and to let them know that their actions are now destroying what little bit remains of their once truly helpful boards. I decided they are not worth my time or effort.

    As if it weren’t bad enough to have lost the urls to all of the original posts I had scoured through and bookmarked so many times over this past year, they have now become the pc speech police and are shredding what’s left of the valuable information we so desperately need. I can’t take anymore either and have been looking for a new forum for the past few days.

    But before I move on, I want to take a moment to thank you from the bottom of my heart for all of the work you have done and all of the help you so generously gave to me. Even though I am just one of the ‘lurkers’ there are thousands and thousands of others who benefitted so very much from all of the information you shared with us. JAB, you will never know how many, many lives you have touched or how many people out there consider your posts absolute blessings.

    To lose such caring, giving, and truly inspirational people such as yourself, Zolly (Ken), and all of the others from the old boards that I have come to respect and look to for answers and help in this struggle, is like being kicked when we are already down. It hurts.

    Thank you so much for just being you. I know God will bless you greatly for all you have done and continue to do. I’ve bookmarked you here and will come back to read often. :)

    Sincerely,
    Anna in Missouri

  18. Karen (*Cowgirl*) says:

    Hi JAB,

    I had been off AlzCon for a while so was shocked to learn that you and so many other have left. I don’t like the Nazi admin situation or the sloppy IT on the new site and was thinking of leaving since early January, I will now be reading your blog regularly to continue to learn from your experience and the information you continue to share.

    I’m a secondary caregiver (2,000 miles away) but support my sister who lives with my dad as much as I can. She isn’t into the reading stuff so I pass on a lot of the information I find.

    Thank you so much for all you have done and continue to do!!

    Karen

  19. Iris L. says:

    I’m glad I found you, JAB! You made the only reasonable decision available to you after what ALZCon did to you. They were quick to post and defend their actions towards you but they have done nothing to correct the issues with the new board. I’ll find a way to direct new members to this site.

    JAB, I thanked you on the other board but let me repeat myself. Thank you from the bottom of my heart for your advice and support over the three years I have known you. You are a wonderful caring person! I wish only the best for you and your dear husband.

    Iris L.

  20. madamme says:

    Oh my dear girl..a hurricane is moving through the site since your departure….its a shame that once again that what seems to be youthful ignorance has held sway over common sense and compassion.
    I wanted to thank you again for all your help, kindness and compassion during the time we shared on the forum. I shall be advising all that I know to check your blog for any information that the need…

    My very best to you dear lady—
    and as we say so often..many soft hugs to you…
    {{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}-Mel

  21. Judy says:

    I’ve left alz.org also–I can’t stand the board now with its Connection section, its glitches and now its censorship. The worst part is that daily people are losing their LOs to this disease and aren’t getting the support or response they need because the board itself is broken and is driving everyone away.

    I continued to read there because mom’s in stage 7 and I needed to see there were others out there who know how hard this journey is.

    I’m sorry it came to us all having to leave, but the organization obviously doesn’t understand the people it’s supposed to serve, and especially doesn’t understand the posters who have dementia and who cannot tolerate daily changes in the functioning of the board.

  22. Tracy (younghope1) says:

    JAB, I am so sorry about what has happened, you are such an asset to the group. Please stay connected with those of us that need you and I think that number to be many. Feel free to e-mail me anytime.

  23. KML says:

    JAB:

    I made it over. I posted a reply to your post, Good Bye. I’m glad there is still a way to get in touch with you. I plan on staying in touch. Thanks for all you’ve done for all of us. The new board is just so difficult to maneuver. We don’t want fancy, we need straightforward. I’m concerned for the population of users who desperately need that board, it’s just a shame it’s so user unfriendly.

    I’ll pop in here from time to time. You’ve been very generous to all of us and I thank you from the bottom of my heart.

    1. Petr says:

      Hey Everyone,Please check out and support a new short film about Alzheimer’s!!! Eye of the Beholder’ is detacided to all the people who are affected by this debilitating disease: To those who forget, and to those who are forgotten.It will be used as a marketing tool after it’s film festival run in 2012.But it needs YOUR help Please visit indiegogo . com / eye-of-the-beholder to support

  24. mymom says:

    They’ve really made a serious goof this time letting you leave, JAB.
    There have been major blow-ups in the past with an exodus of members, but I don’t think they will recover this time with the massive changes that are horrible.

    I do remember in 2007 when a group went over to ADcaregiver.com and remained a family there until over time their LOs passed on. The site has since died but for a few spammers.

    I happened upon these pictures of better days when AA was more like family. “GLO” was greeting cards for our loved ones.

    http://www.jeremyborum.com/AlzForum/MemoryWalkPhotos.html

    I’m glad Jezza has let this remain online and that he allows it to stay. Still makes me smile..

    Hope a new forum is found for everyone.

    1. AlzCarer says:

      Thanks for the link, mymom. I’m sure those pictures will make everyone smile. They sure did me.

  25. Kim Bledsoe says:

    Hey JAB, hope you are well. Glad to find you..now I don’t have to miss you so much! YAY!

  26. jan says:

    JAB, just went to the alz site and in amazement you’re leaving again. Well I’ve tried to log onto the site for weeks now and you posted about Firefox issues, which I have now. Understand why I can’t log on. Then when I saw your posting, I was disgusted that this organization can be so flipant on people. Horrible way to conduct business.

    Since I can’t log-back on to their site and no one is responding to my question, I’ll happily follow you over here. You”ve been so informative, that definitely worth a change over.

    Things happen for a reason, so I’m here now.,…

    Jazzy1

  27. frank bick says:

    JAB I have been away from the message boards for a few weeks and returned to find out that you said goodbye. First I understand your frustration but foremost I have received much good information from your previous posts and I would not want to lose contact with you especially as I continue down the caregiver road. I would like to know the best way to stay in touch. I am not a blog person so I dont know how to join your group. How do I participate. Also can I contact you via email. Thanks, Frank. I used to post as FJB.

  28. Judy says:

    If anyone wants, we can get the http://www.adcaregiver.com site active again. It’s still there—I posted an update on my own LO there and if we can get some people posting, more will come.

    I’m not sure how Aitan’s LO (the owner of the board) is, because he hasn’t posted in a long time, but the board’s still there, so let’s use it. JAB, you are welcome to come and post your information there!

    1. AlzCarer says:

      Hi, Judy. Thanks for the invitation. I’m talking with a few other members about whether to join one of the other boards that are out there … most of them seem to be pretty dead. Others have suggested that I start one here, and I could, apparently, do that for free … well, other than the headache of trying to figure out the phpBB software. Trying to decide what to do…

      1. Judy says:

        Starting a board right here would be great too–and you could arrange the “sticky” information you and others have in a way you like.

        Just know that there are many of us who haven’t posted over at the AA board who feel the same way about the issues as you–I just haven’t bothered posting a complaint over there because I feel they don’t really care.

  29. karen says:

    Hi Jab,

    Was just looking in on the other board and couldn’t get over the changes…
    I was only on the old board for a short time (May2011) my mom passed in June 2011. I remember being up all night reading your posts and all the other older posters and trying to soak up as much info as possible, your posts and links were so helpful to me as I was going thru this alone with my mom. I felt like I wasn’t alone. Sorry you are/were going thru this and thank you for all you did on the old board….

  30. lola says:

    We miss you JAB, but we soldier on, helping newbies in panics… We really do miss you!

    1. AlzCarer says:

      It’s a very sad situation. I do wish senior management would come to their senses. Bless all of you who are helping other caregivers and loved ones.

  31. Karen (*Cowgirl*) says:

    Hi everyone, hercules posted a link to another caregivers forum that is wonderful. It’s very much like the old Alz forum, caring, helpful, respectful, informational, and most of all very easy to navigate. Not all the caregivers deal with Alz but it seems most do. I’ve joined it and feel very much at home. It’s not just a forum but also has helpful links and info attached.

    If you’re interested, the site is National Family Caregivers Association. The link is:
    http://www.thefamilycaregiver.org/

    Karen

    p.s. AlphaLeah leaving and the forum admins deleting and/or modifying members’ posts was way too much, I don’t even want to lurk there anymore.

  32. elena-{heart} says:

    Happy to have found you JAB. Missing your posts filled with helpful information.

  33. Carolyn Belz says:

    I truly miss the old site, and I resent the sudden change to my password. I’ll continue to touch base here. My husband is now 80. Think the AD was in evidence by 2005. Now he’s mostly sleeping and not eating. I’ve worked through all the stages of grieving, but this is so hard. Keep me in your thoughts, too.

    1. AlzCarer says:

      You are in my thoughts and prayers. (((((hugs)))))

  34. folly says:

    I admire you for leaving alzcon rather than abandoning your principles. You were a shining light there. I suspect admin stands for arbitrary decision making is noxious. It’s good you can soldier on at your own site.

  35. Geege says:

    Karen, I was also admonished by the admin at alzcon for defending someone when a nasty little man attacked. Mom has declined in the past month and I feel extremely alone now when I have so many questions, but I won’t go back to the other site, because of admins ‘parenting skills’. I would reads posts over there from poster who are so admired and have so many AHA moments and now they’re gone. I just wanted to say goodbye and thank all of you who have helped me.

    1. AlzCarer says:

      Geege, this isn’t the place to say “goodbye” … this is a place to say “hello”. I’m so sorry Admin did that — I’ve gotten my knuckles rapped a lot of times, and I know how it feels. Please feel free to email for any reason: AlzCarer at gmail dot com

      When I find time (sigh), I’ll be looking into setting up a forum here. I know the software is available and supported by my web host, I’m just not at all sure about the mechanics.

  36. folly says:

    Yaaay! Go for it.

  37. SuperWoman says:

    Hey there, JAB!

    First, let me commend you for an excellent site! Well written articles and a great way for everyone to post and share. I’m going to recommend it to those who are sharing this walk with us!

    I hope life is going well for you! Husband and I continue to build our new life. I am 2 years out now and the oncologist says tests look great! I’m attending college and continue to advocate for our Alz loved one.

    Please know that I think of you often and miss our occasional glass of Merlot.

    Warmest Regards,
    SuperWoman

  38. JJ says:

    Nice to be here — I used the screen name Soledad at the ALZ site. Never really liked that name so I´m changing it. And I´m done with the new forum that drove JAB away — glad to see some names that I recognize here! If there´s another discussion board you all have found, I would love to know about it. I haven´t had much luck so far and this isn´t actually a discussion board, I know, so I´ll stop.

  39. John891 says:

    Hi Jab,

    I now understand why you left the board. I do not blame you. I used to go there for support and to give support. There was a comment I made to someone who really needed it and it was deleted. That was fishy. Then, I checked the city I live in. They inserted where I live. I guess there are ways they can find out. I remember clearly inserting a fake out of state zip code and not the city. I really value my privacy you know. I don’t care really. After all it’s evident by the numbers in my screen name. But still it is a violation in my opinion.

    I told them to please delete my account. I don’t want to give or receive advice there anymore. Unfortunately there doesn’t seem to be support anywhere, but there has to be so I’ll search elsewhere.

    They are more concerned about controlling what others say. It’s an ego thing for the new person in control. I wonder what his or her name is. lol It would be interesting to have a nice conversation with him/her hahahahaah (sarcasm)

    John

  40. Ken Garrett says:

    Hi JAB. As you noted I have been absent. Yes, I had to take my gardner in hand to teach some exciting techniques. But I shant forget you anymore JAB.

    Thru this current period I am working with a great, Elder Lawyer placing our Estate, (my Demented wife and I) into a Declaration of Trust. A true method of easing my mind, allowing me to know my wife will be cared for in a manner I have chosen while she is in her Care Facility If i pass before her.

    If my wife passes before me the Trust covers all the probate fees for our Estate which has alaready been past to me via the courts. Court date, Apr 25, 2012.

    JAB, Thanks for having me. Like a puppy finding a dry cardboard box on a porch during a rainy night. Bow WoW.

    1. AlzCarer says:

      Love you to pieces, Zolly.

  41. folly says:

    To zolly: good to see you here. Good puppy! It seems JAB has a soft spot for strays. I speak from experience.

  42. Ken Garrett says:

    In a few minutes I saddle up to go visit my wife, Jane, in her Care Facility. Whatever demeanor she offers I take it at the moment. No longer do I try to reach inside her and outguess her or wonder what she is thinking. However, at this curretn moment I feel a tinge of relief being able to post onto a Website that offers a sprinkle of joy.

    JAB, you are Wonder Women. Thanks for having us.

    All may note I do not use psuedos, but rather real names. I feel safe in JAB’s care.

    1. AlzCarer says:

      Zolly, I appreciate your trust. However, please understand that anyone can read what’s posted here. I can keep the bad guys from posting here, but cannot control what someone might do with information they’ve gleaned by reading what you write.

  43. Dazed says:

    Hope you’re still working on a forum here, Sunshyne! I check in regularly to see.

    1. AlzCarer says:

      I am. I’ve found some free software that is compatible with WordPress and — hypothetically — is pretty easy to set up. Got to get a few fracture cracks dealt with before I’ll have the time (or mental strength) to give it a try.

  44. Poll says:

    AWHILE BACK YOU DRIFTED FROM ME
    THE DISTANCE WAS ONE I COULD PAINFULLY SEE
    I REACHED OUT, BUT FATE URGED YOU TO FLEE
    I TRIED BUT FOUND MY REACH WAS REBUFFED
    MY LOVE WAS JUST NOT ENOUGH

    AND DURING YOUR LONG TRAVELS AWAY
    OUR TOGETHERNESS BEGAN TO SWAY
    I WAS LOSING YOU, AND IT WAS ROUGH
    MY LOVE WAS JUST NOT ENOUGH

    AND NOW THAT YOU ARE ALL BUT GONE
    I EXPECT MORE DISTANCING FURTHER ON
    I CAN NEVER BRING YOU BACK, I’ll WEEP ALONE
    FOR I KNOW DEAR WIFE, MY LOVE IS NOT ENOUGH.

  45. dolly says:

    Waves to Zolly, and all others! JAB, did you break something?

    Zolly, always remember, no privacy on the internet :)

    Yes, a lot of people have blogs on wordpress

  46. dolly says:

    Why doesn’t the old site have more info for newbies? Always seems like the same things are said over and over again – I get that, but how do you make it easier for folks?

  47. Hassan Neun says:

    Great information :)

  48. KML says:

    JAB:

    Just wanted to let you know my dad passed away last week on May 22, 2012. Everything happened very fast it seems. He has peace and is no longer suffering, but I still wonder how things could have changed so fast. That is tormenting me, but I have no choice but to accept it and find peace with it. I thought I would be prepared, but I wasn’t.

    Take care, JAB and I hope all is well and going as good as possible for you and your husband.

    Much love to you.

    1. AlzCarer says:

      I am so sorry to hear of your father’s passing. We are never prepared for the loss of someone we love as much as you loved him. The loved ones of several other friends — even some who were in the earlier stages — took a very sudden nose-dive and passed much more quickly than anyone expected. It often seems to happen that way in dementia patients. I think that the damage that is being done to the brain ends up doing far more damage to the body than we realize.

      Take care of yourself now, dearest KML. It will take time and patience for you to begin to heal. Sending you many soft (((((hugs)))) and the hope that you will soon be able to feel the presence of your parents watching over you with love and dropping gentle angel kisses on you.

  49. KML says:

    The brain is the CPU of the body. The damage to the brain affects the whole body. I saw this with my mom and I saw it with my father.

    I’m just at a loss right now, lots of empty space left, and a lot of feelings, guilt, sadness, anger. I’m going to have to follow up with some grief counseling.

    Take care, JAB, and thank you, again.

  50. cap says:

    I think we’re never prepared for any of the bad things that can happen in life :(

    Because of your advice here, my mom takes Huperzine A. Never bothered her. Exelon and Aricept did.

    All of a sudden, it seems to bother her at dinner, and not in the morning. 200 mcg 2 times a day. She has had C-diff, so could that antagonize things?

    Will the 200 mcg once a day still be good? She says it’s not pain, it’s not gas, it’s not cramping – how would one describe this pain? It does cause her pain for a few hours.

    Is it like too much coffee, hard on the stomach?

    She is just under 100 pounds, does that also matter? Thanks much.

    1. AlzCarer says:

      There is always a possibility that a loved one will develop a “chronic” side effect (associated with long-term use of a med) rather than an “acute” side effect (one that develops shortly after a medicine is started.)

      And yes, a person’s weight can affect the body’s response to a med, and may need to be considered when establishing the dose. She’s quite tiny, isn’t she! (But then, 200mcg x 2 per day is half the dose found to be beneficial, on average, in the US clinical trial. My husband takes 400mcg 2x a day now.)

      Certainly, you could try cutting back to a single dose a day and see how she does, and/or you could look for 100mcg tablets — I have seen them on the web.

      But … it strikes me as very strange that she would tolerate the morning dose, but not the evening dose. Which makes me wonder if there’s something else going on … maybe another med, or even some food or drink, that she’s given at lunch or in the afternoon that is bothering her. Orange juice, for example, can cause gastrointestinal distress. I love cottage cheese, but it doesn’t agree with me.

      Or, there may be a med that she’s given earlier in the day that’s starting to wear off by the evening. Or perhaps sitting up for an extended period of time is bothering her.

      So be prepared to have to look for another culprit if changing the amount of huperzine that you give her doesn’t help her feel better in the evening.

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