Not signed in (Sign In)

Vanilla 1.1.2 is a product of Lussumo. More Information: Documentation, Community Support.

    • CommentAuthorOcallie36
    • CommentTimeSep 5th 2013
     
    I've been watching the today show for the Alzheimer news. Today was our old friend Jim. He's amazing. After the tragedy he lived through, he has the most wonderful and uplifting attitude. He's still giving himself to Alzheimer's still in a helpful caring way. He's in a group helping others cope. It was great to see him. He's quite a guy! Thanks for all you do Jim.
    Carol
  1.  
    I wonder if that's available online...I will check.
  2.  
    Here you go:
    http://www.nbcnews.com/health/alzheimers-extracts-high-price-caregivers-too-8C11070658
  3.  
    I watched the feed on the internet. I am so amazed at the grace that Jim displays when he answers Maria's questions. I know that it must be painful to answer the questions, but he is concise in his answers. My hat is off to you Jim.
    • CommentAuthorWolf
    • CommentTimeSep 5th 2013
     
    Two thumbs up Jim! Well done! Maria turned more to the message we want out and you influenced that a great deal I have little doubt.

    Thanks Emily for the link.
    • CommentAuthorLFL
    • CommentTimeSep 5th 2013
     
    Posted under Maria Shriver on Today/NBC Nightly News Thread

    I saw Jim's interview this morning and was pleased that they appeared to let him tell the story as we know it. Nothing sugar coated and you could tell that everyone was disturbed by it. Maria did ask Jim's support group leader if his story is unusual (meaning the fact that his father took such extreme action) and she said yes, that she' has never known anyone to do that before.

    Jim as always was articulate, told his story with honesty and grace. He mentioned the cost of care ($6000/mo) and said he didn't know how anyone could afford that. He represented our issues well...his wife was an RN (well educated), in her 50's when diagnosed (younger onset), that as a caregiver he had to bathe her, etc each day before work (caregiver stress) and the costs of the disease.

    Thank you JIm for telling your very compelling story and trying to educate the public. We are lucky to have you as a forum member.
  4.  
    I think it is an American tragedy that this happened. A double murder and a suicide should not be the solution.
    • CommentAuthordivvi*
    • CommentTimeSep 5th 2013 edited
     
    since we are able to express our personal viewpoints here without judgement, I was one of the ones who was disturbed by this interview. and I believe the general substance of the interview does help to shed the light to the overwhelming losses we as caregivers are subjected to, and the need for more funding to find a cure. but I found the lack of empathy for such a tragedy disturbing in my own personal opinion.
  5.  
    Thank you for posting te URL. Divi, I doubt there is a single viewer who was not disturbed by the interview from a myriad of different levels
    • CommentAuthormary22033
    • CommentTimeSep 5th 2013
     
    Excellent job, Jim! Very impressed at how much you got across in very little time. Thank you for publicly sharing your very personal story and helping to educate the masses.
  6.  
    Jim, You are an excellent ambassador for this cause...three cheers for you...
  7.  
    Just great Jim to see you, and hear your story, mahalo thank you!
    •  
      CommentAuthorm-mman*
    • CommentTimeSep 6th 2013 edited
     
    Thank you for all your support.
    I do believe that the first Today Show segment about how little activism there is in the AD world is the most important point.

    WE all know about the AD experience. However, not enough outsiders do. There is such a huge knowledge deficit and more myths and misunderstandings than can even be counted. There is so much that needs to be told. So much that people need to learn. This is one of the limits of the entire series. Not enough time to tell it all.

    As much as I tried I dont think Maria ever really "got" that spouse AD is very different from parent AD. This bias of course come from her own experiences. As we all know this spouse experience has to be experienced first hand.

    The statements that Maria made at the end of my segment about the stresses of (direct) caregiving I feel were also unknown to her and she was not speaking from personal experience. Yes, her father had it, but their bank account was not drained because of it. She never lost a day of work because of it, etc.
    Personally I did not have to experience the AD poverty that many of you here are enduring. My story ended before that happened.

    The life experience that AD gives a person is as intense and as varied and as unique as parenting. Every parent's story is the same and yet each story is completely different. And each parent's life is changed in their own way.

    My story attracts attention and as people imagine it happening in their own life they become sacred by it and erect defense mechanisms. these defense mechanisms limited how much information about living an AD life could be presented. I tried to give NBC as much material as I could knowing they would edit it as they wanted.

    Was there more I hoped would be told? Absolutely!
    Did they reveal as much as they wanted to? As much as they had time for? Yes, that is how the media works. . . .

    In the end, Maria's week of exposure is a good thing. Awareness is the FIRST thing to bring attention to a problem. I think awareness was raised this week. It then becomes more of our responsibility to continue the momentum. TRUE that 99.9% of the readers of this board are much too busy providing AD care to do anything else. But I would ask that each of us consider doing whatever we can to attract further attention and awareness. One possible way to do this is simply 'revealing the diagnosis'.

    The more people there are who openly tell others (close family and the general public) that "they" are dealing with AD, the less shame there is. The more people who speak openly about AD the more times there will be members of the general public who 'know' somebody who has it and then AD will be recognized as the larger problem that we all know it is.

    When my wife would cry or scream in the market I never apologized, rather I took the opportunity to tell whoever was around me that this was (typical) AD behavior. I felt I was educating people that AD is much more than just forgetting. This may have worked as some of the clerks in the markets have asked about my wife now that she is gone. And I give them more information about AD.

    Now that my direct caregiving is over I feel a need to become more involved in activism and disease politics. Exactly HOW I can best do this I dont know yet, but I do feel that is my next job.
    • CommentAuthorWolf
    • CommentTimeSep 6th 2013
     
    Those are good points Jim but don't lose sight of the one person who still needs to come out of all this in a reasonable state - you. Activism can be both a cause and a deflection where it serves a good purpose right now as either or both.

    It's taken me time to assimilate a bit more of your perspective from the outside where I asked you to consider alternative motives; but, as I've listened it's become clearer to me that your interpretation of your father's motive is likely correct.

    Seeing you build the house so that you could care for her and tying that into the $6,000 per month which I can't afford either, and then understanding your father knowing that at that time he was taking a real burden off you by watching Rita - knowing he couldn't keep it up because he could feel it all slipping away. He saw his own wife's pain increasing and knew he was now going to turn both into another burden on you instead of being a help and he took a drastic action.

    I don't raise this as a discussion point here. I'm saying I thought about it this morning and see it in the same light as you do. I don't care how strong you are or how rational you are - these events must have traumatic effects.

    Along with the activism, is there any theraputic thing for yourself you can do that might bring some peace of mind and calm for a while? This simply must be a massive shock to you inside somewhere and the loss of your family is also a physical and mental shock. The reality being alone is a shock we all go through.

    In all this what I don't hear and wish I heard something about is what you are doing to help yourself recover from these shocks or at least making it all more bearable. Activisim about dementia is important in our society today. It can also be a part of some healing solution. I wish you success in finding ways to find a new path for yourself which is something all of us face as part of facing dementia.

    You used your experience to try and send the message we all agree is so important and got Maria Shriver to talk about it on NBC news. Kudos. We're actually more concerned with Jim though and how he's feeling.
    •  
      CommentAuthorm-mman*
    • CommentTimeSep 6th 2013 edited
     
    Thank you Wolf,
    I am glad that you understand it better now. There were so many other little stresses that surfaced in just the week before the event that you dont know about (but I would be happy to share with you) that help ME understand why my father decided that the time was now. This is why I was not as shocked or surprised the day it happened as an outsider would expect.

    I did have to learn all the little details of the event as a mechanism of understanding what my father was thinking but now I am perfectly at rest with it all. (thanks again, Judith)

    MY problems? Really it is just normal grieving. Yes, I have cried A LOT(!) but I recognize that much of it was because I have to cry for three people.
    There has been a lot of break through crying when I get a memory in my head or I get in a situation that reminds me of one of them individually.
    I DO miss all of them together and each of them individually. AND I expect (and HOPE) that I always will miss them.


    It has been 4 months now and my time has been taken up with a lot of business related to the estate. <sigh> I have learned so much about Trusts and estates . . . <sigh again>

    Three dead people means that there is no end to the signatures and the forms and the notarizations. So many pensions, and banks and insurance and Retirement accounts and 'benefit specialists' to deal with. Some of these folks have been nice, some have not.
    Some creditors may not see checks sent to them to cover the final bills solely because of how their representatives treated me I have learned that a trust is not a probate ;-)

    I made a very special effort to remove EVERYTHING from my father's garage. He was an accumulator and there is a lot! Much of it should probably be just disposed of, however I am carefully sorting it all and attempting to use/retain as much as I can as a mechanism of honoring him. In many little ways I am making a special effort to respect and honor him. This has all taken up much time however. But I know that what I do now will stay with me for the rest of my life. I dont what to go into my future with any regrets!

    I sold my parent's house and rolled the funds into refinancing my house.
    Yes, I began a refi a month and a half after the deaths. . . . . (again more paperwork!)


    I am still working full time so I have been busy there (which has been a good thing) but as it all dies down I will admit that loneliness is now creeping in. OK, I have felt lonely for awhile now.
    Long story short 55 years old and I have never lived alone, ever. So THIS is a new experience. But like everything else I will analyze what I am feeling and adapt to it. I WILL BE OK!

    I did go to E-harmony just to learn how it works and how much it costs. I did not sign up but I did read about 'safe dating'. One of the tips listed on their site to possibly detect whether somebody is not being honest is if they say they are "Recently Widowed" you should steer clear <gasp!> I guess that counts me out . . . .

    Anyway I thank my analytical side for taking over and doing the work while my emotional side kicked back and popped up only occasionally as it has healed. I dont know how I would have reacted if the event had been truly 'tragic'.
    Jim
    • CommentAuthorAliM
    • CommentTimeSep 6th 2013
     
    Thank you Jim for taking the time to do the interview. You were realistic and honest about the burden of dementia at an early stage. No one understands if they haven't been through or are going through the agony of being fully responsible for a dementia patient with mid life dx. I understand your reaction to your life altering event and I must tell you that I agree. Just as each dementia patient is different so are each caregivers feelings different. I do hope you find happiness again.
    •  
      CommentAuthormary75*
    • CommentTimeSep 7th 2013
     
    Thank you, Jim, for your honesty of how you are doing. Like Wolf, I, too, have been holding you in my thoughts and heart. Sending you love.
    • CommentAuthorLFL
    • CommentTimeSep 7th 2013
     
    Jim, thanks again for your honesty an yes, bravery. I too keep you in my thoughts and hope you are doing the best given your unusual circumstances. I agree with bluedaze, it is an American tragedy and the public should be horrified that the stress of caregiving for someone with dementia and other chronic illness could result in 3 deaths.

    Jim I know and respect your belief that your father did it with love. Only you could truly know your dad's intentions.

    I too tell anyone nearby that when my husband acts out in pubic (like he did yesterday) that he has dementia and the behaviors are part of the disease. They seem surprised. They think it's only memory loss.
    • CommentAuthorAmber
    • CommentTimeSep 7th 2013
     
    Thank you Jim for getting the message out and yes when ever possible I try to teach about this disease as other members here do but you start to talk and you can see the person's eyes glaze over and as soon as they can they change the subject or walk away. I'm afraid our society is such a ME society if it doesn't directly affect them then not interested.
  8.  
    I believe it has to start with the medical professionals. Until they get some insight into what happens to both the patient and caregiver, nothing is going to happen. Sure, we can do it one-on-one - but that isn't going to cut it. We all need good advice, good help and compassion from the moment (or before) of DX. Until that happens, not much will change. Just my opinion.