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"Humans are not machines – we are something more. We have feelings and experiences. Material comforts are not sufficient to satisfy us. We need something deeper – human affection." Dalai Lama

For many people healthcare is mainly considered to be the ability to keep the body functioning properly. I have family and friends trying to keep diabetes under control. My mother is dealing with a bad heart. People I know are dealing with cancer. I worked for several years getting kidney dialysis supplies to patients. We look to our doctors and health care system to keep our bodies alive and working properly. Our healthcare system will pay for flu shots. They will pay for operations to repair the body.

Where we fall down though is trying to fix the mind. I have an Aunt suffering from Alzheimer’s. If she had cancer her insurance would pay for the cancer drugs but they don’t pay for her help in trying to live day-to-day with her mind affected. The State would help pay for her caregivers only if she had less then $2,000.00 to her name.

My nephew turned 13 yesterday. He is a highly intelligent boy and a real geek. He got a robot kit and was excitedly telling me how he was going to program it. He received my Irish dragon picture and declared it "awesome." He also suffers from Asperger’s Syndrome. For him life is a daily struggle with an extremely intelligent mind that doesn’t function well in social situations. I saw the mood swings in the conversation we had on his birthday. My niece struggled and fought for years to try and get an indifferent medical system to correctly diagnosis her son.

I worked for six years with a woman who had a Down’s Syndrome son. He was one of the sweetest young men you would ever want to meet. She worries about him because he is in his twenties now and she knows that her older daughters will be facing having to take care of him when she and her husband go. It is hard for her to find the help she needs for him.

If we are to truly reform healthcare then we need to reform our care of those suffering not only in body but in mind as well. We need to make it easier for caregivers. We must provide the resources to help care for patient’s with Alzheimer’s. A close friend of mine, my art mentor, recently wrote to me to tell me about caring for his mother who passed away after suffering from Alzheimer’s. The anguish for caring for someone you love and the pain of them not even knowing who you are is unbelievable. My brother’s tell me of the same anguish of dealing with my Aunt.

I know the toll that taking care of her son has had for my niece. She has two other children to care for. I feel the same anguish as he is my godson and in many ways he is my grandson too. We are close. He shares a love of all things geek and fantasy and dragons. We bonded from the start. There is a real pain in hearing him feel hurt. I worry about him.

It is time that we start giving the mind the same healthcare that we give the body. It is time we give caregivers the help they need to care for loved ones. It is one of the most difficult jobs in the world caring for someone you love. I help care for my Mom. She is still able to get around and do most things for herself but I see her body failing. Her arthritis won’t let her do many things with her hands and I open jars and turn keys and do what I can to help. I call her from work every day to make sure she is okay. I do all her shopping for her. Like many caregivers I am aware of what she did for me and I want to care for her. But as my brothers and sister-in-law know in caring for our Aunt and as my niece and her husband know in caring for her son, there is an emotional toll on us as well.

As Congress goes forward with plans to reform healthcare we need to make sure that they understand that it isn’t only a healthy body that is important. You have to care for the mind also. You have to care for the caregivers.

Originally posted to michelewln on Sun Feb 22, 2009 at 08:24 AM PST.

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Comment Preferences

  •  This is such a multi-faceted issue (1+ / 0-)
    Recommended by:

    from a traditional political point of view.

    But from an empathic point of view, the path forward is clear.

    •  Spruce:not that complicated:caregivers paid by (0+ / 0-)

      government (sliding scale by Medicare recipient and in full for Medicaid) is MUCH CHEAPER than the nursing home situation now.  Please see ADAPT:
      on the CCA Community Choice Act.  There were 100 sponsors of the bill in Congress last session; hopefully, we can all get it passed this congress session.

  •  Care is so important (2+ / 0-)
    Recommended by:
    ladybug53, Spruce

    And will be even more important as numbers of elderly increase. It is and will be very difficult to give every sick and elderly the care they need and deserve.

    Alzenheimer is one especially cruel diseae.

    Great to hear you take care of your mother. Care from family is usually the best, I think.

  •  caregiver issue is for all disabilities and elder (1+ / 0-)
    Recommended by:

    individuals.  There's one man between me and ????

    Medicare does not pay for attendant care for people who are living at home with chronic conditions, medicaid does, as the diary indicates in re the aunt with Alzheimer's.  But it's limited,too,as the diary shows.

    There is an activist group helping to fix this disparity, giving folks a choice of attendant care at home or living in a much more expensive situation, the nursing home (there are all kinds of euphemisms
    :long term care facility). ADAPT has CCA Community Choice Act legislation, that's been proposed for over ten years, each Congress.  Last Congress had over 100 cosponsors for the bill.  You can check out if your House of Rep. members and Senators support the bill by checking list, or calling/writing your Congressmember to support it. Disabled people (all kinds of disabilities, physical and mental) and seniors will have a choice to live at home with aides, or in a "facility".

    There are people living in nursing homes who DO NOT need to be there, people who do not need medical care 'round the clock,daily, who could live at home with help.

    If something happens to my spouse, I'd like to be able to continue living in my apartment, with attendant care.
    And, yes, I've emailed that to Melody Barnes, the President's point person for that.

    For ADAPT

    My aunt died of Alzheimer's in a charity nursing home, a few days after Ronald Reagan died at home.  

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