My New Life

 

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Jim at Family Camp in Aug. 2011

 

The following piece was originally written in 2011.  Jim was still working full time and I was still in shock. I am releasing it as I wrote it then and have not  updated the information.  Jim is no longer on Aricept. He is no longer working. I am no longer seeing a therapist on a regular basis, but know that I should. 

I am a little more removed from the anger stage and have come back around to wanting to help others and do more for families in the same or worse situation.  I am on a mission to educate and eradicate. That isn’t to say I am completely out of the anger stage, but I am working on it.

 

I am starting this blog based on a recommendation from my therapist but against my better judgement.  I am of the mindset that too many blogs, you tube videos, public/ private phone conversations and desires to be on the cover of a magazine or on a reality show are ruining our society.  But, I have a strong desire to help others in my situation and in some small way make a difference in the lives of others.  OK, that last one was just bullshit.  The old me would have wanted to help others.  I have always done that in lots of different ways.  I still do.  I just collected socks (114 pairs) in my son’s first grade class to send to Japan.  I collect plastic bags from his school to take to be recycled (over 50,000 bags in two years) . I helped a turtle cross the road this morning while on a walk. I used to be a staple at my local Hallmark store, dropping a minimum $100 a month to remind friends old and new how special they were/are/could be to me…but now it is me that is indulging in my own narcissistic blog.  Lord help us all.  I guess it is either this or blow my brains out.  Or live in a drunken stupor.  I’m not sure I would mind that last one, but the first one isn’t an option since I have two young kids,  7 and 10.  They are awesome.  But I have to say that because they came out of me and are part of me, right?  Don’t you hate when people brag constantly about their kids?  But, really, I think mine are pretty damn cool.

Where is my husband you might wonder?  He is here.  Sort of.  Well, on most days, he is here in body but I’m still wondering about the mind.  Right now he is out of town for work, but that really doesn’t matter.  It’s the same either way.  Actually, I am more relaxed and happier when he isn’t here which makes my stomach churn just writing and actually admitting.  How awful for me to put out there for the world to see and believe and read.  But it is true and I so wish it weren’t.

My husband of 14 years, a man that spent 23 years in the US Air Force, who got promoted above board (early), a man that would have the yard and house in order each Saturday before I ever even thought of crawling out of bed, the man that I was going to grow old with and love forever has Alzheimer’s Disease.  He is 49.  I am 41. I am unable to function any length of time without thinking about this, without worrying about my children, without fretting about finances and studies and drugs and supplements and thinking I just want to crawl into a hole and make it all go away.  For some reason, the hole doesn’t appear and I keep digging along trying to come up with a plan to stop the train wreck that is unfolding in my life. Consume.  That would be a good word to throw out there.  I am consumed with this but I am unable to discuss it with my husband, my children, my bosses, my neighbors and most of my friends.  There are a few friends that know, but I certainly can’t go into much detail on a daily basis or else they would quickly become my former friends.  My parents are retired and care and hate what I am and will be going through, but they have their own lives…cruises to go on, golf trips with friends to partake in, Red Sox games to watch and other grandkids to love and cherish and visit.  Besides, my husband isn’t too far gone yet so I don’t really need their help too much, YET.  I know it is coming and I’m sure they do too.  When I think too much about it I cry.  When I don’t cry I get really angry.  When I don’t get angry or cry, I get bitchy to my kids, my husband and my friends.  The shitty part is I don’t have any idea how long this will go on.  My husband is on aricept, a medicine for Alzheimer’s Disease.  It’s not helping.  At all.

I asked him yesterday what he wanted to do for Father’s Day.  He asked when it was.  I told him I thought it was June 18th or something like that.  He said, “no, what day of the week is it.”  Really.  Remember, USAF Senior Master Sargent…smart guy…doesn’t know Father’s Day is on a Sunday?  Lord, give me a cold beer and the strength to drink it quickly.  The bright spot in this conversation…there was a time (last month and beyond) that I would have gone off on him.  “What?  You don’t know that Father’s Day is on a Sunday?  Really?  Give me a @#$%^ break.  How can you not know this?  Mother’s Day, Easter, Father’s Day are always on a !@#$%  Sunday!  Thanksgiving is on a Thursday.”  And this tirade, I am not proud to say would have gone on for quite a few minutes.  Flash forward to yesterday.  I am a changed woman : “Sunday.  It is on a Sunday” and that was all I said.  Then we got off the phone and I cried into my beer and once again tried to determine how I was going to support my family financially, emotionally and physically in the years to come.

posted by Karen in Early Signs of Alzheimer's,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (3)

3 Responses to “My New Life”

  1. Stayce Bushart says:

    Karen, I am with you. My mother, not my husband, lived with me 4 months out of the year and had Lewy Body Dementia. She passed away peacefully on January 25, 2013, here at my home in Atlanta. I have a partner who works full time. I am retired. What do I have in common with you? I am raising through adoption my two grandsons, ages 7 and 10. I too, was a caregiver for people and add animals into that mix. I wanted to be perfect and be able to do it all. I discovered that was impossible while caring for two young children and a loved one who was being robbed of her personality and ability to care for herself. In the end, I was feeding Mother, changing her diaper, bathing her and washing her hair in bed and talking to her though she could no longer verbally respond to me. I felt guilty at times praying for God to take her, though I knew that is what she wanted because when she could talk, she had told me that many times. I attend a dementia support group and these people have become my family, friends, comforters and guides. I do not feel as alone as I once did. I encourage you to rely on friends who want to help. I encourage you to let your friends know what is going on. I encourage you to get a caregiver in your home for as often as you can afford. When it is time for Hospice, they are an incredible group who will wiggle their way into your heart as they comfort and care for you and your family. I live inside 285 in Atlanta. If I can assist you in any way, please call on me and I will do what I am able to do. My name is Stayce Bushart and my number is 404-556-7204. We, whose loved ones are ravaged by this disease must support each other.

  2. Ann King says:

    Dear Karen,
    Your story moves me to that awful place I never wanted, was not prepared for, but would do everything I did all all over again to care for my husband. My husband was diagnosed with Early Onset Alzheimer’s Disease in 1999. He had been presenting for easily 5-6 years before that, but who was looking for dementia in someone so young? His first symptom was aphasia . . . he was so frustrated at not being able to get the words out and with me for not “reading his mind.” Eventually, I would just nod my head and agree or support whatever he was trying to say. I also found that asking if he could point to something he was trying to say sometimes helped. Being with him in stores was horrible because he would get so angry and yell or worse at me but what was I to do. I finally designed a business card that simply stated that my husband had dementia and to please direct questions to me. It helped the other people, but really didn’t make me feel very good. Our friends dropped off . . . mostly out of ignorance and fear. Others said they would call, but they never did. If it had not been for finding the most amazing support group that was only 6 or 7 people at that time and now is 28-30 every week, I don’t know if I would still be on earth. I have a strong faith but had many health issues during my caregiving and subsequently and still pushed myself. When my husband still knew what was happening to him, he would ask me to kill him . . . that finally ceased when he became so far gone that he didn’t know what was happening to him and that was a blessing. He did not know me for several years before his death but would look quizzically at me as if to say “who are you; you look familiar.” Please find a group where you can say what you are feeling and get advice, if you want it. I will check your blog from time to time and would love to have you as an email pal. I’ve done that for several friends of friends out of state. You are and will continue to be in my prayers. Ann H. King 770.934.7880.

  3. Jackie Kanfer says:

    Dear Karen, I feel your anguish and your pain. If I were there, I would hold you very close and just listen to whatever it is you have to say. I hope you get that on a daily basis. It has helped me just knowing that I am loved, understood and cared for by other caregivers who are on the same dreadful journey that I am on. I write my story frequently and pass it on to family, friends and caregivers. I think you’re on the right track. I also involve myself in reading Torah. I am Jewish. I have found that doing this helps me grow spiritually. I am very fortunate to have wonderful rabbis who are supporting me and reaching out to help me find the inner peace I desperately need in order to stay on the right path of caring for my husband. And, I recite the serenity prayer daily. A great tool for realization. I cannot change the situation. I can only change the way I deal with it. My anger subsides bit by bit as I practice the aforementioned. However, I do still have moments when I go outdoors and scream at the top of my lungs. Will write more later. Am here for you. Only takes a phone call. 770-559-9141 home. 678-467-0117 cell. God bless you.

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