Leading the way….but is it the right way?

 

Jim enjoying Alaska. July 2014.

Jim enjoying Alaska. July 2014.

I have been working on some posts. But they are really visceral and I am not ready yet to share them.

Thank you for your concern. Thank you for checking on me.

I am ok. Yep, just ok. I have been and could be better. I could also be worse.

Jim is Jim. Just happy in his everyday world of walking the dog and doing a few things around the house and living in his growing private world.

I believe that as he declines, I decline. I just haven’t been able to accept and ignore his baby steps towards his eventual descent into an abyss of fog and indifference.

How can this man who still plays volleyball and tennis and hits a golf ball 200 yards be unable to remember that he played, who he played and how well he did? Can someone please explain to me how he can visit with two of his dearest and oldest friends from his days in the Air Force, fully aware and participatory and yet the next morning not be able to recall one of their names and slip back into the absentee blank look that he seems to have now more days than not?

Forget my loneliness. I am getting more comfortable with being the decision maker and spending nights and special occasions “alone”. Yet I just can not seem to grasp losing Jim and our changing reality.

The kids. The kids assuage my fears and yet they also are the determining factor of how much anger I have towards this disease; how much I hate bearing witness as their father ignores them; how much I am determined to find a cure before they fall victim; how easily I seem to crack and falter at any given time as I become burdened with the parenting responsibilities normally reserved for two.

So, as we transition into another school year (which I tend to fall into a bit of depression anyway) we also are transitioning into a life without Jim even though Jim is physically with us.

It became apparent over the summer that I was just as guilty as the kids. Since Jim had stopped participating in discussions, we had stopped including him. The kids had stopped telling him “good night” or “I love you” or discussing their day with him. I am ashamed to admit the truth; they were following my lead. I was semi-conscious of this but it all came to a head and I was forced to see my example was not a good one and changes needed to be made. Hard conversations needed to be done.

As I explained to them,” I got a second chance to have a good relationship with my parents after being a terrible daughter and typical teenager. You, unfortunately, will not get that chance. You will only have one chance with your Dad and I don’t want you to look back and regret your relationship or how you treated him. You must participate in his life now because soon you won’t be able to. Whether he seems to care or not, you must remind yourself that he does.”

Now I must follow my own advice.

Jim and Brad sharing a book, 2006. This was before Alzheimer's Disease took hold of all of our memories and our day to day lives.

Jim and Brad sharing a book, 2006. This was before Alzheimer’s Disease took hold of all of our memories and our day to day lives.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (13)

13 Responses to “Leading the way….but is it the right way?”

  1. Karen the week-end of 23rd I found myself in a dark-dark place. I cried, screamed, wailed and could not see a way out of the dark. I even imagined putting Joe in the car and driving into the lake. I ask myself if I was loosing my faith and with that thought I really broke down. Loosing my faith was more hopeless than facing Joe’s Alzheimer’s I took a weeks break from visiting Joe. Today we had a great visit. He hummed a tune, Fly Me To The Moon, kissed me, conversed using the Alzheimer’s vocabulary. Two hours into my visit he feel asleep and I came home. I told one of my daughters I was aware of another joy we can all share. I didn’t know Joe as a toddler and now I am watching him slip back to that age. My daughter told me that was quite a stretch finding Joy as Joe reverts to childhood. I am seeing the same loving, mannerly toddler as he was a man. Did you ever think love would hurt? Prayers

  2. Opal Tipton says:

    Karen. I think of you so often as we travel this road together. You, me and so many others. But as hard as it is for me, I know it has to be so much harder for you and your two children. It breaks my heart for you and them. I don’t have to deal with young ones. Our kids are between the ages of 30 and 52. Big space between the oldest and the youngest. We’ve had many happy years, made a lot of memories. You and your kids won’t have that luxury and that’s the worst. Such a tragedy……just try to make the best of a terrible situation! And I know that’s almost an impossibility! But one day, it will be over for Jim and life will go on. We all face the same fate. Sad to say. It doesn’t get any better. I just pray, as do you, for a cure as I have 4 children and my worst nightmare is that they’ll suffer the same fate as their Dad. Please keep the faith, try to stay strong and let it all out! Sometimes it helps to have a good cry! Believe me, I know! I love you sweetie and I truly feel your pain……..till your next blog, God bless you and Jim and those precious children…….much love coming your way!

  3. Jeri says:

    Karen, I had decided that if I didn’t see a new post tonight I was going to e mail you. Like so many others, I was concerned that you were going through some extra difficult times. Glad to see you’re “ok”. I’ve sort of resigned myself to being ok with “just being ok.”
    Dwight is having more difficulties in every aspect of living these last couple of months. I don’t think I’ll ever get used to everything taking so much time and effort to accomplish. There are times I can cope and then there are times my patience wears really thin….and I feel really bad about that, but I am doing the best I can and so are you.
    This disease is so strange. I can remember when Dwight’s Dad had progressed to the point of not being able to carry on a conversation and mostly mumbled. Then one day we were visiting him when our son called (he was in the army at the time) and I handed Pops the phone……well, to our amazement he talked to him like he would have before Alzheimers…j….just for that short amount of time everything was like it was before Alzheimers. I found that so strange, but such a blessing too……a little miracle of sorts

  4. Chris says:

    Karen-
    I understand your struggles. My husband, Ron, seems to be very happy in his world. And while I’d rather he spend more time in ours, I have accepted that his world is best for him. Never thought I would get to the acceptance phase, but here I am. Once I accepted that he was happier there, I felt a great sense of relief. All I’ve every wanted was his happiness. I just thought it would include me/us. But I care enough to let him be happy where ever he is-his time here is very limited. I love him. So, why wouldn’t I want him to be happy?
    I have found an assisted living facility that specializes in Alzheimer’s residents. I believe he will be happier there. He is on a wait list. Again, not what we had planned, but again, I believe he will be happy & safe and I won’t have to sleep with one eye open every night.
    Our 15 year old son has grown so much from this experience. He shows a great deal of compassion and empathy for his Dad. What else could a mother want from a son? Again, not what we had planned, but I feel blessed that my son has had this time with his dad.
    So, while you may be in the fog, the funk and a constant state of influx, this too shall pass. Acceptance has done wonders for our family. Doesn’t mean I won’t fight for a cure. I just know there is none for us. But we will continue to talk, walk and spread the word so that the next family’s journey will be a bit easier.
    Be safe. Be well. Take care of your children. Most importantly, take care of you. You can’t be there for anyone if you don’t take some small bits of time to take care of yourself. I know, easier said than done!! But even a few minutes a day is better than none. Baby steps!
    There will be lots of time to blog later. Live in the moment, enjoy what you can and keep us posted whenever you find time. We’ll all be here!!

  5. suzi says:

    You have been on my mind, even as I find myself wallowing in my own pain/self pity. We should try for this dinner for you guys again soon.
    Saying a few prayers for you guys tonight.

  6. Christy T says:

    Sending my love ….

  7. joan says:

    hi Karen
    I my 59yr old husband was diagnosed 2 years ago,although yes he had it much longer.Recently he had a decline and we were forced to confront reality.It broke my heart to take his licence, .So many of your blogs are like us in daily living.Here in Canada there is no early onset support in my province.
    I’m praying for us all,dont be afraid to get help and do nice things for yourself! stay strong!

  8. Lee Ann says:

    I believe that most loving family members go through the grieving process, beginning long before their family member passes on. It hurts every day, getting better, then getting worse, its an acceptance difficulty. Because things change back and forth. You never know how everything is going to be from one day to the next.

    My favorite quote works for me. I’ve liked this quote for years, not sure who said it. “All life is change. Whether you walk through it with your head held hi or are dragged through it kicking and screaming, its still going to change.”

    Sometimes when I read a particularly sad or lonely post on your blog, I will think, “Oh that’s at least a two week off post.” After a really sad one, I think you incorporate it into your thoughts and it helps to adjust to the changes around you. I think it helps you to work through these changes subconsciously. Good for you. Take care of yourself, love your kids. And know that you are really doing a good job with Jim and the kids.

  9. Barbara Smith says:

    A friend who went through all you have until her husband died last year. Alzheimer runs in my family on both sides. I sign up for every test someone will give but I’m always told until I’m diagnosed they won’t do the test!! How can they possibly chart progress if they won’t test those that have the propensity to succumb to the disease. My heart goes out to you and your young children. I fear my husband will go through exactly what you are now. He already looses patience quickly. I’ll take a few prayers too.

  10. Chris G says:

    Lost my Mom this year to this awful disease. I was worried about you too. Please do not decline with Jim. Stay alive for yourself and your kids. I pray for you to find strength to get through the day. Smile! You are loved by many.

  11. Sandy says:

    Your message makes me feel happier for all of you. We all know that we cannot change what is happening but if you can teach the kids to embrace it then Jim will be more content which will ultimately make you all feel better about making his days continue to be part of yours. I remember pretending to play football with Bruce as he paced the halls in the nursing home and he seemed so disconnected when all of a sudden he started doing football moves and laughed. I will never forget how happy I was. That moment made me forget so many struggles. If u can, try to remember and explain to the kids that even when Jim doesn’t communicate as we’ll he still understands what he’s hearing. It feels so good for him to be talked and still hurts to be talked about. Our hearts go out to all of you.

  12. You sound a wonderful son and father. It’s ok to be dark and visceral at times – wishing you all the best…

  13. Mariarose says:

    You are wise – and leading your children in a kind and loving way. HUGS

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