Living in the NOW

Thank you Patti Brown Photography for this wonderful family photo, 2008.

Thank you Patti Brown Photography for this wonderful family photo, 2008.

I am listening to the kids upstairs. Frances is reading a book to Brad. This is a rare occasion. It warms my heart and soul. I feel a peace I haven’t felt in a long time. Like everything is going to be ok. Is it? Will our lives ever be “ok” again?

It has dawned on me quite loudly in recent weeks that I am actually starting to accept what is happening. And as I do so, I accept Jim and who he is now vs. who he was. I also feel a sense of mourning. Each day it seems I mourn a part of him that is no longer.

I mourn his help as a father.

I mourn his beautiful handwriting that is slowly becoming intelligible.

I mourn our discussions, our communication, our ability to make decisions and co-parent.

I mourn his ability to be my Mr. Fix-it.

I mourn his interest in movies, books, music and the news.

I mourn his interest in the kids’ lives and my life.

I mourn our marriage.

I mourn our family.

I mourn his voice; his ability to speak clearly and with purpose.

I mourn our previous life.

I mourn my partner in just about everything.

Each and every moment of every day. I mourn.

 

At the same time, I am learning (not as fast as I probably should) to accept who he is NOW.

I am being forced to live in the present and only the present. I can’t think of the past. It is much too painful.  I am not at the point where my memories with Jim bring me smiles and warmth. They bring tears and heartache.

I cannot dream of a future; it is too unknown and too full of anguish, fear and loneliness.  All I can see is who Jim is becoming and the fact I am helpless to stop his progression.

Years ago I tried to read the very popular book, The Power of Now.  It just wasn’t in my personality. I naturally envision my future, our future and what we are going to do.  I treasure my past. My friends. My travels. My fun and my heartache. It is all part of what has shaped me into me. It has taught me my life lessons and given me the ability to grow into a woman that can take care of a husband, a family, a home and work full time.  It reminds me of why I married Jim, how we were, how we thought we were going to be. It is a sick cycle. It sucks you in unexpectedly and in a moment you are riddled with pain and a sadness that you can’t remove.

There is no “moving on”. Jim is very much alive and present. We are still in the early stages of this disease. I am very aware of the fact he will be declining and things will become even more difficult. I should cherish THESE times. But at the same time, he is not Jim. He is not the Dad he was or capable of being. He is not the husband. He is not the neighbor. He could no longer be PTA vice-president as he was just a few years ago. He could no longer have a top-secret clearance job as he did just a few years ago. He can no longer get our clothes separated into the right piles; Brad may get my socks and Frances may get his t-shirts. He no longer can remember the exact shelf or drawer to put a bowl or utensil away. He confuses the dishtowels with the washcloths.

No, I can’t live in the past. I can’t dream of our future.  Living in the present may be my only option but I am not sure it is an option I am happy with.  I don’t know at this point in time what would make me happy. Truly happy. How can I be happy when I have a husband that has a disease that has no cure?

I find happiness in the little things. Like listening to our children play together and read together. I find happiness in helping others. I find happiness in making a difference to others. It is the only way.

posted by Karen in Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (12)

12 Responses to “Living in the NOW”

  1. Maureen says:

    Wow! What a fabulous post! It is hard to stay in the day when the day sucks! :-) Yikes! I do what you described, as best I can. And I do believe God has a plan for us. But right now we are where we are, keeping it all together as best we can. Much love and big thanks for this one! xoxo Maureen

  2. Chris says:

    Karen it is about “living in the NOW” and sometimes it isnt a day at a time, it’s a moment at a time. We had a bad day today, but I found simple pleasure in taking my husband to get a chocolate milkshake at his favorite place! I watched him as he took such joy in such a simple thing. Two years ago, he would not have ordered a chocolate shake much less ask for one every day! But still, it was good to see him enjoying himself! Yes, some days its about “Living in the Moment” because a day is just too long. It takes lots of practice to learn one day at a time and “letting go and letting God. But I know He has a plan for us. We may not understand it this very moment, but we try very hard to practice faith and acceptance. Peace to you and your family…

  3. Pete says:

    Karen- Thank you for this post. I have been silently reading your blog for a few months now and thought it was about time I chimed in. You say you find happiness in helping others and I just want you to know how much reading your ‘confessions’ has helped me personally.
    I just moved my father into a memory care facility about six months ago after five years of being his primary caregiver. He was 59, I was 24 when he was diagnosed. As you know care giving within this disease is uniquely isolating. Reading your blog has allowed me to be more comfortable processing what I have been through and where I am headed. In short I guess I just feel a little less lonely. For that I am so grateful.
    I’m sure people tell you this all the time and I know sometimes it’s hard to believe but you’re doing an amazing job. You really are.
    Thank you.

  4. Diane Chadwick says:

    So touching….this is how I think my dad sees my mom. She is much more advanced into AD and dad is mourning the loss of how he remembers his wife of nearly 65 years. Last night we were at a ‘movie songs’ concert….they sang embraceable you and it made me tear up because I remember mom singing that song. She can still ‘sing’ but it is few and far between that we hear her sweet voice. Keep on keeping on. Hugs and prayers to your family.

  5. Jill says:

    My only suggestion that might help with names at this point is to use names for everything. This worked with mom and it least gave her some idea of who/what was going on. Mom, it’s Jill it’s time to shower. Janet it’s Malcolm (my husband) do you want a pear or apple with your sandwich for lunch. Grandma it’s Emily do you want me to what TV with you. Grandma, it’s Jessica and Joey we are going to be here a few hours while mom and day are out so ring you bell if you need me while we clean the kitchen.
    By doing this we were blessed with cutting the confusion.
    All I can say for you and the kids is that support is key, and I wish I had let people help.
    <3

  6. Liz Guy says:

    Karen,
    My mother has dementia and we are more toward the later stages. I see a therapist and she is always stressing being mindful and living in the present. Thank you for your blog. I read it often and I appreciate any attention brought to these diseases. Thinking about blogging myself. Lots of love and prayers your way.

  7. Bird says:

    Karen
    Thank You for sharing your journey. I know what you are going through and how hard it is. My husband was also diagnosed with early onset. I took care of him at home for 8 years at home, just recently had to place him because it became too much for me and I also work full time. What we do not realize is that we mourn every day. We need to just focus on the now and try to make every day as memorial as can be. It has only been two months since I placed my husband and these two months have been harder for me than the eight years I had him at home. We must continue to fight this fight and believe in God. I always say “God wouldn’t have put me in this situation if he didn’t think I could handle this”. This is what keeps me going, along with the Great Support group I have.
    Stay strong. Know we are all here fighting this together. You are helping more people than you know by sharing your story.

  8. Sandy says:

    Bird – you are onto something that I believe in so much. Placing someone in a home is the worst experience you can imagine. If you are feeling stress now, that feeling can bury you. I so miss my strong intelligent little brother. I remember giggling so hard we’d cry. I also remember how incredibly strong Jim was to stand by my side as we buried our older brother Bruce passing away at 52 with the same disease Jim had already been diagnosed with. That had to be the hardest day of my life. I find looking at the Blog so so hard. I’m glad you all are gaining strength from it. After taking care of our mother for 10 years and older brother I’ve learned so much about the good ways to handle the challenges. If I post just this one thought I ask that each of you turn your sadness and stress into smiling moments. When a new challenge pops up, find a way to smile, laugh, and maybe just look at it as the rules of the game have changed. Slow down before you react to them. Don’t ask them to retrace their tracks or try to remember what they did or why. Instead put yourself in their shoes, play pretend, laugh and make it fun. You will reduce your stress and theirs. Best wishes to you all.

  9. Linda says:

    thank you Karen

  10. Michelle Fox says:

    This is a sad but enlightening post Karen. You have come so far in your own personal journey. It does just come down to being in the moment at times and enjoying what is there because it could possibly be gone tomorrow. Each day, it seems, Mom worsens and it takes all of my energy to stay afloat. In my time alone..I just zone out but she is never far from my thoughts and my heart. You are doing an amazing job with your family as well as your advocacy. My prayers continue <3

  11. Allan says:

    Karen, When your children were little more than toddlers, did they help you around the house? Did you give them “chores” to do that gave them a sense of accomplishment (and you could easy “fix” when they were out of view. You are there now. Look upon it as a “use it or lose it” exercise. Jim needs to do SOMETHING that helps you. The socks might be mismatched and in the wrong drawer but, in the big scheme of things, does that really matter? Do NOT try to fight the disease. The disease is going to win. That is certain but hard to accept. Instead view ALL victories as…….. victories. There are NO “small” victories. Rejoice in the time you have together now. “Sandy” responded to your blog with “… maybe just look at it as the rules of the game have changed.” Frankly, that’s the way you have to look at it. The American poet John Greenleaf Whittier once famously reflected; “For of all sad words of tongue or pen, the saddest are these: It might have been.” Live in “today”. Plan for “tomorrow”. Avoid “It might have been.” And if you ever wonder what Angels look like, just peek in the mirror and see how beautiful they really are!!!

  12. Mariarose says:

    I would recommend the book “Creating Moments of Joy” it is good read.

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