And the Grief Goes On

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Visiting Jim at his new home. October 2015.

There is a time in everyone’s life where you learn who you are and transform into the person you were always meant to be. Welcome to my time.

I am struggling. It has snuck up on me during a period I assumed would be easier and I would be stronger and more prepared. It seems I am never sufficiently equipped anymore. Jim is no longer living in our home which means I am besieged with new emotions I didn’t see coming. There is a new level of grief. When Jim first moved out, there was relief. The kids and I felt like we could breathe and relax a little. But over the course of the two and a half months Jim has been gone, I have started grieving his absence. As with each loss of him over the past few years, I grieve all over again. Although we no longer have to worry about constantly watching him or finding the things he put in strange places or something taken apart to never be put back together again, there is an absence that is felt and is suffocating.   He is gone from our daily lives. There is no Jim with us unless we visit him. We cannot call or text. Even the dog is missing him and the many walks they had daily. Yes, Jim is still “alive” as far as a living and breathing person, but he is not alive in our home. He is alive in my heart, but even that hurts because it is not the same love or the same relationship it once was. I grieve, but it is a grief that will continue without any closure for an undisclosed amount of time. Stop and re-read that sentence.

Over the course of the past two weeks Jim has been to the ER three times and to the urologist 3 times. Three days ago, he was admitted to the hospital for a two night stay while they fed him an intravenous antibiotic. It seems UTI’s are very common when you have a catheter put in and taken out and then put back in. He is unable to tell us what is wrong, so we must constantly guess. Finally, with a high temp, it was time to head back to the hospital. But I wasn’t able to go when they were taking him. I was working and then I had commitments that could not be changed. For the first time, I did not drop everything and run to be with him. I did not sit with him in the ER. I was not there to explain to him what was going on and tell him where he was. I made a decision and cut the cord. Guilt isn’t really the correct word. Sadness at recognizing this life is becoming so commonplace for us the kids weren’t even surprised when I told them he was in the hospital. I told few people. It seems after you do this a few times, it becomes redundant and is there really a reason to let everyone you know in on the latest medical crisis when so many more seem to be headed our way?

Yep. I’m depressed. My house is a mess. My engine light came on and I have yet to be able to take it by to figure out what is wrong. Hopefully I get it by the shop before I end up by the side of the road.  I have a stack of paperwork to sort through that may or may not get done in the next few days. I have 3 Halloween decorations up and no costume for Brad let alone a pumpkin to carve. But I do have candy. And I do have a plethora of friends who love us and care about us and if I should come to my senses and ask them for help they will do whatever they can. That is a most difficult thing to do. But, when you are in the depths of grieving a person who is still alive, nothing makes sense and you don’t always do the thing that should be done. Sometimes you can’t put enough energy into a full congruous thought process to know what you need or when you need it. So you just do the best you can at that very moment. There is no extra space in my emotional realm to plan ahead or be a good friend right now. I am struggling to be a decent Mom and a rational, thoughtful caregiver from a separate space. A separate mindset.

I think I am halfway ok. I think recognizing I am not doing so hot is a huge sign of a healthy mind. I think knowing I am down and knowing I have a valid reason for being down is also part of this healing process. I think learning to live in the exact moment I am living in takes a strength and maturity I haven’t possessed before. I am not the “I can do it all” person anymore. Maybe one day I will be again but for now, I must learn to accept my shortcomings in comparison to my previous self. It’s ok to celebrate accomplishing something as simple as fixing dinner AND doing a load of laundry in the same day. It’s a bonus if I also put away the laundry or possibly pay a bill. I cannot even fathom being the multi-tasker, over-achiever I once was. I cannot expect to live a life as if nothing catastrophic is happening. I am losing my spouse. I have lost my spouse. My children are losing their father. An AMAZING father. They have lost their father. I am a single parent. I am morphing and changing and it takes time and understanding.

Understanding. I used to worry about my friends disappearing. I still do but I also can’t take someone being my friend for the wrong reasons. If they are tired of our constant tragedy, it’s ok to walk away. I get it. I am tired too. Don’t stay to save face. I have come to realize I actually only want and need those who truly are able to be present for this heartbreaking journey. The others can do the best they can with whatever situation they have going on and it’s all right. I understand. We all have a story and sometimes we can deal with one better than another. Right at this juncture in my life, I must re-direct myself to whittle down my priorities.

It has been a long time coming but I think I have gotten out my big girl panties and have at least thought about putting them on. It isn’t easy, but I am starting to be good to myself and love myself. I haven’t for a long time and that is where I must begin. I am going to plan a break, a time away, by myself, to re-cover and rejuvenate my mind and my spirit. And then I will come back and continue on with the hurt and the heartache and the daily dilemmas. I will get through this awfulness, only with the help of so many wonderful friends and my parents. They are my saving grace….the smallest gestures quickly add up to a net that catches me and throws me back on my feet.  I won’t like it but I will keep moving forward, albeit slowly and without as much pizazz. And one day I will look back and be amazed at the love and support our family was given and wonder how I ever survived.

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 “And the Grief Goes On”

  1. Kathleen says:

    Horrible disease I face as well. Hard to hold on. You are brave. We have no choice blessing coming your way.

  2. Christine Felts says:

    Your reward will be great in Heaven.

  3. The hardest part of this disease is the seemingly endless grieving. You grieve for each little part of the person you know as those parts disappear, and you’re grieving for someone who is technically still here. Here but not PRESENT. And that grief is somehow much more painful than grieving someone who has passed away. Not only more painful, but exhausting because you have no idea how long this grieving process is going to last. I’ve been through it. I get it.
    As you chose this blog as an outlet to tell your story, express your feelings, and share your journey with others, when my family was going through this with my mom, I wrote a lot of poetry about it. Sometimes I’d write a narrative, the way you do, but mostly I write poetry. I hope you don’t mind if I post one of my poems here for you. I just want you to know that there are people who DO understand what you are going through. So many people don’t. Even if they try, they can’t. Not unless they have actually been there.
    Anyway, your post above about the grief going on reminded me very much of a poem I wrote for my mother on her birthday, the year before she died. I’d like to share it with you. I know you don’t know me, but perhaps my words will comfort you in at least knowing you are not alone and there are others who do understand. <3
    The poem is titled "ambiguous loss"…

    ambiguous loss:

    a clinical term

    for mobile mourning,

    unresolved sorrow,

    and seemingly never-ending grief.

    we miss you

    even though you are here.

    well, your body is here.

    whatever made you YOU is gone.

    we miss your smile

    your laugh

    your humor

    your compassion

    your inspiration,

    your encouragement,

    your spirit.

    we miss YOU.

    today, we can celebrate

    the day you were born

    and all the wonderful memories

    of days past.

    but as we smile for happy memories,

    we still can't shake that

    ambiguous loss.

    because you can't celebrate what you don't remember.

    you can't miss us if you don't know who we are,

    or who you are, for that matter.

    despite our sadness,

    your birthday is still a day to celebrate.

    you were born.

    you were daughter, sister,

    wife, mother, and friend.

    even though the time we had with the real you

    was cruelly and painfully cut short,

    each moment and each memory we have

    is that much more precious.

    yes, we have lost a lot.

    we have lost a lot of YOU.

    but we can be thankful

    that your heart was so big

    that you gave enough love to last a lifetime.

    happy birthday, Mom.

    i pray that you can hear us, even if you no longer understand what we say.

    i pray that whereever you are trapped inside your mind

    is a safe and comfortable place, not confusing or scary.

    and i pray that despite all that you've lost, that we all have lost,

    that your heart feels full and proud

    of the wonderful person you were,

    of the family you raised,

    of the friends you have made,

    and all the people who love you

    and will love you forever

    without ambiguity.

    <3
    As always, you and Jim are in my prayers. Take care.

  4. You describe the grief well… The not knowing how long its going to take???, whats going to happen next??? Always a new drama, new demand, new unexpected need, only adds to this bottomless well of grief I never knew existed. I also experience the same emotions with my mother, whom I miss so very much…She would have been the very one who would have been able to advise me and carry me through this but now she is the one that is living out her last days in an abyss I can’t reach and I don’t know how to save her… As I grieve for her and all we lost and do what I must to ensure she is cared for , so too are you, Jim and your family in my heart and prayers. (I often imagine your family and mine – in separate hospitals on separate continents, yet each facing the same horror)…Blessings…*hugs*

  5. Chris says:

    you walk this lonely journey with many by your side. Hoping you find some peace during this phase. I’ve lost my husband. He’s been replaced with a very sweet man who smiles when I come to visit. But witching 15-20minutes, he’s on his way. When I placed him a year ago, I just wanted h to be happy. Thankfully, he is, but that means he is no longer in our world. Happy, yet absent. It’s a double edged sword. You are not alone.

  6. Jeri says:

    Denise…..that was beautiful…….sad (I’m crying), but so well put and heart felt. My husband who was 58 died on June 9th of young onset alzheimers and the grief goes on and on. With this diagnoses I think you grieve from the moment you hear it till ????????? I’m not sure it will ever stop. And it hits hard at such random times. Thank you for sharing your poem.

  7. Denise, may I use your poem at the end of my book, Feelings of Steel with Love” It is the last 5 years of my husbands life having lived over 11 years with Alzheimer’s? deanejohnson@twc.com Karen, I too have become a different me living through the loss of Joe with Alz. Yes, grief continues and I see no closure of my grief. I can’t say Joe’s name, look at his picture, or listen to his CD’s without crying. On Oct. 27, our 64th. anniversary, (I celebratedl) I finalized the grave side monument. My daughter took me to finalize the monument, one grandson brought me ice cream and a beer to wash it down, flowers to cheer me, and calls from my children helped me. I follow your journey and like me the end will come but I doubt the grief will ever end. I love you and feel your pain.

  8. Lee Hubbard says:

    Karen, you sound great. I’ve been reading your blog from day 1. This is the most positive letter I’ve read from you. I feel good after reading it. Bless you. Hang in there.

  9. Lee Ann says:

    Karen, have you gotten on anti depressants yet? There is such a thing as situational depression. And a good anti depressant will still allow you to feel every pain and joy, just not dwell in the pit for a long time. Before anti depressants, i was a dweller, a ruminator. I sat in the pit and worried and feared everything. I am on anti depressants now and I still know the problems, but I can escape the pain. Grief is good, we all have to work our way through grief. But dwelling in pain is not good either. Take care of yourself , so you can take care of that car light, and the kids and everything around you.

  10. Joan Ryan says:

    On my way home today I thought why can’t he talk to me and then I was reminded he is no longer the man I had but a stranger.They tell me I will know when to place him,how long must I live like this,I so envy other couples ,it’s a sad unfair frustrating illness.Hoping you find peace in your heart and think about all the good things you did for Jim.You are raising his children alone the best you can!

  11. Maria Cordero says:

    Karen….it’s ok to just….be where you are right now, today.

  12. Kim says:

    I lost my dad and my aunt. My sister is slipping away. Susan is 64. This is a gut punch. The lose is a sharp knife.

  13. Doreen says:

    thank you for your blog. It is my support from someone who is living with the unending sorrow and who really understands the continuous pain. when we go out to walk and I see other couples talking and holding hands my heart breaks because the man I am with is no longer present

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