Archive for February, 2016

There is No Replacement

Martinique. Dec 1999.

Martinique. Dec 1999.

Words sometimes fail me. I search to find the right expressions to convey thoughts, feelings, dilemmas, struggles, pain, gratitude and so much more on a daily basis. Oftentimes I can go through a varied amount of emotions in less than ten minutes. My thoughts move rapidly from one thing to the next, seldom stopping to absorb the impact before rushing into the next viewpoint.

How do I handle the stress and pressure I face daily? I sleep. Way too much. I sometimes try to talk to friends, but there is only so much they can relate to and so many conversations about the same topic that can be had before they disappear. I write. I used to work out. I drink. I watch too many episodes of shows late at night. I listen to music. I read. I have never felt so alone while being so loved and supported.

Jim. He is the missing ingredient. Having him to listen, touch, feel, hear, smell, know….having him be part of each day, each moment, each thought and knowing he would always be there was a comfort I have lost forever. There will be no more passionate kisses or discussions about a presidential race or a movie we saw. There will be no more passing back and forth of the paper. No more taste tests in the kitchen. No more arguments. No more sitting comfortably together in the sunshine on our front porch. No more worried discussions about the kids or bills or anything. There is now only a silence that creates a deafness that is so loud and protruding, it suffocates me emotionally to the point of exhaustion.

Recently, I have delved into some boxes of old photos. Places, times, memories came flooding back. Things I couldn’t remember are gone. Jim is not able to help me recall the spitball fight in Martinique with the couples from Italy. Or were they from Australia? Wait, there was a couple there from Colorado and the rest were from Europe, right? When did we drive to California and stay at the Kaleidoscope Inn? We went to the Hearst Castle and we ate at that really good steakhouse, what was the name of it? Was it Thanksgiving or Valentine’s Day we stayed up on Mt. Charleston and I was so upset we couldn’t get the basketball game because the satellite was frozen? 

Gone. If I can’t recall the details, I no longer have my guy to ask. Even if he remembered, I probably wouldn’t be able to understand him.

There is no denying I have been grieving him over a very long time. It is shameful to admit I wish I could just move on. Along with those words, comes the horrible reality of wanting to be done with watching him succumb to each phase Alzheimer’s brings on. To stop long enough and really think about wanting to be done with him, means he will be dead. And to think of him being dead takes all of my joy and life away. But to think about continuing the visits and not knowing before stepping foot in his facility what he is like this particular moment of this particular day….will he know me? Will he light up like he always does? Will I be able to make out something he says? Will he be awake? Will he be drooling?   Does it matter? He isn’t going to miraculously emerge as his old self, able to carry on the exchanges we held just a year ago. It is exhausting and mentally handicapping.

There have been conversations with friends that have naturally touched on the inevitable subject of me moving on. Taken out of context, it seems cold, deceitful, shallow…. pick your adjective. But, sometimes, as we all know, conversations evolve from one thing to another and things are said that upon looking back might be regretted or just simply a little shocking that the words came out. But at the time, the subject matter came with ease and without malice.

But there it is. I suppose if I were a typical Alzheimer’s wife, in later years, the topic might not be broached. But I am 46, with what I am told are plenty of good years ahead of me. Hard for me to see it. Hard for me to see past the next 5 minutes, let alone years from now. The thought of trying to start a new relationship not only overwhelms me, it makes me a little sick to my stomach. The thought of trying to explain to someone all that our family has endured, the introductions to friends, the awkward getting to know you stages….ughhh! That is why I married Jim and stayed married to Jim (among other reasons). I was done with the whole dating scene. And now there are apps for dating and websites and social media…good grief. And introducing them to the kids and meeting their kids and all of it just makes me want to crawl in a hole.

Truth be told, I often refer back to many articles and notions pertaining to being single and thriving. Why do I need a man? I am capable all on my own. I can be a single mom. I can go to a movie by myself, enjoy a meal solo and even travel wherever and whenever I want. Right? Where is it written I have to ever find someone? Somewhere along the way it is engrained in our very being: You should be with someone. You should want to be with someone. You have less value if you aren’t partnered.

I don’t have time. I am taking the kids to an activity literally 6 or 7 days a week. Almost every night is spent at a practice or a ball game. And I am fine with that. I love watching them and it gets me up and out of the house. I feel so lost and out of control at times and just keeping my life simple seems about all I can manage. Our house is small, but sometimes can seem so empty and vast. I would be lying if I said the thought had never entered my mind. Finding someone new. But just like the fleeting thought of wanting it to all be over, it is superficial and without merit. It isn’t a replacement for Jim I long for. A hand to hold. A laugh to share. A book to discuss. It is Jim and our collective life I seek to find again. The connection I long for cannot and will not be found in another….yet it is so easy to think in terms of wanting to have that all again. When I delve deeper, there isn’t another I picture…it is the memories with Jim I ache to recreate and hold steadfastly onto so I don’t forget them too.

Obviously, I am not “ready”.

I look in the mirror in our bathroom after getting out of the shower. My nakedness reflected back to me, with changes showing each year.

Jim saw me before the wrinkles. Before the cellulite. He saw two children born from this body. He saw me before the gray hair. He saw the youth and the beauty. He saw the immaturity and waited for the personal growth. There will never be someone who saw me and loved me in the same capacity. He has seen and heard me at my all time worst moments. When I was tired, hungry, frustrated, mad or acting like an ass for no apparent reason. He saw the real me. And he stayed. He never waivered. He loved me and continues to love me with every single fault and horrible thing he has witnessed from me for the past 20 years. We built traditions with our children. We fought through times of hurt and miscommunications. We struggled. He chose me. And continued to choose me year after year. We trusted each other. Trust. He still trusts me. In a world of throw away relationships, we have held together for better and for worse.

Our vows said to have and to hold in sickness and in health. For richer and for poorer. ‘Til death do us part.

There is no need to find anyone else to cover those things. I’ve covered them all with Jim. There is nothing left. Nothing left to give.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (16)

An Update

I have a new post to share, but first I just wanted to update you.

  1. We have secured a way for Jim’s wishes to be adhered to by having his brain donated upon his death. Getting this finalized was a huge weight off my shoulders. When the time comes, plans are in place and he will be continuing to contribute to finding a cure through Johns Hopkins. Thank you to everyone who sent information to aid us in our search.
  2. Thank you as well for your votes and your support during Healthline’s 2015 Best Blog Contest. We placed 3rd and I am pleased to say the $500 prize money will benefit other dementia caregivers through The Garner Foundation. I appreciate all of your help and your daily voting. Thank you!!!
  3. Jim is now receiving Hospice care two days a week. I will not go into much detail at this moment, but it has been a good choice and has helped our family and Jim tremendously. I will discuss this with greater detail in the future.
  4. Jim is still Jim. He is loving and full of hugs and smiles most days. This disease cannot take away his soul. He is a kind and loving man and it still shines through. Some days it is easier to see.
  5. I am editing a post and will publish it shortly.

Thank you all for your continued readership and for sharing this journey with our family. Your kind words help in so many ways. I am grateful.

posted by Karen in Uncategorized and have Comments (3)