Battles Within

Enjoying Chincoteague Island and thankful for The Refuge Inn! Mother's Day 2015.

Enjoying Chincoteague Island and thankful for The Refuge Inn! Mother’s Day 2015.

It has been time for a new post for quite a while and I have written many in my mind. But sitting down to express my thoughts and feelings hasn’t been able to happen, for many reasons.

The first being I have been down. DOWN. As Jim declines, I decline. At some point,  I have to pull myself out of whatever hole I am in, even if he can’t. Without his help. Without his support or his belief in me. Without any communication about such daring escapades. Without the caring gestures and the simple pleasure of knowing he cares and is by my side. Mentally AND physically alone. It is only recently I have come to realize that dealing with one part, say the mental absence, was doable for a while. But then, there is the nonexistent physical connection as well. (Not just sex, but just a simple arm around my shoulders or hand placed at the small of my back as we enter a room….) The two combined equate the ending of our marriage as we knew it, as we lived it, as we dreamed it. Without either the physical or emotional connection to sustain us, what is left?

I feel as if I am a character in an old silent movie, teetering precariously on a steel beam high above the city, with my arms flailing, trying to keep balanced as my body contorts to whatever way my instability throws me while trying desperately to keep steady enough not to fall to my impending death, far, far, below. It is a symbol of the doom I seem to carry with me, even as I try so hard to focus on all the good that surrounds us daily. I mean, let’s be honest, I have much more on the positive side than the negative side happening in my life. It just seems that one, teeny, tiny negative somehow outweighs all of the positives and makes it beyond difficult to ignore or somehow unable to focus on the good stuff enough to keep myself happy and content.

I have been busy. Busy at very specific times. There have been times I have neglected even the most mundane tasks by deciding I couldn’t do anything besides roll over and go back to sleep after the kids went to school. NOT cool. AT ALL. So, after I would do this, once I was awake and functioning, I would go into some sort of immediate guilt trip of spending way too long in bed when I have many, many important things to get done. It has been a vicious cycle and an uphill battle. I am told not to beat myself up and to let myself have this time to heal and deal. It’s just not who I want to be. But only I can fight this battle. And I am winning. Not at the pace I would like, but still, I am winning. I am aware this is textbook depression. I have started seeing a therapist. I am aware this is normal. And it may be, but for me, it is not acceptable. Under any circumstances. See the sentence above about how many more positive things I have going for me.

As previously stated numerous times: JIM IS DECLINING. Yep. He isn’t getting better, but we knew this was our trajectory years ago. Years. You would think at some point this would all become old hat. Even so, our natural human nature is to always hope for something better to come down the pike. It is hard to keep this positive outlook and positive demeanor while understanding and acknowledging Jim is not getting better which means he is sliding closer and closer to things much worse.

Jim recently told me one of his last wishes (don’t worry, he isn’t THAT far along) was to go back to Chincoteague, VA. We used to go every year for Mother’s Day. Last year we missed it. So, this year, with the very kind help of The Refuge Inn, we were able to go and enjoy Mother’s Day weekend. Taking in the beautiful scenery of Chincoteague and Assateague Islands, Jim was like a little kid. Literally. We had such a memorable and fun time together as a family.

I had been worried if he would be able to do the customary bike ride, but it was no problem for him. I was worried if he would have trouble at the beach, but again, it was no trouble. Just the opposite. He was giddy, and happy and crashing into waves like he did years ago. It was such a wonderful site to behold.

Jim riding on Assateague Island, May 2015.

Jim riding on Assateague Island, May 2015.

We had a grand time. The kids enjoyed their dad and the island and just family down time. I enjoyed it all. And Jim fell into a memory that was familiar to him.

Back to reality. The night we returned: I was starting laundry and the kids were putting out the recycling and trash bins. Jim was confused. He wanted to figure out what was going on and what to help with. This is always such a treacherous place. I asked him to go upstairs and get his shower, but he knew we were all doing “chores” and things around the house. As I sorted the laundry, I heard the front door open and close. Not too long after, Frances came in and told me, “Dad just took off.”

Of course I was alarmed and worried and stopped what I was doing. She told me Brad had taken off after him. It was dark. I was immediately uncomfortable and worried. Frances and I started searching for them and calling out their names: loudly into the neighborhood. It seemed like ages, but in reality was probably only 5 minutes before she had located them. I was torn. Angry at him for doing this to his children and relieved to have found him. And sad. For many different reasons. We walked home in silence.

Later I asked him why he ran away like that. His answer was a simple and honest one: “I don’t want to be this person, I don’t want to not be able to do things and to keep getting worse and worse.” He had tried to run from the disease.

There was nothing else to discuss. I just sat with him and silently wondered why such a good man was being tormented over and over.

This whole life with Alzheimer’s Disease is a constant battle.

Battles with Medicare and finances.

Battles with emotions.

Battles with guilt and expectations.

Battles with loneliness.

Battles with internal desires.

Battles with commitments and timing.

Battles with anticipatory grief.

Battles with science and karma and helplessness.

I know I will be ok. I have to be, right? I have to for my kids. For my parents. For Jim. For my friends. For…me? Do I really care if I’m OK? At what costs will I make it through all of this and will I be able to look back and like the person I was and who I become? Will I still be a good Mom and a good friend? Will I continue to be a good caregiver to Jim (although some days I wonder if I am at my optimal and what he deserves).

Only time will tell. Not having been a patient person, I am learning to soak in the opportunities that come our way while recognizing it may take time before I can truly appreciate or understand the journey we have lived through.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (5)

5 Responses to “Battles Within”

  1. Linda says:

    Good Luck, Karen. It is amazing to look back at the beginning of the disease and say to yourself “wow, things were not so bad then although, at the time, I thought it was the end of the World!” I wish it could be like that now, now that I have placed my husband of almost 41 years and who is only 64 in an Alzheimer’s Care Center. It is amazing his decline from diagnosis just five years before. My point, I guess, is enjoy the now….even though it is so different than the before,
    Linda

  2. Mary gold says:

    So happy for you all that you were able to enjoy that special Mother’s day. It was just like old times which
    was surely needed by everybody !

  3. Great, great post. I loved the part about bringing Jim back to a place where his memory, and all of you, could enjoy. Then, as we know, unfortunately it doesn’t end “happily ever after”. But your strength and courage is amazing. I’m at a similar place. Thank you so much!!! xoxo

  4. Melissa says:

    Such an incredible hard place to be. I can’t imagine, but I do hope that you can somehow take care of yourself in all of it. I know it probably seems impossible at times–or maybe even most of the time. But you need nourishment, too. As you say, you HAVE to get through this–for all the others. But what you need to do that also includes the things for YOU. It has to. Because when we’ve scraped the bottom of the barrel in our personal resources healthwise and nothing is left–there really is nothing left. The giving tree ended up a stump. Of nearly all the people I know, I know you will get through. You have the will, determination, and passion for the ones you love. But please please please remember YOU–and that is also remembering the others. It’s mutual. A long time ago a doctor told me that our energy in dealing with things is like a bank account–and that you don’t want to bring it to zero everyday. Eventually it will be zero, period. Taking care of yourself is one way to keep it in the black. :) I learned the hard way. So if it’s possible at all, please nourish yourself, even in the very small ways–which are going to count a lot right now. Love, your cuz

  5. Lee Ann says:

    You will get through this. And believe it or not, you will be strong and independent. You will most certainly appreciate the good times. They say we are here to learn something or teach something. A lot of your posts are about how Jim was your strength and he took care of things, etc. You will be realizing that you are your strength and you will be stronger than you ever knew. After some of the life changes I went through, I moved back to Iowa where my grandchildren are. And someone said, “and you could marry a rich farmer and live on a nice farm.” And I immediately thought, “I don’t need a rich farmer. If I can’t do it myself, I don’t need it.” We learn independence like we learn everything else, through hard work. I think you are doing good. And I am glad to hear you have someone to talk to about all this.

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