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)

Inconsistencies Abound

 

On top of the Assateague Lighthouse, 2010

On top of the Assateague Lighthouse, 2010

Tonight I asked Jim how many years we have been married. At first he said he didn’t know, then answered, “13”.

“No. Guess again.”

“I don’t know.”

“What year were we married?”

“1997.”

“What year is it?”

“2013.”

“So, how many years is that?”

“I don’t know.”

“Ok. 97 – 2007 is how many?”

“10”

“How many from 2007 – 2013?”

“6”

“So, how many would that be?”

“I don’t know. I don’t remember.”

“It was 10. So how much would 10 plus 6 be?”

“16”

“Yep, you are right. We have been married 16 years.”

So goes a conversation with someone in the earliest of stages of Alzheimer’s Disease. Unless you live with someone day in and day out, you really could not comprehend the frustration at the inconsistencies.  Jim normally is a math wizard, and I feel compelled to try to keep his mind active.  Letting him know that he can still figure things out is important, hence the above conversation.

This morning Jim had to go give blood for some tests. We talked many times yesterday about this for a variety of reasons. I told him to put out his sheet with the tests listed and the prescription. As usual, about 6:30 a.m. this morning he got up and went downstairs to start his day. I could hear him. I was just about to hop in the shower when I remembered he was supposed to be fasting. Oh snap! (ok, I might have said something a little stronger than that, but for the sake of your eyes, I am refraining from putting the exact words used) I quickly ran downstairs to ask him if he had eaten anything.

“No, just a peanut butter pretzel.”

“Jim, you were supposed to be fasting.”

Ughhh. Another one of those moments…..anyone could have forgotten.  My “old Jim” probably wouldn’t have. BUT, I need to accept the “new Jim”. On top of that, I felt immense guilt that last night I hadn’t put out a note or two to remind him. I should have. I meant to. I didn’t. I was tired and I went walking with a friend and failed to be one step ahead. I forgot.

Luckily, Jim called the lab. They let him know he could come in this afternoon if he didn’t eat anything all day. So that is what he did. He must have been starving, but he didn’t complain and just kept on keeping on.

I love that man. He is such a good person and such an easy going guy. (Please be sure to remind me of this at a future date when I am having a hard time recalling this fact!)

We are moving on down on the bucket list and will be headed to Chincoteague tomorrow after Brad’s baseball game. We won’t be there too long, but hopefully long enough to get in a bike ride or two, visit some of the shops and bakery and relax as a family with no agenda in mind. I am really looking forward to getting away with the kids and Jim to a place that is sacred to us.  I am REALLY hoping I get a chance to visit one of my favorite all time stores; The Coffee Shop.

Riding bikes on Assateague 2009

Riding bikes on Assateague 2009

I have come to realize that these overnight trips take a lot more forethought and planning. I will need to go through not only my stuff, but Jim’s as well. Frances and Brad pack their own bags, with me just going over verbally what they should have in there.  I will also have to make sure we have the bug spray, sunscreen,snacks, money for the toll, beach towels, bike helmets and the camera and well, you get the idea.

I am sure for so many people, this is standard for each trip. But I have come to realize that I cannot just tell each family member to do something, I must go behind them and make sure it is done.  When you work full time and have a million things going on in your head, this is actually much more difficult than it sounds. Especially when you have gotten used to having a spouse that spoils you by being on top of these types of things. There is a slim chance he will be on top of things and be able to help load up the car. He might remember to put ice in the cooler instead of just the items that are supposed to stay cold.  He might be able to help load the items in the van in a manner he taught me when we were packing up for our drive across country after we were married. Then again, he might not.

Yes, the inconsistencies get you. You never know what each day will bring.

We had a our support group meeting this week. What a wonderful group of people. All of us seem to be at about the same point in this journey. Jim arrived before I did. He filled them in a little and told them what a good time we had in Boston and at the ball game.  He also told them the Red Sox won the game. When they told me this after we were split into our separate groups, it was another one of those punches to the gut. I just wasn’t expecting it. I almost started crying. I was able to hold it together because they were so supportive and could see the immediate disbelief and they completely understood the look I must have had on my face.

Yet, today we were talking to someone and Jim let them know that the Red Sox had lost the game. How does this disease work? One day they know something and the next they don’t and then the next day they know again?

Inconsistencies happen. Life happens.  It will be ok and we will be ok.

Lookout Chincoteague, here we come!

Brad on a beach in Assateague, 2011.

Brad on a beach in Assateague, 2011.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)