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)

7 Responses to “Inconsistencies Abound”

  1. Michelle fox says:

    Karen….I truly understand the complexities of your life and the inconsistencies that are frustrating with an Alzheimer’s patient. What I do not understand is why you are so angry? Why are you mad at Jim? He did not ask to get this dreadful disease and he will be the one that will suffer the ultimate consequence. I am puzzled and concerned for you and your level of empathy that you have for Jim. Yes, it is Hell! Anybody that is a caregiver will tell you that. What I don’t hear in your words is compassion. This man, your husband, the father to your children is in essence dying and it takes years and gets much worse. I so wish for you that you could move through this stage of anger and accept what has happened and try and enjoy these years with Jim. None of us know why bad things happen to good people but they do. This experience is making you a strong, independant woman that will be able to carry on. Please know that I only write from experience with my mom and as a social worker who works with this population. Most of all, I write because the words just jump off the page and it compels me to try and help. Please know I am on your side, if it sounds harsh, forgive me. I am never going to say it will be easy but it can be more managable with understanding and humor, yes, laughter is good for the soul.

  2. Mary Butt says:

    Karen….I love to read your Blog…… I live your life too however we are a small step behind you on this journey. I do know what is ahead of me as my father-in-law had Alzheimer’s and my own Dad had Lewy Body disease. It is a rough path to travel but I must tell you that I gain strength and insight from your Blog. Please keep the stories coming. Wishing you a great weekend with your family.

  3. Linda says:

    Karen….I wish we could have a coffee talk on the phone…my ole hands are weary at typing…I feel for you…my brother’s wife has had frontal lobe dementia for ten years now…and I have seen her go from vibrant
    take charge wife to someone who is a husk of her former self…they never had any children..she is 14 years older than he….I have seen my brother go from the
    lord of the manor so to speak to the chambermaid of of the manor….this fellow that never changed a baby diaper…who would gag at the mere thought.,…now runs a nursing home on wheels…he changes her…feeds her with her feeding tube…had endured life with no sound from her for years….his devotion to her has shamed me…from feeling like she is a burden to him….and I adore her…but feeling that he is getting old and too old…she is a tesdtament to his love….stay strong and enjoy the ‘here and now’ time with your love…..it is what it is…and more than it will be tomorrow….just love each other…make him tell you a thousand times….it is what you have and I know my brother would change places with you even knowing what you face in the future …just to hear his wife say I love you….with fondest regards….love and prayers

  4. Mary says:

    You have so much on your plate right now, raising your young children, supporting the family, and caring for your dear husband. That is a lot on your shoulders. But there is one responsibility you can jettison – “I feel compelled to try to keep his mind active.”

    The sooner you can adopt the attitude “it is what it is” concerning your husband’s cognitive impairments the better it will be for all of you. You are not going to be able to save your husband’s brain by trying to keep it active. Your husband’s brain is going to continue to deteriorate, and no matter what you read in the media, it is going to happen at the rate the disease decides – completely independent of the number of crossword puzzles he does or the number of vitamins he takes.

    I am dealing with this disease, too, and I have not always been patient in response to my husband’s impairments (to put it mildly). We are all human. So please know that I am not trying to be judgmental, only helpful, by pointing out the following. It is unkind to give you dear husband a math quiz about the age of your marriage – or anything else. If he had a broken leg, you’d not say to him, “Come on now – get up and walk on that leg – you can do it!” If he were blind you’d not say, “Come on now, go play catch with your son. You can do it!”

    This disease is so demeaning to him. One of his biggest fears right now is probably that his wife and children will not love him because of his disease. Your greatest gift to him will be to allay that fear. To reduce stress for him wherever possible. To make light of his deficits, not to emphasize them. To remind him that you love him and will always be there for him.

    You might find this book helpful: “Ten Thousand Joys & Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s” by Olivia Ames Hoblitzelle.

    This is so hard. I’ll be praying for you and your family.

  5. Lee Ann says:

    Michelle, I understand what you are saying to Karen. But since anger is one of the stages of grief, she is probably on the cusp of moving from one stage to the other. I can understand her desire for him to understand, just a little bit more than he does. She IS angry. She didn’t pick this for her marriage. He was always the one who took care of things, the strong one. The dream she picked out meant they would be healthy and having fun until they fell over dead at 95. You know, those seniors that travel, dancing in Mexico, snorkeling in the ocean? The travel brochures? That’s what she picked. She didn’t know she wasn’t going to get the one she picked. She got “the other one”. And I would imagine it takes going through those stages of grief to get to some form of acceptance.

    A best friend of mine helped take care of her Mother , with cancer for several years. She cared for her Mom all day, until her Dad came home and took over, so my friend could go home to her own family. They grieved in those several years. They grieved in place. After her Mother died, her Father married his wife’s best friend one year and one day after the death of her Mother. And the other five kids were horrified, “How could he forget their Mother like that.” My friend told them, “you weren’t here. You didn’t see the pain in Dad’s eyes every day. If you saw him grieving every day, you would realize he did his grieving every day, and didn’t need to do it for another ten years.” We all get through grief the best we can. Karen didn’t pick this dream, and its going to take awhile for her to accept the changes. And I am sure she will. I think the math test is a form of bargaining, “If he can just figure this out, maybe it will be okay.” Well, he can’t figure it out. So its one more little step toward reality. She’s doing good. She will be fine. She’s going to be a tough one after all of this. Enjoy your vacation, karen.

  6. Marsha Carpenter says:

    Karen, Bless you, I don’t go a day without thinking of you. My husband has no idea how many years we have been married – when people ask he says “ask her”. Some days he knows his birthdate but he doesn’t know what the numbers mean. And that’s okay. So my advice is to work on safety issues and happiness, forget the small stuff. You are his mind and his heart. So although they leave us, little by little, we have the memories, and if you tell them today they will be all new tomorrow. Enjoy what you can now, the disease ebbs and flows. And someday your children will be amazed that you traveled that journey and that you were a strong woman. Bless you, your children and may God make Jim’s life as good as it can be for as long as he can.

  7. Lynne Ellis says:

    Karen – you do whatever makes you feel like you are helping him, and you. I am in the same stage as you in the disease with my husband, and no matter what others say, if it was their mother or their father or an aunt, it’s not the same as when it is your husband (or wife). Our doctors said — keep his mind active. Try to learn new things — even things he never did before. Why not — if it makes him happy or keeps him entertained, so what if he takes the same golf lesson 12 times. And I do hear compassion, in every word and every sentence. Here’s my punch in the gut moment — we were in Hawaii, and he told us he saw whales swimming and playing with the snorkelers. He described it in great detail. My mom was with him, and she just shook her head no — didn’t happen. He was mixing up seeing whales with seeing snorkelers a day later. Now, we laugh about it, but then it hurt like hell to hear my intelligent amazing husband make up such fantasy.

Place your comment

Please fill your data and comment below.
Name
Email
Website
Your comment