Thursday, January 5, 2017

"I Have Never Been Married"

We left home just before another snow storm was about to come our way. The drive was uneventful, weather wise, and traffic was not too bad. We were on the road about 8 hours a day, allowing for mostly daylight driving.

The days were punctuated with questions and comments like "how did we get here?" "Whose car is this?"

The second night of our trip was very challenging for Jim. He became quite irritated and frustrated over seemingly minor things. Around 9:00 PM he announced "I'm getting out of here and going home! It's not that far. I'm not staying here!" I somehow managed to plead with him to not leave me alone. I thought that this strategy would work better than any other, and I was right. He finally got into bed and we both fell asleep, quite exhausted from the stress.

In the morning (our final leg of the trip) he seemed OK, pretty calm. Once in the car, the following conversation ensued:

Jim: "How did our paths cross to end up here? Did you fly here?"

Me: "We left our home two days ago and are driving to FL for the winter."

Jim: "Our home? How long have I known you?"

Me: "We met 39 years ago, and have been married for 30 years."

Jim: (Very long pause) "I hate to tell you this, but I have never been married. I'm sorry to have to tell you this, but you must be confused. (Long pause) "I hope you are not upset about this."

Me: (Decided to try one more time, ever so gently. Pointed to my wedding rings.) "Remember these? Remember the picture on our piano of our wedding day?"

Jim: (Looking at the rings) "Oh, you're married. This will make things awkward. Do other people know that we are here together? Will people be upset by this?"

At this point it just made sense to let it go. He was not upset at all during this conversation, in fact he was very calm. For the rest of our drive that day he treated me differently, as if I were an acquaintance.

It was a glimpse into our future, knowing that someday he will likely not know who I am. It was profoundly sad.

By the time we arrived at our condo,  he was still confused. As we unpacked the car, he pointed to a bin and said "what's in there?" I said "that is all of our financial information, our investments, banking information, and portfolio spreadsheets."

Jim: (Looking at me with one raised eyebrow and speaking calmly) "OUR investments?"

I just let it drop. But it still left me feeling so very alone, so incredibly sad. Part of the journey that is called the long goodbye.

We unpacked the car, got settled a bit and headed to the grocery store. Over this period of time, he started to come around. He asked more questions ("How did we meet?") and eventually seemed to be coming to the realization that we had a history together. At one point he said "Will you live with me?" I ran with this and replied "Well, we've been living together for over 30 years."

While standing in the checkout line (!)  he popped the question very quietly "Will you marry me?" So bittersweet.

Throughout the following two days it was recovery mode for his memory of our history together. He was very calm, very curious, and indicating that he was starting to remember. At one point, he became very quiet and concerned that he had forgotten our past together. It was the first time he has ever acknowledged that he had any problems with memory loss.

I knew that the travel and the different environment would bring challenges. It is known that anything outside the routine can worsen confusion for folks with dementia. I didn't expect that the confusion would involve our relationship. Having our friends here has helped with Jim's orientation. As soon as he saw them, he was happy and glad to see them.

We have survived another dementia challenge. I believe I handled it the best I could, given the circumstances. We've only been here for a few days, but already we are settling into a very nice, quiet lifestyle. Waking up when we want. Walking down the beach after breakfast, connecting with friends poolside, enjoying the wonderful seafood FL has to offer. Jim is more relaxed than I have seen him in a very long time. We're enjoying each other and our time with our friends.

But, and it is a big but, I am on super high alert. More so than at home. I will not leave him alone, even for a few minutes. I'm not sure my system at home of leaving notes (where I am, when I will return, cell phone number) will work here. So, it is more "togetherness" than I want, but at this point it seems the right thing to do. I'll skip the pedicure, lunch with the girls, going to the gym (Jim not interested at all), because to do so would put him at great risk.

I never worry about him wandering off (he is fearful of getting lost), but I'm just not sure how he would react if left alone for any period of time. We'll see, as time passes and he feels more comfortable with our environment.

Once again, thank you dear readers for stopping by. Just typing these words helps me immensely, knowing that by blogosphere friends are listening.


22 comments:

  1. He is progressing quickly into that place we all fear. And he is so incredibly fortunate to have you as his partner. I'm so sorry you must deal with this. But apparently he still truly loves you. I hope you will enjoy your time in FL.

    ReplyDelete
    Replies
    1. Thanks DJan. The change in climate is wonderful for both of us. I'm grateful that he regained his memory of our history together. Apparently this is not uncommon, where a memory of an event or a relationship can come and go.

      Delete
  2. I feel for what you are going through, even though I have never experienced it. Such a tragic disease. Remember always, you are doing the best you can. I live full time in Fla and I hope you can at least enjoy the wonderful weather.

    ReplyDelete
    Replies
    1. Thanks for the well wishes Mary. It keeps me going, to know that I am trying hard and doing the best I can.

      Love this beautiful weather right now :-)

      Delete
  3. High alert makes sense to me, with this new behavior, but gosh, it's draining for you! Take as much care as you can, of yourself, and perhaps as you settle in things will get a bit easier. And again, thanks for your blog!
    Jan

    ReplyDelete
    Replies
    1. Thanks for the kind words Jan. Things actually seem better today. He is more oriented and his mood is calm. That's the strange thing about this disease. It seems like just when you have figured out what is going on, how to react/not react, there is a new kink that finds its way to the surface.

      Delete
  4. What a powerful post. Hope things settle down and you get to enjoy your time in the sun.

    ReplyDelete
    Replies
    1. Thanks Tom. I'm hoping that by sharing my story that in some way it may help others. I imagine that all of us know someone who is suffering from some type of dementia. The more we raise awareness and understanding, the better it will be for everyone involved.

      PS Temp is mid 70's today!

      Delete
  5. My heart broke for you both and I had to quit reading for a bit. You are an amazing woman and Jim is one lucky man. I am so happy that he is better now and that you can at least enjoy some time together.

    ReplyDelete
    Replies
    1. Oh, Patti, thanks for your kind words. I am so relieved, happy and grateful that I have my Jim back pretty close to his baseline. It does prepare me though, for future setbacks.

      I am surprised by how well he has settled down, and I think a good part of it is from our friends who are here. It is a good distraction for both of us, and they are so understanding and good with him.

      Delete
  6. Your posts make me want to reach through my computer screen and give you a big hug. You are doing the best you can and Jim is so very lucky to have you.

    ReplyDelete
    Replies
    1. Thanks Janice. I feel like I have the best blog friends who care and show their support, and it means a lot to me :-)

      Delete
  7. I wonder if I was in your shoes would I be able to cope as well as you. Reading this brought tears to my eyes. Dementia must be the worst disease to cope with because of the not knowing what will happen next. I do hope you get some pleasure out of your stay in Florida.

    ReplyDelete
    Replies
    1. Over 46 million folks in the world have dementia, and they say the number will double by 2025. In spite of these numbers, it seems like there is not a corresponding awareness of this disease and the impact it has on families and loved ones.

      After my dad died from Lewy Body dementia, I remember my mom saying that she wished she had had more knowledge and insight to the disease while he was still living. I'm hoping to stay ahead of the learning curve, so that I can be of good support for Jim through this next stage of our lives.

      Thanks for your you kind comments Valerie :-)

      Delete
  8. Your story truly is sad. I hope you and Jim enjoy your stay in Florida and that all goes well.

    ReplyDelete
    Replies
    1. Thanks Gigi. We are hoping for the best. So far the weather is great :-)

      Delete
  9. Hope the rest of your time in Fla goes smoothly as he settles into this new routine to him. The long goodbye process as you're experiencing it must be really challenging to live through. Sounds like you're handling it as well as possible. My thoughts and well wishes are with you.m


    ReplyDelete
    Replies
    1. I appreciate your comments Joared. Changing my expectations has helped me to be more content.

      Delete
  10. Oh Carole, this story is heartbreaking. I am glad that you have friends nearby in FL, and that the episode of extreme forgetfulness has passed for now. It is, however a glimpse into the future. In Canada, one of the resources that we have is adult daycares, which provide respite for caregivers on a day by day basis. They are like senior dropin centres, but for adults with dementia or complex physical needs, and are staffed by trained personnel. Do you have that option where you live?

    ReplyDelete
    Replies
    1. Yes, we do have this option where we live. I do see this as a possibility for the future. It will be a tricky transition, as now Jim becomes very anxious if I am not close by. He does OK for a short time away from me if he is with someone he knows very well.

      The dementia journey seems to be changing pretty fast for us, so we will see how it goes. Thanks for your comment Jude.

      Delete
  11. This is the first time I have stopped by your place. You are certainly dealing with a lot but handling it pretty well. I'm impressed with your ability to write about the experiences you are having with your husband. I believe it's healthy to write about it, and it also helps others who are going through something similar or will be. I hope your fortitude continues.

    ReplyDelete
    Replies
    1. Glad you stopped by! Thanks for your kind words. Writing is so very therapeutic for me. And hopefully it will help others who are experiencing a similar journey. It's always good to know you are not alone.

      Delete