Alaska!

Posing by a gushing waterfall in a rainforest in Juneau.

Posing by a gushing waterfall in a rainforest in Juneau.      July 2014.

First things first: Our trip to Alaska was great. Great in the sense we got away from everyday life and got to see some absolutely AMAZING sights: Glaciers, Bald Eagles, Orcas, Humpbacks, Otters, Seals. Just breathtaking mountains of snow, trees, mist, clouds and water all rolled into one.

We had never been on a cruise. Actually, no one in our family has ever really wanted to go on one. When we first started talking about visiting Alaska, we were going to fly there and do our own tour of the state. Prices and Alzheimer’s Disease changed our agenda. After much thought and discussion, I decided (notice the “I”) we would forgo our previous plans and go with the cruise option. We would join all the other tourists at the port of calls and try to find our way among the masses versus venturing out on our own for parts unknown.

I have been asked several times since our return if Jim enjoyed himself. Yes. Yes he did. As much as you can tell, he did. Since Jim is no longer showing much emotion or throwing out many comments, you must listen and observe closely. As my Mom told me, “That is the most excitement and emotion I have seen from Jim in a long time.” She was right. As we emerged from the rainforest we were touring, into the sights of a huge, beautiful, blue glacier, Jim exclaimed, “Oh wow.” Perfect sentiments, but unusual at this point with him.

Searching for moose outside of Anchorage, Alaska. June 2014.

Searching for moose outside of Anchorage, Alaska.             June 2014.

Many times he just sat and watched the beautiful scenery float by. He seldom said much about what we were doing. But there were smiles and times of excitement that we don’t get to see anymore while at home. There were also the times he got lost on the cruise ship. Even I had trouble at times, and I am good at navigating. But he got stuck on a floor and couldn’t figure out how to get back to our floor even after calling a few times. Eventually my Dad went to get him, after we  had been searching all over the ship for him. It was frustrating and sad. We all felt bad. Jim didn’t seem one bit bothered. It is our new normal. It was a lesson. We learned that he couldn’t be left alone at all and needed to be with someone, even it was one of the kids, at all times. Sad. Annoying. Emotional.

One night, I was sitting in our cabin while the kids were out meandering around with their new friends. Jim was slowing searching around the cabin. Eventually, he sat on the bed and started to cry. I didn’t understand immediately why. So I asked him why he was crying. “Because everything I do from here on out is going to be the last time I do it. Everything is the last time.” He was having a moment of clarity. He knew why we were on this trip. He knew he wouldn’t be coming back. Even if the kids and I eventually did.

Later, on the last day of our journey, Jim seemed content. He was happy. He was awake and alert and enjoying himself. We all were. He hugged me and thanked me for taking him to Alaska. He thanked me for being a good wife and taking care of him. And he cried again. But these were different tears. Sad but different.

Jim and Brad enjoying a beautiful sunset on the ship. July 2014.

Jim and Brad enjoying a beautiful sunset on the ship.          July 2014.

And I waited. I waited until we had gotten home. I waited until we had survived the red eye flight and had started laundry and had unpacked our bags. I waited until I had the rare moment alone. And I cried. I cried because I was spent. I was emotionally and physically spent. Even after taking a wonderful vacation, I was tired from the psychological strain of making it all perfect and figuring out schedules and payments and keeping track of people,  places and things. I was done. Then, that night, I had to work. I had to do laundry. I had to worry about dinner. I had to make sure Jim and the kids were ok. Life was back to normal.

I failed again. I failed Jim. The week prior to our departure, I went over everything that needed to be packed with him and the kids. Multiple times. As a mom, I seem to repeat myself over and over again. It is annoying to everyone involved. I checked Brads’ bag. My Mom checked Frances’ bag. No one checked Jims’ bag. I (mistakenly) assumed that telling him over and over to pack sweatshirts and jackets and cool weather stuff would suffice. I was mistaken. He had shorts and t-shirts and polos. It was chilly. Thankfully, , my Mom bought him an Alaska jacket on the first day and he had that to wear each day. But, the real problem was I knew that I should check his bag. I knew it is no longer enough to remind him over and over what to do. I must go behind him and double check. The Fourth of July t-shirt I purchased him? No where to be found. Even though I had reminded him numerous times to pack it. It is such a deceptive disease. You think you can get away with letting things go but you really can’t. They sneak up on you and bite you.

So, we had a wonderful time but there were supreme heartbreaking moments. Moments that are part of our journey but normally not part of vacations.

Thank you so very much for all of the well wishes and support after my last post. I appreciate your words of encouragement and they helped me. It was a memorable journey.

Standing in front of the Mendenhall Glacier, near Juneau, Alaska. July 2014.

Standing in front of the Mendenhall Glacier, near Juneau, Alaska. July 2014.

A couple of days after our return, I was laying in bed and Jim came and sat on the edge of the bed by my feet. He started rubbing my feet and I had my eyes closed. If I let myself, it could have been years ago and all this talk about Alzheimer’s Disease could easily be a nightmare that others live. But as I tried to meld into a different time and place, I was snapped back into our reality. I heard a sniffle and then a sob. As Jim sat rubbing my soles, his soul was opening. I asked him what was wrong. “I am just so tired of not being able to remember anything.”

“Well, you remember our trip we just went on, right?”

“Yes.”

“Where did we go?”

Silence. My breathing became a bit shallow and I began to curse myself for asking. Did I really need to put him through this torture and myself as well? But I knew he knew this answer.

“I can’t remember the places.”

“But you remember the state. What state did we got to?”

“Alaska.”
“Well, that is all you need to remember.”

“I wish I had all the places I went with the IG team still. I think that one pier we were at, looking out at the water and the birds was really familiar.”

“Jim, you never went to Alaska. That was one of the main reasons we went. You went to Seattle.”

“Hmmm. It sure did look familiar, like I had been there before.”

“Well, we have lots of pictures and we will help you remember.”

“Thanks. I love you. You are a great wife and I am so lucky. Thank you for being such a good wife to me.”

Jim looking out from our balcony. July 2014.

Jim looking out from our balcony. July 2014.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (19)

19 Responses to “Alaska!”

  1. Susan Woollard says:

    Hey Karen, I can some what feel your pain. In Feb. David was diagnosed with stage 4 lung cancer. With the chemo and drugs, we are living much the same as you describe. Maybe we should get together some time…

  2. Chris says:

    Karen-I believe this is the toughest time (although every stage is tough). It’s the time when our loved ones live in two different worlds-their Alzheimer’s World and then clarity of the world around them. They realize the gaps, that something is not right, that something is out of sync. Some get depressed, others become angry and others are resigned to the effects of this horrible disease.

    This is all about memories now. Memories for those who will be left behind (the spouses and the children). We take many more pictures than ever-of just brief moments. We use them as his memory. We don’t ask questions. Sometime we sit quietly and look through the pictures together. Other times, I tell the stories of the pictures. It does help my husband. He finds comfort in the pictures of his very small family, relatives long gone, his granddaughters, our annual trips to Florida, the beaches. etc. It seems to keep him connected. At times, I will find him looking through the album alone. Sometime, I leave him for a bit as he smiles looking through them all. Other times, I try to engage him through the pictures. Some days, it’s the only way I can connect with him.

    I’m so glad you were all able to take this trip-even with all of the bumps along the way. You can tell him the story of your trip there over and over again. Your children can tell him their version of the trip. All of this through pictures.

    Time is so precious. All we planners are now forced to live in the moment and at times, fly by the seat of our pants. It’s been a major adjustment for me, but I know that everyone else in my house is unable to be flexible, so, I HAVE to be the flexible one.

    What was once my weakness has now become my strength.

    Get those pictures printed and enjoy the stories over and over again.

  3. Tamie says:

    Karen,
    Jim summed it all up. “You are a great wife and I am so lucky.”

  4. Lee Ann says:

    I think it is so wonderful that you got your Alaska trip for Jim. He can look at pictures for a long time. All of you can remember the memories of this trip.

  5. Connie says:

    I am so glad you took this trip, we took our Mom back to her country when she was pretty much at Jim’s stage. She and us had great time even though we were sad in so many way but we were glad we went and enjoyed th good times. Keep going and stay strong.

  6. Barb Shefelton says:

    Welcome home. We need to connect some time. Missed you both at group last month. Let’s have a glass of wine some time.

  7. Jeri says:

    Karen-I’m so glad you all had a great time on your trip. I became emotional reading about it….happy and sad for you – and me. I know how hard it is to travel now with our husbands. Just a trip to the store or to the movies is challenging. …..I can tell crowds upset Dwight……it’s written all over his face. But because, like you, I’m trying to make memories-I just keep on keeping on…lol. Take care and rest up!

  8. Chris guz says:

    God Bless you on this difficult journey. Just lost my mom to the disease after 8 years.

  9. Jennifer says:

    You are not just a good wife, you are a remarkable wife and an amazing mother. My prayers go out to you all each and every day. Love you all!!

  10. Jeanne Sapia says:

    You are so lucky to have known the Jimmy we knew an he is even luckier to have you. Thank you for being so good to him.

  11. Andrea says:

    Congratulations on a successful trip. I too am a perfectionist and like things organized and to go as planned. Alzheimers sure it teaching us a lot about learning to go with the flow and accept the things we can’t change. Thankfully, Jim was found on the ship and you were able to purchase what clothing was missing from his luggage. It sounds like everyone had a wonderful time and most of all, your children will cherish the memories of that trip. Please don’t let the few difficulties overshadow what sounds like a fantastic vacation. You were fortunate to be able to go to such a beautiful place with your family. Maybe you could involve the children in working on an Alaskan scrapbook with you :)

  12. Jeri says:

    That’s a great idea Andrea!!!!!

  13. When Joe and I went to Paris in 2005, two years after being diagnosed, we were on the Metro going to the Louvre this was about ten a.m Joe told me to jump but before he could jump the door closed. I stood in front of the Louvre until 4 p.m. Joe had my purse I only had a ticket stub. I figured how to crawl under the turn sty to get on the Metro to go back to the hotel. Did Joe know what hotel we were staying, how to get a ticket to get on the Metro and all this time I was in a state of what should I do. If Joe is lost I would call the American Embassy. Five p.m. I saw Joe coming toward the hotel. Needless to say I never let go of his hand except when he went to the bath room. Read my book for the full story and many more. It is on Amazon.com “I’ll Be Seeing You” by Deane Johnson. Also a preview of a PBS special….Video…Goggle You Tube..Video…I’ll Be seeing You with Deane Johnson.
    Karen I know the stage your in is stressful and heartbreaking. The stage Joe is in year eleven is a view of where he is now never to return to lucidity again. Bless you and all care givers in the world.

  14. Oh am glad it went well!! I remember commenting in the run-up to your trip and wondering how it went.

    Really pleased to hear!

  15. Jeanne Miles says:

    Your webpage is so powerful, intense and emotional. You have a gift in being able to convey your experiences and your family experiences. I am praying for you and your family.

    Tell Bradley I am thinking of him.

    Jeanne Miles, Hilton Elementary

  16. Ann says:

    (((Tears)))… no words at this moment…

  17. Opal Tipton says:

    I’m going through the same with my husband. It sounds like they are pretty much in the same stage. It’s the most insidious disease ever! My one saving grace is that our children are grown. But I’m so sad that some of our grandchildren will never know their Grandpa in his glory! Sad……..But your blog is so right on with how we all feel as caregivers . So I thank you for your thoughts because they’re our thoughts as well. God bless you and Jim and your beautiful children……

  18. Kel & Kim's Mom says:

    Karen…..huugggss……this is a slow and painful….in every way experience…
    my brother’s wife has had this illness for about ten years…he has managed to keep her at home…as he can work from home a lot on his pc.
    I hope you are taking a lot of videos so that you can hear his voice…we didn’t realize that she would lose her ability to talk…I have often felt terrified that she is trapped ‘inside’….she could communicate a bit about four years ago….then not so good…and her ability to swallow was affected…pneumonia etc for apirating food….even yogurt…had an emergency with her while on our annual trip to the mountains…resulting with an
    ambulance trip and a big decision…feeding tube?
    he decided on yes….three years ago…and it has just
    prolonged that nature was presenting….it has delayed
    her eventual ending…
    we just returned from boone nc….she has continued to decline….and he has to lift her to a transport chair to and from the bed etc…to her special wheel chair with head support…she weighs maybe 100 lbs….
    feeding tubes are life support….now what??
    this once vital woman….a vital central part of our family life…is like the husk of the cocoon after the butterfly has left….it is horrible and sad….and yet
    we all put on our happy faces…yu know the one…and do what we can to help my brother to be able to have something normal in life….he has no children…please please video everymoment you can of jim talking with the kids….yu can play them for him…he will enjoy them…..my sis in law loved their vacations to the southwest monument valley….long after she lost her voice….when a western movie came on tv…she saw monument valley and with difficulty raised her hand
    to point to the tv…I know I am going on and on but
    I guess my point is to play the familiar to him and
    never get a feeding tube…it is forced life support and a horrible ending…thinking of you daily Karen…great vibes fro m jax nc

  19. Kel & Kim's Mom says:

    ps….hospice has been a big help…and will be there for the final time…you might want to check into that later…many hugs

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