My Travel Partner

Jim and I during a rafting trip on the New River in WV, Sept. 2008. This is during our zipline fun.

Jim and I during a rafting trip on the New River in WV, Sept. 2008. This is during our zipline fun.

Soon, we are going to fulfill part of Jim’s bucket list. We are headed to Alaska.

I should be excited. I should be looking forward to this vacation….time away from work, chores, “life” in general. But I am not.

I am completely aware that there are many others who would be joyfully elated at the idea. I would have too a few years ago. But we are headed NOW to THIS place because my husband is afflicted with a terminal disease. Although I have always wanted to visit Alaska, this trip feels bittersweet and forced. It is probably our last big family vacation. I try not to think of it that way, but the truth hurts and is hard to hide. I often feel like I have to justify our expensive trip to others with this explanation.

We were going to try to go last year. Someone promised us a place to stay and airline tickets. But, for various reasons, it didn’t happen. With Alaska, your window of opportunity to visit is small. With an Alzheimer’s patient, your windows of opportunities slowly slide by in increments of immeasurable speed. Jim has declined quite a bit since last year and it is hard to keep from being upset we didn’t go when originally planned. I have only myself to blame. I knew deep down inside we should have gone then, but it was easier to put it off and wait. He would have enjoyed the trip much more and it would have been much easier for all of us.

As it stands now, Jim gets a little confused on where we are going. When we talk about it and he is reminded we are going to go find him a moose in the wild, he is happy and excited. Otherwise, there is no mention or emotion about our upcoming adventure.

The packing, the planning, the saving, the organizing of animals and schedules and everything else is squarely upon my shoulders. Boy, don’t I sound like a whiny, ungrateful person? I am grateful, I am just also sad and a little overwhelmed.

It is hard to be excited or appreciate our upcoming adventure when there is still so much to do and details to follow up on. I am hoping once we are packed, I have everything done and we are on our way, I will be able to let a sigh go and will feel a sense exhilaration.

On top of feeling deflated and somewhat regretful, there have been a few comments made that stung.

Not long after I started this blog I received a message from a woman who had cared for her husband at home along with her children. She talked about watching all of her friends travel for years and being stuck at home. Since he passed, her and her children had started taking all the vacations they couldn’t for so long. She told me how some of her “friends” made snide comments and were so jealous they couldn’t be happy for her. It was very painful for her to realize that she had friends as long as they were able to do what they wanted but when she could do as she pleased, she was alone.

I remember thinking at the time how awful. I also felt she sounded a little bitter and I never wanted to sound like that. I never wanted to complain about others. I wanted to keep the focus of my blog on our ups and downs throughout our journey and help educate. Here I am, just over a year later completely understanding how she felt. It amazes me how people can be envious of you when you have a spouse who can’t recall if they took a shower or remember what they ate for lunch. I get it though. Aren’t we jealous of people driving fancy cars, even if they are driving them alone? Aren’t we envious of the couples in beautiful homes even though they are living in separate parts of the house from each other? Aren’t we turning green when we see someone else with the newest gadget we have been coveting even if they are over drafted in their accounts?

Just this week, I mentioned to someone at work we were going to Alaska and she started telling me about her brother and his family visiting there recently.  They went on lots of excursions and saw lots of things. As she was telling me all they were doing and seeing, I kept thinking how rich they must be; how expensive all of that was. I could sense a little jealously creeping into my soul. Then she went on to tell me they had been saving for a really long time and wanted to get everything in they could because they probably will never be back again. Then, I felt like a spotlight had highlighted my own shortcomings. I fell victim to the very tendencies humans have that I loathe.  99 people can tell you how happy they are for you and be completely sincere. It is the 1 person who casts down a shadow that covers that joy and happiness and causes you to lose sight of the bright side. Why? Why can’t we ignore that naysayer and focus on the 99 smiles and cheers?

We have been saving for over three years. We have had family and friends help. We have cut corners where we can. We sold Jim’s car and used every penny for this trip.

Yet, I am judged for taking time off work. I am judged for taking a vacation and doing something wonderful with my family. I am judged for spending so much money.

It is hard to fight back without sounding petty and bitter and immature. I struggle to rise above. I struggle to stay focused on what I should be focused on; making memories with my family.  Words hurt when they are said, no matter what the circumstances.

I am not looking to be a martyr. I am not looking to sacrifice so I can brag.  I work hard. I like to play hard. Jim was the same way. I don’t see why we can’t do the same for as long as possible while he still can. Those days are numbered. Besides, I am constantly being told to enjoy him while we can. To take care of me and to get away whenever possible. Now that we are, I am made to feel like I am underserving.

I know it is hard sometimes to be happy for others. I know it is hard to bite your tongue. But, I think we ALL should try it a little more often. Myself included.

We may still be able to do some weekends away and hopefully our annual tradition of family camp, but this will be it for a family exploration trip. That is hard to think about. It is hard to celebrate a journey we will take for reasons I don’t want to believe. Traveling has always been a huge part of Jim’s life. He has been all over the world. We have always dreamt and discussed all the places we would visit someday.  Over the past few years, I have caught myself saying “when the kids get older we can go….” Or “when we retire we can visit….” Typical conversations that we had over the course of our relationship. As soon as I would start to verbalize these thoughts, I quickly remembered they will not come to fruition and it becomes an awkward realization for us both. From the first night we met we had a common interest of wanting to tour places we had yet to visit.

This disease it robbing me of my travel partner. My dreamer. My adventurer.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (20)

20 Responses to “My Travel Partner”

  1. Chris says:

    Karen-Please go and enjoy your family and your adventure. Yes, the disease is robbing our families, but no one knows what will happen tomorrow. Life is very fleeting and you never know when it’s your time to go.

    You’ve planned for this. You’ve saved for this. You all are healthy enough to do this. Go, make memories & new adventures. Take lots of pictures!! Make memory books. Share them often.

    Guilt is not appropriate at this time. You and your family need to make memories while you can!

    I hope you all enjoy the adventure. Come home and write all about it! Right now, I’m living vicariously through you. Not jealous. Just so happy you have this opportunity.

    Be safe!

  2. Shirley says:

    Remember you are also making memories for the kids! Seeing you persevere in taking care of their dad! This is probably the beginning of the last… I remember last year being jealous of you and the things you were doing. We haven’t been able to go in a trip. Now I would be happy with an uneventful trip to the mall! Enjoy the time! Make memories and take joy in the little things! Praying for you as always!

  3. Janice says:

    Please post pictures! And for crying out loud, WHO in the heck is expressing jealousy or making you feel guilty? Anyone who would make you feel guilty is not your friend (unless of course they are suffering from some sort of undiagnosed dementia themselves which would be the only valid excuse). My cousin posted something on Facebook about a week ago that I liked–it said “Summer is a great time to prune the friendship tree”. Anyone who knows what you’re living with and who still has the gall to make you feel guilty is not your friend, my friend. Time to prune–snip, snip.

  4. Jeri says:

    Karen…I’m so sorry to hear that people are being thoughtless and making you feel bad. When my husband we first diagnosed I remember his Dr. saying that we were going to go through a lot. Not just with the progression of this horrible disease, but with learning who our real friends are. I didn’t really understand what he meant at the time but I’m finding that out and I think in this case, so are you. Janice said in the comment above that “anyone who knows what you’re going through” wouldn’t have the gall”………..but that’s just it….,,,they DONT know!!! Unless they themselves are going through this they are completely clueless! On a weekly basis I am made aware of that fact by ridiculous. and sometimes thoughtless comments. This is by no means an excuse for their ignorance. ……It’s just a fact. But that doesn’t stop it from hurting us, does it. I really hope you can forget all that for now and just concentrate on having a really great time with your family!!!!!! And I look forward to hearing all about it later:)

  5. Anne says:

    Karen I know it will be tough I brought my husband on holidays and he kept asking where are we going? First couple go nights he cried in the bed because nothing was familiar to him bathroom etc. he settled in after a few nights and we had a great time but he doesn’t remember the trip at all. You need to live in the moment have a great holiday try rescue remedy if it gets too much and I find a nice glass of wine or two !!!!

  6. Rita Hatke says:

    I am so glad you are taking this trip. We did a “once in a lifetime” Hawaiian vacation right after Mike was diagnosed. I’m sure there were people who thought I was crazy but there were hundreds of my friends and family who supported my decision 100%. In fact they encouraged me to make as many memories as possible. We did and I don’t regret it at all. So go and try to enjoy this wonderful opportunity. Looking back on my trip we struggled on days when I had things scheduled as opposed to days when time didn’t matter. Have fun, be safe and make some memories with your family!

  7. Anne says:

    You deserve a great adventure with no apologies. I am sorry it is so bittersweet, but I hope it brings you all joy.

  8. Debbie says:

    Karen enjoy your trip, enjoy making unforgettable memories for you and your kids. I took my husband to Alaska knowing it was our last big trip together, was there trying times yes (he couldn’t figure out how to turn water in shower) was I worried I would go into bathroom and come out to find him gone……yes. But all in all it was well worth every penny spent, I have one of my best pictures of him smiling so big as he saw the sights. You and the kids deserve this time, you deserve the honor of giving Jim the trip he has wanted to take! Enjoy, see what you can, make those memories and continue doing what is right for you and your family. God bless and have a safe and wonderful trip!!!

  9. Lisa says:

    People can be hypocritical and petty. I’m sure once all the planning is done you will have a great time. Enjoy your family adventure!

  10. Laura says:

    No judgment here. Go, and have a wonderful time on your trip! Forget the naysayers, they aren’t worth your time. No one knows your journey, or can completely understand your burdens and troubles. God bless you, Jim and your wonderful children.

  11. Michelle says:

    Karen, try to enjoy, and let go of those negative people. It is none of their business. I will tell you dear, my last trip with Mom was very difficult, just to warn you. Taking her out of a familiar setting just blew her mind wide open. It was hard for her to enjoy and she felt lost and restless. I think though, Jim has not progressed as far Into the disease as Mom had. Just be cautious and prepared, maybe some anti-anxiety medication if available for you or Jim. Overall, I think it is great, go with unbridled abandonment and enjoy the best you possibly can. A trip for the kids to remember with their dad and memories in snapshots of times together <3

  12. Wendy Sweigert says:

    I hope you all have an amazing time in Alaska! It is a well deserved trip and I am glad you are going. Hope to hear about it when you return.

  13. Lee Ann says:

    Just remember theold saying, “those that matter don’t mind.. and those that mind, don’t matter.” Take lots of pictures, and put them in an album. Jim can enjoy looking through them.

  14. Kimberly Smith says:

    I’m so happy you are going on this trip. Enjoy it, take pictures and videos. Don’t worry about the money you are spending, because one thing that’s for sure, you can’t take it with you when you die. Enjoy life to the fullest while you can. Hugs, k

  15. Sara says:

    Enjoy every minute of your Alaskan adventure! Those that are jealous want the trip, not the rest of what you are dealing with! My husband and I watched people take magnificent trips and spend lots of money on themselves while we worked and saved. Now that he has EOAD and I have taken early retirement so that we can do extended trips in our camper, people are envious. But when they say something to me I just remind them that there is a part two to it, and they quickly admit that they don’t want to deal with the disease! Enjoy, enjoy, enjoy! You and your family deserve it!

  16. Andrea says:

    Have a great time. Take lots of photos and make great memories with your children. My husband and I too used to talk about the things we would do when the kids were grown. Now our last is 17 and we won’t get to do those things. Looking back, when he was working and we had much more money, I wish we had spent more time going places we wanted to and making more vacation memories with our children. Life is so short and so fragile!

  17. Tamie says:

    I hope you have a wonderful trip. The negativity of the naysayers is a reflection of them, not you. They have not walked in our shoes. We just spent a week in beautiful Jamaica, and while I had to make some accommodations to reduce the stress for my husband and me, it was one more glorious week together. He enjoyed the memories at the time and that’s all that matters. Live in the moment.

  18. Dee says:

    You should only feel guilt if you do something wrong. This trip is so right for your family. Enjoy!

  19. Oh gosh – you are are brave to do that Karen, though I really hope it goes well…

    Just weekend trips with my mum-in-law tow have always led to semi-breakdowns on my part, and she is on and on at us at the moment to take her on another (NOT going to happen).

    I wish you better luck!

  20. Andrea Spencer says:

    On other tip, expect the unexpected. My husband seems to be in similar stages as yours. I have noticed that once I get him away from home and his usual routine and familiar surrounds, he gets quite confused and even agitated at times. So just anticipate that you may see more of his symptoms while you are away from home than you normally do at home.

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