Tuesday, March 21, 2017

In the Time it Takes to Shower...

I can accomplish a lot! While Jim showered yesterday morning, I contacted JetBlue and arranged for their "Meet and Assist" service. It is available for those with special needs, whatever those needs might be. Here is a link that I found helpful.

Once we park our car, we will proceed to curbside check-in. Someone will be waiting for us to guide us through the airport, get us to the head of long lines, arrange for private security screening, and provide "silent boarding". This allows us to board first, get settled in our seats, prior to the typical mass confusion that follows with routine boarding.

There will be some down time, while we wait for boarding. I've got some of Jim's favorite Car and Driver magazines that I stashed away. He is a car enthusiast and will enjoy looking at the pictures and reading the short articles. I also will pack some snacks and drinks so that we don't have to worry about navigating the airport, trying to obtain food at the busy restaurants.

I'm not a person who cries easily. But every once in a while I catch myself with tears streaming down my face. After I hung up from JetBlue I had one of those moments. It was a combination gratitude, relief, jangling nerves, and I'm not sure what else.

I had another one of those moments when I received a call back from Jim's doctor about the need for a sedative. He graciously prescribed an anti-anxiety medication. Prior to hearing back from the doctor, I really did not know how we were going to make it home. I imagined a full blown anxiety attack at the airport, with problems going through security, waiting in line, fighting the crowds, on and on.

With the "Meet and Assist" service and some anti-anxiety medication, I think we will be OK. The doctor prescribed enough pills so that I have been able to do a test run to see how Jim responds.

Jim's language skills continue to decline. There are a lot of half started sentences that he is not able to finish:

"It's almost like ..."

"I need to ...."

"Once it will be...."

Follow up questions by me to try to understand what he is saying are generally not helpful, and actually will frustrate him more, with a response like "You know what I mean!!!"

So instead, I have been responding with vague answers myself, such as:

"Maybe..."

"I think so..."

"I'm not sure..."

This seems to work better overall; less frustrating for Jim and less frustrating for me.

I continue to learn as we walk this dementia journey. I read an article recently that enlightened me to the fact that reasoning is an ineffective strategy for someone who cannot reason. This has been a challenging lesson for me to learn. When you think about it, reasoning is the basis for a lot of human discourse. With dementia, the rules change. I still don't have this figured out completely, and probably never will. But I am slowly realizing and trying to adapt to the fact that when Jim is struggling, all my reasoning will likely have very little impact on him, other than to possibly frustrate him.

His brain is dying. But in spite of that, I still have my sweetheart. At least for now. I know that there will come a day where it will be hard, maybe impossible, to see beneath the dementia that has taken over his brain.

Until that day comes, I strive to make the best of each day and appreciate the love and the life that we share together.


18 comments:

  1. That meet and assist program they have is going to be such a help. The airlines aren't as heartless as some of the facebook stories would have you believe. The last time I traveled, they were so helpful to me, had a wheelchair ready and a sweet lady saw to my needs the way your trip has been set up. Hopefully your trip will go as well as mine did.

    ReplyDelete
    Replies
    1. Hi SJ. I had no idea of the wide variety of services that were available. I first learned about the meet and assist service from a blog post written by a mom with an autistic daughter. Thanks for your well wishes.

      Delete
  2. That is so true. His brain is dying, but not his body. Appreciate him while he is still alive and remember the good times.

    ReplyDelete
    Replies
    1. That's it exactly! So sad. And it just seems like he is to young to have this happen to him. So yes, I will appreciate what we have now and will always have our good memories.

      Delete
  3. That was what I did, I tried to reason with her and persuaded her to read the posters I had plastered on her walls. I came home from a short meeting 40min with girlfriend below our apartment. I came home and found her thoroughly upset and all dressed up and ready to go out. She grumbled that she was left alone the whole day... but that was not true.I told her I had gone downstairs for awhile. Obviously she did not remember that conversation. I explained that she should have read the posters and that would help her keep calm. It did not work cos what I said obviously made no sense to her!

    ReplyDelete
    Replies
    1. Hi Swift. Yes, it becomes increasingly hard for those with dementia to fully comprehend the passing of time. As you have discovered, it does not help to try to provide this context; it makes no sense to them.

      We try so hard to help in typical ways that make sense to us, but then discover that our approaches are not helpful, and sometimes make the situation worse.

      Thanks for sharing Swift. It helps to be able to commiserate with others going through this dementia journey.

      Delete
  4. I'm glad you've been able to obtain the airline assistance and medication from your doctor needed for the flight home. Your emotional release is certainly understandable given the uncertainties that have been present. They had to have been gradually building up tension and anxiety even though you may have been trying to stay calm.

    Consistently using all the many different recommendations that you learn about to best handle the various challenges arising, even though you intellectually understand them as making sense, plus trying to remember them when needed, is not easy. You do really well at calling those to mind when needed, then actually using them -- such as you described above, like it's best not to reason -- and then, to give responses in that vague indefinite manner to his incomplete sentences is truly so wise and effective. The ability to make these adaptations as you do is no simple matter under the best of circumstances for a loved one, caregiver, or even a therapist. Do give yourself credit for what you're doing -- and take good care of yourself, especially when you get home and settled again, so you can stay well for yourself, husband and those who love you.

    ReplyDelete
    Replies
    1. Thanks for your kind words Joared. You have the clinical background and expertise to truly appreciate these kind of communication challenges. We had a difficult evening last night. He had completely forgotten (again) our plans to fly home. He was worried that we would not have a place to live, etc etc.

      It's so stressful for him. And I find that in the evening (when I am tired) it is even harder for me to stay calm and handle the situation in a way that helps us both to stay calm.

      Yes, I'm so looking forward to getting home. I continue to show him pictures of the inside and outside of our home. It seems to help him reorient to our home. Last night I finally said "we're both tired; let's wait until morning to discuss this" and he agreed :-)

      Delete
  5. I never realised there were so many people and agencies there to help and thank goodness there are. Your new strategy for dealing with unfinished sentences is excellent and much less frustrating for both of you.

    ReplyDelete
    Replies
    1. Hi Valerie. It is encouraging and gives me hope that there is help. Fortunately I discovered (albeit accidentally) the JetBlue meet and assist service. Hoping for a trip with minimal stress for Jim. It will be so good to get home.

      Delete
  6. My fingers crossed for a safe and easy journey home. He is so lucky to have you, and he will never know how blessed he is in that regard. But we know, and I applaud you for all you are doing today. My heart goes out to you both.

    ReplyDelete
    Replies
    1. Thanks DJan. I'm hoping that all of my planning and organization will help to ensure safe travels. I think we both feel lucky to have each other. He may not always be able to express it, but I know it is in his heart :-)

      Delete
  7. I had no idea such services were available with the airlines. Phew, that has to help a bunch. Also glad you got the anti-anxiety meds. Too bad you can't take one also.
    That is so smart to give him vague answers when he stumbles. He is all ready is having trouble forming his thoughts. The natural response would be to try to figure out what he was thinking and force the issue. I can see where that would only frustrate him further. I am always amazed how you seem to naturally find the best solutions. You are doing such an amazing job.

    ReplyDelete
    Replies
    1. Ha! Yes, I could use on of those pills now and then :-)

      Thanks for your kind words Patti. I certainly have had my share of mistakes. When I look back at my old posts, I can see where I have learned a lot from these stumbles, thank goodness. I don't think there is a one-size-fits-all approach for dementia caregiving, and I imagine that every caregiver goes through a similar process.

      Delete
  8. I so agree with your responses and techniques in working with Jim's mental decline. It's easier on both of you to eliminate as much frustration/negativity as you can when trying to communicate with one another. And, like you, I treasure each day with my husband, no matter how trying it may be. I can also identify with your break-through crying. I do the same. It's purely stress and frustration. I'm glad Jim's dr. saw fit to prescribe an anti-anxiety medication. Blessings to you ... and thanks for your kind comments about my art.

    ReplyDelete
    Replies
    1. Thanks for your comment Tehachap. It always helps to know there are others who share similar struggles. It helps us feel less alone.

      Stress and frustration; quite a combination for caregivers. I know you have a similar journey, and I appreciate your kind, thoughtful comments.

      Delete
  9. I have had some past experiences with the airline assistive services that you have described, travelling with my elderly mom who has mobility issues (and who is anxious in airports and cities). Also when I was on crutches in 2015 with a broken bone in my foot, these services were very helpful when I had to fly for work. I am glad that you have made arrangements that will help make the trip home a bit easier. I hope the travel goes well for both of you, and I am sure that it will be good to get home.

    Jude

    ReplyDelete
    Replies
    1. Hi Jude. It was refreshing to find that we are living in an age of increased awareness and sensitivity towards those in need of accommodation. I am really looking forward to being home! Thanks for your well wishes.

      Delete