Saturday, April 1, 2017

Mr. Dementia and Jim Return Home

It's good to be home. We've been home for 5 days and we are settling in.

The morning we were preparing to leave FL, Jim managed to bump his head twice, really hard. It quickly turned into "Why did you hit me in the head three times?" He was so angry at me. In his mind, I had indeed hit him in the head, so of course he was very angry.

Remembering that you can't reason with someone who is incapable of reasoning, I simply apologized and said it was an accident. It did not do anything to dissipate his anger. It was especially worrisome given that he had already had one of his anti-anxiety pills. I knew we were in for a long, difficult day. And remembering that Mr. Dementia is NOT Jim (and vice versa) helped me to maintain my calm. I'm not saying I wasn't stressed out (I was!), but separating Jim from dementia always helps me when I am at my lowest point. Damn dementia.

I gave him a second pill. (This part is tricky, because for years he has had a few pills in the morning and a couple of pills in the evening. Giving an extra pill means I have to make up a story about how I forgot to give him his daily aspirin.)

By now, he is pulling items from the suitcases and throwing them around.

At this point I'm wondering if we will make it to the airport. It's a long story, and it was a long day, but suffice it to say that we made it home safe and sound. A total of 4 pills were given. Without them, I know that we would have not made it home. The anxiety level was very high, even with the pills.

The "Meet and Assist" service through JetBlue was of minimal help. When I initially requested this service, I requested a notation that Jim's deficits were dementia and anxiety. I'm certain that none of this was relayed to anyone. In retrospect, I think that because Jim's deficits are not visible, people assume that we are OK. At check-in we were supposed to be met by a helper. Didn't happen. The clerk eventually found someone to help us, but this young woman also was assisting an elderly couple, one of whom was in a wheelchair. The woman barely glanced at us, never said a word, and proceeded to ignore us the whole way to security. The one thing that was helpful, was that by following her, we easily found our way into the prescreened TSA line; we did not need to remove shoes, take out laptops etc.

There were a couple of tense moments. I needed to use the restroom. I situated Jim directly across and asked him to just wait until I came out. Unfortunately there was a long line. I went back out, warned Jim that it would take quite a while due to the long line. I worried the whole time. He was OK by the time I was done. I did not see one of those "Family Restrooms", which would have been perfect; we could have gone in together.

Prior to boarding, I went up to the desk (alone) and asked if we could board first, giving an explanation as to why this was needed. This part worked great. We were the first to board, giving us a chance to settle in prior to the regular boarding.

When we arrived home, Jim seemed to remember everything about our house, with the exception of new furniture that we purchased last summer for our great room. He still keeps asking "who bought this?".

While we were in FL, our friend Mike would come over weekly to do a walk through of the house and to start Jim's car (Honda Accord). Mike used the empty bay in our garage to store his mustang convertible. Mike took his Mustang home prior to our arrival.

Jim is totally confused about his Accord. He insisted that the car is not his, that it belongs to Mike. Showing him the title, the registration, bill of sale etc all in his name did not convince him. He had a brief time period two days ago when he realized that it was his car, but that did not last long. Part of his confusion may stem from the fact that he knew Mike was going to store one of his cars in our garage over the winter. So maybe he transposed some of the facts, thinking the Accord was the car Mike stored...I really don't know.

So, the plan is to wait out the weekend, and if Jim still thinks that the car belongs to Mike, then Mike will take it home with him. This certainly would solve the issue of driving. My concern is that with Jim's car gone, will he want to buy another one? Or, will he suddenly remember that the Accord is his, and wonder where it is?

In the back of my mind, I've always known that eventually I wanted Mike to have Jim's car. Mike and Jim are both car nuts. Jim's Accord is a beautiful black,sporty, V6, two door coupe. It only has about 28,000 miles on it, so still like new. If Mike could have this car now, it might solve the problem of Jim driving, and Mike could start driving and enjoying the car now so that it doesn't develop problems from disuse. We'll see how all of this plays out.

Jim  needs some minor help getting ready in the morning. "What do I do next?" Where is ...?" But all of this is fairly easy for me. I find that it takes him a very long time to get ready, including a few (sometimes several) changes of clothes. But all of this is doable. I know that much greater challenges are ahead for both of us.

It's so good to be home! And I think Jim feels the same way. Yesterday there was no need for any anti-anxiety pill. Hooray! I focus on low key, low expectations, minimal social activities, and a very calm environment. I'm hoarding the pills that I have left. We will be seeing his new doctor (gerontologist) in about 3 weeks, and I am expecting a longer acting, safer medication to help Jim with his anxiety. In the meantime he has an appointment with his eye doctor on Monday. His glasses are broken beyond repair. I have several pair of "readers" for him, but he is anxious to get "real" glasses. I know that the day will be incredibly stressful for him, so will give him one pill in the morning and one pill just before the appointment. Fingers crossed it all goes well.

Another post is written. As always, my heart feels lighter. Thanks for stopping by.




16 comments:

  1. It does sound as if the trip was stressful, for you. Were you planning on a return trip next winter or was this it?
    I'm happy to hear that is all behind you and you can relax a little. Have you set up any people to come stay with him so that you can get out for activities? Sorry if I sound like a nosy neighbor. I hope the two of you have a pleasant weekend.

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    1. Hi SJ! No, I don't think of you as a nosy neighbor, just a caring blogosphere friend :-)

      We are done with traveling. When I first planned this trip, I had no idea that Jim's dementia would progress as rapidly as it has. I also did not fully appreciate how stressful all of this would be for him. Lesson learned.

      Jim's friend Mike has agreed to help me out. He is more than willing to stay with Jim when I need a break, have an appointment, go see my mom etc. I am so grateful for this. Starting next week on Wednesday. I am looking forward to a few hours to myself :-)

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  2. I'm glad you both made it home safely. It seems like a Herculean task to me. As always, I read this with an eye to my future since dementia runs in my husband's family.

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    1. Hi Marty. Thanks for your comment. It was a very difficult day of travel. But thankfully we had someone drive our car home for us, so instead of 3 days of anxiety and confusion, it was just the one day.

      Jim's mom had dementia diagnosed in her 60's. My dad developed Lewy Body dementia much later in his life, in his late 70's. I'm grateful that so far, my cognition is intact. I have an aunt and uncle who both have been diagnosed with dementia; so sad.

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  3. I'm glad to hear that you have someone to stay with Jim so you can go out on your own without the stress of caring for Jim as you do your errands. I think of going out with an 18 month old child and how difficult that can be when i consider what you must be handling.

    I do wish the airline had been more thoughtful of your needs. We all need to be aware of those around us who are dealing with difficult situations such as yours. As you said, you may not look like you need help, but you do.

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    1. Hi dkzody. I am so looking forward to a few hours for myself! I have a list started of my priorities, and it includes seeing my mom, doctor appointments, getting my hair done, and a trip to the YMCA to attend one of my favorite classes. So grateful for Mike's help.

      Your analogy to an 18 month old child is pretty close. Young children have difficulty with perspective taking. And Jim has lost a lot of that ability.

      Thanks for your comment.

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    2. A stressful time for both of you. Unless faced with your situation one cannot really imagine what it must be like.
      I am glad you are safely back home and looking forward to some 'Me' time.

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    3. Thanks Valerie. Yesterday I managed to empty the last of our suitcases and also did some organizing and cleaning while Jim was napping. I find if I take advantage of those times, I feel better about things. So good to be home :-)

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  4. I too am hopeful that you will be able to get some longer lasting medications for Jim. And so glad you are home! :-)

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    1. Thanks DJan! I am so looking forward to this appointment. It feels good to have hope :-)

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  5. I can imagine the relief you felt when you walked in the door of your home and Jim actually recognized it as HIS home too. I'm wondering if there will ever come a time when Jim realizes he has dementia. Part of me doubts it -- and if he did realize it, he wouldn't understand it or be able to internalize what that diagnosis means to him and you. Such an incomprehensible disease... glad you'll get some 'me' time. You deserve it!

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    1. Yes Tehachap, I agree that it is doubtful he will ever fully comprehend what is going on in his brain. Every once in a while he'll say something like "I can't remember" or "I'm confused". I always downplay it so as not to add to his stress. I tell him I forget things too :-)

      Yesterday he asked where our dog was. Our faithful black lab died over 5 years ago. So I gently reminded him about the circumstances of his passing. It was pretty sad. And then a few minutes later..."Where is our dog?" Such a terrible, cruel disease. I can only hope to soften its impact for Jim as the disease progresses.

      Thanks for your comment.

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  6. I guess you should think twice about traveling with Jim. It's too arduous for both of you and not worth the trouble.

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    1. Hi Gigi. We will not be traveling any more. It is just too stressful for Jim, and for me. Not looking forward to the harsh winters, but it really is the best decision for us. Thanks for your comment.

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  7. Glad you're home safely. I think you're probably correct that people generally only understand ailments that are visible to the eye -- missing limb, can't walk, etc. Likely they don't have the foggiest notion of what it means if told someone has dementia. How much of what you explained got transferred to person meeting you for Jet Blue is anybody's guess.

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    1. H Joared. I am certain there are many disabilities/medical conditions that are invisible to the casual eye. As the baby boomers age, it is likely there will be even more cases of dementia, in one form or another. Just from my own perspective, I see the potential problems looming ahead for our country. With no real medical advances in a cure, I don't see a lot of hope. We need a Joe Biden (advocate for cancer cure) for dementia.

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