Tuesday, August 15, 2017

Dementia and Driving; Plus a Few Updates

I thought I would write a bit about dementia and driving. This was one of the toughest issues for Jim, and for me. Jim has always been a car nut. He appreciated a fine car and always had a sporty car that he enjoyed driving.

Giving up driving is very, very difficult for many folks. Whether it is dementia or some other physical ailment, it still represents a loss of independence. Regular readers will remember that we flew home from wintering in Florida, due to my concern for Jim's driving. By that point, I knew that he should not be driving.

There may be some folks who give up driving without a fuss, but that certainly was not the case for Jim. I have a few strategies that I use to help with this difficult transition:

   * I make certain that I am first out of the door and then quickly jump into the driver's seat. I also get real chatty as we start to head out the door, trying to distract him with conversation so that he won't have an opportunity to think about driving. Most times this works, and Jim just meanders over to the passenger side.

   * Be ready with excuses. A few times Jim would knock on the driver's window and tell me he wanted to drive. I would respond cheerfully with "OK. But I have to run into the house to go to the bathroom. I'll be right back." I would then go into the house for a few minutes and then return to the garage to inform Jim that I had an intestinal upset and needed to stay home. This always worked. He is fearful of being without me, so I never worry about him wanting to drive away without me.

   * Distraction and strategic positioning: When returning from the store (or any other outing), I position myself as we walk across the parking lot so that it is  natural for me to get in the driver's seat. I also put any package/groceries in the back seat on the passenger side, and then open that door for Jim as I quickly go around to the drivers side. I also do the chatty conversation, trying to distract so that there is no opportunity for him to ask to drive home.

   * Be ready with more excuses. I've never had to use it, but if we were out and about, and heading back to the car, I am ready with another tactic should he suggest that he drive home. I would simply say "We received a notice that your license has expired. We better go home and check it out." His memory is so poor, that once we were home this would be long forgotten.

I have read of ways to rig the car with a kill switch, but I've never felt that I needed to resort to this tactic.

******************************************************************************

Some updates: Jim's communication skills continue to decline. He has started to use what is called neologisms, which are made-up words. It is increasingly difficult to understand what he is trying to say. So, how do you respond to someone when you have no idea what they are saying? Obviously I try to take current circumstances into account. Also, I respond differently depending on his mood. If his mood is good I respond with saying something upbeat, positive or neutral, depending on the circumstances. Examples: "You are right about that." "I believe that is so." "I agree with you on that." If he is upset, my approach is a little different: "Everything is all set." "I will take care of it." Sometimes I say "show me" if I think he is able to point out what is bothering him.

I don't always get it right, but it works better than trying to quiz him about what he means. It is very upsetting to him if he thinks I don't understand him.

Jim's brother came for a visit last weekend. There will be a bit of a learning curve, as he learns how to best communicate with his brother. The hardest part for him was to make sure to include Jim in conversations, rather than talking around or over him. By the time he left, he was doing much better at this. He seems receptive to my guidance and expresses a very real desire  to be of help to both of us. I continue to be cautiously optimistic that this may turn out to be an opportunity for some very real support to me. He plans to come in every other weekend. Eventually I'm hoping that it gets to a point where I feel it is OK to leave the two brothers alone at home, while I go out by myself  for a bit. I can't wait!

There is a website I want to share with those who are caring for someone with dementia. It is connected with an Alzheimer's forum in the UK. In all of my searching I have found this to be the best forum. It is called Talking Point.

Well, that is the latest in our world of dementia. Thanks for stopping by.


 

16 comments:

Sharon said...

A kill switch might be a handy thing to have, just in case.
Sorry things are running downhill with communication skills. I am glad his brother came and will be visiting more frequently, I am sure he will be a help.
I think of you often, take care.

Carole said...

Hi Sharon. The good thing about my car is that it is a push button start. So with the key fob in my purse, Jim could sit in the car by himself, and not be able to start it. He doesn't understand the whole push button start/key fob.

Thanks for your kind words Sharon. And I hope you had a marvelous birthday!!!

DJan said...

I sure hope Jim's brother will be coming up more often, now that he sees how much you do to keep Jim safe. You need a break, and I see that there is some light at the end of the tunnel, with family members stepping up. You continue to amaze me with your coping skills.

Carole said...

Hi DJan. I was quite impressed and relieved to see that Jim's brother wants to be a support to both of us. Prior to visiting us, he had no idea "how bad things were" (his words). It's hard for him, to see his only sibling suffer with this cruel disease. We'll see how this plays out, but I am hopeful. Thanks for your comment DJan.

Tehachap said...

I am so impressed with your ability to think of ways to protect Jim from frustration (his desire to drive probably being #1). How far away doees Jim's brother live? That would be really wonderful if he were able to help relieve some of your burden and give you some respite. I have to relate a humorous (to me) incident from yesterday morning. My husband told me he felt he needed to be more self-sufficient when it came to his care, because if anything happened to me, he'd be lost. I agreed and said I would try to allow him to do more on his own. That very afternoon, he came in and asked me which pills he needed to take next. I reminded him of his request that morning about being more self-sufficient, and he said, "Well, o.k., but not right now." LOL I do worry at times about how dependent he is on me for his care, but considering the fact that he underwent a laser blast procedure for Kidney Stones on Monday, I feel my assistance right now is expected and necessary. Does Jim realize what's going on with his mind? Was he ever cognizant of the changes taking place in his mental state?

Carole said...

Hi Carol. Love your funny story about your hubby! Jim's brother lives about 3 hours east of us. He is retired, so has plenty of time on his hands. I'm grateful for his desire to become involved.

As far as Jim being aware, he never acknowledged that anything was ever wrong. This made it very, very difficult to discuss/plan/get help for him. If he was ever aware, he never let on to me. In the very early stages it would have been helpful and meaningful for us to be able to talk about it. But since that never happened, at this point it is a blessing if he is not aware of how limited he is. I can only imagine how devastating it would be to him.

There is a medical term - anosognosia - which means a condition where someone with a disability is unaware of it. Jim's doctor suggested that this was the case with him.

Thanks for your comment, Carol.

Arkansas Patti said...

I do hope Jim's brother can be a real help for you and Jim. So far your driving plans seem to work. I am so glad he doesn't want to drive by himself. When I worked for the turnpike, too often we faced drivers who had no idea where they were.They had gone out for milk and were at least a hundred miles from home. We would corral them and call the FHP to find their families for them. Heartbreaking.

troutbirder said...

I dreaded the driving issue becoming reality for quite a while and when it did and in the course of an open discussion with her Mayo doctor the issue came up and we all discussed the legal implications and complications. "Well, she said, I just quite driving. "
At which point I volunteered to be her "full time permanent chauffer". I still smile when I think of how easy that was... Other things not so much.

Carole said...

Oh, now that is scary! Before I figured out a strategy that worked for us, there were a few frightening episodes. Fortunately no accidents and no one was hurt. The thought of an innocent person being hurt, possibly killed weighed heavy on my mind. Thanks for your comment Patti.

Carole said...

Hi Troutbirder. I am so glad that your wife is aware of her situation and is willing to accept and talk about it. And that was one very smart doctor who raised the issue, so that you didn't have to. I love how you offered to be her full time chauffeur. What a sweetheart you are. You know how hard it is for her to give up her driving independence, and you have managed to respond with kindness and respect. Your wife is lucky to have you! Thanks for your comment.

Anonymous said...

I am always amazed and also admire at how you think out all the possibilities and remain so kind towards Jim at the same time. I know you're only human, but you're some kinda amazing human! ITA his brother helping would be a good respite for you plus it's someone he's familiar with so won't get upset vs. a caregiver who's a stranger. God Bless you and Jim. -N

Carole said...

Hi N. Thanks so much for your kind words. I know if the situation were reversed, Jim would do the same for me. Our love is such a strong bond; without that bond this journey would be so much harder. I definitely have my moments of discouragement and despair, but my overriding feeling is one of empathy for Jim and what this cruel disease has done to his brain.

You are right, that a stranger would be hard for Jim to accept as a caregiver. So I'm grateful for his brother's interest in helping both of us.

Sue said...

Good for Jim's brother for visiting and offering his help. I am sure it wan't easy for him to see how Jim's condition has progressed since he last saw him. Too bad he lives so far away but even helping out once in a while will be helpful and good for all of you. That feeling of empathy you have for Jim is something I admire so much in you and it shows through in all of your posts. I try to remember that in situations I am in with my father in law. He has been in assisted living for four months now and is having difficulty adjusting. I remind myself that I too would be sad and grumpy with all of those changes happening so quickly. I try to learn and empathize every day. Thanks for your posts and take care.

Carole said...

Hi Sue. Thanks for your comment. I'm so sorry to hear about your father-in-law. Dementia is such a cruel disease, and it manages to reach all the family members and friends of the one afflicted. It sounds like you are able to empathize with your FIL's situation.

I find that with Jim, when he struggles or is frustrated, if I take the time to give him a hug, a kiss and offer some reassuring words it will many times take the edge off of his unhappiness.

Dr Sock said...

Carole, I love the strategies you have implemented to ensure that Jim doesn't drive. At the same time, you have managed to to avoid upsetting moments, and preserve his dignity. Your final comment about a giving a hug or kiss, and saying reassuring words also is so wise. This works well in any relationship, regardless of whether dementia is a factor!

Jude

Carole said...

Hi Jude. I'm so grateful that my insight and intuition have served me well on this journey with Jim. Remembering how he is experiencing life and how this has effected him serve to improve my sensitivity for our situation. I always say how lucky I am that we had a relationship that was and is, full of love. Thanks for your comment Jude.