A good friend of mine, who understands our struggles, asked me a couple of weeks ago if I regretted our trip to FL. At the time I said no, that in spite of the challenges, it was worth it. Now I am not so sure. Will I still want to do this again next year? I don't know.
Jim continues to have significant, intermittent problems with his memory. His confusion is not as profound as experienced in our travels from home to FL. But still, enough to be concerning. He occasionally asks if we are married, asks if I have any brothers and sisters, how long have we known each other, and so on.
I have wisely chosen to minimize social activities with others. I'm finding that it is just too overwhelming for him and often leads to upsets, anxiety and more confusion.
I become overwhelmed when I think about our trip home. To that end, I have been talking to Jim's friend, Mike, about having him fly here, drive our car home, and Jim and I would fly home. The flight would be a 3 hour direct flight. The hard part of flying home would be navigating Orlando International Airport. If you've ever been in this airport you will know what I mean. It is overwhelming even to someone without dementia! And, I would have to come up with an excuse as to why we were flying home and having Mike drive our car. (Maybe a "mom emergency"?). I'm still thinking this through.
The progression of Jim's dementia continues. As I look over the last year, it has been a fairly steady loss of skills and memory. It seems to be a fast progression, at least to me, but I also know that every journey is different. I've also have heard that the younger a person is, the faster the decline.
I'm reading a great book The Telomere Effect: A Revolutionary Approach to Living Younger, Healthier, Longer. This is the description by Amazon.
"A groundbreaking book coauthored by the Nobel Prize winner who discovered telomerase and telomeres' role in the aging process and the health psychologist who has done original research into how specific lifestyle and psychological habits can protect telomeres, slowing disease and improving life."
The research was done on stressed out caregivers. And the best part is that the authors provide very specific things that you can do to manage the stress and show that you can change your response to the stress that comes from caregiving. This in turn, lengthens the telomeres, providing you with a healthy, longer life.
Some important concepts of the book:
- Resilient thinking
- Trading pain for self-compassion
- Waking up joyfully
- Distancing (mentally) from negative thoughts and emotions
As I read the book, I'm pleased to discover that there are some things that I am already doing. For example, they talk about the dangers of ruminating over negative thoughts and emotions. I'm pretty good at letting this stuff go. I'm quick to forgive and move on.
Probably the hardest part for me is when I am in the moment of one of Jim's upsets. I had some practice this afternoon when he became angry and upset "Why do you always tell me things I already know?!!!" (He said this after asking where the garbage recepticle was, and I answered.) This was a minor upset that didn't last long, but gave me the opportunity to practice resilient thinking and distancing mentally from my negative thoughts and emotions.
So the journey continues. I'm grateful for the learning opportunities along the way. And I am grateful for all the kind readers who stop by as we learn, support and encourage each other.
20 comments:
Hello from Idaho and found your blog though Sj. I sure hope you don't mind me asking a question about his cognitive. Does he goes to therapy for it. I do in home care and I take one of my client to a speech therapist and part of it to help him in time related stuff.
Sorry if I seem forward and pushy.
If you find the time stop in for a cup of coffee.
Is there a smaller airport within a few hours of Orlando that has direct flights, like maybe Tampa? My husband is not as far along as your husband so he can still fly. I have a friend whose husband is farther along and in full denial of any deficits. She had a nightmare trip when she took him to Europe in the fall and said never again. My husband has stabilized with Aricept and Namenda but I know the damage is still occurring. It is like standing on a floor knowing the floor joists are being eaten away by termites. One day the floor will collapse and life will change again. His doctor said he needs to keep walking everyday and that that has been shown to be the most helpful to keep damage at bay. To make sure he walks, we got a dog when our old dog died. Who knew I would pick a dog who does not like to walk unless the conditions are perfect? It will definitely not be the retirement that I envisioned. I don't know whether to keep working as long as possible since I enjoy it or quit to spend time with him.
Here in the UK there is a TV 'soap' that is currently dealing with dementia. It is brilliantly acted and gives the viewer an insight into problems experienced and faced by the partner. It has now reached a similar stage to the one you describe. I think of you every time I watch it and pray for you both.
Hi Dora. Jim is not aware of his deficits. Anosognosia is a lack of awareness that one is impaired, and is sometimes found in dementia. So for that reason, managing his medical care has been tricky. In some ways it is a blessing; if he was aware of his cognitive impairment, he would be very depressed.
Thanks for stopping by. I'll definitely check out your blog :-)
Hi Karen. Thanks for your comment. There is a smaller airport (Daytona) about 90 minutes from where we are. But no direct flights home, so that would mean a layover in NY city.
I'm sorry for what you are going through. I know what you mean; it does feel like the "floor will collapse" from under you, and life will change again.
I'm in the process of changing his health care to a gerontologist. His first appointment will be in April. I'm looking forward to some help and support. The Aricept and Namenda does provide some stability to the symptoms, even as the disease progresses. I am definitely open to trying medication if it would help to bring some stability at this point.
I so appreciate your comment. It always feels good to correspond with others who are walking the same journey.
Valerie, is the TV show " Living With Dementia; Chris's Story"? I've read a bit about it and it sounds fascinating. I'd love to watch the series. I'm going to pursue this a little more to see if that is possible.
Thanks for your kind words Valerie :-)
Hi Carole,
We had a travel snafu when I became sick and couldn't drive us back home the 7 hours from Albany. Incredibly, family came to the rescue, driving us and our car to the halfway point, and other family met us there and took us and our car all the way to our house. Amazing!
In your case, perhaps someone could fly down and all get in the car and you and the other driver alternate, getting the trip down to perhaps one night in a motel? Just an idea. At least gives you company. Might not be an improvement over flying, but an idea.
My thoughts are with you!
I think Tampa is not too far, since that's where I fly in to visit my sister. She has told me that Orlando is also an option for me. There are many direct flights. But I can see why you are concerned about a car trip home. My heart goes out to both of you for your plight. I'm glad you are blogging since you realize that there are many of us concerned for you both.
Wow, thanks for sharing your experience. I know that you know exactly how I feel!
The one problem I had driving down (that I did not write about) was that Jim insisted (ordered me!) to pull over and let him drive at certain times during the trip. It was pretty traumatic for both of us. He didn't quite realize who I was, and didn't want me driving! It makes me want to avoid the whole driving experience, even with Mike in the car.
Since our arrival, I pick very close locations (a few blocks, low traffic, no lane changes) and suggest he drive. It seems to satisfy his need to drive while we are here.
Hi DJan. Tampa is actually on the opposite coast of where we are, about 2 hours away.
We'll see. At least I have time to figure this out. Thanks for your kind words:-)
No, it is an ongoing serial (soap) called Emmerdale which is about life in a certain community in the Yorkshire Dales, UK. I know it is all acted but the realism and educational side is very good.
I'm not sure if Jim would be open to it, but you might consider arranging a wheelchair and a porter to wheel it (so you can remain at his side) as you navigate the airport.
Good suggestion, thanks! Not sure if Jim would agree to that, given his lack of insight into him limitations. But maybe he would if I presented it as a way to prevent fatigue. He is always very fatigued and readily acknowledges it.
Thanks! I just found the website where you can view the different episodes.
Considering the challenges of driving, it seems you have hit on a better alternative by flying. Hope you can work it out. Do sedatives work on Jim at all or just confuse him more.
I am glad you are seeking ways to help your own health.
Good question about the sedatives Patti. I don't really know. I never was able to establish a good working relationship with his previous family doctor. I'm hopeful for some positive changes with the gerontologist and am open to medication to help him manage his symptoms.
Stress can kill you, so it's good that you are avoiding negative thoughts. David says that quitting his stressful job added 20 years to his life.
A lot of people are not aware of the impact stress can have on your life. Glad that David was able to make that important life change!
This sounds like a really tough dilemma. Given the level of Jim's confusion that you have described, it is worrying that he sometimes insists on driving. That does not sound safe for either of you, or for others on the road. Carole, I hope you find a good solution for the trip home.
Thinking of you,
Jude
Thanks Jude. I'm feeling better about all of this. I have purchased airline tickets for our flight home in March., so no worries about driving for the trip home.
For the most part, Jim is often worried about getting lost or being away from me. This allows for me to drive almost all of the time. On the drive down, the time when he insisted on driving, he did not know who I was; thought I was an acquaintance.
Such a terrible disease. I have some options after we return home that I believe will keep Jim from driving. More on that later; stay tuned.
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