Wednesday, February 8, 2017

Dementia: Some Things Change, Some Stay the Same

I had an unexpected health problem over the weekend. I ended up going to an urgent care and ended up on antibiotics and an anti-inflammatory for a swollen, red, painful ankle. I'm on the mend, but it remind me that I am not invincible. Actually, I am very healthy. But no one is exempt from an unexpected health problem. What would I have done if it was something more serious? Of course I am talking about Jim; I don't know the answer, but this has given me a lot to think about.

Jim has become very attentive to me, expressing concern for my health. This is the old Jim that I remember so well. Two weeks ago when I had a cold, his reaction was quite different, almost angry at me.  Dementia has so many ups, downs, twists and turns, many times I just don't know what to expect.

Jim's understanding of money has changed on many levels. He is no longer able to count money, make change, and his perspective on the relative cost of things is way off. The other day we drove by a gorgeous house. I'm sure it was well over a million dollars (beach front!). Jim's comment was that it was very expensive, "probably close to $50,000".

When buying something, I now go out of my way to avoid talking about the price. What ever the price, he will comment that it is too expensive. He was never like this before. Eating out happens rarely for a lot of reasons. We seldom make it past looking at the menu. Reasons for not staying include "it's taking too long", "it's too cold", "crappy menu", "it costs too much". I never try to change his mind once he decides to leave (it would only make him angry). But I have developed some work arounds that occasionally work. If he mentions the price, I immediately tell him I have a coupon for 50% off. By the time the meal is over, he has forgotten about the coupon, his reading glasses are safely tucked away, and I grab the bill.

It's almost like his brain is in an economy from 20 - 30 years ago. So, to keep the peace, I use alternative facts (of course I did not invent that term :-)) Ha Ha.

One thing that has not changed is Jim's sense of humor. It was always a huge part of our relationship. We had one of those easy going, light-hearted loving relationships. Laughter and humor was always a big part of it. Since dementia invaded his brain, anxiety many times gets in the way of being able to appreciate the humor in life, but it still happens at times and boy does that make me happy!

I'm not a big TV watcher. But there is one very funny show that I recently discovered. I smile and laugh my way through each episode! And Jim finds it equally funny! That is huge for me. The show is called The Carbonaro Effect. It is hilarious. It's on Tru TV. So here is something very funny that we can still share, joke about and spend time together enjoying each other's company. Stress free!

I am so thankful that his wonderful sense of humor is still there inside of him. He may not remember what we laughed about 5 minutes ago, but I see it as enjoying the moment as it is happening. I also know that when you are happy and laughing some very good things are happening in your brain that make you feel good. And even if his memory fails him on what he was just laughing about, the feel good happiness remains with him for a while.

I continue to practice distancing to help me deal with the emotional upsets. I found another resource  on emotional distance that I find helpful. The more upsetting the moment, the harder it is for me to remember to use distancing. But I'm working at it, and hopefully it will get easier.

Dementia: some things change, and some stay the same. As our journey continues I know that more changes are headed our way. I hope to continue to look for the positive and appreciate the joyful moments we can still enjoy together.


26 comments:

Sharon said...

Good idea with a 'coupon.'
I hope your ankle is well, quickly.

Carole said...

Thanks SJ, feeling better with each passing day.

Necessity is the mother of invention, as they say. I'd hate to think we would not be able to go out to eat once in a while!

Kay said...

It's wonderful how you're adapting and dealing with each crisis as it occurs. You are such a strong, caring person. He is so very lucky to have you.

Valerie said...

I followed the link on emotional distance and read it right through. Interesting as well as informative. People like me can never know the difficulties faced by people coping with dementia. It was worth reading, Thank you.

Carole said...

Thanks Kay. At the moment of upset, it's hard to focus on staying calm internally. The better I get at it, the more it helps both of us.

Carole said...

Hi Valerie. It's amazing how much information is out there on dementia; the internet is such a great resource! Interestingly, I think the UK does a better job in supporting the caregiver and the person with dementia, compared to the US. We have much to learn from your country.

DJan said...

Your ankle business is troubling, but I'm glad to hear it's getting better every day. And that you have found a program you both enjoy and laugh over. I hear you about the importance of laughter and its effects in the body and mind. You are often on my mind and I so enjoy your posts, especially ones where you have found some relief from the daily emotional difficulties. :-)

Carole said...

Hi DJan. I am so grateful that we can still share humorous moments together! The other show that makes us laugh is Seinfeld reruns. "Laughter is the best medicine" So true!

Jabberwalky08 said...

Laughing together is so precious to me, now - just like for you - I'm so grateful for the sense of humor that we can still jointly tap into from time to time.
Thanks so much for the tv show recommendation!
Jan

Carole said...

Hi Jan. The TV show is about a hidden camera, practical joke by a magician. The part we like best is watching the expressions of people when they are seeing something that they just can't logically explain. It's all done with good taste and good humor.

Arkansas Patti said...

Wonderful to hear that "alternative facts" can be a useful tool. Well done. So glad that Jim still finds humor and you can share it. What a blessing. I wasn't aware of that show but just programmed it to record. Will give it a shot. Thanks.

Carole said...

You have a great funny bone Patti, so I think you will like it :-)

I'm so grateful we can share the laughter. I'm realizing I need to look for the joys in everyday life that still bring us happiness.

joared said...

Oh yes, laugh and release those endorphins! Also, alternative facts are definitely appropriate, even necessary, to use in your situation. FWIW a friend recently reminded me how happy she had been she attended a CEU class for our profession on how to deal with unreasonable people. She had successfully used one lesson:
"Use flattery rather than criticism and never say they are wrong."
Sounded a bit like what you're already doing.

joared said...

Oh yes, laugh and release those endorphins! Also, alternative facts are definitely appropriate, even necessary, to use in your situation. FWIW a friend recently reminded me how happy she had been she attended a CEU class for our profession on how to deal with unreasonable people. She had successfully used one lesson:
"Use flattery rather than criticism and never say they are wrong."
Sounded a bit like what you're already doing.

Carole said...

Oh, I like that Joared! Kind of sums it up. Jim is very sensitive to anything that hints of disapproval, so I try to keep it positive.

Dr Sock said...

Carole, how wonderful that you and Jim can still enjoy humorous moments together!

The ongoing changes that you see (like the difficulty with numbers) must be harder to accept because you know him so well and are always comparing with how he used to be. Yet, at the same time, remembering how he used to be must really help you to empathize with him, and motivate your desire to care for him.

I really admire you for your kindness and generosity of spirit as you go through this very difficult experience.

Jude

Carole said...

Thanks for your kind words Jude. Every once in a while it really catches me off guard, when I see him struggle with something so simple, knowing what a brilliant mind he had just a few years ago.

It helps when I remember that if the situation were reversed, Jim would absolutely be doing this for me.

Anonymous said...

I hope your ankle improves. Laughter is the best medicine. As they say, Joke or You'll Choke.

Carole said...

Thanks Gig, my ankle is improving every day :-) Yes, I find that dementia life is better with humor!

Anonymous said...

Just came upon your blog. My mom passed away from dementia recently and I can understand how difficult it is to have your loved one with this horrible disease. I haven't heard this disease making anyone mellow...instead even the kindest and gentle became quick to anger and sometimes violent. Every brain is different so the speed or slowness will depend on that person. Over the year mom was showing signs but not enough; in retrospect it started showing at least 7 years ago. After the death of my sibling she went downhill in the last 4 years quickly...and it was a matter of less than a year when it worsened, actually the last 6 months before she finally became bedridden. One year prior she was walking everywhere. This is an insidious disease. God bless you. -N

Carole said...

Hi N. I appreciate your comments. I'm so sorry for your loss. Dementia is such a cruel disease. At a time of life when one should be enjoying their retirement, dementia steps in to rob the person and their family of this much anticipated time of life.

You are right, there is a stereotype of someone with dementia being pleasantly confused. I have not seen that either. Instead, the dementia creates a fear for the person, as they desperately try to understand their world. And this fear often is manifested as anger.

Thanks for stopping by. I'm sending you peaceful thoughts as you mourn the loss of your mother.

troutbirder said...

My spouse started with a MCI diagnosis at Rochester Mayo Clinic. We participated in their HABIT program which was especially helpful for me as caregiver. Now three years later she is a volunteer at the Abigail VanBurean Research Center for Aging and Alzheimer's. We have good days and bad days but our two mottos are "We're a team" and "Keep on truckin..." :)

Carole said...

Hi Troutbirder. Thanks for your comment. I'll check out the HABIT program; hadn't heard of it. I love your mottos! It's so true; we are a team and all we can do is keep on trucking'.

Swift said...

Just started blogging and trying to make sense of my mum's Alzheimer condition. Your blog helps me to know if there was more I should be doing for mum. thanks

Carole said...

Hi Swift. Thanks for stopping by! I am so sorry for what you are going through. I checked out your blog and It sounds like you don't have a lot of support for you or for your mum. I'm not sure what country you are from, but be sure to look into what supports (financial, support groups, medical, day-to-day help) might be available to you.

Also, on my side bar, you will find a list of blogs that I follow. The following ones I have found very helpful on this dementia journey: Caregiving in the Forrest, Alice in Memory Land, Welcome to Dementia Land.

I'm glad you're blogging. It will help as an outlet for your thoughts and emotions. Take care.

Swift said...

Thanks Carole :)