Jim has done remarkably well on the citalopram. It helped with his anxiety and some of his compulsions. He is on the maximum safe dose. However, the last couple of weeks there was an increase in his agitation. It was pretty hard to watch.
Around the time that I noticed this change, I started keeping a daily notation of how the day went with regards to anxiety and agitation. I've always used Florida (this past winter) as my baseline. It was then that his anxiety and agitation was at its highest. The last couple of weeks he was averaging between 5 - 6. For comparison, on Jim's most difficult days in Florida, I would rate it 2 - 3. So it was better than this past winter, but still pretty rough at times.
About a week ago, he told me that he was leaving. He was quite agitated and insisted he had to "get out of here". When I asked where he was going he said he couldn't tell me. It was a very hot day. He tucked a pair of blue jeans and underwear under his arm and headed out the door. I calmly said "Why don't you wait until after dinner? It will be cooler then." He agreed! And of course by the time we had dinner, he had completely forgotten about his plan to leave. Phew! But I wasn't really too worried about him actually leaving. His fatigue these days is such that he would not have made it much past our house.
I called Dr. S. for some guidance for this recent increase in agitation and anxiety. She reminded me that most folks with such advanced memory loss will require additional medication for help in controlling the increase in anxiety and agitation, especially with the progression of the disease. She advised me to start giving the Seroquel every day, instead of as needed. She felt that for Jim it would work better if given every day.
I admit I was uncertain that this would work. However I am pleased to report that thus far, he seems to be doing much better. The last 3 days were all 10's. I know that there will still be hard times ahead for us, but this improvement is so very welcomed at this point in our journey.
I should add that my scoring system does not account for confusion. His everyday confusion continues to worsen, with some days being better than others. But this is the normal course for dementia and is not terribly difficult to deal with.
On a different note...Can you imagine how frustrating it must feel to be experiencing discomfort or pain, and not be able to relay to others what is happening? This happened to Jim three days ago. Through my intuitive detective skills, I was able to determine that Jim was having problems passing urine. Given his recent difficulties with bathroom related issues, I have been paying very close (but discreet) attention to these kinds of things. And even though he could not tell me specifically what was wrong, or even respond very well to my questions, I was able to ascertain what was going on.
A quick call to Dr. S (thank goodness it was Friday and not the weekend!) and she agreed with my assessment and ordered an appropriate medication for Jim. He has a history of BPH, and as the condition worsens it can cause problems starting the stream. Hooray for Dr. S! The medication works, and within two hours, all systems were go.
But it is a very sober reminder to me that with Jim's declining vocabulary, it will become more challenging to figure out when there is something medically wrong.
The really good news....Jim took all of this in stride! Yes, he was more anxious initially, which could have easily turned into agitation. But it didn't! So much to be grateful for.
I was scheduled for my mammogram earlier today. I tried my hardest, but was unable to arrange with the office for Jim to accompany me. So, Mike met us there and pretended that he was waiting for his wife. Mike suggested that he and Jim wait outside on a bench. Hooray! Another success story. So grateful for Mike.
He continues to mix up his pronouns, but I am becoming accustomed to it. Earlier today we shared a tender moment:
Me: "I'm so grateful that you are my husband"
Jim: "And I'm grateful that you're my husband too!" 😍
A rough two weeks for Jim and dementia, but I feel like things have turned a corner, at least for now. Thanks for stopping by; I so appreciate each one of you!
22 comments:
Ah, tough days for both of you.
Hi dkzody. It's a journey, for sure, and not one that I planned on making. But I'm grateful for the tender moments we still can share. The other day as I was helping him with his shower, he said "You're my buddy, my best friend." I think it was his way of letting me know how much he appreciates me. I savor these moments, and it helps me get through the tough times.
Jim's wanting to "Get out of here," must be a pretty common feeling with those with dementia. I've heard of several who tried to steal the car keys, and of course, the ones who wander off might have had the same plan. Good thinking to wait until after supper when it's cooler.
Happy to hear you caught the problem with his BPH on a Friday! Weekends can really be bothersome.
I'm glad you are his husband too. :D
Thank goodness for people like Mike who help save the day. I wonder if I would cope as well were I in your shoes.
Hi Sharon. Thanks for your comment. Yes, I was so glad it happened on Friday. Otherwise, it would have necessitated a trip to the ER.
I'm always trying to be one step ahead in figuring out what works best for Jim. I'll never forget one of your past comments when you said "it will work until it doesn't". You are so right on that one!
Hi Valerie. Mike has been a life saver. He is very in tune with Jim's needs. He is willing to help in any way that we need him. Can't ask for a better friend than that.
I think you are underestimating your abilities. I think that as life circumstances come our way, somehow we manage to find the wherewithal to cope. I know you had your own challenges at the end of Joe's life. Everyone's challenges are different, but somehow we manage to find our way through the forest of difficulty.
Thanks for your comment Valerie.
That's a helpful strategy - relying on the memory loss, you suggest "later"....I'll try to remember this one!
Thanks for this blog post, Carole.
I look forward to your posts, because I know I'll be learning more about how to cope if this situation ever arises for me. Dementia is such a terrible disease and you describe how you are managing very well. And I'm glad Jim is more calm, even if it's medication induced. I cannot imagine what it must be like for him.
Hi Jan. At the time I was feeling a bit desperate, but managed somehow to not convey the feeling. The "later" strategy surfaced, and I'm glad it worked.
I remember way back when I realized that you can't rationalize with someone is not capable of responding to/understanding a rationale. I'm so glad that we have each other to learn from, and to support each other. Our journeys may be different in the specifics, but so similar in the heartache.
Thanks for your comment Jan.
Hi DJan. You are absolutely right, when you say that it is hard for us to imagine what it is like for him. We can try to understand, but we won't really know what it is like to live in a world that is so high anxiety and fearful. I think it is this knowledge that helps me to be a better person for Jim's sake. I always try to remember what it must be like to live inside this dying brain of his :-(
Thanks for your comment DJan.
You brought up a point that I think sometimes gets overlooked. As frustrating as it has to be for you to constantly be on the alert and trying to analyze what Jim needs, his frustration must be three fold since he can't communicate his problems. Thank goodness he has you who makes the EXTRA effort to foresee his fears and discomforts. You really are amazing.
Hi Patti. I do try. I'm grateful that my personality is such that I am a patient person. Jim has really slowed down with his walking pace. I'm sure it is part of the continued decline, as well as increasing problems with balance. I can't remember if I blogged about this, but we were walking in the yard and he actually fell (no injury). The unevenness of the ground made it all the more challenging for him to keep his balance.
Funny story: when we first met, we both discovered that we were both extremely fast walkers. No lollygagging for us! He swore it was one of the things that attracted him to me :-)
I've learned a new level of patience as the disease progresses. But I can't give myself too much credit for it; it really is a result of empathy for him, his situation, and how he has absolutely no control over it.
Thanks for your comment Patti.
I had to smile at Jim's comment about you being his best buddy... that's one of the things that helps to make a marrage--friendship as well as love. A bit of the old Jim came through in that moment. Nice to see... Glad you could increase the dosage of a medication he's already on rather than adding a new one to the mix. So very glad it's working for Jim. It truly is a learning experience. Hugs and thanks for writing...Carol
Hi Carol. Yes, I am so grateful when I get glimpses of the old Jim. And, I am grateful for the solid relationship we had prior to the onset of this cruel disease. I can only imagine how difficult caregiving would be if you did not have a close relationship to begin with. Dr. S. certainly knows her stuff, I feel like she is in our corner, as we navigate this journey. Sending hugs right back :-)
"Why don't you wait until after dinner? It will be cooler then." Reminds me of story my mother told me about my decade older than me brother when he was a teen. One night after I'd gone to bed, my brother had been told "no" on some request to go out late. He became angry and loaded many of his clothes and possessions in his old Model A Ford, announcing he was leaving home. When asked, my brother said he didn't know where he'd go, but could sleep in his car, since it was quite late by then. At his 6'2" height, Mom knew she couldn't physically restrain him, so when he finished loading, and was ready to walk out the door, in desperation, but calmly, she said, it's so late -- if the police find you sleeping in your car or something happens to you, they'll hold me responsible because you're still underage. Why don't you sleep here tonight, I'll fix you a good breakfast tomorrow and you can leave in the morning? He decided to stay the night. He got up the next day and for the next week as he came and went from our house, each time he came in from the car he carried some of his belongings back to his room and nothing more was said about the matter. I know the situation is different, but thought you might get an appreciative chuckle from this tale.
Both instances, yours and my Mom's, confirm what I learned in my work --'that offering people choices when possible can be more effective than giving directives or arguing. I know it isn't always possible, but am glad for you and Jim that your quick thinking and his ability still to understand allowed a most desirable solution to a potentially difficult situation. The calmness of your voice would have been reassuring in itself, I'm sure. Those nonverbal features are so important to calm anxiety I think -- tone of voice, inflection, level of loudness, facial expression -- also, touch. Mike gives real meaning to the word friend and so glad he's available -- likely pleased to be able to offer a truly helpful assist -- that you've been able to explain what you need and are comfortable calling on him. Friends often want to help, but don't know how, and some people seem unable to accept or ask for help.
Hi Joared. Love the story about your brother! Your mom was a smart cookie, knowing how to offer his a choice that allowed him to "save face". Thanks for sharing.
Many, many years ago in my first career (I was lucky and had two), I taught a communications class to new employees who would be working with folks with developmental disabilities. Many of the disabled were profoundly compromised. My challenge was to help new staff understand and appreciate the value of kind communication with these folks. The emphasis was on all of the things you mention, inflection, tone, facial expression, touch; in other words, all the non-verbals. It is a skill that is not always well understood or appreciated.
Thanks so much for sharing your thoughts Joared. You have a wealth of experience, and so much to offer.
FWIW I became a SLP midlife -- my second career, too. Previouslly worked in commercial TV though mostly not on camera.
I am glad the pain has subsided and that you are resourceful when dealing with this type of issue.
Hi Gigi. Yes, resourceful is a good word to describe what I try to do. Some days I'm more resourceful than others. Resourcefulness and keeping a proper perspective are both important in the world of dementia.
Continuing challenging times with new unwelcome elements. Sending positive wishes for calm to you.
Thanks Joared. I so appreciate your support.
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