Saturday, November 19, 2016

What I Didn't Know

I'm still learning. I wish I knew everything there is to know about dementia and cognitive impairment, but of course I don't. I am grateful that I approach this journey with an open heart and an open mind. I truly believe that it is the only way that I can be of help to Jim as we travel this dementia road together.

Jim has been going to the same dentist for many years. The dental practice was about a 40 minute drive from our home. In addition, Jim was becoming less happy with the practice. I don't know the basis for his dissatisfaction, as he had a hard time clearly articulating his concerns. He drove to his last appointment 6 months ago.

Given the issues with driving and his increasing unhappiness with his dentist, I suggested he switch to my dentist. Much closer, and her practice is great. She specializes in gentle dentistry. The appointment was made. I called ahead of time to make certain that the dentist, hygienist, and office staff knew about Jim's dementia. I thanked them ahead of time for their patience and understanding.

Jim takes very good care of his teeth. We didn't expect much at the appointment, other than some x-rays that were due, routine cleaning, and check up by the dentist. Jim asked me to come into the exam room with him, which I was glad to do.

It was just short of a disaster.

The x-rays were "painful" (his word) as he held the x-ray apparatus in his mouth. The cleaning caused additional pain for him, and he was quite vocal about it. I felt bad for the hygienist. She was on pins and needles from the moment Jim started insulting her. This of course made it worse, as her hands were shaking and she was having difficulty manipulating her instruments because of her nervousness.

Jim called for her to be fired. He complained loudly to everyone who could hear about how she hurt him badly. Once home, he insisted that I call the office and demand our money back. And, he started talking about a lawsuit against the hygienist! Oh my.

I fibbed, and told him that we were reimbursed for the cost of the visit. Regarding the lawsuit, I started talking about the thousands of dollars we would need to pay, for a lawsuit with an uncertain outcome. He let that drop. But he was still so angry about the hygienist. I appeased him by telling him that I was certain she would be fired.

I know that sounds crazy, but what else could I do? My goal became one of helping him to get to a place of calm. We're still not there yet, but it's better.

Here's what I didn't know: dementia alters a persons perception of pain. They experience pain at a higher level than those without dementia. MRI's have verified this with areas of the brain that light up when someone experiences pain. The research showed that someone with dementia is much more sensitive to painful stimuli. You can check out a very interesting article from Science Daily here.

If I had known this, I would have asked for pre-treatment pain medication. He somehow made it through the appointment, albeit very unhappy and pretty angry. His teeth are perfect, and he needs no additional work, thank goodness.

And it's not over yet. Apparently the hygienist slightly nicked an area close to the gum line. I'm guessing it occurred when he was moving around in the chair, combined with her shaking hands. He complained mightily for 2 days. I honestly couldn't see it. I called the office and arranged for the dentist to look at it. She showed me with the magnified mirror the tiny nick that was causing him so much pain. She compared it to a nick you might get from a sharp potato chip. She reassured him, advised tylenol, bland diet and warm salt water rinses for the next few days. Every day, he has me look in his mouth to check on the progress, and this of course triggers another rant about the hygienist.

There was a silver lining in this experience. The dentist and all of her staff were wonderful. I was of course mortified at the cruel things he was saying to the hygienist. But in spite of his melt down, everyone treated him with the utmost kindness and respect. I will always remember and be grateful for that. I have written a thank you note to the staff that will go out in tomorrow's mail.

The other day I had my own doctor's appointment. It was for 3:30 in the afternoon. I did my usual note, stating where I was, when I would be home, and wrote down my cell number for him to call if he needed me. It is now getting dark here pretty early. I actually got home at 4:50 (10 minutes earlier than I wrote on the note). He was pacing and a nervous wreck.

"It's dark out! Something could have happened! I almost called the police!"

To his credit, he did call my cell phone, but I did not hear it! It was in my purse, and there must have been competing noise that prevented me from hearing it.

So, it has been a rough week for Jim. But it has been a week of learning for me, and for that I am grateful. The last couple of years his response to minor discomfort has always seemed overblown to me. I guess I just chalked it up to a psychological exaggeration, perhaps fueled by anxiety. And maybe anxiety is a part of it, but now I know that the pain is real and is experienced at a higher level for Jim, than it would for me.

I did not make it to the support group this week. After the rough week for Jim, I just didn't dare leave him again, especially since it was an evening group. I don't know what I am going to do about that, but I will figure it out.

On the lighter side, I was experiencing a very strong hot flash (yes, still having them after all these years!) and I told Jim I was going to step outside to cool off for a couple of minutes. Next thing I know, he opens the door

"Are you all right??!!"

"Yes, I'll be back inside in another 2 or 3 minutes, once this hot flash passes."

This gets repeated at least 3 more times in the time span of less than 2 minutes. Next thing I know, he has joined me outside with his down jacket on and says "I thought I would keep you company."

Kind of like the young mom who locks herself in the bathroom for 5 minutes, just to have her toddlers banging on the door for her :-)

Well, another challenging week has passed. I'm learning! And I like that. One of the more interesting observations that I had with the dental experience is that while I was embarrassed for the cruel things he said, the other (stronger) emotion I experienced was compassion for Jim in his very real struggle to get through what was a very difficult experience for him. Another step forward in my transition as a caregiver. For that I am grateful.

Once again, thank you dear readers for stopping by. You are all such great listeners, and I am grateful for each one of you.

20 comments:

  1. Oh Carole, I'm not sure I could handle what you're going through. I get so up tight and anxious sometimes in dealing with Bob, but he's never unkind to the many medical people we deal with. I can't imagine how you're going to deal with that problem. Have to say I think you did a wonderful job of it. Warning the staff ahead of time was good thinking on your part. I'm sure that will go a long way in making the situation better. Dementia is such a cruel disease. My heart goes out to you.

    ReplyDelete
    Replies
    1. Thanks Linda, for your kindness. When I am in the middle of a difficult time with Jim, one of the things that helps me is I remind myself that the retrospective view will likely show that we made it, that I learned something, and that we will be OK.

      I really have a lot of hope for when Jim starts seeing the gerontologist. I had a long talk with her the other day (more on that in an upcoming post), and I was very encouraged. She and I will work well together. She has a lot of experience working with behaviorally difficult dementia patients.

      Hope springs eternal!

      Delete
  2. You had me laughing when you said Jim had joined you outside to keep you company. That guy is too funny.

    ReplyDelete
    Replies
    1. Yes we still have our light-hearted moments :-)

      The other day he couldn't think of the word for hairdresser, so he substituted "hair fixer". We both laughed and laughed.

      Delete
  3. I think you did all the right things and, yes, it is a learning process. A friend of mine went on what she called a training programme and came home with lots of books on the subject of how to cope with dementia. I heard on the news the other day that dementia stats are now higher than cancer.

    ReplyDelete
    Replies
    1. Thanks for your comment Valerie. I actually discovered some additional resources last week. The Office of the Aging is a county organization. They have support groups as well as actual educational seminars for caregivers. I'm too late in the year for this past semester, but it is on my radar for next year.

      www.alz.org/facts/ This article states that one in three seniors dies with some form of dementia in the US. Not sure about your country, but my guess is that it would be similarly high.

      We've made so much progress in the are of cancer over the years, I'm hoping that the focus will strengthen on dementia.

      Delete
  4. I didn't know that dementia sufferers feel pain more acutely. That's good to know in case I ever get into a similar situation as the one you're in now. My hubby is 74 (as am I), and we seem to have all our cognitive functions right now, other than forgetting words such as "hairdresser." Sending you my wishes for a wonderful Thanksgiving this week. :-)

    ReplyDelete
    Replies
    1. Thanks DJan. It's always good to find some humor in every situation. And we still manage to do that! Sending wishes to you and your hubby for a wonderful Thanksgiving week too. I'm guessing it will involve some beautiful hiking :-) We are scheduled to get 12 inches of snow today and tomorrow. I bet you're glad you live in the northwest at this time of year :-)

      Delete
  5. You are obviously handling a difficult situation with grace and understanding. But you can be thankful ... at least Jim doesn't get hot flashes!

    ReplyDelete
    Replies
    1. Ha! Thanks for the chuckle Tom. I can only imagine what that would be like! Especially with his focus on the thermostat regulation ��

      Delete
  6. Wow, that is news to me also but now that you know, perhaps they can, as you suggest, give him something to ease the pain ahead of time. One good thing about the support group is that someone there has probably gone through this all ready and could have shared the info about pain sensitivity. If they don't know about it, you can make their life easier and share that with them. What an incredible learning curve you are having to go through.

    ReplyDelete
    Replies
    1. You are right Patti. The networking within a support group would be an invaluable resource. What a wonderful opportunity to learn, as well as to share.

      I actually have been googling virtual support groups online. The Rosalyn Carter Institute for Caregiving has offered this in the past. It is facilitated by a professional, and members connect on line with the facilitator for a group session. It was offered in the past as part of a research project; it doesn't look like they offer this now, but it gives me hope that I can find something similar. Thanks for the words of encouragement :-)

      Delete
  7. Hi, Carole! I've been reading your blog for sometime, but have never commented. My father-in-law suffered with dementia for many years. In addition to his pain threshold being lower, we also noticed that eventually noises were magnified and began to irritate him. The sound of water in the shower, the clothes dryer, hair blow dryer, etc. all caused increased agitation. Thank you so much for your openness in sharing your experiences. My husband is approaching the age when his father's dementia was detected and I find myself worrying whenever he forgets something. If it does occur, I only hope that I can handle it with the kindness and understanding that you have shown...Glenda

    ReplyDelete
    Replies
    1. Hi Glenda! Thanks for sharing your experience. Thanks for the tip about the lower threshold for noise. As I think about it, it does seem like Jim does best when there are no competing noises in the background.

      It is hard not to worry, when dementia runs in the family. My dad had Lewy Body Dementia, and sometimes I worry about that too.

      Thanks for your kind words :-) I learn so much from all the wonderful readers of my blog. It warms my heart to know there are such wonderful caring people in the blogosphere :-)

      Delete
  8. Carole, I admire your patience and courage. Here's a thought. Now that you know that dental procedures are so painful for him, and given that his teeth are in great shape, maybe ask the dentist to discontinue routine X-rays and cleaning or suggest alternatives?
    Jude

    ReplyDelete
    Replies
    1. Hi Jude. Yes, the dentist suggested that next time a panoramic X-ray be done of his mouth. This type of X-ray gives off some radiation, so lead apron is worn. The film is inside the machine, so literally there is no apparatus inside the mouth.

      Thanks for your comment Jude. I'm certainly learning a lot as I go along.

      Delete
  9. You certainly had your challenges with the dental situation. Glad if there's more awareness on the part of medical professionals to dementia patients special needs. The link you provided and Glenda's sharing very helpful to know. The more we can know about the person with dementia's world -- ever-changing -- the better. Expect many individuals with dementia don't have the benefit of a sensitive advocate like you.

    ReplyDelete
    Replies
    1. Thanks for your kind words Joared. There is a stereotype of "pleasantly confused" when referring to someone with dementia. Not sure where that comes from. As the baby boomers age, more and more folks will find themselves touched by someone in their lives with dementia. The more we learn and the more we know, the quality of life for the person with dementia, as well as the caregiver, hopefully will improve.

      Delete
  10. I can relate! My brother is a hypochondriac, so every little thing becomes a possible life-ending scenario. Last time, he went to the dentist and I couldn't get him off the phone. He didn't say the x-rays hurt, but he did believe he was going to die. I kept trying to convince him that he wasn't but then finally just gave up! He is, of course, doing fine now.

    Dora Ingram @ CGDDS

    ReplyDelete
    Replies
    1. Hi Dora. Anxiety dramatically colors the experiences of those who suffer. It's hard for you and me to relate to how debilitating this can be. Glad your brother is doing OK now.

      Delete