Wednesday, June 28, 2017

Dementia Doctor Follow-Up Appointment

Jim was scheduled to see Dr. S. this morning at 11:30. Any event outside our usual routine always is a challenge for both of us. The anticipation is many times just too much for Jim to handle. At the same time, I can't just spring it on him without any warning.

Yesterday I casually mentioned an appointment for blood work. He took this well. It is something that he has always done for management of his thyroid, and it seemed much less threatening than saying "doctor's appointment".

This morning after he was showered and ready for the day, I reminded him again about the lab appointment. At this point he started to become quite anxious and agitated. The conversation that followed and the fevered pitched of anxiety are all too hard to describe, or even imagine. I told him I would cancel the appointment, and he was visibly relieved.

10 minutes later I told him that I had a doctor appointment, and asked if he wanted to go with me. I was certain he would say yes; he said yes!

I had prepared a written document summarizing concerns and recent changes. At the last minute, I added a sticky note that said "Jim thinks that this is my appointment. It is the only way I could get him here." It worked beautifully. The nurse weighed me and took my BP, and then asked Jim if he wanted to get his checked too. He agreed!

Here is the document I prepared for Dr. S. (Modified slightly for privacy) :


Jim returns today for follow-up for his dementia. He started citalopram about 8 weeks ago. Since then, he has shown significant improvement in his anxiety/agitation.
While he still has upsets, they tend to be less severe and of shorter duration. He does best when we are home. Being away from home tends to cause him anxiety. 

In retrospect, the progression of his decline has been quite rapid. A year ago, he would have classified as “mild” dementia. His symptoms as of today, put him in the moderately severe category. 

Given the fast progression over the last year, can I expect further progression at this fast of a pace?

Since he last saw you 8 weeks ago, the following changes are noted:

  • His confusion has worsened. Many times will incorporate what he sees on TV into his own reality (ex. thinks that Trump is speaking to him). He has increased difficulty with comprehension of the spoken word. Speech is often nonsensical. 
  • He no longer allows someone else to stay with him to allow me a brief period of time away from home. 

  • He needs quite a bit of help in activities of daily living. (The other day he put deodorant on his face and tried to put toothpaste on his shaver. He needs some help in the shower.

         I'm beginning to notice some changes in balance and coordination.
  • Sundowning occurs most evenings: confusion worsens, pulls clothes out of his closet, doesn’t know who I am, thinks he needs to go home etc. In spite of this, he usually settles down by 9:00 and most nights he gets a good nights sleep. 

He is followed by Dr. M. for acquired renal cysts and BPH. He was unable to go to his annual appointment due to his anxiety. I do not see how Jim can continue with this follow-up; the office is across town, involves both an ultrasound as well as an office visit, all of which appears to be too much for Jim. 

His last appointment at the dentist for routine cleaning was beyond his ability to cope. He would need sedation to handle a dental cleaning. I cannot foresee taking him back, unless a dental concern arises.

Unless you advise otherwise, I am not inclined to have him start a cholinesterase inhibitor, given his advanced dementia, the minimal benefits, the fact that it would not alter the progression of the disease, and the concern for unwanted side effects. 


The appointment with Dr. S. went well. She and I had a good conversation about the issues. We were able to do this, even with Jim present, by using vague language and avoiding a direct mention of Jim's name. It's a reminder to me of how much difficulty he has in comprehending the spoken word. Here is a summary of what we discussed.

She totally agreed with my thought to avoid any further follow-up for other health issues as described above. The value of such appointments would not outweigh the negative effects and the stress it would put on Jim.

Dr. S. asked me if I was getting enough help. I told her no, but that I expect that as the disease progresses, Jim will be more receptive to others being present/helping. 

She says that everything that Jim is experiencing is what one would expect, given the advanced progression. The rate of progression will likely continue at a faster pace than what most folks with AZ experience. This is helpful for me to know, so that I can better plan for our future.

She is recommending low dose Seroquel to help with his agitation. Half a pill to start, increase to whole pill if needed. Use only on an "as needed" basis. At some point she says he may need it every day, but to start, just take as needed. 

One of the last things that Dr. S. said was to be sure and call her if I need anything. And I will! 

That about sums it up. The amazing thing is that throughout this whole discussion, Jim did not pick up on anything at all as being unusual or out of the ordinary. As we left the office Jim said "So what did she say?" I replied "She said I am in good health." 

On a totally different note, my brother and his wife picked up my mom and drove her to our house for a visit. It was great! I hadn't seen them in 6 months. They stayed for about an hour. Jim did well with the visit. I had clued them in ahead of time on how best to make sure that the visit would go well. 

Another post is written. As always, thanks for stopping by.


  1. You are very clever.

    1. Hi Gigi. I've learned so much on this journey! Lots of work-arounds when things don't go the way they should. Keeps me on my toes :-)

  2. That worked out rather handily, I do say! You ARE writing a book, right? What you've learned might be helpful for others.

    1. Hi SJ. Eventually, I might compile some of my posts for an e-book. It would be wonderful if my posts would help someone know what to expect in this very confusing world of dementia.

  3. The way you 'posed' as the patient was an inspiration and the fact that it was a successful idea proves it. I hope you know that you are coping extremely well.

    1. Hi Valerie. What is it they say...."Necessity is the mother of invention". While we were there, Dr. S. reminded me that depression is very common with caregivers. She wanted to know how I was coping. I reassured her I was coping fairly well, and I was not depressed. It is comforting to know that should I become depressed, I know that she would be there to help me manage it medically.

  4. I'm glad you have enough time to write and hope that you are able to continue with these posts for your followers to know what's happening in your life. I wish there were some way for you to get respite, have some time for yourself, but unfortunately that will happen way too soon. Jim will need to have constant care one of these days, it seems. My heart goes out to you, both of you. Thank you for sharing your journey.

    1. Hi DJan. Some days are busier than others. But it always feels so good to write. It is a huge source of satisfaction for me.

      Actually, I don't feel the need for respite as much as I did before. I think that earlier in our journey (pre-citalopram) I was so stressed out from Jim's high level of anxiety, that I was desperate for some relief. Now that his anxiety is so much better controlled, I am more content, happier, and not as stressed as before. I know this journey will get harder, but I think that Jim will be more accepting of others as the disease progresses.

      Thanks for your kind words DJan.

  5. You are definitely coping very well and your kindness and love to Jim are so evident. I am glad you had that wonderful visit with your family. I was wondering if either of you have any siblings who Jim might be comfortable with for short periods of time for you to get away. This is a difficult journey for you to be handling but you are amazing and loving and you are providing lessons in what we are all capable of when we need to be. I think of you often and thank you for sharing.

    1. Hi Sue. Jim has one sibling, a brother. I haven't written about him before. His brother is in deep denial about Jim's condition. His brother lives 3 hours away from us, and has not visited in over 2 years. I have tried on two occasions to speak to his brother by phone, privately, to update and let him know about Jim's dementia. Both times he immediately changed the subject, letting me know that he did not want to hear what I had to say.

      Interestingly, his brother was the same way when their mom developed dementia. He was in total denial, very angry, up until a couple of months prior to her death. So sad.

      Thanks for your kind words Sue.

  6. Thanks for sharing about the appointment - that was brilliant, saying it was for you...that would work here, too, I think, if necessary.
    Also, nixing routine follow-ups with specialists is really sensible. It's amazing how much control we have that we didn't realize we had until getting into this caregiving situation. Making decisions about medical care for someone else is really nerve-wracking, but gets easier with experience. Alas, we're getting experience....!
    Take care, Carole.

    1. Hi Jan. Thanks for your comment. I like your observation that we really do have quite a bit of control as a caregiver. It carries a weight of responsibility that I know you and I take very seriously.

      As the dementia worsens, the responsibility becomes greater. I think that the financial responsibility was in many ways much easier to take over, since I had been gradually moving into that role over the last several years. The medical care is somehow more daunting. But as you say, it should get easier with experience.

  7. I agree that you should write a book. That was perfect about saying the appt. was for you. You have made some remarkable adjustments and have handled tough situations with the least stress possible for Jim, you and those you must deal with. It would be an invaluable aid for anyone else going through a similar situation.
    I am so glad you have this doctor. She seems very helpful.

    1. Hi Patti. I am so grateful for Dr. S. It really couldn't be better.

      I'll definitely give some thought to the ebook at some point. Probably wouldn't be too hard to morph some of these posts into a book. We'll see. It would be very gratifying to me if I thought that it might help others in similar situations.

  8. I agree that you should consider writing a book about your journey with Jim's AZ. I think the title should be the same as your posts here... so apt for what is transpiring in your lives. Your posts are very helpful to me, and although reading about Jim's continued decline saddens me, your acceptance and coping methods are truly a comfort. I agree that all too soon Jim will require more care than you can provide at home. Thank you for sharing your life with us. I look forward to reading your posts and learning how you are doing. You do have a wonderfully supportive doctor in Dr. S.

    1. Hi Tehachap. Thanks for your kind words. Eventually I will need help, and I'm hopeful that the timing will intersect with Jim accepting help from others.

      I've learned from a lot of mistakes along the way, and am still learning. Just this afternoon I commisserated with Jim my frustration with poor customer service at our bank (long story). Unfortunately his brain twisted this into thinking that the bank had swindled our money! Oh my goodness. The passage of some time and a nap resulted in him forgetting about it, thankfully.

      I think of you and your husband, knowing that you too, are on a journey. Sending you best wishes Tehachap.

  9. Carole, you have so many amazing strategies for dealing with the daily challenges as Jim continues to decline, like figuring out how to persuade him to attend the appointment with Dr. S. One of the things that I think must be so hard would be the loss of Jim's companionship as his confusion increases and his ability to understand language decreases. For example, the discussion about your frustrations with the bank did not elicit understanding and joint decision making, but just misunderstanding on Jim's part. You have a lifetime of shared memories, but now he now longer can access those memories. Although it is different, of course, when my first husband passed away at a young age, I remember feeling as though I had lost memories because I no longer had my partner who had shared those experiences to remember them with me. Your written account of your experiences are so helpful to so many readers.


    1. Hi Jude. Thanks for your kind words. You are absolutely right. Things that we normally would have discussed and problem solved together, I know that I can not do this anymore.

      His decline in language comprehension, as well as decline in expression has made things difficult at times. Just the other day he was trying to tell me that he had to use the bathroom, but was only able to say the word "hurry". I was drying his hair for him at the time, and thought he was telling me to hurry up :-(

      I so miss the companionship. The comfortable, easy relationship we had is a memory. Thanks for sharing about your husband. I can't imagine how hard that must have been for you, especially at such a young age.