Friday, August 4, 2017

Alzheimer's Disease with Psychosis

It has been a rough few weeks. It seems that every time I think that things are relatively stable, there are some new challenges that arise in our world of dementia.

Jim's delusions, and now hallucinations, are worsening. It's hard to watch him suffer so. I've been in touch with his doctor and her guidance is invaluable. Medication adjustments continue to be made in order to help Jim be more content and less anxious and upset. 

I'm grateful for medications to help Jim as he suffers from this cruel disease, but at the same time I know there is no perfect pill to help all that is wrong. In addition there is the consideration of balancing benefit against possible side effects of medications. I sure am grateful for Dr. S. to help us on this journey. 

This article provides some good information about Alzheimer's Disease with psychosis (AD + P). I learned that approximately 50% of folks with Alzheimer's Disease will have a psychotic component. That's a pretty large number! Unfortunately Jim is part of this unlucky group. 

The hallucinations Jim has are usually of other people being in our house or in our yard. These experiences are worrisome for Jim, so I've learned to say "I've asked everyone to leave." He accepts this, until he "sees" someone again.

His delusions are frequent, and almost always troubling for him. The other day he was certain that we were going to jail. My very best efforts at distraction and calming were not effective. That was one rough day!  

The article points out that those with AD + P have a more rapid cognitive decline than those without the psychotic component. This helps to explain why Jim's decline has been so fast. 

I took a chance.....I had a dentist appointment. Mike offered to come over and help with a couple of computer issues and stay with Jim. I figured at the last minute if Jim was not willing to stay back with Mike, I would just bring Jim with me to the dentist appointment. Either way there was a big risk of him being unhappy. 

He seemed to be content to stay with Mike, so I went to the dentist alone! First time alone in many months! Things did not go well for Jim. According to Mike, things were OK to start, but went downhill after about 45 minutes. By the time I got home (gone an hour and a half) Jim was beside himself with anger. Angry at Mike, angry at "the people in our house", etc.  It took quite a bit to get him settled down. 

Some encouraging news....Jim's only sibling will be coming to visit us sometime in the near future. This will be the first time they have seen each other in about 3 years. I am cautiously optimistic that things will go well. I've been emailing and have had a few private phone conversations to prep him for this visit. 

Some other good news....I found a handyman on Angie's List! I have a few things that need to be done around the house that are beyond my ability. He installed our new dishwasher earlier this week. I had an opportunity to give him a "heads up" about Jim. He was wonderful with him. So polite, soft-spoken. I'm having him come back next week for a few more things. What if I could hire him to come once a week, and Jim could "help" him with projects? We'll see how next week goes. 

Another post is written. As always, thanks for stopping by. I so appreciate you!






18 comments:

  1. Whenever I think that things are calming down, you write a post like this one, showing that the deterioration of Jim's mental state continues at an alarming pace. I'm glad you got a chance to see the dentist, but how much longer can this go on, Carole? I hope he isn't strong enough to hurt you. I worry about you both. However, I'm glad you found a handyman to help you. And thanks for keeping up with the posts.

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    1. Hi DJan. Thanks for your comments and your concerns. Jim has never physically harmed me in any way. If I felt I was in danger of physical harm, we would not be able to continue with our current living situation. Fortunately, Dr. S. was/is aware of these concerns and has started and adjusted medications accordingly, to keep me safe and to help provide some help for Jim. It's tricky, because you don't want to "snow" him, but at the same time it's important to provide him some relief from these frightening delusions and hallucinations he is suffering from. I do believe we are striking a good balance, at least as good as it can be.

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  2. Wow, Carole - this article really speaks to Jim's condition. What a haul it's been for you both!
    Hoping the handyman and Jim's brother can begin to provide some respite for you. Thanks for sharing these latest developments.

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    1. Hi Jabberwalky. Thanks for your comment. I was so glad when I found this article. The more I read, the better I understand what is happening to Jim. And the more I understand, the better I become as a caregiver.

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  3. I agree with DJan. Psychosis is a scary thing. Please take care.

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    1. Hi Roberta. Thanks for your concern. Yes, psychosis is very scary. I'm grateful for the good relationship that Jim and I have had over the years. In spite of his limitations, he still responds favorably to me, at least most of the time. Without the doctor's help and the medications, I know I would not be able to handle this situation by myself. One of the most reassuring things that she always says to me is "call if you need me".

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  4. I am saddened by this post -- it reminds me of my eldest sister who passed away from Parkinson's. Before she passed, she suffered from hallucinations. One time I happened to be visiting and her husband started telling me about her hallucinations. At this point, she began asking me if I could see the people in the palm tree in the neighbor's yard. I looked, but couldn't see anyone in the tree. She looked so distraught, and I wished I could say I did see something -- but, of course, I didn't. That was a good two years before she finally passed. My heart goes out to you and Jim. This is such a difficult time for you both. I wish the dr. could tell you what to expect as to the progression of Jim's Alzheimer's. It would be helpful to know what's in the future for you and Jim. As you say, just when you think things are stabilizing, something new is added to the mix.

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    1. Hi Carol. Thanks so much for your comment. I do wonder what the future holds for us. It looks like his decline will continue to be fairly rapid and the nature of the challenges will change. Maybe it is a good thing that we don't know exactly what the future will bring. Perhaps focusing on the present is a way of protecting ourselves from worry and angst for the future.

      I'm sorry to hear about your sister. You are right, in that when the hallucinations cause the person to be distressed, this can be so hard on the person as well as the caregiver.

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  5. I too worry about you and hope you and the meds can control the anger outbursts. I hope that didn't chase Mike off for he has been such a blessing to you both. It is easy to understand Jim's anger and frustration when his whole world is closing in on him and is filled with strangers. Some real some imagined. Could the meds be causing the hallucinations?
    Delighted you have found a handyman who is considerate of Jim and will help you with those many chores that require a skilled man. Hope his brother's visit will help you both.

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    1. Hi Patti. Mike is wonderful! He totally gets what is going on with Jim and realizes that it is the disease talking. I'm sure it hurts him though. It's hard not to be affected by someone's harsh words.

      The issue with side effects is always a tricky one with medications. Manufacturers are required to list any side effect that gets reported to them.

      Jim's delusions definitely started before he was on any medication. I remember late December as the very first one. But the hallucinations, I'm not sure exactly when they started. For several weeks he would point to things outside that I couldn't see; I thought he was having a language production problem. Then it was "all the people in our house". That's when I knew he was hallucinating.

      So could the medication be causing the hallucinations? I don't know, but he is definitely calmer on the seroquel and seems less agitated and anxious.

      Thanks for your support and your comment Patti.

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  6. Hi Carole! If it isn't one thing, it's two. I also worry about you. I think of you often.

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    1. Hi Sharon. I just have to say I am so sorry for your loss of sweet Jack. I'm glad that you still have Jill. It takes time to recover from this kind of loss. We get so close to these beloved pets....a mixed blessing as it means we mourn their loss even more :-(

      Thanks for your comment Sharon. I'm thinking of you too....

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  7. The changes do seem to be increasing in your husband's behaviors. So glad your Dr. is so supportive, that you keep her well-informed of his behaviors, especially as your own well-being is concerned. I do hope the visit from his brother is one from which he will derive some pleasure and you may even gain some repite.

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    1. Hi Jo Ann. Thanks for your comment. Jim's brother arrives Thursday. I've spoken to him by phone, and in addition, I sent him an email with some updates and some guidelines as to how best to interact with Jim. He seems very receptive to my guidance. I'm hoping for the best. As I told his brother, at this point, it is all about quality of life for Jim.

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  8. I am glad that you have such a great doctor who is a available as new symptoms emerge. My grandma, who had some form of dementia, also had delusions although I don't know if she had hallucinations. For example, she no longer recognized her son in law, a wonderful caring person, but believed that he was a bad man who came to her house to steal from her. She also was suspicious of the neighbours. However, as her illness progressed, the delusions diminished or went away. Maybe this will happen with Jim. The hallucinations must be frightening for both Jim and you.

    Jude

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    1. Hi Jude. Yes, the hallucinations are very disconcerting. The other night, he was certain there were elephants in our garage. Today, it was people standing in our driveway. The symptoms your grandma experienced apparently are fairly frequent with Alzheimer's. Such a cruel disease.

      Every time I think that I can predict what the next few weeks/months will bring, I am surprised to find that I am wrong! Life sure is full of surprises, isn't it. Thanks for your comment Jude. Thinking of you with your big move!

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  9. Just a note after reviewing a number of your posts. I am infinitely grateful for your effort to share your experiences. Every experience is possible window into the future for me and my evolving caretaker role. My wife is a volunteer/patient at Mayo Clinic Abigail Vanburean Memory Loss and dementia Center. Their care, monitoring, and advice is so helpful. Still real people facing real problems is very important to me in look ahead. Thank you so much for doing this....:)

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  10. Hi Troutbirder. I'm so glad that my posts have been helpful for you to read. They say that everyone's dementia journey is different, but I think we all share the challenge of planning for our future. Every time I think that I know what the next month or so will bring, I find that I am surprised by what is actually experienced!

    I'm glad that your wife is involved with the Mayo clinic. They will bring a wealth of information that will be so helpful for both of you. And it is reassuring to know that you've got some experts that you can turn to for questions/help.

    The caregiver role is a tough one at times. I find it a mixture of sadness, frustration, and yet I also am able to experience joy. Hang in there, and thanks for your comment.

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