Monday, July 24, 2017

Jim and Dementia Have a Rough Couple of Weeks

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!


Saturday, July 15, 2017

Dementia says "I Don't Know What To Do"

More changes. I've always known that this is a progressive, fatal disease. But sometimes I am caught off guard when the changes come our way.

Jim had a rough week. He is now clearly in stage 6 c and with some early signs of 6d and 6e. With Alzheimer's, when a person starts to lose a skill, it's not necessarily all or nothing. What I have witnessed is that the loss is manifested intermittently, and then proceeds with increased frequency until that skill is lost.

Communication challenges continue to make things all that much harder for Jim. The other day I was drying his hair for him and he said (rather calmly) "hurry", and at the same time made some vague hand gesture. I assumed he was telling me to hurry up with drying his hair. I was wrong. He walked away from me, headed for the guest bathroom and closed the door.  He didn't quite make it in time. I felt so bad for him. He was embarrassed. I'm actually pretty good during times like this at remaining calm and reassuring him that there is nothing he needs to be worried about. Well, I can pull this off in front of him. I have to admit that in my own quiet moment I felt overwhelmed and incredibly sad for Jim.

The following day I figured out that he needed to use the bathroom. He stood in front of the toilet and said "I don't know what to do." It shocked me. I know it shouldn't, but it just was shocking to me to hear him say these words. I actually did very well in hiding my reaction. In a very reassuring way I assisted him with his clothing, gave a few prompts, and then he did fine. It's not happening every day; it is quite intermittent at this point that he needs help. I'm so very grateful that he trusts me and accepts my help. I try so hard to make it easy for him to accept my guidance and support, and this seems to be working.

It appears that "bathroom" and "toilet" are no longer in his vocabulary. He understands the meaning, but is unable to produce the words to indicate his needs. I realize now that bathroom needs must always be at the forefront any time he is trying to tell me something that I don't understand.

On a practical level, I've changed our mattress pad to one that will provide better protection for the mattress. I also have a spare mattress pad and extra bedding in the event I need to do a quick change at night. I have the proper undergarments for him to wear, when the time is right. At this point, my hyper-attentiveness will be all that is needed for now. Nighttime doesn't seem to be a problem, yet.

He is understandably frustrated with his decline in being able to communicate.  I've learned a new technique over the last couple weeks or so that seems to help with his frustration.

Typically when he says something that is totally nonsensical, and I am unable to derive any meaning from context, I would say something vague, "I'm not sure". He would sometimes become angry that I didn't know the answer to his question. Lately I've been responding a little differently:

Jim: "What is the red side before tomorrow?"

Me: "I'm not sure...Do you know?"

It's a subtle difference, but by adding the "Do you know?" it takes the focus off me, and puts it back on him. I always use a tone of commiseration, and so far this seems to work fairly well. So instead of thinking about how upset he is that I don't know the answer, we can share the feeling of frustration that we both don't know the answer.

Lately there have been a few challenges with medications, where he has questioned why he needs "all these pills". This is new. I have started to make some decisions about what medications are really critical for him at this point. This turned out to be a wise move. He seems to be doing much better with less pills to pop in his mouth.

My friend Jan has been a tremendous support to me through our email exchanges. In her last email, she wrote "...but it also sounds like you are prepared to decide for yourself what is working well and what isn't. Hang onto that - you're the only one there who sees and knows what's going on."

What a powerful statement. It encourages me to trust myself and to trust the decisions that I am making for Jim on his behalf.

I have a link that might be of interest to others who are caring for and making decisions for someone with dementia. The European Association for Palliative Care developed guidelines for healthcare professionals and caregivers for those with dementia.

Update on boredom: I've been struggling with things to fill our time that Jim enjoys and is capable of participating, at least in an observational way. I just discovered the Science channel and the Animal Planet channel and he seems to be enjoying them. I have to keep the news to a minimum. He is incorporating way to much of it into our reality. The other day he said we needed to "lawyer up". He said this while the TV news was talking about Trump lawyering up. I've ordered a few jigsaw puzzles to try. I chose ones with dogs, since he is such a big dog lover. I am starting with very easy puzzles. His spatial skills are not good at all, so I don't know if this will work. We'll see....

Another post is written. So many changes and challenges. Thank you dear readers for listening and letting me share with you what is on my heart and mind.



Wednesday, July 5, 2017

"I Leave You With a Woman Who is Very Nice..."

"...and I've spent a lot of time with her."

Me: "Are you talking about me?"

Jim: "Yes. I will take good care of her."

A lot of times Jim's sentences are a string of words that don't make a lot of sense. And he frequently mixes up pronouns. But this one I figured out. So touching. This is the man I fell in love with so many years ago. Always the romantic, so thoughtful, full of love and tenderness. I'm really going to miss him when he's gone.

More changes have come our way, and today's post will document some of these changes. I have found it helpful for me to look back, and hopefully it may help others who are on this dementia journey, as I share what we are experiencing.

Lately Jim has been very focused on zippers. He has several favorite hoodies that he wears around the house when he feels too cold (often!). When he takes it off, he is compelled to zip it up before it goes on a hanger. He is no longer capable of doing this without my help. He will try to zip it up from the top, or he will take a label (from the seam) and try to insert it into the zipper to zip it up.

Dressing skills are in decline, he now needs specific verbal cues and gestures to help him with the task of dressing. His comprehension of the spoken word has declined enough so that I try to include gestures/pointing when speaking to him.

Doors are left open. Not really a big deal, but the other day he went outside to sweep the driveway and left the house door and garage door open. Had a few unwanted flying insects, but otherwise no big deal. He almost always needs a reminder to close the car door when he exits the car.

He no longer can "find" the seat belt. Once I point it out, he does not know how to buckle it without my guidance.

I need to be present when he heads to the kitchen. An ice cream container may end up sitting on the table. A dirty napkin may be tossed in the dishwasher. We are missing a few utensils; I suspect they may have landed in the trash.

He sometimes uses the wrong utensil (fork for a sauce). He also is having trouble using a knife to cut food. I've been finding clever ways to pre-cut food that make it easier, without making it look child-like. (I use a pizza wheel to cut a pizza into small, bite size squares.)

Shower time (mine!). I never shower until Jim is ready for the day. His routine of showering and dressing usually exhausts him. This works well, so that he is content to watch TV while I shower and get ready for the day. I always leave the bathroom door open so that he can hear where I am. Sometimes he'll come in to ask a pressing (for him) question. But most times it is a nice relaxing shower, and I am all by myself!

Probably the challenge I find the hardest is to create fun, meaningful ways to spend our time together. I added Hulu and Netflix, desperate for some additional viewing options. I thought for sure the documentary nature shows would be just the ticket. He used to love to watch reruns of Seinfeld, but not any longer. He always loved watching the news, but lately tires of it fairly quickly. I try very hard to take into account his inability to hold onto a thought for very long, and that his comprehension is poor. He is most content at home, so out of the house activities are for very short periods of time. Still working on this one...

Another post is written. Thanks for stopping by. I am so grateful for each and every one of my readers.



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.






Friday, June 16, 2017

Dementia Progression and Communication Challenges

In retrospect, looking back over the last 10 years, I remember observing personality changes that I found troubling and hard to understand. Jim, who always was an easy going, light-hearted guy, suddenly became quick to anger, despondent, and in general seemed unhappy. It was shortly after he retired that I first noticed these personality changes.

At first I chalked it up to retirement adjustment. But as time passed, it continued and seemed to worsen. When I would attempt a gentle conversation about my concerns, the response was steeped in denial and tinged with annoyance.

I'm realizing now that this was likely the start of his dementia journey; I just didn't recognize it for what it was. Then came the cognitive changes: confusion about the difference between a debit and a credit card, some difficulty with managing our investments, and many other subtle changes that were a harbinger of things to come.

Way back, when I first noticed the personality changes, I remember feeling hurt and confused. What happened to my sweetheart? Is this what our future looked like? It scared me, but I didn't know what to do about it.

Fast forward to today. Never could I have imagined that this is where we would be at this point in our lives.

Jim progression continues to surprise me. I just didn't think that the progression would happen as fast as it is. Some recent changes:

 - Sense of privacy is changing. Jim was sweeping our driveway. He stopped, unbuckled his belt, dropped his pants partway down and re-tucked his t-shirt. He's done similar things in public. Not to the extent of exposing himself, but obviously very inappropriate. I've tried a little humor ("Uh-oh! Someone might see your you-know-what!") But he doesn't get it. Not sure what I'll do about this. Probably nothing, as long as he is not exposing his you-know-what!

 - Jim is not able to use the hairdryer, even with demonstration, guidance and prompts. I now am learning how to style a man's haircut using the hairdryer. 😀

 - He no longer knows how to wash his hands. He calls for me and says "I don't know what to do". I can talk him through this using some physical guidance for hand placement, and helping him with the soap.

- Once in the shower, he no longer knows how to get soap out of his favorite shower soap container. Once I pour some in his hand, he can lather up and rinse his body.

For the last few months I've done all the "prep" for his morning routine: setting up the shower with towel, laying out his shaver, toothbrush and paste, laying out clean clothes. Once he was in the shower, it gave me about 10 minutes to make phone calls (to my mom, to our friend Mike) that were best made when I was alone. I'm realizing that I can no longer count on this time for myself. I'm guessing that it won't be too long before he'll need help actually washing his body and hair in the shower.

I do manage to find other times for privacy/myself. Jim is actually napping as I type this. He is sleeping quite a lot these days. Usually two naps a day. The other change is that he is now going to bed about 6:30.

When he first started to do this, I thought perhaps it was just that he was confused about the time of day. I would gently point out that it was still early, and that we had just finished dinner not too long ago. His response is always "But I'm tired."

He awakens in the morning usually between 6:30 - 7:30. I've decided not to be concerned about all this sleep. His body must need it. And, it does give me some time to myself which is a real bonus.

Communication continues to be our biggest challenge. Earlier today, out of the blue, he said "I've never had a used Indian." I could not have made that up if I tried! Where does this stuff come from? I have no idea. But it is typical of the kinds of things he will say. Most times things make no or very little sense. My response is always to smile, and nod my head in affirmation.

The hard part is when he is desperately trying to communicate something he needs, and I have no idea what it is. Keeping his frustration level low is always my top priority. Bathroom needs, feeling too hot/cold, hungry, bored....those are all things that are so important that he is not able to communicate to me. I tend to go through my mental checklist when I'm trying to figure things out. Sometimes i succeed, sometimes not. Doing the best I can is all I can do.

Some good things that happened this week..."Comfort level" toilet installed in our master bathroom. Thinking ahead to when Jim may struggle with this. It's good for my bad knees too! We had a whole house humidifier installed on Tuesday. Knowing that we will no longer head south for the winter, I want to keep our house more comfortable. I had an eye appointment that I knew would be lengthy. I had Mike arrive at the office before we did.The "story" was that Mike's wife was having a procedure, and he was waiting for her. Perfect! Jim was OK to wait in the waiting room with Mike while I had my appointment and picked out a (desperately needed) new pair of glasses.

Another week has passed, and changes have walked us further down the road of dementia. We know where this leads. It's the journey no one wants to take. But take it we must. Thanks for supporting me on this journey. And as always, thanks for stopping by.


Sunday, June 11, 2017

"He looks so normal!"

This comment was made by a friend of ours. She said it with a tone of incredulity, finding it hard to believe that he could have advanced dementia. In fairness, it is not someone who spends a lot of time with us. Jim does look normal. Sometimes dementia is called the hidden disease because you can't really see it. Spending a significant amount of time with Jim would quickly bring an awareness of the deficits. 

The other issue is  that dementia is associated with a much older age. At 68, Jim is much younger than most folks afflicted with this disease. We think of someone very old and physically frail when we think of someone with dementia.

Jim is so handsome. Beautiful brown eyes. A smile that would melt your heart. His black hair over the years has turned into a salt and pepper (mostly salt) color. He is trim and dresses impeccably. So yes, to look at him he looks "normal". And when among strangers, if the conversation is brief, no one would be the wiser. 

The driveway sealer guy came by the other day to give us an estimate. We happened to be outside. Jim shook the guy's hand, we made very brief small talk about the weather. And then Jim said "yes, I've seen you every day this week!". This very polite, kind guy paused for a moment, and then said "well, I've certainly been pretty busy". 

It's one of those comments that isn't seriously off, but enough off where you kind of wonder about it. 

When we have workers at our house, I almost always am able to give a "heads up" by phone prior to any work being done. This strategy has worked well to prevent misunderstandings. I've always found workers to be kind and understanding. 

Typically our days involve two separate outings. One late morning and the other mid-afternoon. Jim will take the lead "Let's get going!", having no idea where we would/should go. Our trips out of the house are always relatively close to home. We go to Wegmans almost daily. He loves it and it is a low stress trip. I am careful to avoid peak times when it would be busy. Going as often as we do, there are usually only a handful of things on our list. 

The other trip might be to Costco, or just for a short ride down some nearby rural roads. The trips are short, otherwise I risk an upset. As soon as we get home he almost always heads to the sofa to rest/sleep. 

Gardening and yard chores continue to keep me in the weeds and shrubbery too often for my liking. Jim enjoys sweeping the driveway, and will make it into quite the production as I work outside. I've had two encounters with snakes that caused me to retreat to a different part of the yard. I think they are garter snakes, but geez, both encounters the snake raised his ugly head and hissed at me! I wear my tall rubber garden boots, so that gives me a bit more confidence. But I just can't get used to the snakes! 

This is an interesting link. It connects the 7 stages (and substages)  of dementia with the corresponding expected duration of the substage, the corresponding mental age in years, and the MMSE score. Before I found this link, I would have guessed that Jim's MMSE score would be about 7 - 8. I don't know for sure, as he did not agree to the testing at the doctor's appointment. As far as the mental age, I don't quite know what to think of that correlation. But it is useful in that it is a reminder that expectations need to be realistic as the decline continues. 

Jim is at stage 6B, kind of. He is unable to do any of the preparation for getting ready to shower, including turning on the water and adjusting the temperature. I'm not sure what actually happens in the shower, but he always smells sweet and clean 😀.  He is in the beginning stage of some intermittent minor issues with toileting. 

One of my more recent observations is that Jim is totally just trying to get through his day and be able to make sense out of the world around him. Many times he is unable to process what is being said. Minimizing outside stimuli, waiting for a quite moment, and keeping my words short, to the point and without a lot of detail seem to work the best for Jim. A soft loving voice and a gentle touch or kiss all go a long way in helping Jim to feel more secure in his environment.

I have my moments where it still is just incredibly sad. Our future together is not at all the way we had planned. But, the good news is that Jim seems pretty content. His anxiety is so much better. What more could I ask? 

Thanks stopping by. I so appreciate each one of you.

Thursday, June 1, 2017

"As Long As It Is Not Number 2"

It's been a while since I posted. It is a bit of a challenge to find "alone" time that gives me the privacy to write.  When Jim naps, I use the time to do things around the house or make phone calls that are easier to do without Jim being so very present.

I continue to be so grateful for the improvement he has shown on the citalopram.  I really don't think that I could ask for a better response. As long as we are home and things are low stress, he seldom becomes anxious. I continue to be careful with out of the house activities, keeping them short, familiar and low key.

My hairdresser offered to come to our home to do my hair. I was a little nervous, not knowing how Jim would respond. But I figured it had to be better than taking him to her shop, which is about a 30 minute drive each way. Add the time spent in her shop, and it just spells disaster. Her visit went great! She is a natural when it comes to interacting. Jim responded so well to her. She offered to cut his hair while she was here and he agreed! So no more worries for me about having to leave the house for hair appointments. I'm so very grateful for her kindness and willingness to travel this distance.

Jim's confusion continues, and I believe is worsening. I'm not surprised by this, as this is how Alzheimer's progresses. He has the hardest time first thing in the morning and late afternoon into evening hours.

This morning was particularly difficult for him. He woke me up about 6:15. He looked worried and said "I don't know anything. I don't know what to do, or where to go. I don't know anything I am looking at."

This was absolutely heartbreaking. He wasn't agitated, just incredibly sad and worried. Fortunately he remembered me. I suggested having some coffee, watching the morning news, to see if that would help. At one point he said "I don't think I have any opioids in my system."

It was his way of trying to figure out why he was so confused. The only thing he could think of was that perhaps he had had some pain medication. Side note: Jim has never had any prescription pain medication with the exception several years ago, following hernia surgery. He did not tolerate them at all and had to switch to tylenol.

It was so hard to watch him in distress. I encouraged him to get ready for the day, shave, shower etc. A few hours later he noted that things were looking familiar to him. What a relief. I cannot even imagine what it would be like to wake up, not know where you are, not recognize your house, and wonder how you got there. Sounds terrifying to me.

I'm learning a lot about house maintenance, yard work and gardening. Most people will not relate to this, but I have to admit I hate gardening! I love being outside, but the pulling of weeds, edging, etc is not enjoyable at all to me. I purchased a battery operated edger and weed trimmer. This eliminates having to deal with gasoline. These things always remind me of what a beautiful job Jim did in keeping up with our landscaping.

Communication challenges continue.

Jim: "Where is the kitchen?' (We are standing in the kitchen as he asks this.)

Me; "Dinner is almost ready; about 15 more minutes."

Jim: "Oh, good."

Whew! Got that one right. I don't always get it right.

Jim: (Pointing to the light switch in the bathroom) "It might surprise the number 5."

Me: "Well, as long as it's not number 2."

We both laughed so hard! I hope no one is offended by the bathroom humor. But sometimes you just have to lighten things up. Got to keep your sense of humor. 𝩀😊

He also incorporates what he sees in the environment/on TV with what he is trying to say.

Jim: (While watching commentators discussing Trump pulling out of Paris Accord) "Where is the Paris Accord shirt?"

Me: Let's go look in your closet to see what we can find.

And so it goes. More confusion, more decline, BUT anxiety is so much better. So grateful for this. When I think about how things were 2 months ago, I remember thinking that I was certainly doing harm to my body and my mind, given how I was reacting to this high level of stress. Fast forward to today, and I am not nearly as stressed as I was before.

I know that things are only going to get harder, but with my stress level better controlled, I should be up to the challenges that Jim and I will face.

Thanks dear readers for stopping by. As always, my heart feels lighter!


Friday, May 19, 2017

Smack Dab in the Middle of the Land of Dementia

Jim went for imaging of his brain.  My explanation that it was a screening for those over 65 was accepted by him. I was ready with my companion card, and very glad that I brought it with me.

At check-in, there were several forms to fill out and sign. I filled out the forms, but when it came time to sign, Jim struggled. He managed to write his first name (hardly recognizable) and then turned to me and said "Will you do this for me?". I showed the POA to the receptionist, and then signed the forms for Jim. This was heartbreaking for me. At times like this, I wonder how it makes him feel. Does he realize that this is not normal? Or is he so focused on the difficulty of the task that he is just grateful that I am there to help him.

The imaging confirmed the diagnosis of Alzheimer's Disease. I was not surprised, but still, it is shocking in some ways.  After all this time, you wouldn't think so. But I still sometimes wonder how all of this became our reality.

Jim's anxiety is much better. The citalopram has worked well for him. There have been several instances that typically would result in high anxiety and anger. Now, his reaction is much more subdued. What a relief!

The one caveat is that while it helps with anxious situations at home, situations outside the home are still capable of producing anxiety. So I continue to be careful with where we go, keeping the time away from home short, and avoiding noisy, busy environments.

He is on the highest safe dose of the citalopram; maximum benefit will be evident within the next 2 -3 weeks. I'm very grateful for the improvement I've seen so far. When I think back to how things were just prior to starting the medication, the difference is astounding.

Jim still does not tolerate me being away from him. He has been less tolerant of lunch with Mike, or even a visit from Mike. My thinking is that as Jim's deficits increase, he feels less secure away from me. My good friend Jan has given me lots of encouragement and some good advice on options to explore, as I try to figure out ways to make time for myself away from the home.

I've written before that Jim sleeps a lot. The amount of time he sleeps seems to be increasing. During the day when he naps, I take full advantage of the time. In the evening he goes to bed about 7:30. Although he usually will come out of the bedroom every 10 minutes or so, just to check on me. He is the most confused in the evening. Lately he has been incorporating what he sees on TV into his reality. Last night we were watching the news about the latest Trump scandal, and Jim said "Trump said that to me yesterday."

Language skills continue to decline. But I am getting better at interpreting what he needs. Sometimes he pantomimes, gestures or points while speaking, which helps a lot. Sometimes he makes a declarative sentence that makes no sense at all. When he does that, a neutral response by me helps prevent frustration for both of us.

I've written before that I never correct Jim if he says something that is wrong or inaccurate. The exceptions are if it is something of danger, or if it is of great importance. Something I have been thinking about are the times when Jim does not remember who I am. Should I correct him on this? Is it really important? I think it is, especially if he is worried or upset.

One evening last week, he didn't know where he was, how he got here, and "Where is Carole?". He was so distraught, it made sense at the time to gently orient him. At some point I suggested we just go to sleep and talk about everything in the morning. Of course in the morning he had no recollection of our conversation from the night before.


The land of dementia. No one wants to be here. But here we are. Smack dab in the middle of it. Making the best of it, finding our way, and learning as we go.

Thanks for stopping by. My heart feels lighter. I appreciate each one of you!




Tuesday, May 9, 2017

"I'm Carole, version 1 - 10."

 As I have written before, Jim does not always remember who I am. Sometimes it is fairly easy to help him remember, other times it is a bit more of a challenge.

It was after dinner, and he was concerned:

"Where is Carole?"

Me: "I'm Carole. I'm right here."

Jim: "No, I mean the other Carole."

Me: "Well, I am Carole, version 1 - 10."

We both laughed. I took what could have been a stressful moment and managed to turn it around with humor. I'm not always that successful, but I do find that a good dose of humor goes a long way in soothing the troubled waters.

We don't go to restaurants anymore. It is just too stressful. The difficulty with the menu, the noise, the people, the lighting. It just isn't worth it. The other night it occurred to me that we could order takeout from the local Chinese place, pick it up and bring it home to eat. Jim thought it was a great idea. We settled on what we were going to order, I made the call, and we headed out the door to pick it up.

It was a short, five minute ride. In those 5 minutes, Jim became quite upset. He insisted he did not agree to the plan, and angry because "You should have checked with me before ordering food!" We picked up the food, and I ended up throwing it away. He was so upset by the incident, it just seemed like I needed to get it out of site. I quickly threw something else together for dinner. He seemed to calm down.

About an hour after dinner he became upset. "Can't a person get any food around here? Where is dinner?" He had no recollection that we had already eaten. And so it goes. I think the anxiety from the takeout food incident was still circulating in his brain.

Overall, since starting on the citalopram for his anxiety I believe that he is doing better. At least this holds mostly true for when we are at home, with no distractions and nothing out of the ordinary. He still becomes quite anxious with anticipation of any plans, appointments, any changes etc.

Activity outside the house is always vulnerable to an upset. The full effect of the citalopram may take another 4 - 5 weeks.  So perhaps his anxiety will improve further. But at the same time, I realize that nothing will make everything OK all the time. Dementia just doesn't work that way. There will always be challenges.

When I look over the past year I realize that Jim has lost a lot of ground over a relatively short period of time. There are a lot of theories out there to explain the differences between dementia that progresses more slowly, versus dementia that progress more rapidly.

This link has been quite helpful in preparing me for what to expect. When I look back, I realize that a year ago he was in stage 4. He is now in the beginning of stage 6.

Language has been more challenging for him, and I continue my strategy of responding with a neutral response when he says something I don't understand.

Today he wanted me to "find the staff". He also wanted me to "take care of the trees". I responded by saying "Is it OK if I do that tomorrow morning?" He was quite receptive to this delay. And of course he will have no recollection of this conversation.

Jim's receptiveness to Mike is intermittent. I never plan for time to myself, because I never know if Jim will be agreeable to spending time with Mike. Those few times when Jim has spent time with Mike have been nothing short of wonderful for me. I'm hoping that as time passes, the full effect of the citalopram will help Jim to be able to enjoy more time with Mike.

Jim is scheduled for a CT of his brain this Thursday. How do I get him there? Well, I've told him that all people 65 and older are encouraged to be screened for vascular disease. I told him that I've already had the test, and that the doctor would be scheduling one for him too. When I told him this, he thought it was a good idea. I won't bring it up again until the morning of the appointment. I hope he goes, and that it is not too stressful for him. I'm ready with my companion cards, and I will also write on the card that loud voices are upsetting to him. I'm also realistic in that he may not agree to go, or may become so anxious that it is not worth doing. We'll see. Either way is OK with me.

My top priority these days is to keep Jim happy and content. Every week that passes I get better at it, as I am always learning from Jim how best to help him through this next stage of his life.

Another post is written. Thanks for stopping by, and thanks for listening. I so appreciate each one of you.


Friday, April 28, 2017

"His Dementia is Very Advanced."

Why were these words so shocking to me? Perhaps because it was the first time I heard a medical professional confirm what I already knew.

There are times where it all seems like a bad dream, as if it is not real. How can this possibly be happening to us?

These past two weeks, there seems to have been a further decline. Every day, there is at least some lapse of his memory as to who I am. It occurs in the early evening or when he first wakes up in the morning. Sometimes, it is both.

Yesterday afternoon, just after lunch, he started talking about how the police were watching me, that I was a suspicious person, and that the police thought I was threatening.  I used diversion, turned on the TV, and it seemed to break this train of thought.

Jim's first appointment with Dr. S. (gerontologist), was late yesterday afternoon. The office staff are wonderful! We arrived 10 minutes early, and they took us right in. I provided up to date medical information and background, as well as a copy of his Health Care Proxy and Power of Attorney.

The nurse attempted to administer a Mini Mental State Exam (MMSE). This did not go over well at all. Jim told her that the questions were childish, and that "people have been after me for 20 years about this!".

At this point, Dr. S. came in to examine Jim. Through a skillful interview process she was able to ascertain his mental status. Jim did not object to this part of the evaluation. Although he did ask her to "Stop yelling in my face!".  (Over the last year or so, Jim has had a heightened sensitivity to volume of speech and any noise. I wish I had thought ahead to let the staff know this.)

While the nurse was drawing Jim's blood, Dr. S. reviewed with me her clinical findings. Her assessment that his dementia was very advanced really took be aback. She would like imaging of his brain (I expected this), but she is realistic that he may not agree to this.

We both agreed that the number one priority for Jim was to help him with his anxiety and agitation. She has prescribed citalopram at a reduced dose to start, to be titrated up if tolerated. This medication is often used to treat depression, but it also is used for treating anxiety and panic disorders.

Her plan is to start Aricept after six weeks of the citalopram. By starting just one medication at a time, it provides a clearer evaluation of the clinical response to each medication. She reminded me that medications like Aricept improve memory "only a little bit". It may help some with activities of daily living. Here is an interesting article that discusses the marginal improvements that are seen with drugs such as Aricept.

I'm not discouraged by that. I've known that cholinesterase inhibitors do not stop the progression of the dying brain; it simply improves some of the symptoms for a period of time (12 - 18 months). It doesn't help everyone, but does help some folks with dementia. Many times it is viewed as a way of delaying the need for institutionalization.

My brain is spinning. At times it just seems overwhelming. I'm hopeful that the citalopram will help Jim with his anxiety. This in turn will allow me to line up the help I'm going to need for Jim's future care. His agreement to others being in the home is key to everything.

Jim signed the Power of Attorney in 2012, giving me the power to act on his behalf. Five years ago! I knew then that I would be needing that POA for Jim. It's hard to remember exactly what his deficits were at that point, but they were such that I knew I had to get our affairs in order. I'm so glad I did.

Well, another post is written. Thanks for stopping by. My heart feels lighter already.

Monday, April 17, 2017

"You Need to Go Home"

It's been a rough few days. Jim has needed more than the typical attentiveness from me. I'm tired, but cannot sleep, which is unusual for me. Jim doesn't know who I am. But he is certain I am not Carole.

Jim's anxiety has been pretty high the last few days. This has required super high attentiveness on my part. It requires a presence; not just being in the house with him, but being in close proximity. I tire of the endless TV that helps to keep him entertained. My relief from the endless stuff on TV is my beloved math puzzles, KenKen. I love the challenge, and it actually is relaxing to me. I print one out, put it on a clipboard and go to town on solving it. My favorite ones are the 9x9, with 4 operations, expert level. I can claim no credit for my skills in this department; I inherited my math skills from my dad.

But today was different.  Jim took the clipboard from my hand and made some disparging comment. So, I set it aside, and focused on the mindless TV show he was watching. So much of what he said today was nonsensical. As I listened to him talk, it was almost like I was observing someone with a psychiatric break in reality. But that is what dementia can sound like. Words put together that don't make sense.

This is so incredibly sad. Jim doesn't know I am Carole, his wife. Who does he think I am? When I attempted to show him our wedding picture, rings etc, it did not change his thinking.

We finally went to bed, but he could not sleep. At one point he said "You have to go home."

Me: "I am home. I am here in our home that we have shared for many years."

Jim: "You're confusing me. You need to go home."

Me: "Why don't we wait until the morning to sort this out?"

Jim: "But you can't sleep in this bed. There is a third party...."

So, I said that I would sleep on the sofa because it was so late, and we would figure it out in the morning. He accepted this.

What will tomorrow morning bring? I don't know.

Most days I feel strong, and I know that I can do this. But in weak moments like tonight, I question myself and my ability to stay strong. I know we need help. And there is comfort in knowing that help is on the way.




Friday, April 14, 2017

Another Week in the World of Dementia

I've mentioned before the difficulty Jim has getting ready for the day. He struggles through the process, often saying "I don't know what to do next.". The hardest part for him has been getting dressed. He will go through several changes of clothing, sweating profusely, and experiencing a lot of anxiety in trying to pick out his clothing. My efforts to help him during this process have not been helpful to him, and seem to only add to his anxiety.

I made a wonderful discovery that seems to help! When he first gets up, he has a couple cups of coffee while watching Morning Joe on TV.  While he is sitting on the sofa watching TV, I quietly go into our bedroom, make the bed (an unmade bed is unsettling to him), and lay out his clothing for the day. I then hang a fresh towel by the shower, and put his toothbrush and shaver on the bathroom counter.

I had no idea! I've done this for the last 4 days, and it has worked beautifully. Apparently my presence while he was trying to pick out his clothing just added to how overwhelmed he felt. Now he walks into the room, everything is laid out for him, removing the anxiety producing effort of clothing selection. Such a simple solution that is working well, at least for now.

About a week ago, I had a precious few hours to myself when his friend Mike came by and picked Jim up for lunch. This week it was not successful. In no uncertain terms, Jim made it clear that he did not want to spend time with Mike. It sure was disappointing to me.

Jim is sticking to me like glue these days. As his dementia progresses I'm guessing that his anxiety is worsening as well. Perhaps he finds greater comfort in staying close to me. I'm finding the patience however, as I know that his appointment is coming soon. Once his anxiety is better controlled, I'm guessing that he'll tolerate being away from me for a bit.

I've decided to defer scheduling any appointments or making any firm plans for myself, until this can get resolved.

Yesterday I suggested that he check our mailbox to see if any mail was delivered. He happily agreed, put on his jacket and walked out the door. (Side note: I never worry about Jim wandering off. He is fearful of getting lost and would never wander off without me.) Meanwhile, I am taking care of some laundry. Jim comes back into the house:

Jim: "The mailbox is gone!"

Me: "The mailbox is gone?"

Jim: "Yes! I don't know where it is!!"

Me: "Let's go look together."

As we exit the house through the garage Jim walks over to my car.

Jim: "I'll look in your car."

Me: "Let's look at the end of the driveway."

We walked down the driveway together. He seemed absolutely amazed to see the mailbox. I'm not sure what happened. Did he even make it to the end of the driveway the first time? I don't know, but it  was another sad reminder of his memory loss of things that were once so familiar.

Jim's eyeglasses were broken beyond repair. They are bifocals, with a slight correction for distance, but primarily used for up close. He has several pair of "readers", but he was insistent that he get a new pair of glasses. I knew this was going to be a challenge.

I timed the xanax so that he would have the most benefit for the car ride and the actual appointment. His eyes were examined, and he picked out a nice pair of glasses, almost identical to his broken ones. Then comes the sticker shock. Frames were $245, and the lens were $310. Ouch!

We returned a week later to pick up the glasses. I timed another xanax to help him through this appointment.  Jim tried the glasses on, and long story short, he didn't like them. The optician was very good with Jim (I had given her one of my companion cards). He insisted that the frame was "not straight enough". After many attempts at adjustment, it became clear that Jim was not going home with these glasses.

The next day I called her out of earshot from Jim, and was able to get a refund on the frames, but not on the custom lens. Since then, Jim has asked a couple of times about glasses. I simply say that the optician is trying to locate the exact frame that he wants. I think he will eventually just let it drop. He has some good quality readers for up close, and the distance correction is minor.

The reason for sharing this story is because I surprised myself by how well I handled the eye appointment. In the past, I would have been totally stressed during the appointment with the optician. However, I was internally very calm. I think I am getting better at this. My conversation with myself: "No one died. We all get to go home in one piece, and it is not the end of the world. So just let it go, it just doesn't matter."

And so it goes, another week in the world of dementia. Nothing too exciting or earth shattering. I'm learning so much. As Jim finds his way through this next stage of his life, I'm glad I can be here to share this part of his journey.

Another post is written. Thanks for stopping by. As always, my heart feels lighter to be able to share with my dear readers. Thanks for listening.





Saturday, April 8, 2017

Dementia Challenges; Rising to the Occasion

Well, it has been interesting since returning home from Florida. I realize now that I never should have traveled to FL. It definitely was a judgement mistake on my part. I'm certain that my judgement was clouded by the dreaded winters in upstate NY. And sure enough, it was a typical, brutal winter. But in retrospect it was not worth it. We are done with travel, and I am OK with it.

Jim's dementia continues to decline. It is such a sad thing to see. Lately, his memory struggles quite frequently with how he knows me:

"How long have you been here?"

"Are you sure we are married?"

I go through the details, showing the marriage license and our photo on the piano. He accepts that this is the reality for that moment, until he forgets again.

He also asks a lot about our last dog:

"Where is our dog?"

"Why isn't our dog here?"

It is heartbreaking to have to keep breaking the news to him that our beloved Jack is gone. 

Dementia is a cruel disease. No concern for the person afflicted, or for those who love them.

Some encouraging news about driving and Jim's car. As I mentioned before, he was certain that the black Accord (his car) belonged to Mike, our friend who kept an eye on our house while we were in FL. After realizing that his perception was not going to change, I decided to go with it. The Accord is at Mike's house. We are now a one car family. This is a huge relief! It essentially solves the driving concern, at least for the most part. 

Yesterday we were headed to the mall and he said that he would like to drive. I responded "How about if I drive there, and you can drive home?". He accepted this, and as I thought, he completely forgot about this and I drove going home. 

If things go as I expect, at the end of the month I'll sign the car over to Mike. It is such a relief to be down to just one car. I've notified those who need to know to not ask Jim about his Accord. 

Jim's anxiety is very much present every day. I have some of the anti-anxiety pills left, but I am hoarding them for when he needs them the most. I just need to make it until we see the gerontologist at the end of this month. If we have nothing planned (no visitors, no appointments etc) I can usually manage his anxiety without the pills. But any variance to this, and help is needed. His anxiety when I am driving is almost unbearable for me. Without an anxiety pill:

"You almost killed 3 people!"

"You were going 100 MPH!"

"You could have killed us!"

It's all so real to him. In his mind, all of this is true. I can't imagine how hard it must be to be inside his extremely anxious brain. 

Getting ready for the day is extremely difficult for him. I try to anticipate his needs as much as possible, but I'm not always successful. I believe he is heading toward the moderately severe stage of dementia. Every morning, it seems he needs more and more help with getting ready. Yesterday he shaved twice (morning and evening) but never brushed his teeth. He had no idea what he needed to do next to get dressed after his shower. 

He gets very upset if I cannot figure out what he is trying to tell me. "Don't give me that! You know what I mean!" I  almost have to be a mind reader. Sometimes I can figure out by the context of the situation. 

I did a trial run with Mike spending time with Jim last Wednesday. I was able to get my hair done (I was desperate!), got my car washed, and stopped at the store for some groceries. I was gone for about 3 hours. Jim did OK, but not great. And this was after giving him xanax before I left. Mike told me that he was getting pretty antsy, wanting me to get home. Having that short period of time to myself was heaven. It felt so good. 

Once Jim gets some help from Dr. S. for his anxiety, I anticipate that I'll have better flexibility for some time to myself. Priorities include support group, seeing my mom, and my own Dr. appointments. 

I have to admit that the times when Jim falls asleep for a nap during the day it feels glorious! He is asleep right now, which gives me the freedom to write this post. I would describe my days as being in a state of hyper-attentiveness. I must always be ready to be there for him. 

Communication skills continue to challenge both of us. Yesterday morning:

"Where is my watch?!?" (Obviously in a lot of distress)

I knew that he hadn't worn a watch in over 15 years.

Long story short, he finally found a white t-shirt, picked it up saying "There's my watch!"

I am learning that when I speak to Jim, it is very important to speak slowly, with frequent pauses. This gives him a better chance at processing what I am saying. Also, it is important to give minimum information, keeping it all very concise and simple. I'm getting pretty good at doing this. I've learned so much on this dementia journey!

The challenge now is to find activities that keep him contented. If we attempt to go someplace, even if just to the grocery store, the anxiety rises to a high level, making it so difficult for him. If we stay home all day, he is "bored to death". I'm holding out a lot of hope for help from Dr. S. for Jim's anxiety. 

One of my favorite blogs by Dr. Elaine Eshbaugh inspired me. She wrote about the brain working very hard to interpret surroundings when you have dementia. This process is exhausting. This makes it difficult for the person with dementia to control their impulses and emotions. Elaine points out that while we as caregivers may say we are having a hard time when this occurs, the person with dementia is really having a hard time. I've learned so much from her.

Dementia challenges; I choose to rise to the occasion. This journey could be characterized as a sad, lonely and long one. But as Jim and I go forward, I'm appreciating the joy that we can still find in life. And I am ever so grateful for all the support I am receiving along the way.

Well, another post is written. Thanks for stopping by. I appreciate each and every one of my readers.








Saturday, April 1, 2017

Mr. Dementia and Jim Return Home

It's good to be home. We've been home for 5 days and we are settling in.

The morning we were preparing to leave FL, Jim managed to bump his head twice, really hard. It quickly turned into "Why did you hit me in the head three times?" He was so angry at me. In his mind, I had indeed hit him in the head, so of course he was very angry.

Remembering that you can't reason with someone who is incapable of reasoning, I simply apologized and said it was an accident. It did not do anything to dissipate his anger. It was especially worrisome given that he had already had one of his anti-anxiety pills. I knew we were in for a long, difficult day. And remembering that Mr. Dementia is NOT Jim (and vice versa) helped me to maintain my calm. I'm not saying I wasn't stressed out (I was!), but separating Jim from dementia always helps me when I am at my lowest point. Damn dementia.

I gave him a second pill. (This part is tricky, because for years he has had a few pills in the morning and a couple of pills in the evening. Giving an extra pill means I have to make up a story about how I forgot to give him his daily aspirin.)

By now, he is pulling items from the suitcases and throwing them around.

At this point I'm wondering if we will make it to the airport. It's a long story, and it was a long day, but suffice it to say that we made it home safe and sound. A total of 4 pills were given. Without them, I know that we would have not made it home. The anxiety level was very high, even with the pills.

The "Meet and Assist" service through JetBlue was of minimal help. When I initially requested this service, I requested a notation that Jim's deficits were dementia and anxiety. I'm certain that none of this was relayed to anyone. In retrospect, I think that because Jim's deficits are not visible, people assume that we are OK. At check-in we were supposed to be met by a helper. Didn't happen. The clerk eventually found someone to help us, but this young woman also was assisting an elderly couple, one of whom was in a wheelchair. The woman barely glanced at us, never said a word, and proceeded to ignore us the whole way to security. The one thing that was helpful, was that by following her, we easily found our way into the prescreened TSA line; we did not need to remove shoes, take out laptops etc.

There were a couple of tense moments. I needed to use the restroom. I situated Jim directly across and asked him to just wait until I came out. Unfortunately there was a long line. I went back out, warned Jim that it would take quite a while due to the long line. I worried the whole time. He was OK by the time I was done. I did not see one of those "Family Restrooms", which would have been perfect; we could have gone in together.

Prior to boarding, I went up to the desk (alone) and asked if we could board first, giving an explanation as to why this was needed. This part worked great. We were the first to board, giving us a chance to settle in prior to the regular boarding.

When we arrived home, Jim seemed to remember everything about our house, with the exception of new furniture that we purchased last summer for our great room. He still keeps asking "who bought this?".

While we were in FL, our friend Mike would come over weekly to do a walk through of the house and to start Jim's car (Honda Accord). Mike used the empty bay in our garage to store his mustang convertible. Mike took his Mustang home prior to our arrival.

Jim is totally confused about his Accord. He insisted that the car is not his, that it belongs to Mike. Showing him the title, the registration, bill of sale etc all in his name did not convince him. He had a brief time period two days ago when he realized that it was his car, but that did not last long. Part of his confusion may stem from the fact that he knew Mike was going to store one of his cars in our garage over the winter. So maybe he transposed some of the facts, thinking the Accord was the car Mike stored...I really don't know.

So, the plan is to wait out the weekend, and if Jim still thinks that the car belongs to Mike, then Mike will take it home with him. This certainly would solve the issue of driving. My concern is that with Jim's car gone, will he want to buy another one? Or, will he suddenly remember that the Accord is his, and wonder where it is?

In the back of my mind, I've always known that eventually I wanted Mike to have Jim's car. Mike and Jim are both car nuts. Jim's Accord is a beautiful black,sporty, V6, two door coupe. It only has about 28,000 miles on it, so still like new. If Mike could have this car now, it might solve the problem of Jim driving, and Mike could start driving and enjoying the car now so that it doesn't develop problems from disuse. We'll see how all of this plays out.

Jim  needs some minor help getting ready in the morning. "What do I do next?" Where is ...?" But all of this is fairly easy for me. I find that it takes him a very long time to get ready, including a few (sometimes several) changes of clothes. But all of this is doable. I know that much greater challenges are ahead for both of us.

It's so good to be home! And I think Jim feels the same way. Yesterday there was no need for any anti-anxiety pill. Hooray! I focus on low key, low expectations, minimal social activities, and a very calm environment. I'm hoarding the pills that I have left. We will be seeing his new doctor (gerontologist) in about 3 weeks, and I am expecting a longer acting, safer medication to help Jim with his anxiety. In the meantime he has an appointment with his eye doctor on Monday. His glasses are broken beyond repair. I have several pair of "readers" for him, but he is anxious to get "real" glasses. I know that the day will be incredibly stressful for him, so will give him one pill in the morning and one pill just before the appointment. Fingers crossed it all goes well.

Another post is written. As always, my heart feels lighter. Thanks for stopping by.




Saturday, March 25, 2017

Living In an Altered Reality

Lately, Jim has been struggling with increased anxiety and agitation late afternoons and into the evening. Over the last couple of months, I have seen a worsening of this very concerning change. It is often referred to as sundowning. This website suggests different theories of why this happens, but no one knows for sure. There is a list of possible causes and coping strategies, all of which I am taking to heart, as I try to understand and help Jim.

Confabulation is another concept I am becoming sadly familiar with. For Jim, it is more likely to occur later during the day, hence the association with sundowning.

A couple of days ago he took a nap in the late afternoon. When he awoke, he was as confused as I have ever seen him.

"Where am I?"

"How did I get here?"

(Looking out the windows toward the ocean) "What am I looking at?"

I gently answered his questions, remembering for the most part how important it is to answer simply, not overloading him with long, confusing (for him) details.

It did not go well at all. He became extremely agitated and angry.

"How could you do this to me?"

"You woke me up and painted this whole picture! What are you doing to my brain?"

Of course I hadn't woken him up. And I was simply trying to help orient him by answering his questions. But remember, you don't argue with dementia; you will lose. And you don't reason with someone who is incapable of reasoning. It will only aggravate the situation.

Jim:  "You could fix this right now!"

Me: "How?"

Jim: "You can change the picture!!!"

He was so angry at me. He truly thought that I had woken him up and given him false information about where we were and how we got here. At least that is what I think he thought. But I could be wrong about that.

When he is that agitated, it is very hard for me to keep calm internally.

I quickly realized that disagreeing with him or attempting to reason with him was not going to work. So, I did something very strange. I apologized to him for my actions. And, I told him that I was confused. And that my confusion was the cause of what happened.

What else was I to do?  Knowing how angry he was, I wanted to say something to dissipate that anger. Surprisingly he accepted this, and it helped him to calm down. He actually expressed some worry for my state of mind! ("Should you see someone about your confusion?")

Was this the right thing to do? I really don't know. But his level of agitation was quite concerning, and I was desperate.

Yesterday afternoon he wanted to take the trash down to the receptacle. He has done this before; it is a very short distance and within sight of our condo. Sparing the many painful details, when he returned, he accused me of locking our car (huh?), cursing at him (something I have never done), making him go back and forth 4 times, and putting 4 people in the back seat of our car. Oh my goodness.

He was so angry at me. But I have to realize that in his mind, all of the above is true! In his brain, in his reality, I was mean to him, so of course he is angry at me.

Confabulation; the curse of dementia.

For those who have been following my blog, you know that Jim's doctor prescribed a sedative for our flight home. The prescription provided some extra pills. In desperation, I gave him one yesterday afternoon following the above incident. He was inconsolable, and I just did not have any more rabbits in the hat. It worked.

If confabulation is the curse of dementia, sometimes amnesia can be a blessing. Jim has no recollection of the above two incidents. What I do not know, is if he carries a residual feeling of anger or anxiety. Maybe he cannot remember what happened that made him so upset, but does he remember feeling upset? I don't know.

Is there a good option out there for helping Jim with his anxiety? I hope so. The prescribed anti-anxiety pill is short acting, lasting about 4 hours. I'll be very relieved when we meet with his new gerontologist, Dr. S., and see what she can recommend.

Any time that I get tempted to feel sorry for myself, I am reminded that Jim is the one who is suffering with a damaged, dying brain; not me.

I can't wait to get home. We leave Monday. Plans are made. I received a confirmation email from JetBlue regarding the "Greet and Assist" service.

Over the last 5 days I have been gradually, intermittently talking about our flight home. It's been tricky. I can't just spring it on him at the last minute. At the same time, it's important to not overload him with too much information at any one time. Perhaps this has been the source of his increased anxiety/agitation over the last few days?

Yesterday morning he completely packed his suitcases and toiletries. I gently suggested leaving out enough clothes etc for the next couple of days. I don't think he could process what I was saying. So I just let it go. When he gets ready for his shower this morning, I'll go into his suitcase and pull out clothes for today.

All of the wonderful folks in our small community are having a pot luck on Sunday for all the snowbirds who are heading home. It will be a nice opportunity to say goodbye.

Another post is written; thank you dear readers for stopping by. The kindness from those who comment always touch my heart.






Tuesday, March 21, 2017

In the Time it Takes to Shower...

I can accomplish a lot! While Jim showered yesterday morning, I contacted JetBlue and arranged for their "Meet and Assist" service. It is available for those with special needs, whatever those needs might be. Here is a link that I found helpful.

Once we park our car, we will proceed to curbside check-in. Someone will be waiting for us to guide us through the airport, get us to the head of long lines, arrange for private security screening, and provide "silent boarding". This allows us to board first, get settled in our seats, prior to the typical mass confusion that follows with routine boarding.

There will be some down time, while we wait for boarding. I've got some of Jim's favorite Car and Driver magazines that I stashed away. He is a car enthusiast and will enjoy looking at the pictures and reading the short articles. I also will pack some snacks and drinks so that we don't have to worry about navigating the airport, trying to obtain food at the busy restaurants.

I'm not a person who cries easily. But every once in a while I catch myself with tears streaming down my face. After I hung up from JetBlue I had one of those moments. It was a combination gratitude, relief, jangling nerves, and I'm not sure what else.

I had another one of those moments when I received a call back from Jim's doctor about the need for a sedative. He graciously prescribed an anti-anxiety medication. Prior to hearing back from the doctor, I really did not know how we were going to make it home. I imagined a full blown anxiety attack at the airport, with problems going through security, waiting in line, fighting the crowds, on and on.

With the "Meet and Assist" service and some anti-anxiety medication, I think we will be OK. The doctor prescribed enough pills so that I have been able to do a test run to see how Jim responds.

Jim's language skills continue to decline. There are a lot of half started sentences that he is not able to finish:

"It's almost like ..."

"I need to ...."

"Once it will be...."

Follow up questions by me to try to understand what he is saying are generally not helpful, and actually will frustrate him more, with a response like "You know what I mean!!!"

So instead, I have been responding with vague answers myself, such as:

"Maybe..."

"I think so..."

"I'm not sure..."

This seems to work better overall; less frustrating for Jim and less frustrating for me.

I continue to learn as we walk this dementia journey. I read an article recently that enlightened me to the fact that reasoning is an ineffective strategy for someone who cannot reason. This has been a challenging lesson for me to learn. When you think about it, reasoning is the basis for a lot of human discourse. With dementia, the rules change. I still don't have this figured out completely, and probably never will. But I am slowly realizing and trying to adapt to the fact that when Jim is struggling, all my reasoning will likely have very little impact on him, other than to possibly frustrate him.

His brain is dying. But in spite of that, I still have my sweetheart. At least for now. I know that there will come a day where it will be hard, maybe impossible, to see beneath the dementia that has taken over his brain.

Until that day comes, I strive to make the best of each day and appreciate the love and the life that we share together.


Tuesday, March 7, 2017

"Is My Mother Still Alive?"

This is a question that came out of the blue! It totally caught me off guard. It was incredibly sad for me as it represented a worsening of confusion. Jim's mother developed dementia in her 60's. Together, Jim and I provided care for her, and she was able to stay in her own home up until a couple of months prior to her death, following a major stroke. We had hired help during the day while we were working, and after work, Jim and I took turns spending late afternoon and into the evening with his mom. He took such good care of his mom! He was always patient, loving, caring and always wanted the best for her.

She died in 1999. When I answered his question about whether she was still alive, he accepted it, was sad, and then moved onto a different topic. It almost was like he was trying to sort out things in his mind.

Jim's level of confusion seems to have worsened over the last week. We've had daily, multiple conversations regarding where we live, what our house looks like, what cars we own, on and on. Fortunately I have pictures of the exterior of our house, as well as a couple of good pictures of our great room.

He's not been upset about it, just very confused. Within minutes of reviewing where we live and showing the pictures, he asks again, and again, and again.  It's incredibly sad to see this loss. The only saving grace about this is that it has not caused him to be angry or upset, just confused.

I have all the patience in the world! I'm not kidding. To me, this is the easy part of helping Jim with his dementia. I am a patient person by nature. And it feels good to be able to offer some reassuring, orienting information that hopefully helps him through the moment.

This morning when he woke up, he said "I've got to get going; I've got to get to work!" He was visibly relieved when I told him he was retired. He wanted to know more details, (when? from where?), and was very happy that he didn't have to go to work.

Regarding practical matters, I'm continuing to learn work arounds, as I face the challenges of Jim's decline. Lately when he makes a sandwich, he takes the knife from the chicken salad and then places it in the mayonnaise. I've thrown out a couple of jars of contaminated mayonnaise over the last week or so. It is not helpful to remind him; he will not retain that information and I risk upsetting him by the reminder ("I know that! You don't have to say that!"). So my work around is to buy mayonnaise in the squeeze bottles. No possible risk of cross contamination, and it is pretty easy to use.

Laundry is abundant! Jim has several changes of clothes as he gets ready for the day. All of the changes end up in the laundry. So the white polo shirt he put on for 5 minutes, and then took it off to put on a t-shirt, ends up in the laundry. He sweats profusely during this time period, indicating to me how stressful it is to find just the right clothes to wear for the day. I feel so bad for him. My attempts to help him pick out clothing appropriate for the weather/situation generally are not helpful for him. So, I've learned to just let him struggle through this, rather than try to help. My attempts to help just seem to add more stress.

Jim's sudden worsening of his dementia symptoms makes me wonder if there is perhaps a vascular dementia component. He was diagnosed with hypertension and high cholesterol many, many years ago (his dad died of heart disease when Jim was only 20). He was not properly treated for his hypertension, high cholesterol until he came under the care of Dr. C. So vascular dementia is certainly a possibility. In addition, he was a smoker. He finally quit, after struggling for many, many years with unsuccessful attempts to quit.

None of this really matters of course. It is more of a clinical curiosity and represents my need to understand what is happening.

Jim asked today (several times) if we could go check out his car. Each time I responded that his car was 1200 miles away, and that we had decided to wait until winter was over before heading home. Each time, he accepted this explanation.

And so, another week has passed, and unfortunately I am witness to another significant decline. I am so looking forward to going home. My plan is something that helps me to stay strong. I know that the support groups are going to be a big part of my survival in the future.

I have to give a shout out to Jabberwalky, who has been an incredible support to me, both through her blog and through our correspondence. She is the one who helped me to understand that once you have accepted your role as caregiver, things get a bit easier (it is never easy, of course). In other words rather than trying to fit caregiving into your life, you recognize that caregiving is your life. Once you have accepted that, everything else seems to fall into place and flows just a bit easier.

Writing this blog is so therapeutic for me. But I also hope that others who may be traveling this sad journey of dementia will find some support as well as camaraderie. Thanks for listening, and as always, I so appreciate each one of you.



Tuesday, February 28, 2017

The Unexpected Phone Call


There is a hobby that some adults enjoy; adult coloring. I don't enjoy the coloring books, but I like the ones that are postcards or note cards. It allows you to get creative and share your art work with others. I'm not artistic at all, but with this, there are no right or wrong ways to express yourself. I like the colored pencils better than the pens, as it allows more subtle shading. The photo above is a postcard I just sent off to my mom. Kind of relaxing, and my mom seems to really enjoy getting them.

The last week or so I've noticed that Jim needs reminders to put used utensils and cups in the dishwasher. I was surprised the other day to find him simply rinsing or wiping off his fork and putting it in the drawer. It's happened a few times now, so I need to make sure I'm close by when he is fixing himself a snack, or something to eat. I'm real casual about it. As I see him ready to just rinse or wipe, I go over and say something like "do you want me to put that in the dishwasher for you?" It works. Just another change for us to adjust to.

Late last week, I received an unexpected phone call from Jim's physician (not the new one, the prior one). The call was prompted by the request for the transfer of records to Jim's new physician. As I've written before, I was never able to communicate properly/privately with Jim's physician. The size of his medical practice made it near impossible to speak with him by phone, privately, without Jim nearby.

(Background information: Jim never agreed to let me come with him to his doctor appointments. I think he was afraid I would mention my concerns about his memory. H also absolutely forbid me to ever say anything to Dr. C about any of these concerns.)

When Dr. C called, he called my cell phone. He had tried our landline, but obviously there was no answer since we are in FL. Perfect! When I realized who it was, I quietly said to Jim "it's my mom; I'll go in the bedroom to take the call".

Dr. C said the call was a followup to see why Jim was changing physicians. The floodgates opened, and I proceeded to tell him Jim's situation. Interestingly, he said he had noticed some minor issues with Jim's memory, and repeating himself, but he had not picked up on anything else.

I guess that doesn't really surprise me. The quick office visit to listen to your heart and lungs, draw some blood, do an ECG, would not necessarily lead to a conversation that would reveal significant deficits.

When I explained all of what is going on, he was shocked, to say the least. The conversation was a good one. He went on at length to offer help, referrals, whatever I needed, even if it was just to come over and talk to Jim.

What if this conversation had happened several months ago? Would I still have pursued the transfer of his care to a gerontologist? I don't know, and I guess at this point it doesn't matter. As I've mentioned in prior posts, I've already met with Jim's new doctor, so she is aware of his issues; I feel confident about her ability to work with me to help Jim with his anxiety and other issues.

As a new patient, the first available appointment with the new doctor is in April, which means we are kind of in limbo right now. Her practice recommends going to urgent care for issues that cannot wait until the first appointment.

I've mentioned in previous posts that we will fly back home the end of March. I've arranged for a friend to drive our car back home for us. This should minimize the stress for Jim to just one day, as opposed to 3 days. Our drive down was just short of a disaster. I am still left with worries about the flight out of Orlando, which is an international airport. It can be confusing and overwhelming even for the most astute.

After my conversation with Dr. C, it occurred to me that he may be willing to help me with an Rx for a sedative for the day of travel. Given that Jim is kind of in limbo, I'm not sure that he will be willing to do so. Technically Jim is no longer his patient. But his new doctor, who has not even met Jim, would be very unlikely to prescribe anything without seeing him first. Understood.

So, with a bit of trepidation I penned a letter to Dr. C, requesting help with a sedative for this one day of travel. Will he oblige? I don't know, but I am hopeful.

One thing that I do know (that I acknowledged in my letter to Dr. C) is that prescribing sedatives for someone with dementia is very tricky. Even something as seemingly benign as benadryl can increase confusion in those with dementia. Valium, a common sedative often prescribed, can also increase confusion with someone with dementia.

Sometimes a beta blocker (such as propranolol) is used; it slows the heart rate, lowers BP, and results in calm.

Dr. C knows Jim and his medical history, so I trust his judgement in whatever he recommends. It also occurs to me that he may decline, or that he may say that the risks outweigh any benefit from a prescribed sedative.

I don't know, but I figured it is worth a shot.

Well, another post is written and my heart is lighter. So many times I question my judgement about things. But I know that I am doing the best that I can and I need to make sure that I am kind to myself.

Thanks for stopping by. Sometime I think the the conversations we have in the comments section add a perspective that I could never provide. So for that I am ever so grateful 😊