Dementia Update; Out of Touch With Reality

There is a memory care facility  that will be opening in December of this year. It is less than 5 miles from our home. I arranged for a meeting with a representative, and Jim's brother graciously stayed with Jim while I went to my meeting. It's always good to get information and know what your options are.

It's going to be a lovely place. They are guided by the principles of Teepa Snow. Teepa is a dementia educator, and her philosophy is based on positive approaches. The facility rate is based on single versus double room, and level of care. If the person is a diabetic, or if a person is incontinent, this puts them in the higher level of care. It is very expensive, at $92,000 a year for someone with Jim's level of care. While I say it is expensive, I must also acknowledge that there are nursing homes in the area that charge north of $100,000 a year.

The representative was very knowledgeable and informative. She was thoughtful, caring, and I could tell that she really has a heart for the elderly and for those with dementia. She also provided me with a contact for some home care that sounds like it might be a good match for our needs. I've called twice this week; still waiting to hear back from this contact.

One of the limitations of home care agencies that I have found frustrating is the minimum number of hours per week. Usually it is something like 24 hours a week. That just would not work for us, at least not at this point. I'm looking for some help that would be just a few hours a week. Jim would need a gradual approach to someone else being here to help provide care.

In the meantime, a very dear friend of mine has connected me with her sister-in-law, Kathy. Apparently Kathy has done home care privately for a number of years, working with folks with dementia. I spoke to Kathy by phone and I was quite impressed. She is a polite, soft-spoken woman with a real heart for  those with dementia. She has some family travel planned over the next few weeks, but when she returns to the area in mid-October, we'll give it a try and see how it goes. I'm hopeful!

At this point, the hardest part (for both of us!) is the psychotic component to his Alzheimer's. As time passes, it seems like he spends more of each day further out of touch with reality. His hallucinations are so very real to him. It is so strange to have these bizarre conversations throughout the day which just make no cognitive sense. At times I feel like I'm losing my mind! This afternoon we were watching a documentary about China wildlife. The following is just one example of several confusing conversations we had.

Jim:  "It's the five and way it was. Do you think so?"

Me: "I think you're right about that."

Jim: "He walks the plant too loose. Did he tell you that?"

Me: "I'm not sure what he said..."

Jim: "What do I have to do about it?"

Me: "From what I know, everything is all set, so we don't need to do anything. We can just relax."

Jim has taken to rummaging. Our home is not cluttered, fortunately. But he does manage to find drawers to go through, my purse, take things out, put them other places etc.  He clearly is having difficulty figuring out where things go. I have found banana peels in bathroom trash, in the fridge and in the kitchen cupboard. A huge wad of clean tissues were in the dryer, articles of clothing in different parts of the house....I've decided to not let it bother me. I can't possibly follow him around and monitor his every move, every minute of the day.

We were at Wegmans last week and ran into one of our neighbors. We haven't seen her in a long time, and I wasn't sure if she knew about Jim's dementia.

Neighbor: "I haven't seen you in a while, and I was wondering how you are doing?"

Jim: "Just looking for a Saudi."

She gave me a knowing look, squeezed my hand and said "So good to see you. Be sure to call if you need something."

What must it be like inside his brain? I'm only hearing bits and pieces, but it must be so hard for him to have these crazy thoughts running through his brain all the time.

Living in an altered sense of reality. Another curse of dementia.

Thank you dear readers for stopping by. I appreciate each one of you. As always, my heart is lighter as I finish typing this post. Thanks for listening.

Dementia Tries to Throw Us Off Balance

One of the physical changes I have noticed over the last several weeks/months is the gradual worsening of Jim's balance . From what the doctor has told me and from what I have read, this is not uncommon in the later stages of dementia. I worry about him falling. Falls often lead to a cascade of other problems and a possible hospitalization. When I study his gait, I realize that a walker would not help, in fact it would probably increase the likelihood of a fall and injury. When he walks, he does not pick up his feet enough, causing a shuffling kind of walk that results in his sneaker catching on the floor. In addition, he walks more stiff-legged, which also causes problems with his balance. His favorite sneakers with the rubber soles don't help, and I believe make it worse. But he is not amenable to wearing different footwear.

His favorite outdoor activity, sweeping the driveway, is no longer safe for him to do because of his unsteadiness. This is such a sad moment for me; sweeping the driveway was one of the few things that he was able to do, adding to his sense of accomplishment. Jim has no awareness of his balance problem. This means that I need to pay close attention to the driveway; I try to get out there to clear the driveway before he has a chance to see the errant grass clippings, twigs etc.

As you can see by the above photo, I had grab bars installed. The closest one will give him support as he maneuvers over the small step into the shower. The other bar is placed so that when he is sitting on the shower seat, he can use the bar to safely lower himself as well as pull himself up. There is a hand held shower head that will be useful too. He does not see the need to use the corner shower seat at this time, but at some point I'm guessing he'll agree.

Sometime in the future I'll add a grab bar in the commode room if it looks like it is needed. A good friend of ours installed the grab bars for us. He is a carpenter by trade, and semi-retired. He also fixed a french door in our lower level that needed adjustment in order to use the deadbolt. I am so grateful for our friends!

Jim's breaks with reality are more frequent. Although this is to be expected as the disease progresses, it can make for some very rough days. One of the more common delusions in folks with Alzheimer's Disease with Psychosis is one of misidentification. Jim experiences this quite frequently, sometimes not realizing who I am, and even more often, not recognizing our home. This is the one that seems to be the most troubling for him. It occurs when we are driving home from someplace. As we pull into the driveway, he insists this is not our home. He becomes upset thinking that we are going to walk into a stranger's house. The only thing that breaks this train of thought is to leave, drive around a bit, try some distracting conversation, and then head home.

The card below is the "Companion Card" I had printed. I know I have talked about this before, but for newer readers I thought it was worth mentioning again. I always carry a few with me. The response I get from folks is always so positive. I like to think that perhaps the cards help others to be more understanding whenever they run into someone whose behavior seems odd or strange. A little kindness and understanding go a long way.

I want to end this post with a very sweet moment that I will cherish forever. A couple of days ago, after a particularly psychotic day, Jim came up to me, hugged me and said "Thank you for everything you do for me." With these very precious words, all the stress just melted way. I hugged him hard and said "And thank you for everything that you do for me too."

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

Dementia and Driving; Plus a Few Updates

I thought I would write a bit about dementia and driving. This was one of the toughest issues for Jim, and for me. Jim has always been a car nut. He appreciated a fine car and always had a sporty car that he enjoyed driving.

Giving up driving is very, very difficult for many folks. Whether it is dementia or some other physical ailment, it still represents a loss of independence. Regular readers will remember that we flew home from wintering in Florida, due to my concern for Jim's driving. By that point, I knew that he should not be driving.

There may be some folks who give up driving without a fuss, but that certainly was not the case for Jim. I have a few strategies that I use to help with this difficult transition:

   * I make certain that I am first out of the door and then quickly jump into the driver's seat. I also get real chatty as we start to head out the door, trying to distract him with conversation so that he won't have an opportunity to think about driving. Most times this works, and Jim just meanders over to the passenger side.

   * Be ready with excuses. A few times Jim would knock on the driver's window and tell me he wanted to drive. I would respond cheerfully with "OK. But I have to run into the house to go to the bathroom. I'll be right back." I would then go into the house for a few minutes and then return to the garage to inform Jim that I had an intestinal upset and needed to stay home. This always worked. He is fearful of being without me, so I never worry about him wanting to drive away without me.

   * Distraction and strategic positioning: When returning from the store (or any other outing), I position myself as we walk across the parking lot so that it is  natural for me to get in the driver's seat. I also put any package/groceries in the back seat on the passenger side, and then open that door for Jim as I quickly go around to the drivers side. I also do the chatty conversation, trying to distract so that there is no opportunity for him to ask to drive home.

   * Be ready with more excuses. I've never had to use it, but if we were out and about, and heading back to the car, I am ready with another tactic should he suggest that he drive home. I would simply say "We received a notice that your license has expired. We better go home and check it out." His memory is so poor, that once we were home this would be long forgotten.

I have read of ways to rig the car with a kill switch, but I've never felt that I needed to resort to this tactic.

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Some updates: Jim's communication skills continue to decline. He has started to use what is called neologisms, which are made-up words. It is increasingly difficult to understand what he is trying to say. So, how do you respond to someone when you have no idea what they are saying? Obviously I try to take current circumstances into account. Also, I respond differently depending on his mood. If his mood is good I respond with saying something upbeat, positive or neutral, depending on the circumstances. Examples: "You are right about that." "I believe that is so." "I agree with you on that." If he is upset, my approach is a little different: "Everything is all set." "I will take care of it." Sometimes I say "show me" if I think he is able to point out what is bothering him.

I don't always get it right, but it works better than trying to quiz him about what he means. It is very upsetting to him if he thinks I don't understand him.

Jim's brother came for a visit last weekend. There will be a bit of a learning curve, as he learns how to best communicate with his brother. The hardest part for him was to make sure to include Jim in conversations, rather than talking around or over him. By the time he left, he was doing much better at this. He seems receptive to my guidance and expresses a very real desire  to be of help to both of us. I continue to be cautiously optimistic that this may turn out to be an opportunity for some very real support to me. He plans to come in every other weekend. Eventually I'm hoping that it gets to a point where I feel it is OK to leave the two brothers alone at home, while I go out by myself  for a bit. I can't wait!

There is a website I want to share with those who are caring for someone with dementia. It is connected with an Alzheimer's forum in the UK. In all of my searching I have found this to be the best forum. It is called Talking Point.

Well, that is the latest in our world of dementia. Thanks for stopping by.


 

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!

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!

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.

"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.