Tuesday, November 14, 2017

Dementia's Wife Steps Out of the Caregiver Role

It's been a while since I have posted. Slowly I am adjusting to this major life change that Jim and I are experiencing. At times I am incredibly sad. How can I not be? I miss him terribly. He continues to lose ground cognitively and physically. This is expected of course, but still just incredibly sad. I don't know which is worse; losing him a little bit at a time or dealing with a sudden death. Of course I don't get to choose, so I will make the best of it and appreciate what we still have together.

I see Jim every day, usually spending the morning or the afternoon with him. I enjoy this time with my sweetheart. I help him shave, brush his teeth and make any clothing adjustments as needed. He is always glad to see me. We still hug, kiss, and hold hands.

I've noticed that he is speaking less; he rarely initiates a verbal exchange. In response to others' conversation or query there may be no response, an unintelligible response, and every once in a while he says a phrase or two that makes perfect sense.

In spite of this, he is still able to quietly tell me how much he loves me, or to say "You are the love of my life". This is a phrase that was commonly said to each other over the years. Somehow he is still able to express this. How lucky I am to still be able to feel and hear his expression of love for me.

His gait is slower and more unsteady. He usually uses the railing on the wall for balance as we do our laps around the unit. His kindness to others who live here is such a gift! To be able to see the "real Jim" in action is so heartwarming. It is expressed by a gentle touch, a kind word or lending a hand to someone who needs his help.

Never, ever, did I expect such a smooth transition for Jim. I anticipated that he would be miserable, unhappy and always trying to "go home". The kind, gentle approach and an environment perfectly suited for one with dementia have all contributed to his happiness and contentment. The nursing home is able to do for Jim what I never could have provided for him at home. A warm, loving, caring and safe environment.

I am happiest when I am with Jim. It is so reassuring to see him, touch him and be reassured that he is doing OK. Evenings are the toughest for me. By the end of the day I am tired, low on energy and feel the emptiness or this big house.

I'm getting my life in order to prepare for downsizing sometime early next year. It will be a relief to move to something small and more manageable. I'm leaning toward a condo or townhouse. I'm still working out the financial piece to pay for Jim's care at the nursing home. It's complicated and expensive, but I've got some very smart and caring people to help me with this process.

I am seeing a psychologist (Dr. M) once a week. I'm so glad that I decided to do this. It gives me the freedom to say what ever is on my mind in a warm, caring and supportive environment. I talk, and talk, and talk some more! This therapy allows me to say freely what I am thinking without worrying about judgement or acceptance. While the stress of being the frontline caregiver is gone, I know that the inevitable loss of Jim is going to be very hard on me. I'm grateful for the support from Dr. M to see me through this difficult time in my life.

It's funny the things that will cause me to become overwhelmed with emotion. Last night I was talking on the phone with my friend Julie. We started to talk about Thanksgiving, and suddenly the tears just started falling. I'm working through an internal conflict about what I will do for the holidays. My heart is saying that I can't imagine the holidays without  Jim. But then I need to work through the obligation of what someone else thinks I should do. My heart will win, thankfully, but hopefully without too much angst over others' expectations.

I'm not sure about the direction of my blog, or even if I should continue to post. I'm so grateful for the opportunity to write and have this wonderful group of friends visit me and respond with warmth and kindness. All of you helped me through the most difficult time in my life. For that I will always be grateful.




Sunday, October 22, 2017

The Essence of Jim Still Manages to Shine Through the Cloud of Dementia



When I look back a year ago, it is shocking to me how much Jim has declined over this relatively short period of time. A year ago Jim was still driving. We were in a transition period where I knew that before too long, he would no longer be safe to drive.  A year ago I was able to leave the house for a period of time leaving Jim alone. Mechanical tools and equipment were becoming difficult for him to use. 

He had some problems with word finding, but was able to communicate fairly clearly, for the most part. I was just starting to feel the frustration and worry about being caregiver to my elderly mom and still be available for Jim. My brother and his wife have taken over the caregiving responsibilities for my mom, and for that I am forever grateful. She is in good hands. Unfortunately her cancer has returned. At 88 it is not clear what options there are for her. She has an upcoming appointment where she will learn more about the latest diagnostic testing results and recommendations. 

Since my last post I found and attended a support group for caregivers of folks with dementia. It was a little disappointing. There were only 3 in attendance (including the facilitator) and quite a bit of the conversation was off topic between the facilitator and the other person present. At one point the facilitator asked me what I considered my biggest challenge. My practical mind immediately thought of finances, but as I sat there I became overwhelmed with emotion as I said "I miss my husband. I feel like I am losing a bit more of him with every passing day." 

I don't allow myself to dwell too much on the heartbreaking reality of our situation. If I did, I'd be a basket case. But every once in a while, it hits me hard. As far as the support group goes, I'll keep looking. Most groups meet just monthly. The one I attended is every other Thursday, which I feel is just what I need right now. So I'll keep going to this one until I find one that is a better fit for me. 

Dr. S. referred me to a psychologist to help me through this difficult period in my life. At first I wasn't certain I needed this level of support, but now I know that I do. 

Jim is receiving wonderful care at the NH. I couldn't have hand-picked better staff myself. Just as an example, Jim and I were walking down one of the long hallways. Off in the distance I could hear Tiffany's soothing voice, saying such sweet things and obviously giving a lot of TLC to one of the residents. As I walked by the room, it occurred to me that how you behave when no one is looking is really the measure of character. Tiffany was giving her love and her time to this frail, bedridden elderly woman. It was a real "feel good" moment. 

I go every day, sometimes for the morning and sometimes for the afternoon. I look forward to it every day, as I get to see my sweetheart and be reassured that he is safe. I help him shave, brush his teeth and make any clothing changes that are needed. It gives me joy to be able to help him with these things. Staff are grateful as it frees them up to help those with greater physical needs. 

He's always happy to see me; we hug each other tight, kiss, and hold hands just like we always have. We've always been very affectionate with each other, and none of that has changed! I am so grateful for that. He has no sense of where he is; he doesn't ask me where I've been. He may think he is at home; one day he asked me if I just got home from work. I went with it and said yes. 

The food is delicious! They have round dining tables that seat 6 (there's always room for me to squeeze in too). Over lunch the other day one of Jim's table mates, Don, said something to Jim that was totally unintelligible. Jim smiled and chuckled and said something back to Don that also was unintelligible. Then both of them were laughing! They were having a grand old time! 

What I have found fascinating is Jim's response to others who seem confused or in distress. The essence of who Jim is responds in ways that can only be described as therapeutic. I've seen him try to help someone find their room, he consoles those who are distressed by patting their shoulder and telling them that "it will be OK". The recreation therapist told me she saw him counsel someone who was worried that her daughter hadn't been in to see her. That's my sweetheart! 

There have been some challenges, but I knew there would be. He is not always taking his medications. I remember at home the stunts I would have to pull to make sure he was taking his pills. Lots of sweet talk, ice cream, re-approaching, joking around...I had a lot of tricks up my sleeve. Staff are in a learning curve for how best to approach Jim. They have been very receptive to my suggestions. 

The last four nights he has not slept well, getting anywhere from 2 - 4 hours of sleep. Some of this is likely from the missed medications. So hopefully this will correct itself soon, as staff fine tune there approach with Jim.

He's had episodes of agitation, actually hitting staff. Fortunately it was not hard, and no one was hurt. I'm certain that this too is related to the missed medications. 

Physical therapy ended two days ago. This means that Medicare is no longer picking up the bill. So now private pay begins. I've had two productive meetings with Susan, my attorney and her two medicaid expert associates. I now am in a position where I understand legally what my options are and ways to preserve some of our assets. None of it is easy, or without some significant consequences. Tomorrow I meet with Geoff, the best financial advisor ever, who will help me to sort out the options and figure out what makes the most sense "financially and emotionally" (Geoff's words). 

Another wonderful opportunity for me to share what is on my mind and in my heart. Thank you to each one of you for stopping by. The kindness and support I receive from all my kind readers means the world to me, and I am forever grateful.


Saturday, October 14, 2017

It's Been a While and a Lot Has Happened...

The day following my last post, Jim had an episode where he was severely agitated. Fortunately I had my phone and key fob in my pocket. He didn't know who I was, but was very angry at me, ordering me out of the house. So that is just what I did. I drove around for about 5 minutes, hoping that by leaving and then returning it would break the cycle. As I came driving down our driveway he opened the front door and shook his fist at me, yelling for me to "Get out of here!"

Heeding the advice of Jim's gerontologist, Dr. S., I  pulled out of the driveway and parked down the street where he could not see me and called 911. Obviously it was not safe for Jim to be home alone, and it was not safe for me to try to enter our home.

I was very careful to convey to the dispatcher that Jim had advanced dementia. He assured me he would pass this along to the responding officer. I was advised to wait in my car with the doors locked, out of sight, until the police arrived. And that is exactly what I did.

The police officer that arrived was wonderful. He spoke with me first to get a little background information. I made certain he was aware of the recommendation of Dr. S. that he be taken to the ER and then admitted for stabilization and medication adjustment. We then both walked down the driveway; Jim met us at the door. It was interesting to see the officer's reaction. I could tell he was shocked by how relatively young Jim looked, given his very advanced dementia.

Jim was still agitated towards me, but respectful of the police officer. At one point the officer indicated to me to back away; so I did. Somehow he managed to get Jim to agree to go to the hospital. I remained in the background, not wanting to interfere with how well the officer was managing the situation.

Fortunately I had my packet of emergency medical information ready to go. I was able to give a copy to the ambulance crew and then the ER doctor and nurse. Everyone that evaluated Jim in the ER was very curious about "our story". I"m certain it is because Jim looks so normal and looks too young to have such advanced dementia.

Jim was admitted and was in the hospital for about a week. While there he was more confused than ever. The doctor asked him his name and he said he couldn't remember 😢 That hit me really hard. I know that hospitalizations and illnesses will increase confusion when someone is vulnerable like Jim. But it still just broke my heart. I cannot imagine how he must have felt. He had no idea where he was, or even who he was.

He was very glad to see me and seemed to know who I was when I would visit him in the hospital. He had  an aide in the room at all times. At one point he went for about 48 hours with NO sleep. Finally they added a sleep aid and he started to sleep at least a few hours every night.

While he was in the hospital I would visit 3 times a day, staying about a couple of hours each time. It was a difficult week as I struggled to figure out what I was going to do. I was exhausted and worried sick about Jim. What was I going to do?

The doctor at the hospital (who also happens to be a gerontologist) told me that there really were no further adjustments that they could make for Jim's medications. There might be a little tweaking, but nothing that would address the severe agitation that Jim was experiencing.

In a very kind way, he told me he was concerned about my well-being and that it was not safe for Jim to be at home. He shared with me a few stories of caregivers who had been hurt by a spouse with dementia. I listened carefully to what he had to say.

Dr. S. called me after she had spoken to the doctor at the hospital and essentially told me the same thing. She agreed that maybe there might be some little changes that could be made in his medications, but that his case was so challenging, she did not believe it was safe for him to live at home with me.

Toward the end of the week the hospital social worker told me that he met the criteria for needing some physical therapy, given his increased weakness and his problems with balance. She suggested nursing home rehabilitation and pointed out that this would buy me some time while I figured out what I was going to do.

Medicare picks up 100% of the bill for nursing home placement for up to 21 days. But only if there is a skilled nursing need (such as PT) and only for as long as the person shows progress. Once the person plateaus, the funding ends. At that point it becomes private pay for $144,000/year.

It's a long story, but I almost got tricked into accepting placement at one of the worst nursing homes in the area. Thanks to knowing someone with the right connections, Jim was accepted at a nursing home for short term rehabilitation. This particular nursing home is considered one of the very best in the area.

So, that is where he is, at a nursing home for rehab. He is getting PT. Once he plateaus and medicare payment stops, I'll need to have a plan B. I'm working on that....

Now for the part that is almost unbelievable. Jim is happy and content. He has no idea where he is. He is always happy to see me when I come to see him. He never asks "where were you?". He never asks to go home. He loves it.

The unit is locked, and everyone on the unit has dementia. The shape is rectangular, so that people who like to walk can just keep walking and remain safe. There is a very large courtyard in the center that folks can enjoy when the weather is good.

They have activities available from 9:00 AM to 9:00 PM, for those who are interested. Everything from ice cream social, movies, sing-a-longs, basketball (modified/from a chair), current events (only happy ones!), coffee hour, and of course don't forget happy hour with non-alcoholic beer and wine, cheese and crackers.

The staff love Jim. He is without a doubt the youngest person there and one of the more mobile ones. The staff are amazingly good with folks. Kindness and gentleness prevail. As I look at how active Jim is and how much he loves it, I realize that I could never provide for him like that at home.

So, what do I do.......I'm in the process of figuring that out. What's best for Jim is top priority, but the financial piece has to work too. I've met with our attorney (the one who did our power-of-attorney, health care proxy and wills), and I have another appointment with her later this coming week to talk more about what options I might be able to pursue legally, taking into account the financial implications.

I thought I would share with you something personal. A few weeks ago I realized that I was feeling very overwhelmed and very, very sad. I found that I was crying a lot. Usually first thing in the morning and late in the evening. Somehow I would manage to pull myself together for the day to make sure I was there for Jim.

I was smart enough to realize that things were going to get worse, not better, and that I should get some help for myself. Every time I have seen Dr. S. (she is my doctor too), she always asks me if I am doing OK, and she reminds me that depression is very common among caregivers. I always reassured her that I was fine, but that I would let her know if I needed some help. Well, the time had come.

So, I made an appointment for myself. Dr. S. was wonderful! She told me that she could tell I was under a tremendous amount of stress. My blood pressure has always run very low my whole life. The top number usually is barely 100, and the bottom number in the 70's. At this office visit my BP was 130/88 and heart rate was 98! I guess my body was trying to tell me something.

She started me on an SSRI. It usually takes a little time before you notice an improvement. I am very pleased to tell you that I feel so much better! I know that Jim and I are in a difficult situation with no easy answers, but somehow I now feel much better equipped psychologically to handle what ever comes our way.

I remember telling Dr. S. that I wasn't anxious, just sad. Boy, was I fooling myself! The difference is just incredible. I saw a very good friend of mine yesterday. Amy and I have been friends for many years. Her life is incredibly busy for a lot of reasons, including that she is younger than me and still works full time. So we have not seen each other in a long time. But we email, text and talk on the phone to keep in touch. It became especially hard to see each other when Jim's condition worsened and I needed to be here to provide around the clock care.

When I saw Amy yesterday she couldn't believe that I didn't look more stressed! And she is right. I really do have a sense of calm, knowing that I can control only so much; I have to let the rest go knowing that I will deal with it the very best I can.

So dear readers, thanks for reading this very long post. There is a part 2, which I will post later in the week. I include all of you when I think about all the wonderful support I have on this journey with dementia. And for that I am so very grateful.

Saturday, September 30, 2017

Dementia Decides to Take a Long Walk

It's hard to know where to begin. It's been an incredibly intense couple of weeks. Dementia intensity; it sometimes takes my breath away. It can be heartbreaking, frightening, and incredibly sad all at the same time.

Jim has had a few medication changes over the last couple of weeks, trying to get the right combination/dose to help Jim through this next stage of his life. Things became so difficult, that at one point Dr. S. suggested an admission to stabilize his behaviors and fine tune the medication. The only problem with this is that it cannot be done as a direct admission, it must be done through a visit to the emergency room under a crisis situation. (Dr. S. does not work out of the hospital and therefore not able to arrange for a direct admission.)

I dread the thought of this. It would be terribly traumatic for Jim, and for me too.

Jim started a new medication 12 days ago. On the pill bottle, there was a small sticker that said "Take with Food". Seeing this, I assumed that food was needed to prevent an upset stomach. The medication is a twice daily pill, once in the morning and once at dinner.

Jim has never been a breakfast person, but I offered (and he took) a banana with his morning pill. I was dismayed to see a worsening of Jim's behavior with the new medication. He was highly agitated. Once I had to call for some help from the safety of a locked bathroom.

What I eventually discovered through the help of an internet search was that this particular medication requires eating a minimum of 500 calories when taking the pill. Otherwise the pill is not absorbed; it would be as if it were not taken at all! The label on the bottle should have said "Take with a Meal". I also take responsibility however, that I did not research this well enough myself. It's totally unlike me to not be thoroughly educated on new medications. Lesson learned.

So for the morning pill, I've set out a banana, two yogurt, ice cream and a couple of cookies for good measure. He eats it! He loves all of these foods, and I was hopeful that he would eat enough for the pill to be absorbed. He might be gaining some weight, but that's OK.

Since my discovery, he seems to be calmer. However the delusions and hallucinations are so very present most of the time. He sees a lot of people and many times during the day does not know who I am. But then he'll unexpectedly break back into reality and know that I am Carole.

The other day he was convinced that he needed to"go home". I was not Carole, and he needed to leave immediately. My usual tactics of sweet talk, "let's have some ice cream before you go" etc did not work. It happened to be one of those rare very hot days for September, 88 degrees Fahrenheit.

Out the door he goes. At first I wasn't worried, as whenever he has done this in the past he tires quickly, and by the end of the driveway turns around and comes back home. But not this time! I quickly took off on foot, trying to get him to come back home with me. He became pretty angry at me and more determined then ever to keep going. At this point I turned around to go back and get my car.

I turned out of our development, onto a road that is not terribly busy, but intersected with a major road with a busy intersection. I called 911, explained the situation, and they were ready to send someone to respond. While I was still on the phone with 911, my friend Julie just happened to be driving down the road, towards Jim. At this point I notified 911 that I thought the situation was under control, but would call back if help was needed. I really wanted to avoid a confrontation with police. Julie pulled her car over, and in her very kind, helpful way, was able to convince Jim to get in her car so that he could "go see Carole". I approached the car, and he became quite upset, obviously not recognizing me as Carole.

Too many details to go into here, but by the end of the day, Jim was safe, back at home with me, and relatively calm.

I learned something here. If Jim ever does this again, I will make one attempt to gently encourage him to not leave. If it doesn't work, then I will call 911. It likely will result in a visit to the ER, but this might bring a hospital admission to help stabilize Jim and make adjustments to his medications.  My futile attempts to follow him did nothing more that aggravate him. He had no idea who I was. Lesson learned.

What is amazing, is that he walked about 3/4 of a mile! It shows you what adrenalin can do.

I've ordered some alarms for the doors to be used at night. As I have mentioned, I'm a pretty sound sleeper. This alarm will sound in our bedroom only, and will be activated when an exterior door is opened. I then would follow through with one friendly attempt to ask him to stay, and then if that fails call 911.

I've had some suggestions from well-meaning friends about an extra lock that keeps someone in and can only be opened by a special key (to be held by me). But this would only accelerate the situation if Jim thought he was trapped inside our home and would worsen his agitation. The other suggestion I have had is to be ready to use some physical self-defense moves. Again, I see this as aggravating the situation. Plus, I just don't have that kind of response in me. Not enough testosterone in me! I'm all about escaping from the situation should it become dangerous.

Other precautions I have taken: cell phone and car key are in my pockets at all time, ready for a quick escape or making an emergency phone call.

Lately there have been no daytime naps, so it has been impossible to make private phone calls. My dear friend Jabberwalky made some phone calls on my behalf. I've got a good lead on a local agency that provides home care with no minimum hours required. I have a friend coming over next week to stay with Jim while I go off for a bit to make a few phone calls.

Jim's brother has been willing to come in every other weekend. This will give me a little bit of time to myself on Friday afternoon, and again on Saturday. Jim does not seem to notice or miss me when I am gone, so that is good. Jim's brother still not totally comfortable being left alone with Jim for too long, so I limit my time away to a couple of hours. He also is not quite as attentive as I am, but I think he is starting to understand how important it is to not let him out of sight.

I want to mention to my fellow bloggers that I'm sorry I haven't been able to read/comment as much as I usually do. It has been pretty intense, but I think things are starting to settle down so that I can resume my usual blogging and visiting my friends in the blogosphere world.

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

Tuesday, September 12, 2017

Dementia is Keeping Me On My Toes!

Jim enjoys a glass of wine with dinner each evening. This is relatively new. Prior to dementia, we would enjoy a drink or two on the weekend, but almost never during the week.  I no longer drink alcohol at all. I never was a big drinker and have always had a low tolerance for alcohol. Lately I've been thinking about how I need to be 100%, even during the night given the advancing decline and unpredictable behavior. So no more alcohol for me.

Tonight, for some unknown reason, Jim took his partially filled glass of wine and calmly poured some of it on the kitchen counter. I handled it well, even though it was so unexpected. I quietly cleaned it up and asked if he was done with his wine. He told me no, and then continued to drink his wine. I can't imagine what was going through his brain. He was not upset, we were enjoying a nice dinner, and he was actually in a good mood.

We bought bananas yesterday and at the end of the day I noticed that all five were gone! We bought more today; I put two out and hid the rest. He really is not able to partake of food or drink unless it is right in front of it. Maybe that is why he eats so many bananas; it's what he sees sitting on our counter. He has no idea how to get a glass of water, for example. I've been leaving bottled water out to encourage him to drink more.

Sometimes he'll try to drink the yogurt I put out for him if I'm not fast enough to put a spoon in it. The other day I handed him his evening pills and he promptly put them in his glass of wine! This morning his toothbrush with toothpaste on it went into his cup of coffee on the bathroom counter. And then he brushed his teeth! I didn't say anything; if he didn't mind, then I didn't mind either. Crushed red pepper for pizza was shaken into his glass of wine. These are just some of the reasons why I need to be on my toes all the time.

I have a bum knee. Long story short, I have arthritis secondary to a very old fracture. Eventually I'll need a knee replacement, but in the meantime I'm focusing on non-surgical options. When I told Jim about my ortho appointment he said "who will take care of me?" It was heartbreaking, and he sounded so sad. A rare moment of insight and vulnerability.  I quickly reassured him and told him we will always take care of each other.

I had a cortisone injection this morning and I'm hoping it will work; I should know within a week or so. Jim did great at the appointment. I was ready with my companion card and the office staff were wonderful. So grateful for those cards!

Jim is having increasing problems when we go to our  grocery store, Wegmans. When checking out, he now has a hard time understanding where our order ends (even though I use one of those dividers to separate orders). More than once he has tried to take groceries from the order behind us. And once he kept putting items back into our cart, not letting the woman scan the items! Again, thank goodness for those companion cards!

Wegmans has a delivery service, and it turns out we are indeed within their delivery range. There is a nominal fee for delivery and the price of items is a bit higher, but a small price to pay for convenience and peace of mind. Thinking ahead to this winter, we may need this wonderful service.

Had a wonderful meeting with our financial advisor last week. Geoff has been helping us for several years and has given us great advice and guidance along the way. His company is a fee-based company, which means you are paying for his expertise. There are no commissions to be paid from your investments. This totally eliminates the conflict of interest from commission based firms.

Geoff was so reassuring and encouraged me to use the money we have saved to provide support at this time of great need. He has some fancy software that will predict how long your money will last, given bear/bull markets, how your money is invested etc. He gave me some good advice for budgeting for routine needs and for caregiving support. After meeting with Geoff I have renewed confidence that we can do this, and that all will be OK.  And on top of being a really smart finance guy, he is just the sweetest guy, really caring, and listens very carefully to all concerns.

Given my renewed financial confidence, I contacted a woman who cleaned our house for us prior to retirement. Between my bum knee and Jim's need for my attention and near constant monitoring, I've had a hard time keeping up with cleaning our house. I wish I wasn't this way, but it drives me crazy if my house is not clean. If you were to walk into our house, everything looks neat and tidy as it is easy to keep things picked up. But don't check for dust, cobwebs, floors etc.

I'm hoping Jim remembers Halina. He was always fond of her. I can see some caregiving being woven into this arrangement as well. I expect to meet with her later this week to discuss details further.

So I am feeling hopeful! Kathy will be available mid-October, and Halina will be starting soon. Jim's brother plans on every other weekend. And Mike is always there if I need him. Things are looking up 😊

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

Saturday, September 2, 2017

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.








Monday, August 21, 2017

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.



Tuesday, August 15, 2017

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.

******************************************************************************

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.


 

Friday, August 4, 2017

Alzheimer's Disease with Psychosis

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

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

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

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

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

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

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

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

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

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

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

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






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!