Tuesday, March 21, 2017

In the Time it Takes to Shower...

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

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

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

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

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

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

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

"It's almost like ..."

"I need to ...."

"Once it will be...."

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

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

"Maybe..."

"I think so..."

"I'm not sure..."

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

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

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

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


Tuesday, March 7, 2017

"Is My Mother Still Alive?"

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

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

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

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

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

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

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

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

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

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

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

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

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

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



Tuesday, February 28, 2017

The Unexpected Phone Call


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, February 24, 2017

Side By Side With Dementia

My learning curve experienced a few bumps this past week. I've written before about Jim's difficulty when going out to eat at a restaurant. After last week's stressful dinner and evening with friends, I vowed to keep dining out low key, quiet, and very casual. A couple days ago I suggested a local Mexican restaurant for an early lunch (beat the crowd). It was off the beaten path and seemed like it would do the trick. We arrived and discovered the menu was on a menu board, hanging high on the wall.

Jim: "You don't expect me to be able to read that, do you???!!!"

Me: "No, that does seem hard to read. Let's just leave and find somewhere else to eat."

While Jim can still read, the ability to process what he is reading is pretty impaired. I have noticed that when looking at menus he is very overwhelmed. My strategy has been to look at the menu online prior to going to the restaurant, and then "helping" him find something that he would enjoy. The hanging menu at the Mexican restaurant was just too much for him.

Fortunately I quickly came up with a Plan B.

"Let's stop and get a pepperoni pizza." He loved the idea. We didn't even have to look at a menu. While in the restaurant we asked to be moved 3 times, due to Jim not being able to tolerate where we were seated. (People too loud, light is too bright.)

Pizza was delicious!

Jim became obsessed with what he perceived to be a mechanical problem in the condo. It is way too complicated and convoluted for me to explain, and actually the details are not important at this point. But his obsession and insistence in me calling the owner of the condo resulted in a lot of stress for both of us. The end result, after 3 days of turmoil, resulted in a very angry condo owner, and a bill for an unnecessary visit by a repair person. Of course I picked up the cost for this, but nevertheless the condo owner was angry at being bothered by this mess.

The condo owner is not aware of Jim's dementia. With Jim hovering, there has not been an opportunity to convey this information. I took some pretty serious heat from the owner about this whole fiasco. I don't know why I let stuff like this bother me so much. In the end, it doesn't really matter. But I managed to become quite stressed over this whole issue.

My dreams at night are often a source of peace for me. Lately, I am alone in my dream. Things are quiet and peaceful, I am outside walking, running, enjoying nature. I'm grateful for this escape.

Just prior to leaving for FL, I had a cortisone injection in my knee. I have some significant arthritis in the one knee, secondary to an old injury 25 years ago when I broke my leg. The cortisone was like magic! I could walk, go up and down stairs with no pain. It is starting to wear off, so when we get back home I'll schedule another one. I've been told that eventually I will need a knee replacement. I'm hoping to put this off as long as possible. I've read that caregivers often have their own health issues that worsen, or get pushed to the side. I can see how this could happen.

A couple days ago, Mr. Dementia had a bad reaction to a perceived hand movement by me. I was walking into the kitchen; I had a glass in one hand and my phone in the other hand. He reached for my glass, and I pulled my hand back saying "thanks, but it's ok, I've got it". His response: "Why do talk to me that way? You're treating me like I am 12 years old!" He was pretty angry, and it was hard to get him distracted in a different direction. Of course I apologized, hoping it would calm him down. I always tell him that I would never intentionally hurt him or treat him in any way other than respectful. Didn't work.

So, when all else fails, turn on the comedy channel! I've written about "The Carbonaro Effect". There are other shows too that Jim really likes on this channel. He likes one called "Impractical Jokers" (not my cup of tea). It worked! He got caught up in the show, it changed his mood, and his angry feelings toward me were soon forgotten.

His ability to operate the TV and his computer are intermittent. I often see him clicking on his mouse, trying to change the channel on the TV. He would not use his computer if I didn't encourage and help him. Email is something he no longer understands. When I look at his email account, I can see where his sending of emails dropped off significantly in early 2016, with the last one being sometime last summer. He and his friends loved sending jokes back and forth. He really exhibits almost no interest when I show him his emails from friends.

Dementia is tough, not just on the person and the caregiver, but tough on friends and families too. I try to be sensitive to this, although I'm not sure I always succeed.  I'm certain that friends and family are very sad about the situation, but they must feel even more powerless than I do! There is a balance between sharing versus overwhelming friends and family with what is going on; I'm working on that balance.

Fortunately there are support groups for families effected by dementia. I'm looking forward to connecting as soon as we get back home. Support groups are in a better position to help process and handle the multitude of emotions caregivers experience.

Fatigue is ever present. A walk around the grocery store is so tiring for him. Jim used to sleep an average of 6 1/2 hours at night. I never understood how he could get by on such little sleep. These days, he is ready for bed by 9:00! Over the last year his need for sleep has been increasing steadily. He is always tired. Other than the dementia, there is no clinical explanation (thyroid levels normal etc). I've read that it is common for those with dementia to be more fatigued.

I looked at an old post where I was bemoaning the fact that an easy 2 mile walk around a local lake turned into a slow shuffle, with Jim exhausted at the end. I wouldn't dream of attempting anything like that today. Mr. Dementia leads a very sedentary life.

Jim is needing some help these days with personal care. Nothing dramatic, but it is a change for him. The other day he forgot to shave. Yesterday he forgot to shower. I casually asked him if he had showered yet (I knew he hadn't). He assured me he had. He would be mortified to think that he did not shower. His attention to detail in his personal care has always been so precise. My strategy is to put out a shower towel for him, as a reminder, and try to pay more attention as he is getting ready in the morning.

I'm looking forward to going home. It's been wonderful to escape the bitter cold and snow, but being so far away, side by side with Mr. Dementia has been more difficult than I imagined.

Thanks for stopping by, and thanks for listening. As always, it helps me tremendously to be able to put into words what is in my heart and what is on my mind.



Saturday, February 18, 2017

Dementia Had a Late Night Last Night

Things always look better in the morning, and this morning I feel especially grateful for this truth. I feel so bad for Jim. This character called dementia really had a grip on him last night.

The evening started out so pleasant. We made plans with our friends to go out to dinner. They stopped over for an appetizer and drinks prior to dinner. As we enjoyed our incredible view of the ocean, we enjoyed each others' company and appreciated our good fortune to spend the winter together in such a lovely, warm, friendly community.

At dinner, the restaurant was busy and noisy. Our plans to have an early dinner did not work out as planned. The meal was delicious, our waiter was attentive and funny, but the noise, confusion and busyness took its toll on Jim. No disasters during the meal, but I could see the signs of Jim's discomfort.

By the time we got home and said good night to our friends, Jim was in overdrive. I'll spare you the details, but Mr. Dementia reared his ugly head, inconsolable, angry and upset. The focus was on the temperature in the condo. I've mentioned before the struggles Jim has with temperature regulation. On a good day, he'll put on a hoodie, or take it off, or mention to me that the thermostat needs adjusting. On a day when dementia has taken over his brain, the conversation becomes a confusing entangled mess with no resolution in sight.

Yes means no, hot means cold, nothing I do is right, on and on.

Dementia finally gave it all a rest around 2:00 AM.

I am getting better at mentally separating what Jim says and does, as opposed to what dementia says and does. It is an important distinction for the caregiver. It certainly helped me last night, as Mr. Dementia was storming around.

I read somewhere that you should "never argue with dementia, because you will lose". (I can't remember where I read it, so unable to give credit. I think it was an Alzheimers newsletter.) Notice that it doesn't say that you won't win, instead it says you will lose. Important distinction. It is normal in all relationships to have disagreements, arguments. In a healthy relationship the focus is on working out disagreements in a fair way, without attacking each other on a personal level.

Dementia does not know these rules.

When we woke up early this morning, Jim snuggled in close to me, telling me how much he loved me. There was no mention of last night. I'm not sure how much of what happened he remembers, but I am certain he remembers how upset he was last night. And I'm guessing he remembers that I was the object of his upset.

This post by Dr. Elaine Eshbaugh is great. It says (much better than I can) how emotion lasts longer than cognition. This is true for everyone, but especially for those with dementia.

Jim has fallen back to sleep this morning, exhausted I am sure by all that happened. It's comforting to me that his body is now in restore mode, trying to make up for his sleep loss from last night.

Dementia: we have our good days, and our not so good days. It is always present. But I am getting so much better at emotionally separating myself from what the dementia is doing, as opposed to what Jim is doing.

Another post is written, and once again it feels good to share what is on my mind and in my heart. Thanks for stopping by.

Wednesday, February 8, 2017

Dementia: Some Things Change, Some Stay the Same

I had an unexpected health problem over the weekend. I ended up going to an urgent care and ended up on antibiotics and an anti-inflammatory for a swollen, red, painful ankle. I'm on the mend, but it remind me that I am not invincible. Actually, I am very healthy. But no one is exempt from an unexpected health problem. What would I have done if it was something more serious? Of course I am talking about Jim; I don't know the answer, but this has given me a lot to think about.

Jim has become very attentive to me, expressing concern for my health. This is the old Jim that I remember so well. Two weeks ago when I had a cold, his reaction was quite different, almost angry at me.  Dementia has so many ups, downs, twists and turns, many times I just don't know what to expect.

Jim's understanding of money has changed on many levels. He is no longer able to count money, make change, and his perspective on the relative cost of things is way off. The other day we drove by a gorgeous house. I'm sure it was well over a million dollars (beach front!). Jim's comment was that it was very expensive, "probably close to $50,000".

When buying something, I now go out of my way to avoid talking about the price. What ever the price, he will comment that it is too expensive. He was never like this before. Eating out happens rarely for a lot of reasons. We seldom make it past looking at the menu. Reasons for not staying include "it's taking too long", "it's too cold", "crappy menu", "it costs too much". I never try to change his mind once he decides to leave (it would only make him angry). But I have developed some work arounds that occasionally work. If he mentions the price, I immediately tell him I have a coupon for 50% off. By the time the meal is over, he has forgotten about the coupon, his reading glasses are safely tucked away, and I grab the bill.

It's almost like his brain is in an economy from 20 - 30 years ago. So, to keep the peace, I use alternative facts (of course I did not invent that term :-)) Ha Ha.

One thing that has not changed is Jim's sense of humor. It was always a huge part of our relationship. We had one of those easy going, light-hearted loving relationships. Laughter and humor was always a big part of it. Since dementia invaded his brain, anxiety many times gets in the way of being able to appreciate the humor in life, but it still happens at times and boy does that make me happy!

I'm not a big TV watcher. But there is one very funny show that I recently discovered. I smile and laugh my way through each episode! And Jim finds it equally funny! That is huge for me. The show is called The Carbonaro Effect. It is hilarious. It's on Tru TV. So here is something very funny that we can still share, joke about and spend time together enjoying each other's company. Stress free!

I am so thankful that his wonderful sense of humor is still there inside of him. He may not remember what we laughed about 5 minutes ago, but I see it as enjoying the moment as it is happening. I also know that when you are happy and laughing some very good things are happening in your brain that make you feel good. And even if his memory fails him on what he was just laughing about, the feel good happiness remains with him for a while.

I continue to practice distancing to help me deal with the emotional upsets. I found another resource  on emotional distance that I find helpful. The more upsetting the moment, the harder it is for me to remember to use distancing. But I'm working at it, and hopefully it will get easier.

Dementia: some things change, and some stay the same. As our journey continues I know that more changes are headed our way. I hope to continue to look for the positive and appreciate the joyful moments we can still enjoy together.


Friday, February 3, 2017

I Have a Plan



I'm usually pretty good at figuring out what Jim is trying to say. But once in a while I can't. Usually it doesn't bother him, but lately he expresses anger. Today he said a vague, partial sentence: "what about ....(very long pause)". I suggested several things I thought he might be trying to say. None were right. Jim became quite upset, saying "How am I supposed to do this! You're no help!"

I know that he is frustrated that he can't express what is on his mind. How discouraging this must be for him! And yet it still hurts, because I know I am trying so hard to help him, even though I am not successful. I'm practicing some of the tips I've learned about resilient thinking, mental distancing and trading pain for self-compassion. These situations are still hard, but these activities help me to move out of the dumps that I usually find myself in after an upset. 

He is starting to have difficulty with time. He was looking at an analog clock and said to me "It's five six. I don't know what that means." (It was 6:25) Today he was telling me how cold he was (it was 76 degrees in our condo!). He looked at the digital display on the stove clock and said "It's too cold! It's five point four five!" It was 5:45. He somehow thought he was looking at the thermostat readout.

This afternoon he was certain that his glasses were lost, and he could not find them. He has a pair of glasses for reading, and one pair of sunglasses. I showed him the shelf where both pairs of glasses were. He was not convinced. And I could tell that if I pressed the issue, it would just anger him. I'll spare you the sad details, but I joined him for over an hour looking in every nook and cranny for a nonexistent pair of missing glasses. He finally came to the conclusion himself that the two pairs of glasses were the only ones he brought with him. Whew!

So, I have a plan: 

1) The transition is being made for his health care to be managed by a gerontologist. I'm looking forward to working with her to provide a better quality of life for Jim. I know that the medications for dementia do not halt the progression of the disease, but at this point I would welcome a steadiness and hope for some improvement in his day to day functioning. Something for the anxiety is desperately needed as well.

2) Plane tickets have been purchased for the flight home in March. Jim's friend Mike has graciously offered to drive our car home for us. There will likely be confusion, but one day of confusion is way more manageable than three.

3) Blocks of time for me: Once we are home, I plan to hire help (under the guise of housekeeper, handyman, friend time) for 3 blocks of time each week. This will allow me to keep my own appointments, go to a support group, lunch with a friend, go to my favorite YMCA class, see my mom. 

Thanks for stopping by, and as always, thanks for listening!