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.

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.

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.