End Stage Diabetes

I know I mentioned a while back that I would post a link to an article on late stage diabetes and blood sugar. It took a while for the nurse and I to get our email addresses straight, but here is that link.

http://www.eperc.mcw.edu/ff_258.htm

I think, for me, the biggest take away is that, in end stages of life, elevated blood sugar is less significant than in earlier stages of life. The article indicated that there are several schools of thought as to how high is too high, with one going as high as 280. Having read the article, I have to say that the nurse was right, I'm no longer worrying over morning blood sugars running from the 170 range to the 230's range, which is what we have been seeing, for the most part. One less thing to worry about! Mom and I are okay with that!

Changes in Patterns

We had a tough week last week, with our caregiver out for 4 days with the flu in her house. Fortunately I had help on one of those days and kind family and the Hospice team who stopped in to help with the biggest tasks of the day on the other 3.

Mom has been spending a lot of time sleeping… and not eating or drinking much. Her breakfast intake has been pretty consistent, until yesterday, but her dinner intake has dropped off to maybe 6 bites before she pushes her food and drink away and says, “No.” Her fluid intake is down to about 6 to 8 ounces a day. Yesterday and today, she really didn’t eat more than a few bites of breakfast either day.

On Sunday night we had a really rough night. Mom woke up about 4:30 AM and started trying to get out of her bed. That is something she hasn’t voluntarily done in several months. In fact, for the most part, she will fight getting up even to do her bath or toilet routines. Sunday night, however, she was very agitated and every 20 minutes or so would push off her covers and, again, try to get out of bed. She kept trying to tell me that she needed to get up. I thought at first that she needed to go to the potty, then I thought maybe she needed to throw up. The caregiver had been at the house for a couple of days before the doctors figured out that her daughter had the flu, so we were worried that Mom might have been exposed. Mom eventually pushed away the basin I brought her and said, “Not that!” So I stopped worrying about her needing to throw up. I kept reminding her that she could relax; that she was wearing depends so it was okay for her to go without getting out of bed. She would relax a bit then start all over again with her agitated behavior. Her temperature was elevated and, when I asked her if she hurt, where, she would tell me, “I don’t know, I don’t know.”

At 8:00, when I thought that my regular Hospice nurse might be at work, I called her and told her what was going on. I asked her if she thought mom might have the flu or maybe a urinary tract infection. She asked me about mom’s food and drink intake and her sleep cycle of the past few days. When I had given her the information she told me that what she really thought was happening was that mom’s organs are starting to slowly shut down. That creates a pain sensation to which she is not accustomed and, with her language skills further impacted by the Alzheimer’s, she really could explain the pain she was feeling to me. That pain was causing discomfort and anxiety which manifested itself in the behavior of the night before. She had me give her an extra dose of her high powered Tylenol and within about 30 or 40 minutes she was calm and sleeping easily in her bed.  As a result, we are now giving her more frequent doses of her meds and she is much more comfortable and happy.

A dear friend, who was also a caregiver for us for a time, chewed me out for not calling Hospice at 4:30 when things started. She said that they are there 24/7 just for that purpose and they could have given me guidance on what to do much earlier, thus alleviating some of my worries and mom’s discomfort. Lesson learned. She also mentioned that, in her work as a care giver, she has found the Hospice program that we are using to be the best and she has worked with the nurse who is caring for mom and is particularly impressed with her skill. I felt both chastened and comforted when I hung up the phone from talking to her!

Our Hospice Nurse did tell me that the process of organ shut down is not a matter of days or hours, per se. She said it could take a few months or it could move more quickly. Much of the timeline will depend on what other problems arise and Mom’s responses to them. Remember that Mom has diabetes and that renal failure is a side effect of diabetes, one that we have been holding at bay quite successfully to date. A problem like that could certainly change things, but there is no indication, at this time, that we are any further down that road than any other. So I am not going to borrow trouble, but I am going to do as Hospice keeps saying and let Mom’s body and her needs be our guide as we move on down this path.

Sundowner's Syndrome

“Sundowner's Syndrome” is a pattern of behavior that develops in Alzheimer’s patients and it is characterized by them getting their day time and their night time mixed up. When you hear of elderly Alzheimer’s patients who have left the house in the middle of the night and no one knew they were out, it is most likely as a result of sundowner’s syndrome. It can be very dangerous for the Alzheimer’s patient and families often have to take extra precautions when they realize that it is occurring.

I think mom may be developing her own version of Sundowner’s as she has been wanting me to leave the music or the TV on late into the night. Of course she is sleeping for most of that time, but if I turn it off or change the station then she wakes up and questions me about why I just did something that foolish.

She is pretty much bed ridden, at this point, so there is no worry that she might go outside and get lost in the cold spring nights. However, her night owl pattern of behavior is leaving her sleeping much of the day. OR is it the other way around? Is her sleeping all day making her more wakeful at night? It really doesn’t matter which is the chicken and which the egg as it works out to the same thing… Sundowner’s!!

It’s lucky for her that I like to stay up late and work on my blogs. By the time I’m ready to call it a night, she is ready to do so, too! Maybe I am in the early stages of Sundowner’s, too?!!

Rain and Sleep

The rains have returned and so has Mom's sleepy state. I know that this will sound odd, but that gives me hope. It means that she may not be in the sleeping phase, a final stage of Alzheimer's, but is simply responding to climatic influences at this point. And I'm sticking to that premise!

She seems to be eating a good solid breakfast and a small dinner these days. Her blood sugar is starting to slip back down to a more normal level, generally, although we are not really worrying about that too much these days. We made her a batch of good old Gingerbread, which she used to make when I was younger, and she loved it. We've decided that if we give her the sweets with breakfast, then her body can process it out without driving her morning sugar up too high. We'll see if our new theory works!

Last night she was having dinner and had eaten about half of her piece of quiche. She pushed her hand against mine when I started the next bite toward her mouth which is her signal for "No". Then she pointed to the dog who was sitting nearby watching each morsel go into Mom's mouth. I laughed and agreed that the dog was watching her. I then tried to give her the bite again, and, again, she refused it and pointed to the dog. So I asked if she was telling me to give it to the dog. She literally giggled and shook her head yes. So I gave the dog the bite. They proceeded to split the remaining 4 bites on her plate with her smiling and patting the dog each time she sent her a bite. It's no wonder that the dog adores her....

We have been staying with Mom almost 24/7 these days, as she seems so restless and we don't want to risk her falling out of bed as a result. Last night, when I had the tv on low and was finishing up on the computer, around 9:30, Mom, who had been sleeping for several hours by that time, raised her head from her pillow, looked over at me and said, "I think we'll go to bed now!" Then she lay her head back down and I obediently turned off the TV, the computer and my lamp and went to bed. I guess you’re never too old for your mom to send you to bed.

Visitors of a Different Sort

Mom is sleeping much more these days, often as much as 20 or 21 hours out of 24 and seems quite groggy even when awake. Other days she is more alert and, of late, she has even been engaged in TV again. She is still sleeping most of the time, but when awake she is more engaged and attentive. I’m not sure if it’s the sunny weather, the summer effect, if you will, or if it is just a phase through which we are passing. I guess that, when the rain spills back in later this week, we will know better if it is sun and warmth driven or if it is just part of the disease process.

She has been a bit restless in recent days, even when she’s sleeping. Her dreams are more real to her and she often calls me by her sister’s name when she wakes from a dream to see me sitting in her room with her. She is also seeing people in the room with us now and then, mostly family. Tonight she asked me twice if I “can see that” and pointed at the space at the foot of the bed. Following the lead of one of our caregiver’s I asked her what she was seeing and she said “him”. I asked if it was Bill, as she has mentioned seeing him several times, but this time she said no. I asked if it was her father and she said yes, then hesitated and said that she didn’t know.

I told her that I had the house locked up and the alarm turned on, so any men she is seeing in the house now are family and they are welcome to be here. I then asked her to tell them Hi from me and she giggled and said that she will do that. I don’t know if this means we are entering the dementia phase, or if family is checking in on her as we move closer to time for her to go home. I don’t think she is that close to leaving, but the visits are becoming frequent occurrences at night and even happen during the day time now and then.

I am not unnerved by these visits anymore; although the first time she told me there was a man in the house I was a bit distressed. She kept talking about The Man and she finally pointed to the bed where she and dad used to sleep and said, “The Man who was there! He is here.” Well, I had run the dog through the house to be sure we were alone, even though the alarm was already on, and I put the pistol out on the table right beside my bed that night, but I also whispered to my father to stop bugging her that night because it was driving me nuts with worrying about it. After that she seemed to stop seeing him for the night. My Dad is, apparently, still taking care of us and watching over us. I’m good with that!

On a different note, we are keeping fresh flowers in Mom’s room all the time now. We used to keep them in the family room for her, but, since she seems to be more bed bound these days, we are keeping them in her bedroom now. She enjoys them when she looks up and sees them. Even if she doesn’t mention them often, we will keep them in the room for her because she always loved flowers and I know she would want them there. They are a reflection of the joyful beauty that she always saw in the world around her; that she and my dad tried to plant in our world at every duty station to which we moved.  They always had a garden and it was always full of flowers. That’s the world they tried to create for us and that’s the world we will maintain for her.

To The Rescue

I’m often asked if my siblings pitch in on the caretaking process. I usually respond with a laugh, because they don’t pitch in, they are ALL IN all of the time. There is no way that I could do this job alone and last week just brought that point firmly home. My regular caregiver ended up with strep throat running through her house and, following rule number 1, she did not bring the sickness into the house and risk exposing Mom. That proper action, however left me facing days of no help with an increasingly weakened and fragile patient.

Over the hill, I could hear the bugle calling charge!!! My sister and niece, who had planned to visit that week already, were landing at the airport with fortuitous timing! When the Cavalry arrived at the house, they not only pitched in, they took over in many circumstances so that I could supervise and let them care for mom. My sister even stayed with Mom one afternoon and entertained her while my niece took me off to one of my favorite places to walk and take photos. They both walked, or ran, the dog each day that they were here so that she had a lot of great exercise and fun, too. I know that it was by happenstance that they arrived at just the right time, but I have found that happenstance tends to be what you make of it… and they made it wonderful.

My family is nothing but supportive and they are often the driving force in getting things accomplished when I am forgetful or overwhelmed. They are the strength and the love that carry Mom and me through each day. They are the phone calls that cheer, the direction when we feel lost, the get it done when we are spinning in circles. They are critical to everything we do. So I guess the answer to the question is… Yes! We couldn’t do this without each and every one of them and we are blessed to have them at our side through this process.