Holding On and Pushing Through

I'm still alive!! My family and I have been busily engaged in preparing the estate for sales of both personal and real property. I cannot describe to you how devastating it felt to have the whole family descend on the house, within about a week of Mom's burial, and start packing everything into boxes. My heart cried out for them to stop, just wait a little while, please! The reality in these situations is that they aren't simple. My very large family all have lives, scattered around the country, and they dropped everything to come and help get it done. They wanted to help, in some ways it was what they needed to do to start to heal, and it needed to be done, so they came and did it. Did I feel rushed and overwhelmed? Yes. Am I grateful that they all dropped their busy schedules and shifted their lives so that they could help me handle the impossible task of separating my belongings from my parents, sorting the important documents from the outdated and useless ones, and getting everything packed so that it can go where it needs to go with no further impact on my time? Yes! As one of my father's friends put it, "So you need help, but unfortunately you're going to get it... " I laughed when he said it, but he was right. 

We decided to have Mom's memorial in her home state as most of her family is still there. I am here now, in advance of the memorial, catching up with family and friends that I haven't seen in ages. I kept telling myself that if I can just get through the end of October, then I could breathe again. Things never flow smoothly or as planned, however, so now I am holding on until the end of November to start breathing. Except, by then, I need to have found a new job and a new place to live, and gotten both underway. Again, do I feel overwhelmed? Oh yeah. But I know that this feeling will pass and the healing will begin soon. So, please, hold on and hang in there through my distraction and my chaos. I promise that I will get back here and start the background story on Mom's progress through Alzheimer's very soon. I think I'll even share some of what I have learned about grieving with you. For my caregivers who read this, that's a big  part of the story, too. For now just know, I'm hanging on, my family is supporting me and loving me through all the tough times and then they have promised to kick me back out into the world and force me to live among humans again! And you know what? That's the scariest part of all of this!

Holding on! Pushing through! Smiling in the rain!!

I'll See You In Heaven

When my sisters were leaving after their visit they each took a turn patting my mother’s cheeks and kissing her and then they each told her, “I’ll see you in heaven.” It was such an endearing and loving moment. It truly touched my heart, and still does even now.

On Saturday night friends came to visit and to sit and talk with Mom. A previous caregiver and her husband stopped in and, while they were here, a dear friend brought her husband and their guitars and we all sang songs to Mom for two hours. We hit all the old folk songs and country songs and hymns and even some Christmas carols that Mom had loved. I know that she wasn’t wakeful for it, on the outside, but I have no doubt that the part of her mind that was still awake and listening on the inside was smiling and singing along. It was a very great and joyful time indeed.

Through the evening Mom had started to develop a bit of watery breathing, but not so much that it seemed to be a consistent issue requiring medicine. Later in the night, though, around 5:00 in the morning it had become very heavy and we gave her some atropine to help dry her lungs up some. Within 20 minutes Mom’s breathing was already clearing and by 5:45 her lungs were dry enough that she was breathing normally. So we went back to sleep.

I must have been exhausted because I didn’t wake up until 8:00, much later than my usual 7:00ish time frame. When I woke up and realized how late it was, I started out of bed and checked on Mom. She had already taken one last breath on earth and her first breath in heaven just a few moments before. I have pondered why, on that morning, I should have slept longer than normal and all I can figure is that God and Mom had conspired to prevent me from having to experience actually watching her die. Ever the thoughtful woman, she always worked toward what was best for her children, even at the end.

While I feel myself swept by sorrow sometimes, I know that it is a selfish sorrow… and that is okay. At the same time I rejoice that my mother is free of her broken body and rejoined with the love of her life in the warmth of God’s loving embrace. It is actually quite an odd sensation to feel such deep sorrow and such peace and elation at the same time.

I’m attaching this photo of my parents for you because, to me, it seems to encapsulate all that I have been working toward for the last 3 and one half years, the joyful reuniting of two people who loved each other beyond the boundaries of life on earth. I see them, now, as they were then, young, in love and captured in a private moment of joy that will now last through eternity. I bring to mind the last words my sisters spoke to my mother…

Mom and Dad, I’ll see you in heaven. I love you!  

Rough Day

It has been a rough 24 hours for Mom and for my family.

In addition to what Mom has been going through, we heard that a much beloved cousin had died, unexpectedly, from a heart attack. We would like to ask for special prayers and loving thoughts to be lifted for Him and for his suffering family. Thank you.

We are seeing some further symptoms of decline in the last 24 hours, and, at one point we even feared we had lost Mom last night as she didn’t seem to be breathing. When she started up again, my sister and I looked at each other and said the apnea has begun. The Hospice information on the end of life symptoms indicated that apnea would likely start occurring, so we didn’t panic… once she started breathing again.

She is in much more consistent pain now. We have been giving her 0.5ml of morphine for the pain and lorazepam for the anxiety that accompanies the pain. We have now been instructed to increase the morphine to 1ml and to give her 2 Lorazepam tablets for now. One of my aunts asked me what kind of pain she is experiencing and I realized that it might be helpful for others if I clarified that here.

All of her organs are shutting down, slowly, and that causes a generalized pain that, per the nurse, even a person who doesn’t suffer from a brain with a thinking and processing problem can’t quite define. It is a pain that we don’t experience in our lives and so it is unfamiliar to us. You know what a stomach ache or a cut finger feels like because you have had it before. This is a pain that is unfamiliar and seems to be coming from everywhere. Additionally, the remaining muscles that she has are beginning to cramp and jerk. That jerking motion causes stiff, sore joints and limbs to twist and move in ways that are painful, as well. The last pain source that I can think of is the low steady fever that she seems to have. As her body’s ability to regulate its temperature breaks down she sometimes slips into a fever like state. I’m sure that comes with all the aches and discomfort of a normal fever, but she can’t tell me that, so I’m guessing on that one. We do give her a Tylenol suppository for the fever and it usually stays at bay for a while then with a bit of attention to details like covering or uncovering the parts of her body that are getting too hot or too cold.

If you are a caregiver, you will find, as I and my family members who are visiting did, that you struggle with the timing of the pain medication. Do you give her a few more moments of wakefulness and risk the onset of real pain or do you sacrifice a few more moments of loving interface to keep the pain at a tolerable level. It is very hard for anyone who has not seen the full onset of that pain to understand why you will not delay in giving the medicines a bit longer. One of my sisters was spending the night last night to help me and early this morning she got to see the full impact of that delay on my mother. Mom had been sleeping hard all night after a long day of loving good-byes from my other sisters and then her bath. Because she was so deeply asleep she did not show signs of pain coming on. When I covered her with a light blanket because her face was feeling chilly, that small change in weight on her body caused her to begin crying out and twitching or jerking with the pain. We got the medicines into her as quickly as we could, but she continued to cry out and be in pain for 5 or 10 minutes until the medicines really kicked in. That 5 or 10 minutes felt like an eternity to her watching daughters. You don’t see a loved one suffer like that and willingly allow it to happen again, I assure you.

One thing we did notice though, was that once the pain and anxiety medicines took effect, then Mom was able to wake back up and actually interface with us again. Prior to that point she had been glassy-eyed and staring past our faces at nothing. Where I had thought that the morphine made her sleepy and less communicative, I began to realize that it was the pain doing that and I remembered, in the morning good-byes my other sisters had made, she woke up, after first falling asleep, and was able to call them back for one more kiss and an “I Love You”. I guess I still have a lot to learn about this dying thing.

Some of the other symptoms that we are seeing now would include the fact that her head tends to turn to one side and, at this point, it is very painful for her if we try to turn it back in the other direction for her. She can’t do it, as the muscles in her neck must have atrophied enough to prevent it, or the pain of moving that much is overwhelming, because, when she tried it herself one time, she cried out and stopped turning. So we try to sit on that side of her bed if we are talking to her.

She is also continuing to have some pigmentation shifts in her skin. The yellowing is picking up and doesn’t seem to be going away this time. The blue tint that shows up in her hands now and then is not yet staying, though.

Her mouth is so dry that we have to swab it several times during the day because she is not making saliva any more. We keep putting lip balm on her lips to prevent them from cracking and, as often as we can get her to take some, we still give her “sips” of water on a sponge. She is getting to a point where she bites down on the sponge and won’t let us take it out of her mouth. We have to cajole and wheedle and sometimes even pry open her teeth a bit to get the sponge back out.

I will say, though, this morning, when the medicine hit her system, we got the wonderful loving smile that is my mother’s trademark. When I kissed her cheek and told her I loved her, she was able to say, “I love…”. I told her I knew she loved me too and she smiled before going back to sleep.  

New Routines, Lots of Help

We are settling into the new routine, now. With the added blessing of having my sisters and a cousin coming in from California and Louisiana to help out and offer 24 hour support, I finally got a good night’s sleep last night. I have to say that our Hospice Team has been a HUGE blessing through this transition. I cannot praise the Providence Hospice program enough for the smooth, professional and compassionate care that they have offered to my mother and the loving and steady support that they have given me.

Mom is sleeping almost all the time now. She is able to suck a bit of water off of a small sponge in more wakeful moments, but we are avoiding giving her larger amounts of water, even from a syringe (without a needle, obviously), as she cannot swallow consistently now. We are placing her anti-anxiety medicine under her tongue or between her teeth and her lip and letting it dissolve. Every once in a while she is wakeful enough to chew it and once she spit it back out at me; Ever the defiant one!  Her pain medication is given by way of a syringe, without a needle, and is squirted on either side of her mouth between her teeth and lips. This allows the medicines to be absorbed slowly through the mucous membranes of her mouth. It is bitter tasting medicine, so we follow it with several sponges full of water.

She is actually doing quite well, right now, with only limited doses of the pain and anxiety medicines. When she gets restless, we give her a small dose of the anxiety medicine and when she begins to toss and cry out in her dreams, an indicator of oncoming pain, then, and only then, do we give her a dose of the pain medicine. She has not been chatty, but she has been able to acknowledge and, sometimes, converse a bit with her visiting grandson, which brings her great delight.

She has developed some swelling in her ankles and feet, but by keeping them elevated, we have managed to avoid that becoming a problem, so far. Her hands have shown signs of bluing, but then they clear up again, which is an indicator that her circulatory system is starting to slow down. Her body temperature regulating system is wacky now, too. She will begin feeling hot to the touch and we remove her blanket and when she begins to feel chilly to the touch, we cover her back up. When she gets too hot and clammy, then we have to give her a Tylenol suppository to break the “fever”. Most interesting to me this morning was that her core and her feet were cool, but her hands were burning up. Her face was cool, but her chin was on fire. There were some amazing gymnastics being done with blankets and ceiling fans to try and balance her body’s heat, for sure!

All in all, it’s all quiet on the home front now. We are treasuring the last few days that we have with Mom and each of us are taking an extra moment to hold her hand, or pet her cheek. I even sit beside her and sing some of the old songs that she used to love… badly, yes, but none-the-less they are familiar favorites, so I do my best.

One LONG Week

What a difference a week can make! We started off last Monday with Mom slowing down on her food and water intake and we have come around to starting this Monday with the Hospice team suggesting that any family members who want to see her, do so sooner rather than later. In one week’s time, we have gone from status quo to here we go, and I don’t think I’m ready for it.

Mom spent most of the past week sleeping and her food and water intake was very small. Then Sunday she woke up and announced that she was hungry! So she had a “big breakfast” of one scrambled egg and some fruit and a bit of “Ensure”. A few hours later she had vomited it all back up, twice, and was in great distress.

The Hospice Nurse came out today and indicated that it could have been either that her system is shutting down now and it simply cannot process the foods that she had eaten in the past or it could be that, with as little as she had been eating, the pain medicines caused her stomach to be so upheaved that it finally couldn’t take any more… or maybe a combination of both. Either way, her system reacted by ejecting the food back out and leaving her weak and in great discomfort.

We have changed her pain meds from the hydrocodone to morphine now, and she is much more somnolent than even before. We were administering the Tylenol and Hydrocodone rectally yesterday to allow her tormented stomach a chance to heal. Now that we have switched to the new medicine, we are giving it to her in a small syringe, without a needle, directly into her mouth. It is vile tasting, so we try to follow it with some water to wash away the taste, but she is able to only take the water in very small sips, also from a syringe.

As her body begins the final shut down, her ability to regulate her body temperatures is failing. She is going through phases where she is hot and clammy or down right chilly. We have to keep adjusting her bed covers to address the changes and Tylenol suppositories help keep her from getting too feverish.

We are watching for her feet and hands to start getting cold, which they seem to be doing slightly already, and then turning a bluish color as circulation to her extremities slows down in order to allow her heart to maintain the body core. We are seeing her heart rate beginning to rise and her oxygen saturation to drop. All as expected in the end stages of this process. Even her skin color is starting to turn sallow and a bit yellow due to the slow shutdown of her renal system.

All in all, we are working to keep her as comfortable and pain free as possible. In one of her brief wakeful moments she told my sister that “He is smiling”. My sister asked her who she meant, was she speaking of my father. She said, “Yes.” So my sister told her that he has been waiting for her and is delighted that they will be together again soon. She then told her that he was probably saying what he had said before many a trip they had taken together…. “Hurry up and get packed! Let’s get going!” We all laughed at the shared memory as she drifted, smiling, back off to sleep. Gently and peacefully, it’s not a bad way to go. As a friend called it today, “The long, slow good-bye”.

Slowing Down Quickly

We may be slipping into the “last stretch” now. The changes are coming quickly and they are quite pronounced. I’m just going to bullet point changes so as to make them easier to understand and to process in your thinking. Please note, most of these changes have occurred in the first three days of this week. So, when I say quickly, I mean Quickly!

Mom is sleeping even more now and it is hard to waken her for food or meds.

Mom is eating almost nothing these days and we have started her on Ensure in order to get some nutrients into her system.

Mom is taking in very little in fluids, she can’t even finish an 8 ounce bottle of Ensure in a day, and she declines the iced tea, which she had previously enjoyed, almost without fail.

As a result of her reduced intake of foods and fluids, her fluid output is greatly reduced. Her urine is much stronger smelling now and is actually a brownish color.

Her heart rate is only in the 80’s, but we are expecting it to climb as her heart has to work harder and harder to assist her failing organs.

She is seeing and conversing with people that I cannot see in those times when she does wake from sleeping for a moment.

She is experiencing very real anxiety if she wakens, looks around and doesn’t see me or a caregiver sitting in her room. We are almost always here now, leaving only to get her something or take a quick potty run or grab a tea refill.

Mom’s pain is increasing and we are keeping her medicated for that pain more frequently now.  The offset of that is that she will become more somnolent than she already is, but that option is favorable to her being in pain.

Her breathing is slowing down. There are sometimes delays between snores or deep breaths, which the Hospice Nurse says will increase to almost apnea like stops in her breathing for a moment here and there.

Through all of these changes, when Mom wakens and sees me with her, she smiles. She even still plays little games with me when I am trying to feed her, like closing her mouth just as the food gets to it and then giggling. It makes me more likely to spill that pudding or applesauce with her meds in it, but it’s none the less delightful to see her smile and know that her joyful spirit is still very much alive and doing fine!

She is certainly setting the bar high for her kids in her handling of this whole “dying with grace” process. Which comes as no surprise to any of us who have known her all her life. I sure do love her!

A Quick Aside to Caregivers

Friends and family, please forgive me this one quick aside to any Caregivers who might be reading this blog.

My dear Caregivers, be forewarned, there is a greater enemy out there than any you can imagine when you take on this task. You can’t conceive of how hard it will be to go from a busy, engaged lifestyle to one of stillness, of sitting patiently nearby so that you can be bedside when you’re needed, but you come to adjust. You don’t know how little you actually understand about the processes of decline and the breakdown of the mind and body, but you will become an expert in learning on the job. You don’t understand what it’s like to care for an adult who has become, first a toddler, then an infant, but who still knows that they are older than you and that you shouldn’t be telling them when to eat or changing their soiled undergarments and clothing, but you will both get comfortable with the reversal in roles over time.

“What you don’t know” and “what you don’t understand” are all enemies that you can overcome with patience, love and time. The real enemy is the one for which you think you are prepared, but you are not.  The real enemy is the sadness, the sorrow that eats at you slowly in the night or in the quiet moments between your loved ones breaths, as they start to slow. You tell yourself, that you are not worried or stressed, that things are going “as expected”, until you realize that your psoriasis, a stress triggered skin rash, is exploding all over your body, or until you connect that every meal you eat gives you an acid stomach or until you realize that, whatever message your body is sending to you, it is becoming too obvious to write off as something else.

You assure yourself that you are prepared for what is coming and that you are strong enough to handle it; maybe you’ve lost a loved one before, so the second time’s gonna be a cakewalk. And you’ll believe that… right up to the moment when you realize, viscerally, that this is a no win effort. It doesn’t matter how hard you work, how diligently you have cared for your loved one, or how much you have studied and put into place all the little caregiver tips that you’ve found that “should help” your loved one, you are going to lose this fight. And you are going to lose it Big Time. The game was rigged against you from the start and you can’t stop it or even delay it beyond it’s time. You will lose and your loved one, who has been the focus of your ever shrinking world over the past few years, will leave you forever and you will be alone. That’s the Sadness. That’s the enemy against which you cannot fully prepare.

But I am telling you now, when the enemy strikes, you HAVE TO STRIKE BACK! If the sadness tells you to go get a glass of wine, that you’ll feel better, go get a cup of tea. You deny it control. If the sadness tells you to go eat another cookie, you get some fruit or the power bars you got instead of cookies so you couldn’t give in. You deny it control. If the sadness says just stay in bed today, someone else will be here to handle things. Then you get up, you shower, you dress and you Go Somewhere! It doesn’t matter if it’s just to the store or to the pharmacy to pick up meds or just a walk around the block, You Go. Or you set an agenda of work that you need to get done and a timeline to do it and you get to work around the house. Whatever it is that you can do, you do it and deny the sadness any control over you.

Yes, the sadness will still be there. You may weep all the way to the store and you my weep all the way back home, but you have gotten up and you have moved and you have fought off the lethargy and the despair that the sadness tries to place in you. And don’t you Dare weep in front of your loved one. They may not remember who you are anymore, but that instinct to protect you is deeper than the reach of the disease and it will upset them. So keep it to yourself.

Your friends and family will all say, “What can I do to help?” And they will mean it. They want to help. They will most likely feel very helpless themselves, being so far away or working during the day and caring for families of their own in the evenings, so that they can’t do more for you and for your dying loved one. They truly want to help, but in this, the hardest fight for you, they probably can’t help. Let them help in other ways, or, if they can spell you or “get you out” for a bit, call on them.  Remember, however alone you may feel, you are, most likely, not alone. Reach out; and maybe you can help others, by letting them help you.

Caregivers, you may not be able to beat the sadness, and I’m not sure I’d want a caregiver who didn’t feel its touch now and then, but you can fight it to a stalemate and refuse to let it color your last days with someone you love so much. Maybe you can find a fun outlet like writing a blog for family members and fellow caregivers into which you can pour some of your focus and thus keep the sadness at bay a bit. Whatever outlet you choose, music, reading, writing, learning a new language, I’m actually considering that as my “after the fact” distraction, do something that is beneficial and, if possible, a blessing to your life and, maybe, that of others. You will need a time to heal after all of this, and I assure you from my own experience, you won’t recognize that you need it, but from all I’ve read, you will. If there is any way that you can give yourself that time, take it. And always remember this line from a favorite show of mine, “You have done the impossible, and that makes you mighty.” You can put the sadness back in its proper proportion and in its proper place with time. Until then, treat it as an enemy and contain its impact on your life and that of your loved one, your family and your friends. That’s part of the job! Now, chin up and go get ‘em Tiger!!

 

Rapid Changes

Things are starting to change more quickly now, almost on a daily basis. Mom's sense of taste has become so sensitive that she really can only eat very plain, soft things; bananas, but not peaches, scrambled eggs, but not almond butter on toast, oatmeal but not grits. Her meal today consisted of about three or four bites of eggs and a couple of bites of banana. So far she has not wanted any dinner at all.

She is having a great deal more anxiety and tonight she seemed to have some waves of pain that she couldn’t locate for me. It reminded me of what was happening when the nurse told me that her organs were starting the slow shut down process. This may be another phase in that process. If the pain and anxiety continues through the night or starts up again tomorrow, I will call the nurse for her input. She is coming twice a week now and suddenly I am very grateful for that.

Mom has actually called out my name several times in the past few days. She remembers it when she wakens and calls out to be sure that I am there with her. She is more nervous, or anxious, about being alone these days. She is, also, having a lot harder time getting her thoughts across. I cannot imagine how frustrating it must be for her to have the thought inside her, but be unable to get it out so that someone can understand and handle the issue for her. I think I’m almost as frustrated by that as she is, because I want to help her, to ease her anxiety. We are keeping her on Lorazepam for the anxiety, but just on an as needed dosage, and on the Tylenol and hydrocodone for the pain. We are trying to balance keeping her comfortable with not causing her to sleep all day. However, she is sleeping so much each day as it is, that the pain and anxiety are really the bigger issues right now. She has settled into a soft sleep right now and she looks quite comfortable and peaceful.

Queit Days

The new phase is a peaceful one for Mom, for the most part. She sleeps most days for long hours and she really only eats one meal a day. She will often have a few bites of fruit with her evening meds, but she really doesn’t eat more than a few bites before she puts her hand up to signal no more. More and more beloved flavors now cause her to shudder and say "no more" as her sense of taste is starting to change. That was something for which Hospice had warned us to be on the watch.  She is also having a harder time swallowing liquids, but thicker fluids like pudding or oatmeal, seem to still be easy for her to swallow.

The edema in her arm is still there and it increases if we leave her arm down for too long, but she is uncomfortable with it up for too long as well, so we are juggling that balance. We are still battling constipation, but when she eats, and especially, drinks so little it’s difficult to keep things moving quickly enough to allow for comfortable bowels movements. I understand that this is often a problem at this stage in life, but we are working hard to minimize it for Mom.

There isn’t a lot to tell at this point. The Doctor has officially confirmed that she no longer has to take any medications other than those for comfort and ease. She is seeing “the Man” again, now. She often calls me by my dad’s name when she first wakes up and looks over to his chair where I am sitting. I’m good with that. We have not had any semi coma days for almost two weeks. I know that they will come on more frequently as time moves on, but for now we have cheerful smiles when she wakes and a sense of humor still lingers in her eyes.

It's Official

It’s Official… We are in a new phase.

Shortly after my sisters and brother had all visited her, Mom slipped into a pattern of heavy sleep. She woke up on Saturday and was wide awake and eating/drinking, but on Monday morning I could not even wake her up enough to get her medicine, crushed into some applesauce, down her. She finally woke enough for me to get a few bites of it down her when she was moved around as we changed her briefs, but she did not waken again to have any breakfast or liquids.

Later in the afternoon, almost evening, friends came by with their guitars and sang to mom for over an hour. At first she didn't respond, but when the wife started singing an old favorite of hers, The Gypsy Rover, Mom responded. She didn't open her eyes, but a smile slipped onto her face and stayed there for the whole song. Then husband sang a song for her and she turned her face toward his voice and opened her eyes. From then on, as long as they were singing, she watched whichever one sang to her. Later that evening I was able to get some more apple sauce into her with more pain meds. Other than a few ounces of broth and some of iced tea, that was all the intake she had on Monday.

Tuesday morning she woke up at 6:30 and started frantically demanding that I go find Dad. I couldn't get her meds into her until about 7:45 because she kept saying no and then demanding to know where "the man” was and when he would be back. Once I got her meds in her and assured her that Dad would be back and wouldn't leave without her, she calmed down a bit.

Our Hospice nurse came in Tuesday afternoon, two days early, and spent a good while with us running through an update on end of life medicines and how to administer them. She has taken Mom off all diabetes medicines from here on. If her food intake is not consistent, then her diabetes medicines will do her more harm than good. We are confirming with her Hospice doctor if we should discontinue all of her meds at this point.

Mom does have some edema in the arm that she holds close and doesn't move. (Edema: An excessive accumulation of serous fluid in tissue spaces or a body cavity.) We have her arm propped up in order to help keep that down and the nurse says that is working. She also said that Mom's heart rate has gone up and her oxygen absorption has gone down, both as expected with her change in state.

Even in her more wakeful state on Tuesday, Mom only ate a half an egg, a few bites of cantaloupe and, when I discovered that they were ripe, she ate two fresh figs off of the trees in the orchard. She didn’t want dinner, but I did get her evening medicines into her with some pudding. She drank only about 10 ounces of fluid Tuesday, but the fruits gave her some extra liquids, too.

Last night, as soon as I turned off the lights, Mom began demanding that I go find “the man”. She was agitated and restless nonstop until after 1:00, when she finally fell asleep. That is when things got really interesting. Mom started talking in her sleep, in full, coherent sentences and paragraphs. Her brain is still working perfectly in her dream world and I lay there listening to her side of a conversation with someone and just smiled. It was totally, totally my mom.

Per the nurse, we will have more of these “coma” days, followed by wakeful days until the day that she doesn’t have a wakeful day afterwards. The long, slow summer will begin to wind down soon and it seems like Mom may be following its lead, but only time will tell.

New Phase?

It’s beginning to look like we might have dropped into a new phase. Mom is sleeping almost all the time right now. She is sometimes so deeply asleep that, for example, one morning I actually pricked her finger for her blood sugar test and then squeezed it a few times to get enough blood without her even waking up. I call it being Zombie Mom, because she is so difficult to rouse even slightly.

Two days ago she was less deeply asleep and yesterday she was bright eyed and chatty, so I was hopeful that it was a passing drowsiness. She has had such periods before, if you recall. Today, however, she has been back in her deeper sleep state and has declined all but a nibble or two of dinner and has had only about 12 ounces of liquid all day.

 
I’ll watch the situation closely and let you know if things change. What triggers a changed like this? I don’t know. I guess it could be that she was “on” for that full week while I was gone and she felt like she needed to be the hostess and the exhaustion propelled her to drop into this new phase. It could be that she has been struggling so with some of her bodily functions as different organs and systems slowdown that she is exhausted from that and has slipped into this new phase. I suspect, also, that it could just be the “normal” progress of the disease and any or all of those things could have sped the process up or had no bearing on it at all. At this point, all I’m worried about is just keeping her fed as much as she will eat, getting as many fluids into her as we can each day and making sure that she is comfortable and happy.

It is emotionally draining to watch her slipping this way and not be able to do anything to slow it down or stop it. I have found myself, more than once this weekend, feeling despondent, but I am able to recognize the reason that I’m feeling that way and to put it all into perspective. In other words, I shake it off! And who knows, tomorrow she may wake up smiling and giggling again!

Blah Blah Blah, I'm Sorry!

It was pointed out to me last night, quite gently, that I had not posted for a month. I had the good fortune, thanks to the intercession of family and my caregivers, to sneak away for a week. That meant the pre-trip frenzy for the week before and the wild running catch up of the week after. On top of which, blah blah blah. I’m sorry.

Mom did really well in my absence. Somewhere inside she recognized that things were different and people were with her that aren’t usually, so she put on her hostess and she was awake and aware and alert for the whole week. When I came home, she must have registered that she was off duty because that afternoon, she went to sleep and has been mostly sleeping throughout the ensuing week and a half. We think this is just her recovery time from being “up and on” for so long, but as it carries on longer and longer we wonder if it is really a drop into a new phase.

Mom was just renewed for Hospice, which now occurs every two months. She has lost body mass and is less functional, in general, than she was two months ago. She is eating and drinking less, as a rule, than before, but she is still eating a nice breakfast and a small dinner each day. It does seem that she has a bit of trouble sometimes figuring out how to swallow, that’s something that we will have to keep an eye on as things progress. We want to avoid choking.

She is also exhibiting more signs of trembling when she is stressed, but it doesn’t seem to show up otherwise. The nurse has advised us that the trembling can be a result of muscles breaking down causing loss of control. So, again, we are watching for signs of increased trembling, but are not seeing any as of now.

Other than that, it’s pretty much snoozing and eating and a little fun movie now and then. My sisters even rolled her bed out onto the back deck, part way, so she could see the world a bit better. We have some pretty hot weather right now, but when the afternoons cool off, we might make start doing that more often! Brilliant Sisters!

The Long, Comfortable Nap

We seem to be in a plateau period of sleep. When my sister and my niece came to visit mom was very wakeful and engaged, but even before they were out the door she was drifting into a sleepy period. I had hoped that she would sleep for a few days, when it was rainy, and then wake up with the return of the sun. That has not happened. She drifts from one day, when she is wakeful and engaged for two or three hours, into days when she doesn’t even fully rouse when we wash her face or feed her breakfast. I have actually watched her fall asleep with a bite of food half chewed in her mouth on some days. Today was a wakeful day and we enjoyed if for as long as we could stay awake.

On the 4th of July, some of our neighbors moved down the beach line from where they usually shoot off their fireworks to set up their fireworks display right under my mother’s window. Knowing that this will most likely be the last fireworks display that Mom will enjoy, they put on a beautiful Independence Day show for her, and she enjoyed every minute of it. It was such fun to see her ooh and ahh as the colored bursts sparkled and cracked outside her window. She was exhausted the next day, but she surely enjoyed that great show. We are truly blessed in our neighbors.

Mom’s bowels are having a harder and harder time functioning now. She simply doesn’t drink enough fluids or eat enough food to produce regular bowel movements. We have her on both stool softeners and laxatives, but we are having to give her a suppository every three or four days in order to help her evacuate her bowels. She eats lots of melon every day to try to help increase her fluid intake. It’s a good thing she likes melon.

Mom is less able to get out of bed to use the toilet so I am learning how to use a bed pan and we are doing most of our changes in bed now. The last two times that we tried to get her up to go to the bathroom she vomited from the stress, so we don’t stress her any more. We just keep life easy and as comfortable as possible.

So for now, there isn’t much to report. There are smiles and there are moments of laughter, then there are long periods of watching Mom sleep. She talks in her sleep more now, and looks around her at things or people only she can see when she first wakes up, as if the dream is still with her. However, she is comfortable and is having no issues with bed sores due to the air mattress that Hospice has provided us. All in all, she is just enjoying a long comfortable nap.

And Then She Woke Up

About the middle of the day today, Mom woke up. She'd had a bath, been off the pain meds for over 24 hours and she'd had another bowel movement and suddenly she felt much more alive. She was chatting and engaged, almost following conversations and smiling. Oh what a difference a few hours can make.

She actually ate a bit more today and drank a bit more than she had in the past few days. When a neighbor stopped by to visit, Mom smiled and chatted with her. Mom even allowed the neighbor's little dog onto her bed and laughed at it when it sat up and begged for attention.

I'm sure it was the relief in her bowels, the cut back of the medicines and the fact that the sun had finally come back out that combined to make such a big difference. Whatever it was, I have to say that I went from tears to rejoicing in the course of the day.

She is back on her pain medicines now, but in a bit lower dose and we are upping the meds that will help keep her more regular. Tiny little adjustments that make all the difference in the world!

Cliff Hanging

Wow!! Some of the things that I just mentioned in the last post have suddenly become more than just a passing note. Mom seems to have dropped into a new phase. The extra sleeping, that we thought was possibly related to drugs, does not seem to be drug related after all. She has been off all medication for 24 hours and is still so hard a sleep that when I went over to touch her cheek to see if she was too hot or too cold, she didn’t even wake up. When I finally got her to wake up some, she didn’t offer her usual sweet smile, but instead appeared frustrated that she was being wakened instead of being left alone. Her sleep does seem to be a bit more restless this morning, but it seems like it is discomfort driven. She has not had any pain medicine, beyond Tylenol, since yesterday morning.

Additionally, when the Hospice Nurse came yesterday she was quite concerned at Mom’s constipation. This resulted in a rather extended and, for Mom, somewhat painful process of suppositories and enemas and other such efforts to remove the impaction. It is apparently not uncommon when systems begin to slow down and when new medications are added to the mix. We seemed to hit the perfect storm with Mom, but we will be much more attentive to the smallest signs of change in her bowel patterns from now on. I assure you.

Her food and fluid intake has dropped off the cliff as of the 12^th. I didn’t know it, at the time of the last post, but she wasn’t just having a slow night, she was dropping into a new phase. Since that time she has slept almost constantly. Even when being fed as much as we can get her to eat, she falls asleep. I often have to touch her chin or stroke her face to wake her enough to take another bite. She is mostly just eating what is required to get her pain medicines down right now.

The caregiver says that sometimes, when a patient is impacted, they simply can’t eat or drink anything. So we’ll see, now that things are moving, if she is a bit more receptive to food and drink. All we can do now is wait and watch and love her.

I’m am not sure where we go with it from here, but go with it we shall. We are focused now on keeping her comfortable. I know that seeing her smile may not be an everyday thing anymore. I know that this is why I’m here, but I also think this is going to be the hardest part of process for me, however prepared for it I thought I was. I think the fact that she no longer responds when I say I love you and she no longer smiles when I wake her in the morning are the things that hurt the most. But I’ll get used to it. It’s just one more step down this long path. I’m just grateful for all the family support and friendly visits along the way. We wouldn’t be able to do this without them! Sincerely! As my sister said, it has taken all of us to row this boat and keep it moving smoothly forward.

Extra Meds, Extra Sleep

Mom was having a bit more pain in her sore shoulder, but also in the rest of her body due, in large part, to her becoming more inactive. She only leaves her bed to be moved to her beside toilet and some days we don’t even do that if she is tired or uncomfortable. So we have upped her Tylenol based pain medicine to help offset the increase in discomfort. That increase in medicines seems to be contributing to her sleepiness and, perhaps, indirectly, to some other issues which we are seeing, such as fewer bowel movements.

Mom’s fluid intake has picked up some, however. I don’t know if that is medicine related or if it is influenced by the extra warmth and sunshine that we have been experiencing. Either way, we will take it! We have even gotten her out on the deck in the warmth once or twice. She has truly enjoyed it and managed to indicate repeatedly how beautiful the view was as well as pointing out all of the flowers that we have planted in the boxes. We moved several of the potted plants down the deck and outside of her bedroom window to add more color to her view. Anything that stimulates her brain is fair game. We keep flowers in her room all the time, as she enjoyed them so much in the past and they still seem to elicit a response from her these days.

We had the 6 month visit with a Doctor from the Hospice program. We are at a point where they have to decide if we are renewed on the Hospice program for another two months or if they feel that Mom is not declining enough to remain on Hospice. I’ll update you when I know the outcome of the visit, but, if they remove us from the program, we will figure out how maintain the equipment that is making a difference for Mom and just carry on as best we can until we qualify once again for the program.  

Mom is still happy and comfortable and she smiles when I wake her in the morning for her medicines. She has mentioned off and on today that she is seeing something above her, that I am not seeing, but she falls back asleep before she can find words to tell me what it is. However, it makes her smile, so I’m good with it being there and won’t try to chase it away!

Up Days and Errol Flynn

This week has been a bit of a mixed bag for us. Mom has slept a lot of the time, but yesterday she was wide awake all day and tonight, about dinner time, the original Robin Hood, with Errol Flynn, came on. She has been totally awake and engaged all through the movie. There’s nothing like the classics to wake a girl up!!

Yesterday morning, as I was trying to check to see if she was wet enough to require changing or if she could wait a bit longer, I tried to get her lo bend her knee or at least let me lift her leg. She was pushing it down onto the bed as hard as she could. Usually this is because it is stiff from being still and hurts her to move it. That morning, as I turned to her to ask her to help me lift it, I realized she was laughing at me. She still has a mischievous streak and a great sense of humor.

The pastor from her church came out with the Deacon today for in home communion. Mom has always loved to have them come out and has treasured the communion service with them. Today, although she slept through the sermon, we woke her for the communion and she seemed to appreciate that we did. Her appetite has been quite good the past few days and she has been drinking much more than she had been. It always feels good when she is more engaged that way, but I caution myself to remember what the nurses have said. With Alzheimer’s there are up days and down days. If we can enjoy the up days and not let the down days worry us, then we’re doing pretty well. Right now, we’re doing pretty well and, though sleepy for much of it, this definitely ended up as an up day! Three cheers for Errol Flynn!

WOOHOO!!

Mom's regular Hospice nurse finally got back to us today. She had been off with illness and heavy training schedule for almost a month. I had a chance to chat with her about what the other nurse had said and her response was very emphatic. She said she had no idea what would have prompted the other nurse to conclude that the time line was that short. Our Nurse said that we would see many more changes in Mom's condition and behavior before she was ready to leave us.

She said that she would expect to see her feet go blue, like her hands do now, from lack of circulation. She said that Mom would eat even less and drink less than she is at this time. She even indicated that Mom's continued sense of humor and ability to laugh and smile indicate that we probably have a few more months rather than a few more weeks. She did admonish me to remember that anything can happen, but barring an unforeseen change, she thinks we have more time with Mom than we had been led to believe previously.

How's THAT for some good news for a change?!!

Sleep Eat Smile

I had a heart to heart with myself this morning and I came to understand that the reason I have been so hesitant to post on the blog is twofold.  First, I find it difficult to write dispassionately about my Mother’s declining health and, secondly, I hate that so many posts would have to be” today we slept and ate a little bit then went back to sleep.” The cut and dried reality doesn’t offer anyone a glimpse of the bright, loving smile that she always offers when I wake her to take her morning medicine. It can’t show the giggling excitement when a classic old musical is on and a favorite song starts up. And it most certainly can’t capture the delight in her face when someone comes to visit and offers a hand to hold and then be kissed and patted in the cordial happiness of a born hostess.

 

Yes, she can barely speak two words together in a coherent manner.  Yes, it’s true that we are now crushing all of her pills and only feeding her soft foods that are easy to swallow. Yes, we are worried that she isn’t eating or drinking enough; if we can get a full 12 ounces down her every few days, then we count ourselves lucky and we supplement with melon to try and up the liquid intake. And, yes, she sleeps more and more each day; we’re up to 22 hours of sleep per day. Yes, all of that is correct.

But we also have days where she is wide awake for several hours and when she can even converse a bit, in her way, with those around her. She is always joyfully and patient and gracious to those who are around her, those who come to help her with bathing or toileting or eating. She is the consummate hostess, even in her bed, from which she almost never moves.

So I am committing to posting every few days, even if it’s just to say that things are the same. I expect you to understand that this is a slow slide and no news, and especially no change, is good news. Be joyful for Mom that she is comfortable and safe; rejoice that she is happy when she’s awake and peaceful when she sleeps. And don’t weep when you read these posts… I’ll do that for all of us! ;)

That said, this weekend we had some friends come and spend the weekend with us. They cooked and laughed and we enjoyed their company. On Saturday night two of them brought their guitars and a harmonica into Mom’s room and played and sang for her for an hour or more. They played all the old songs that we could think of, including Shenandoah, Red River Valley, Greensleeves, The Gypsy Rover and even The Yellow Rose of Texas. Mom laughed and sang along on a chorus line or two. She had a smile on her face thanked them over and over again when they were finished. She went to sleep with a big smile on her face. On Sunday, the day of the gathering, everyone took turns stopping in for a chat and a hug. One friend even sat with her and sang Amazing Grace with Mom. I guess it’s okay that Mom slept hard for the next three days, because she was wide awake and engaged for much of those two days. Good Times!!

Hard Things To Hear

When you enter the Hospice program you do so with the understanding that your loved one is within 6 months of death, as a rule. However, that is a vague, generalized notion and, with Alzheimer’s, that 6 month window can extend a good bit longer. It was in this setting that I was advised on Monday by the Hospice Nurse that, based on what she is seeing in Mom’s condition and behavior patterns, she doesn’t expect Mom to live more than another month or so.  A “drop dead date” as it were, for which I was wholly unprepared.

It has taken me this long to put this down on the blog because writing it makes it seem so final. And it isn’t. It is merely her professional opinion based on her years of experience with the process of dying. It is her professional opinion, in combination with one of my caregivers, who also indicated that she was bracing for the end of June, based on her experience. So I have wept, I have gotten my panicked, “What will I do and where will I go” attack out of the way and I am now focused on two things; taking care of Mom and making the most of the suddenly limited time that I have with her.

IN reality the time is no more limited than it was from the outset, but I am now feeling that limit a bit more realistically. She is sleeping even more than she was before. She hardly stays awake for breakfast and that is dropping down to just a few bites now, as her dinner has been for a while. These days her dinner consists mainly of melon and yogurt. She almost never finishes the yogurt. Breakfast is just a few bites of whatever the main meal item is, a bite or two of toast with jelly and, with luck, 2 or 3 of the most important pills. I am most often now giving her the morning pills with her evening meals. I can still get her to take them when the caregiver can’t seem to wheedle them into her.

The Hospice Nurse said that, before the end, many patients become more wakeful and engaged with the family and caregivers for a short period of time. She said, it’s as if they wake up to say good-bye and when they drift back off then they pass on soon thereafter. She said that families often think that they are improving, bouncing back, and then are devastated when death follows shortly thereafter. She wanted us to be prepared when that event occurs, so I guess that now we are. .

Our dog has gotten to the point where she is so anxious, in reflection of Mom’s anxiety, when we get Mom out of bed to use the toilet each morning that the only way she can be comforted is to lay on my bed where she can see mom and know that all is well. When Mom is finished and tucked back into bed to sleep, the dog then gets off the bed and goes on about her day. If she isn’t where she can watch Mom and know that she’s okay, then the dog stands outside Mom’s door and whines anxiously. This has proven to be a blessing because it tickles Mom to look over and see the dog there, watching over her. I’m not sure if she fully understands that the dog is concerned for here, but there seems to be a unity of spirit between the two of them that comforts them both.

Posts from here on out will probably be fairly unexciting… I don’t expect to see big changes in Mom, but I will try to wrangle my own emotions a bit more effectively so that y’all have a more timely understanding of Mom’s progress. My feelings don’t change things in the great spectrum of things, but sometimes they make it hard for me to sit and rationally lay out what’s going on. I know, I know. Big girl pants, Get ‘em on!

 

Bring On The Sun

A couple of days ago Mom finally woke up from her Post-Visit Recovery period and she has had two wonderful, wakeful days. Yesterday the Hospice bath nurse was here and, since Mom is always so wide awake after a full bath, as opposed to a smaller bed bath, we thought we’d try an experiment. So the nurse and the caregiver got her dressed, wrapped her in warm blankets and we wheeled her out onto the deck in the bright sunshine.

Mom had always loved to just sit outside in the warm sunshine and enjoy the sunny summer days in years past, but we were not certain if that would be the case anymore. We had suggested going out and sitting in her porch swing more than once, only to have the suggestion declined rather emphatically. We thought that, if she was already up and we just went there, then she might not object since the effort had already been made. I think sometimes that doing simple things is just too exhausting for her, but, other times, I think that it’s the process of even thinking things through with a brain that misfires at every other synapse that makes her so tired that she says NO without thinking about it.

I have to say, the clever ploy worked like a charm. She smiled as we went out the door and she oohed over the view and delighted in the few flowers that I already have out on the deck. The temps were in the mid to upper 70’s and there was a light breeze off the water, but she seemed quite content and even chatty, after her fashion. 

In fact, the plan worked so well that we are hoping to get her out on the deck, while we have some sun and unseasonably warm weather each day, if she will allow it. Fresh air and real sunlight never hurt a weary mind or body and its ability to delight and soothe a weary mind and warm that old body were quite obvious yesterday with Mom. And the gorgeous view didn’t hurt her eyes, either!

BRING ON THE SUN!!!

Visitors and Laughter

We’ve had lots of adventures of late. Mom’s youngest sister came to visit for several days and we had a continuing party! She spent most of the day, each day, sitting with mom and talking to her, watching movies with her and just giggling over everything that came up. They even stayed up until 9:30 or 10:00 several nights. The first night I made them stop giggling and go to bed, but then I realized that they were having so much fun, if it exhausted mom and she slept for a week it would be worth every minute of it to see her smiling and so happy. Well, by the last day Mom was worn out and she slept most of the day, but my Aunt got two or three days of visiting in, with more wakeful time that mom had exhibited in a long time.

And she has slept like a rock for most of the time since then.

She is also dropping her intake of foods and fluids dramatically. She still eats a good breakfast, but dinner is just a few bites, most days. We try to get her to drink as much as we can, but she often drinks only 6 to 12 ounces a day now. That is impacting her fluid output, of course, and that makes me worry about kidney failure when combined with her diabetes. The reduction in fluid intake can also impact her bowel movements, making them hard and painful. So we keep pushing fluids even when she declines them.

As a result of her dropping intake, she is also losing weight. I can now lift her up and hold her while the caregiver cleans her during her daily ablutions. We had to roll her from side to side previously, but this is much less painful and disconcerting for her, so, in a way, it’s a good thing. It’s sort of the upside of the downer.

We have had some very warm and sunny days of late and Mom is sleeping through much of them, but she is more fitful in that sleep in the mornings and willing to engage in movies in the early afternoon, so I am still hopeful that this summer may help her to be more wakeful and alert.

She has started seeing “family” again and has repeatedly called me by my father’s name when she wakes up in the morning, but is still groggy. She asked me yesterday if I was him now. I’m not sure what that meant, but what I told her was that he was one of a kind and I am not him, but I am taking care of her now like he used to do. She seemed to be happy with that answer and went back to sleep.

On a last joyful note, she has really grown fond of the dog now. The dog will come and lie on the bed while we take care of mom in the morning, watching over her. When we’ve finished, the dog gets up and goes back to sitting in the sun or prowling the yard for potentially dangerous sea gulls. Of course, she is always on stand by when Mom is eating. Recently, Mom woke up at one point, looked around and called the dog’s name. I asked her if she was looking for the dog and she said, “Yes.” So I called in the dog and she sat there and let mom pet her head for a few minutes until mom drifted back off to sleep. It’s good to see them becoming buddies!

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.