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me handle the impossible task of separating my belongings from my parents, sorting the important documents from the outdated and useless ones, and getting everything packed so that it can go where it needs to go with no further impact on my time?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!!