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!