Thursday, March 30, 2017

What's Next? Part 16: Precious Commodities

 Mom has been living with us for over a month now.  Back on Valentine's Day, even the hospice nurses weren't certain she would survive, but she has defied the odds.  Her eyesight still isn't great, but she can see to color somewhat.  She's still having a hard time with the loss, though.  Her fine motor control is not where she wants it to be and she is sometimes frustrated.  She signs and dates her coloring projects, often putting an addendum on the bottom, "What a mess!"

The TV is on almost all day long which is a big change for me.  For Mom's sake, I'm becoming accustomed to it; however it does get on my nerves quite a bit. I am a fan of old Westerns on the retro channel, so it's not all bad. The biggest problem with the incessant TV is the repetitive commercials selling everything from replacement windows to handy-dandy kitchen gadgets.  (But WAIT!  If you call us right now, we'll DOUBLE your order!!  That's right!  We'll send you two pieces of junk for the price of ONE!  Call NOW!!

And when did Tom Selleck start promoting reverse mortgages?  (I still don't understand reverse mortgages, but I do like Tom Selleck, so the commercial is a little easier to take, but after seeing it a dozen times a day, ugh.)
Mom and I watch the old classic Westerns such as Bonanza, The Rifleman, Gunsmoke, to name a few.  One thing I've noticed is how many of the episodes revolve around the stars being lost/abandoned/kidnapped in the desert with very little to no water.  A bad guy shoots a hole in the hero's canteen or poisons the spring and oh, how precious water becomes as the stars trudge through the sand in the hot, hot sun.  

Growing up on the farm and having had many episodes of the farm well pump going kaput, I have always had a great appreciation for water.  It is still kinda hard for me to dump a stale glass of water down the drain; I usually try to use it to water plants or something.  The old saying, 'You never miss the water until the well runs dry' isn't  true when it comes to me; I try to never take water for granted. 

However, a precious commodity I hadn't thought much about in years is sleep.  I am guilty of having taken it for granted.   Not since my children were babies have I had so little shut eye.   I'm a night owl by nature, but alas, even owls have to sleep sometime. 

Mom's nights are fragmented; especially the first few weeks.  She   managed to sleep for about two hours and then the rest of the night was a free-for-all.  Last week was especially bad; I was up every hour and a half, running down the stairs, trying to get to her before she fell on her way to the bathroom.  

No matter how many times I tell her to stay in bed until I come to help her, she tries to sneak off on her own.  I know she thinks she's being kind to me by not being a bother, but the end result is I'm trying to sleep with one ear open at all times which after a few nights doesn't work.  Hyper-vigilance doesn't promote REM sleep; let's face it, I'm not getting any younger.  

I still marvel at adult children who take care of their elderly parents when they themselves are only twenty or so years younger.  How do they do it?  Mom was thirty-eight when I was born, so I'm quite young in comparison to my friends whose parents were only in their twenties when they were born.  I cannot imagine being in my seventies and trying to care for my ninety-six year old mother.  It is hard enough at fifty-nine.

Me, Circa 1976, age 18--no wrinkles, no gray hair
If we could only get some sleep, our new life would be so much easier.  And if we are going to engage in all-night insomnia fests, if Mom would only tell me when she needs to get up I wouldn't have to be a night watchman.

Last Wednesday I must have fallen into a deeper sleep than usual and I missed Mom getting up.  The creaking floor alerted me through the baby monitor and I was flying down the stairs as fast as I could claw the CPAP off my head.  (We should have installed a fire pole so I could simply slide down into her bedroom.)

I was so, so tired; we'd been up at least ten times that night, and I hollered, "WHY, WHY won't you just TELL me when you need to get up??!  PLEASE!??  All you have to do is SAY something and I'll answer you on the monitor and come right downstairs.  You have to WAIT for me so you don't fall down! Can you PLEASE try to remember?  At this rate you'll be burying me!!"  I begged, angry and tearful.  And tired.  

And instantly ashamed.  I've never yelled at my mother in my life.  We didn't have the typical mother/daughter relationship when I was growing up.  Since Dad was very strict, I've never thrown a temper tantrum, never stormed out of the room crying, never shouted, "I hate you!" or any other nonsensical teenage rebellion crap.  Mom and I were partners in farming and trying to stay one step ahead of the frequent insanity that characterized life with Dad.  I have seen or talked to my mother almost every day of my life which definitely has to be some sort of record.

So, imagine my shame when I found myself unreasonably angry with Mom the other morning.  It was part sleep deprivation, part self-pity, part desperation.  The nurses have cautioned both of us on the misery a broken hip would be; she might not be a candidate for surgery, so she would have to suffer seated in a wheelchair.  Nobody wants this to happen, so I have to stay vigilant at all times.  

 Mom remembers for the most part to ask me for help during the day, but at night, all bets are off. During the first few weeks of living here, at night when I tucked her in, I would say, "Ok, now.....when you need to get up to use the bathroom, what do you do?"

"I don't know," she'd say, gazing up at me.

"See this button?  All you have to do is push it," I'd say.

"Ok, now I'll remember.  I promise to be good."

"You're always good," I said, "But don't forget to push the button."

"I'll push the button," she always replied.

 The 'button' was the first way I had for her to summon me when this all started.  Dave had purchased a wireless doorbell with a receiver I can carry in my pocket while Mom has the coordinating button to push.  We'd taped the button to her bed rail and she was supposed to push it when she needed help.  Of course, she never did because she could never remember where it was or how to push the button.  We had a few close calls when she managed to climb over the rails on the hospital bed, but ironically bumped the button by mistake.

Another device I had Dave pick up for me was a bed alarm, a simple magnet on a string with a clip to attach to the patient's nightclothes.  When the patient sits up in bed or tries to exit the string would disconnect the two magnets and an extremely loud smoke alarm-ish noise will sound until someone turns off the switch.  Amazingly, the first night we used the alarm, Mom unhooked the string from her pajamas.  She was very sick at that time I was flabbergasted; how did she figure out how to unhook it?  She was so out of it when we clipped it on, I didn't think she was even aware of the alarm.  I was wrong.  

Back to the drawing board.

Enter the next phase of our Keep Mom Safe campaign, the baby monitor.  Now all Mom has to do is say something, anything, to wake me up.  Sorry to say, more than three weeks in, she has yet to say a word in the night to summon me.  Luckily, the monitor is very sensitive and picks up even the slightest rustle of the bedclothes. I have the receiver for the monitor right above my head and do my best to hear her moving around, but at some point I admit I'm not sleeping lightly enough to always hear everything.  

Or, on the other hand, I think I hear something and my heart is in my throat until I open her door and see she is asleep.  I soon grew tired of going up and down the stairs over and over again, and would turn on my cellphone and check the camera.  The only problem with using my cellphone is I had to grab my phone in the dark, turn it on, select the camera app and wait for the program to load.  Well, by that time, if Mom was up, she could have fallen.  

On Thursday night, I left my phone up and running and fell asleep with it on in bed beside me so all I had to do was grab it and check on her.  But silly me didn't have Wifi turned on and the phone was racking up minutes the entire time.  Oh, great.

One of the nurses suggested I sleep in the same bed as Mom.  True, it would probably be the safest option, but I don't think either one of us would rest very well.  I love the windows open and fresh air, and Mom needs it as warm as possible.  With my hot flashes, I'd never survive, plus my CPAP would definitely keep her awake (plus scare her to death when she'd see me in that torture mask.)

So the next incarnation of safety equipment was a motion detector.  I was at my IV appointment for Lyme disease last week Wednesday and while Joel was waiting for me, he ordered the unit which arrived on Friday.  The sensor is a bit touchy and was going off continually with false alarms which meant I was on my phone almost all night trying to figure out what was going on.  However, the motion sensor did alert me to Mom sitting up several times, so it was worth it. 

I complained to Dave about having to use my phone all the time, so last Sunday he decided to hook an old computer monitor into the security camera which enables me to have a live feed of Mom's bedroom right next to my bed.  The first night I left the display on, but it was hard to sleep with the light on.  I soon found the monitor will immediately display her room the second I hit the button, so now I can sleep a lot more soundly.  We're still having some false alarms on the motion detector, but all I need to do is glance at the monitor to know if it's time to run down the stairs or not.

I'm still using the string/magnet alarm, too. I have the alarm taped to her bed post and the string attached to her dresser; if she gets up and avoids tripping the motion detector, the noise will wake me up. 
One morning I saw her sitting up in bed and the string actually deterred her from trying to get up before I got there.  Phew.

After discussing Mom's sleeplessness with the hospice nurses, Mom was prescribed some meds at night and thank goodness, that has helped immensely.  Since Monday night, she's only gotten up about two to three times a night.  Carl takes her to the restroom in the morning at five a.m. for me if I haven't been downstairs recently.

Being able to sleep for three hours straight is heavenly and makes me a better caregiver.

 I'll never take sleep for granted again.  





FlowerLady Lorraine said...

Oh dear Karen ~ I am so glad the nurses suggested the med to help your Mom get some much needed rest for herself, which gives you much need rest yourself. This should help you both tremendously.

It looks like spring is coming to your area.

Love, hugs & prayers ~ FlowerLady

Sue said...

Hi Karen-just back from a month on the road and was distressed to see this post. Things aren't going so well, I take it. I'm sorry. I hope you get some much needed rest.
As for getting "snappy" with your mom--it happens. My gosh, you are doing SO much for her. Please know that it's ok.
Take care of yourself

outlawgardener said...

So sorry about your lack of sleep. Hopefully this new medication will help both you and your mom get some much needed rest.

Ellie's friend from canada said...


I would like to give you some advice but since I am not in this difficult situation I can only give sympathy and maybe provide you with some understanding.

When one is sleep deprived, patience is a victim. You are human. I think you are in the middle of the situation and as such you can be unaware of some things. You expect that your Mom will understand about calling you before she gets out of bed. I think that she may have had a very minor stroke like a TIA or some other vascular damage that makes her not remember some things. She is still very swift
but to me it seems like she has suffered some injury to her understanding. You are working on the assumption that she is unchanged except for her eyes. So you are expecting a rational response but this might not be within her ability totally. A friend pointed this out to me about my brother during his last days.

So bless her nurses that they are giving her anti-anxiety medicine. If your mother was close to not making it recently, then it is not so unreasonable to think that due to her recent illness or her great age that she has some vascular injury. There is something called the "sundowner syndrome". This happens to some seniors with vascular injuries or also dementia (not Alzheimers necessarily). As the sun goes down, patients become anxious. The patient can be quite ok during the day but night is another matter.

I have been called back to the Emergency Room STAT when my mother tried to climb out of a hospital bed not over the rails but at the end. Her confusion was caused by a urinary tract infection. Such infections (even minor ones) can make a senior appear demented temporarily. Does your mother have a low-grade bladder infection?

Your first priority is yourself. If you are sleep deprived you will be more susceptible to illnesses. Isn't that "great" that I am telling you what you already know? I guess I am mentioning all of this because I suspect from your comments that you are still operating on the basis that your mother can understand and adjust her behaviour. She may understand momentarily but not be able to remember it a few moments after. Was she like that before she was hospitalized? Was she catheterized in the hospital (catheters increase the risk of infection –– did she pick up an infection?). Is she on any other medication that affects her cognition.

You are doing a wonderful job and kindness for your mother. Is there someone else who can act as "night watchman" some of the time? When you get caught up in why your mother doesn't understand, realize it's her illness or something causing it.

I hope this gives you food for thought. This is hard work for you and you have my total sympathy. Take care of yourself!

Ellie's friend from canada said...

Stepping back from the situation, let's ask ourselves why your mother has to go to the bathroom 10 or 11 times per night. Is it anxiety making her visit the bathroom? If so, why is she anxious (is it because it's night and she's anxious?). Does she really need to pee that often? If so, why? Does she have an infection? Does she have the urge to go without going? Is she slightly incontinent from a weak bladder and is anxious not to wet herself (if so there is a medicine for that)?

At the risk of making a bad pun but to make you smile, and to misquote Shakespeare, the question maybe should be:

To pee or not to pee, THAT is the question.

Ellie's friend from canada said...

And finally (thank heavens you will say), it strikes me that your mother was in the hospital. I haven't gone back in your blog to see how long she was there. Hospital food is terrible. You will know whether or not she was eating and eating well. About 50% of seniors have a folate deficiency. Your mother probably is taking multi-vitamins but it would be worthwhile to have her tested for a folate deficiency and B12 as well. I know from personal experience that it only takes about 2 weeks to deplete folate supplies in the body. Folate deficiency can make someone unable to remember things. Indeed, they might appear demented. So start feeding her spinach, calves beef liver, oranges. Green vegetables that are not boiled but lightly and quickly steamed. Check with her doctor or the nurse practitioners. Give her a folic acid supplement. Don't overdose her but I read that 50% of people with dementia have a folate (folic acid) deficiency. Even though a lot of our food is supplemented with folic acid, if she had a hospital stay and was not eating, she may have depleted her folate supplies. I know for a fact that a folate deficiency causes loss of memory.

well, enough of my "non-advice"

Karen said...

FlowerLady, Thank you! Yes, the medication has helped a great deal, even though it does make her groggy for a few hours in the morning. Mom has said repeatedly she'd rather be a bit sleepy in the morning as long as she can sleep at night. Thank you so much for always being there for me, my dear friend.

Karen said...

Dear Sue, thank you! I am definitely far from a fantastic caregiver but I'm using this on-the-job training as a life lesson that will hopefully serve me well as life goes on. I can vouch for the fact that sleep deprivation is truly an effective means of torture, sad to say. (That's not the sort of life lesson I'm hoping to put to use though!) HA.

Karen said...

Dear Peter, thank you! With the addition of the sleep medication and my arsenal of alarms, we're both resting a lot better. And the weekend is getting ever closer when I can have two nights of partial respite when Carl takes his turn. :-)

Karen said...

Ellie's friend from Canada, 'To pee or not to pee' was indeed the question, at least last week. During the day I escort her to the restroom on a schedule, but if I didn't she would rarely ask. The hospice nurses suspected her wakefulness was more due to anxiety/disease progression than truly needing to go, hence the anti-anxiety meds which so far, have worked a charm.

A little back history: Mom was hospitalized with congestive heart failure a year ago in February 2016. She was in the hospital for four days and did have a catheter. She was released and then I was to take her to the nursing home for rehabilitation as a private pay patient. However, I decided against putting her in the nursing home and brought her home instead. I stayed with her for a week until she stabilized. Since we lived right next door, so to speak, we developed the security camera system in her home and visited her twice a day for a total of three to four hours. The system worked well from Feb. 2016 until Feb. 2017, one full year. Then her stomach issues began to multiply and after numerous doctor appts (over the course of the last three or four years) and two ER visits in one week this past February, here we are today.

I am always on guard for UTI's, I know they can raise havoc with her mental as well as physical state. We're blessed to have hospice to assist; without their guidance and encouragement, I would be bereft. The nurses are extremely well-versed in end of life care and are only a phone call away, thank goodness. A social worker visits twice a month (more if I request) and keeps an eye on our situation. As professionals, they know that caregiver burnout is extremely common. They have repeatedly told me that I'm only human, too. :-)

Sleep deprivation does indeed make me irrational, and I have only myself to blame for losing patience. I am fully aware that Mom had already lost much of her short-term memory several years ago; she is repetitive, but not terribly so. She still knows who people are, which is something my father lost the last year of his life. Mom and I took care of him until he passed away and a 'merry chase' it was. I'm not new to elder care, and should definitely know better.

Thank you for your care and concern. :-)

Ellie's friend from canada said...


We have a lot in common. Not only did my mother lose her sight (and her hearing), she also had congestive heart failure. I am so glad that you get partial respite on the weekends. I think it was so good you didn't send her to a nursing home in 2016. I am so glad the anti-anxiety meds are working. The last couple of years of my mother's life were stressful but utterly charming for me. We talked a lot about her life and the things I mentioned in a previous post. It was so special! We had "tea and a talk" a lot. I had special birthday parties with a few of her friends! I didn't realize you've had a lot of experience with elder care so hope you'll forgive my "non-advice" advice. Sleep well this weekend! Ann

Ellie's friend from canada said...

oh and I love your photos!