The End of the Journey: The last blog

On December 18th, one week ago, my Mom got her wish and passed away. She had consistantly said that she had had an amazing life, with 2 wonderful husbands that she loved very much. She had had a wonderful circle of friends;she had enjoyed her children,her grandchildren and even great-grandchild.

Her husbands had preceded her in death, most all of her friends were gone and her world continued to narrow as both her eyesight AND hearing were very bad, probably because her bad heart had inhibited her oxygen flow.
We had talked about this frequently. In the last few weeks of her life, she had had less strength and getting her in and out of bed was getting harder and verging on my being unable to do this alone. She worried about that, although I told her that we were getting a new caregiver that could help me.

Just like her husband 3 years ago, on a Monday, she expressed to her Hospice nurse and doctor that she wanted to chose her date for passing. I think Wednesday morning, we had our last real conversation;I am sure it was of inconsequential things. She didn't respond or get up or eat again.

My brother called on Friday to say to pick him up that evening, he was on his way in. I expressed that we didn't know if she could or would rally. His response was pretty much, "see you tonight". On Saturday morning at 6:30 a.m. I was told that we would be able to have continuous care nurses. The first that arrived arranged the room, and then asked if I would like to help her bathe Mom. We each took a side and gently washed and lotioned Mom, changed her gown and combed her hair. The angel, er nurse, positioned her with lots of pillows and rolled up towels, so that no part of her would be uncomfortable in her fragile state. My cousins came out to say their good-byes. My son and his daughter came later in the day. Although we had not planned on having Toni come into the room, she was insistant on seeing "Little Grama" and "no" was not an option. Her whispered words to "Little Grama" stay in my heart and my memory.

The nurse shift changed at midnight. Something about that nurse made me feel like I could go to bed. It was the best night sleep that I had had for a month. At 6:30 a.m., she wakened all of us and said that things had changed. Mom stayed with us through the 8 a.m. shift when a young and very competant young woman arrived.

At 9:20 a.m. Mom took her last breath and the 3 of us let her go, hopefully to a wonderful,peaceful and easy place. Death takes a week and then a breath. It was weird.

The last angels, Dawn, Marcia and Britt were truely God sent. Debbie, her case nurse and Lynne her CNA always went above and beyond. Dottie our special Hospice Chaplain was a gentle guide till the very last. I did not get to know Mom's Social Worker, Paula well, but I know Mom appreciated her visits, with their heads together talking softly.

Life looks so different now and who knows how it will re-define itself? How the family re-adjusts its boundaries. This journey has been hard, easy, unexpected, beautiful and the best education I have ever had. Thank you Mom, it was amazing.

Let me off the roller coaster................

I never liked roller coasters! Not as a child, a teen, or an adult. I don't need to go out of my way to get scared.

These last 2 weeks have been more of a ride than I wanted or needed. My Mother, if we continue with coaster metaphors has hit the down hill part of the ride. The last 2 weeks have been mostly sleeping, little eating, except for 2 or 3 days this week. Then on a Monday a definate diagnosis of shingles. One of the worst cases that the nurse has seen in a long time. After being out briefly yesterday for errands and a hair cut, I came home to Mom with a fever and labored breathing. As prepared as I think I am, my heart pounded and my head felt it was going to split open. Morphine, of course, eases the breathing and the pain.

Today after having a bed bath and clean gown, Mom has slept for the past 12 hours. "What is happening?" I asked my husband? "You know what is happening" he answered.

The roller coaster is this: tomorrow, Mom may wake up and be hungry and thirsty. She may not be able to get out of bed to eat in the kitchen,but she may be lucid and talkative. Maybe she won't be. I don't know. I have the foolish thought that if I knew when, I could know what to do, how to act, how to be. Expectations? Can't be allowed the luxary. Wishes? That things could be the same as they were 10 years, or 5 or maybe last month.

Then and Now #3: (the last one)

Get...........The..........Belt!

Few of you might remember those terrifying words! Today the kid would call Child Protective Services if they heard that. When I was growing up, I heard that ALOT. I was "active" and frequently in need of "a change of attitude." When my Mom would threaten that Dad would punish me when he came home...or Dad would threaten with those terrifying words "Get the belt", I felt cold, deep fear! As alot of you will remember, my Dad was on crutches so those words brought out that instinct to flee....usually right up the stairs and into a locked bedroom. I may have faulty memory but I don't remember an actual spanking with a belt. The words alone changed behavior.

Today, when I say those words, it is because my Mom has been weakening enough so that even she knows we need a gait belt. A soft, padded support that helps me when her knees are buckling, or she is too weak to make the transition from recliner to wheelchair. It felt odd when I had to call out to my husband to "Get the belt". It is a weird case of "Turnabout". One to change behavior, the other a result of changed behavior.

Then and Now: #2

The story with Santa photo is this: The black and white is of me at about 5 or 6...my Dad had taken me to have my photo. That,in itself is interesting because my Dad was pretty strict about us being Jewish and NOT even pretending to celebrate Christmas. He told my Mom that just as the photo was snapped, I was telling Santa that we were Jewish and didn't celebrate Christmas. I don't know if that is true or not, but obviously I was talking about something.

The color photo was a whim. My Mom was feeling pretty good on Monday of last week. My sister wanted to go to the outlet mall, so the 3 of us went. As we passed Santa's little house, I said "Shall we?" My sister thought it would be a great memory maker. So here you go. When we show the photo to folks,my mother remarks what a very nice that was.

Then and Now: #1

Have not written anything in awhile. Holiday preparations and other things going on. All is well though. Including my son fixing my comments page.

I use this blog to verbalize thoughts that I have and walk around with...I am letting them go I guess.

I was re-filling my Mom's daily pill box and the thought occured of the first time that I did that. It was a maybe four or five years ago. My parents still lived in ChrisRidge and my Mom was recovering from a TIA and a septic bladder infection. We had hired a nurse's aid. My brother originally filled the pill box and reminded me that I would have to do this once a week after he left to go home. I felt a huge wash of panic. I never thought I could remember what pill went where, what each pill was. He actually wrote on the back of the box what went into each cup.

Wow, who how much of a no-brainer this would grow to be. Like the least of my duties today.

And some things never do!

My Mother spent most of her life at a much heavier weight. She spent a great deal of her time dieting and/or looking for the next good diet. Where do you I learned that from? I have lived with the dilemma all my life. I have been educated on many issues: not to wear horizontal stripes is a big one!

My Mom weighed 86 pounds at last her weighing, now she may even weigh less. She still sees herself as heavy. When we were out last week, I saw this little outfit by one of her favorite clothing manufacturers and got it for her.

When I took it out to dress her, she was horrified! "I can't wear horizontal stripes!". Yes, Mom, at 86 pounds, you definitely can!

Some Things have Changed

Recently we were talking to Mom's hospice nurse and a nurse in training during their weekly visit. For some reason we talked about traveling and I was reminded of my parents travels and later on, the summers they in spent in Colorado with their friends.

They had a wonderful group of close friends that they met when they moved into their first apartment. They added a few other couples on when they got active in our synagogue. At any rate, this group stayed close for all the years that they lived. Mom and 2 or 3 others are the only ones that are still alive as far as I know.

My parents traveled to England, Scotland, Wales, Norway, Sweden, Copenhagen and Israel..wonderful places and we have wonderful photos to remember those trips. After my folks drove across the country and back through Canada, they traveled to places in the North and South West. Later they found summer rentals in Colorado. They rented ski condos for the summer. Many of their friends also rented places there. Most of the times they stayed for one or two months. The fun that they had in Phoenix, continued in Colorado.

When I was telling the nurses about this, I realized that this is not something that most people could not afford to do today, especially retired people. Even more amazing, when I thought about it, most of the men were retired salesmen, not professionals ie: (doctors, or attorneys,accountants)They were folks who had worked all their lives and retired with some savings. These kinds of things that most of the folks that are retired (read hubby and I) these days just can no longer do. My Dad's stock accounts were steady and income-producing; their home was paid for. The owners of the condos were happy to have people in the condos, the prices were reasonable. In later years, the condos were sold to a large Japanese corporation and the prices were raised to rates that were no longer affordable.

It is just another example of our changing world, the loss of simple times. I am so happy that they did have the wonderful group of friends that they enjoyed, how wonderful that was for them. I am also happy that they were able to have travels and the adventures that were able to experience. It is hard to accept that most people these are times that won't happen for them!

The value of tension

Last Saturday, I had planned to fly into Los Angeles for the day. I do that when the gem show is in Santa Monica and I need supplies. I felt kind of worn out (not from decision fatigue,I think actual exhaustion). My daughter, who would have been picking me up, was not feeling great either. So we decided to cancel our plans.

I have thought from time to time about an ad on the internet for flotation companies. You get into warm salt water, in a private pod, close the hatch and float for an hour. Uninterrupted,alone and quiet....quietly suspended. The ads say that an hour of this is like 8 full hours of sleep. I was able to book an appointment for that afternoon.

It was a strange feeling because I am not all that good at simply relaxing these days....I was wishing I could read a book,(not possible), feared being bored and on and on.. I finally was able to really let go with some meditative breathing. I actually did fall asleep.

After finishing my hour, I felt great and full of energy. About an hour and a half later, I was so tired that I thought my bones had turned to jelly. I was good for nuthin! I did sleep well but awoke on Sunday completely lazy and unable to do a thing other than nap and lay around. I remembered this happened when I had a hot stone massage months ago. I thought at the time that I was just too relaxed and I didn't like it. I mean I need that adrenaline to get things done. There is a value of tension...isn't that what used to make clocks run?

Being the daughter

Early on when we signed with Hospice of the Valley, one of the nurses or social workers mentioned that at some point I might need to think of moving my Mother so that I could enjoy just"being her daughter". I feel like I am nearing that point but how do I every make that transition? It would be a huge change and I worry that she would feel discarded. I know I would feel incredibly guilty.

On the other hand, my day,when I don't have a caregiver, is reduced to taking Mom to the bathroom and making meals. I am truly feeling like I have lost myself. In addition, I am resentful and impatient. Confused and sad.

Could I be cruel enough to send her away and thereby changing my role from worn out caregiver to loving daughter? I have no idea how anyone makes these kinds of decisions. I wish I knew.

There is now a name for it:: Decision Fatigue!

This was a link on Facebook that directed me to a 7 page article from the August 17th New York Times about Decision Fatigue (I refer back to my blog, of August 4th). I have been wondering why I am so tired of late. Even with all my so called "help" these days, there are still decisions to made of who comes what day, what time, if I do this in the morning then I can't do that in the afternoon....if this one comes on Tuesday,then probably shouldn't have them again on Wednesday...should I stay home when someone is here, to clean, or get out while I can...but I have nothing to do, I could just go to the library where it is quiet. AND what do I make for dinner.

Anyway I excerpted parts of the article below that I think make my decision-making induced exhaustion understandable. The original article deals with how Decision Fatigue leads to lack of will power. In my case, it just supports being tired.


"Decision fatigue helps explain why ordinarily sensible people get angry at colleagues and families, splurge on clothes, buy junk food at the supermarket and can’t resist the dealer’s offer to rustproof their new car. No matter how rational and high-minded you try to be, you can’t make decision after decision without paying a biological price. It’s different from ordinary physical fatigue — you’re not consciously aware of being tired — but you’re low on mental energy. The more choices you make throughout the day, the harder each one becomes for your brain, and eventually it looks for shortcuts, usually in either of two very different ways. One shortcut is to become reckless: to act impulsively instead of expending the energy to first think through the consequences. (Sure, tweet that photo! What could go wrong?) The other shortcut is the ultimate energy saver: do nothing. Instead of agonizing over decisions, avoid any choice. Ducking a decision often creates bigger problems in the long run, but for the moment, it eases the mental strain. You start to resist any change, any potentially risky move —......

Decision fatigue is the newest discovery involving a phenomenon called ego depletion, a term coined by the social psychologist Roy F. Baumeister in homage to a Freudian hypothesis.

These experiments demonstrated that there is a finite store of mental energy for exerting self-control. When they forced themselves to remain stoic during a tearjerker movie, afterward they gave up more quickly on lab tasks requiring self-discipline, like working on a geometry puzzle or squeezing a hand-grip exerciser.

The cumulative effect of these temptations and decisions isn’t intuitively obvious. Virtually no one has a gut-level sense of just how tiring it is to decide. Big decisions, small decisions, they all add up. Choosing what to have for breakfast, where to go on vacation, whom to hire, how much to spend......"

200?

So last night my Mom sighed when I tucked her in and said,"You know I am really beginning to think I will live until I am 200!" I responded, "200, now that would be amazing,I don't think I have heard of anyone who lived to 200, outside of the Bible."
She:"What are you talking about????Lots of people live to be 200 and more!" I asked:"Are you meaning, 100?" She really got disgusted and said, "No, I have friends who lived to be 200 and even older, I need to find the Reader's Digest to show the list of names." I usually just let her talk and share the story as she sees it...but for some reason, I said, "well if you do live that long,you will have to move in with Buddy (my brother) because I don't I will be alive by then." She choked up and started to cry! I said "what is wrong?" She answered,"Its hard when a child decides to precede you in death." I said,"Mom I would be 170 yrs old if you were 200." And she answered "so?"

And sometimes we laugh....

Just so I don't come off as a completely depressing blogger;I want to report that last night, my Mom and I laughed like crazy people.

I was putting her to bed after what had been a really tough day for her. She was quite weak and frail. She usually tells me every night that she is amazed that she ended up living:a) so long or b) with me.

Last night before she could say anything, I said "I am so glad that you are living with me. I am happy that I can take care of you. It has taught me so much and I know I am a better person for the experience." She looked up at me with her hands up,gazing into my eyes, with a sweet looking of yearning and said "Can I have a piece of kleenex?" I totally started to laugh and she did too. I said "I thought you were going to say something very profound" and she laughed and asked if I liked that word. For some reason that was hysterically funny to both of us.

As I tucked her in, she said "You know that some of the "girls" my age say they are feeling great and they can drive and do everything. I feel great too, but only when I am laying down." That,too, sent us both into lots of laughter. I love those moments.

And one more thing................

I have a friend, who told me,many years ago when she was planning her son's Bar Mitzvah about that "one more thing". I think I remember the story correctly:she was saying all the different decisions that she had made and thought she had handled calmly and well. All the little stuff, the invitations, the wording, the table cloth color,the napkin colors, the centerpiece, the table placements, the clothing,down to the yarmulkes(the beanie like hat that Jews wear into synagogue). The last question, what color the yarmulkes needed to be sent her over the abyss.

I was thinking about this last night. All day I do my best. Responding to "I gotta go", to answering the same question numerous times,and trying to be as kind and patient as I can be. Last night after a particularly bad evening in the bathroom, Mom got into bed (I undress her, put on her gown and help lift her legs into the bed). After I straighten the lambskin(bedsore protection) and the bed pad(wetness protection) so there are no wrinkles in them, she decided to lay on her side because her back hurt. So position changed with appropriate pillow props. She was too close to edge of bed....changing again. All settled in. Just as I am leaving the room...."wait a minute, I need kleenex. I need to blow my nose." And it is that one last thing....that almost gets me...but deep breathes and the Serenity prayer, that is my saving grace.

And could anyone really be mad at tiny lady that sleeps with a stuffed kitty?

Hope

Hope: not as in Obama Hope, although he was the last President that my Dad voted for. He was thrilled to live to see the first Black (okay 1/2 Black President)...but this ain't politics and with all the governmental financial hoopla that goes on, my finances are of my own making, I can't blame it on any president.

Hope is something that I wish I had a bit more of these days...I don't even know what to hope for. I am just tired tonight. I just got Mom into bed and she is not feeling at all well.

I would like to wake up one morning and feel energized. I would like to feel like I got enough rest. I would like to sit and have my coffee and think...and not be listening for anything or be on the alert. I quickly feed the cat and let out the dog. I put an ice cube in my coffee so I can drink it fast enough to get the caffeine kick that I need to walk outside.

I would like to not feel guilty about giving my horses their breakfast quickly,giving each a scratch in their favorite place (Rebel, his back, Cisco, the belly) and say, "Gotta get inside boys, My Mom might need me" If it is early enough, I can scoop poop in the round pen, since Arnie does everything else out there. My horses, owning them was a dream come true, now they are 27 and 29 years, pretty aged for horses. By the time I care for the finches in the aviary, I feel like I can't take care of one more living thing....and my Mother isn't awake yet, or my husband.

My Mom gets up and calls me, she looks cute in her bed and smiles sweetly. I uncover her and change her adult "briefs" (diapers), and clean her up and re-brief her. If the Hospice LPN isn't coming, I dress her in bed;at least her socks, pants and shoes. Then I get her up into the wheelchair and put her on the toilet for the first time. While she is there, I clean her teeth, put on the polident and hand them to her. Then wipe her. I get her back on the chair and take off the gown, then put on her bra,carefully lifting each breast into their cup and then her shirt. I comb her hair, clean the hearing aids and put them in and then clean her glasses and place them on. Also her wrist watch.

Into the kitchen, where I have all ready written the day of the week on her board, with pertinent information of who is coming for the day. I also have photos of Mom with each person that comes here and sometimes I need to put those out, if she can't remember who is who. I have her pills ready to go with her. I make a breakfast that I hope is enticing and that she will eat. This is only the beginning of the day.

So H-O-P-E? I can hope I see my grand-daughter soon, or that my daughter calls to fill me in on her busy life, that I can get something done, including errands, groceries and such in the time that a caregiver is here.

Hope? what would I hope for? If I hope for more freedom, I am hoping she will die, if I hope to have time to myself, I have to have someone in the house to be with her....I hope that my husband doesn't get cancer again, so I can re-new our relationship. Sometimes I wonder who will go first; my horses or my Mother. I hope that the jewelry in the gallery sells and that I feel creative enough to replace any sales...tonight I hope for a good nights sleep and maybe wake up feeling energized,rested and hopeful for a day....but as one of my friend's said to me,"The thing that sets you free, will the thing that makes you the saddest." So what do I hope for?

When me babies was babies

I am feeling emotional of late. I have been told we become child-like as we age. I now have some friends who are care-taking parents and they are experiencing similar situations.

I mean, look, this blog is named Turnabout is Fair Play? This care taking for adult children is only amplified at the times I become part of the "sandwich generation". These are the times I have my grand daughter visiting. She is 6 years old now and the best part of my life. I am struck at how my grand-daughter is now far more self-sufficient than my mother.

My Mom is really not much taller than my grand-daughter at this point.She continues to shrink, probably due to spinal stenosis. I always tease her and say that one day I will come in to wake her and only an empty nightgown will be in the bed. Other times I say, she will be pocket size and I can take her everywhere in my pocket. Sure we laugh about it, but seeing her as I dress her or help her in the bathroom makes me sad.

Other times, I see the child after settling her on a sofa, with her blanket and newspaper and I pick up the phone to make a call but she needs something N-O-W. We cannot wait. If I am talking to a guest, she interrupts to ask a question that relates to nothing we have been talking about. When I finally settle her in and get the t.v. channel that she wants, she needs to get up to go to the bathroom. If we are watching something she doesn't like, she lowers her chair and says she wants to go to bed N-O-W. If we change the channel, she stays up.

Other child-like things: pointing and saying "look" because the words are too hard to come up with. At bed time, finding this the time to talk about life, hopes, wishes, and memories. We do not have these discussions during the day time. Much like my babies when I got them in bed...that was the time to talk. The old "stall" tactic.

Fears are still there: the doors being locked, are the lights on, something is burning, what if the washing machine breaks? Questions upon questions, again like a child asks.

When my babies were babies I knew they would grow out of the inability to take care of themselves. I knew they would be able to dress themselves, toilet themselves and get into bed by themselves one day. The only respite here will be to lose her and I don't want that.

If I could have any wish possible, I would wish that we were both young again. Of course, I would want to know what I know today...I would do a better job at lots of things.

Baby Steps

This is a beautiful photo of Mom supporting me as I walk. I think of many blogs that I could write when I look at this photo, but I will write what my thoughts are about lately. This is how blogs usually come about: I have a little seed of a thought, and/or I think of the name of a blog that I want to write.

"Anyhoo", as Mom would say: My Mother has taught me things all of my life and the amazing thing, since she is 89 and I am 64, is that I'm still learning from her. I know it isn't her formally teaching, it is just what I'm learning in this process.

I am talking about patience, tolerance, what is important,not forgetting to take care of self to be better able to help others, don't plan too far ahead, being flexible and so on.

On a day to day basis, I try to stay loose, not to make unbreakable plans and not to get too caught in having my own way. At this point in my life, it is not about me. However, I certainly don't do this perfectly!

What Mom has taught me, is that most of the stuff is "little" not hugely important and almost anything can be changed or left out. A meal happens when it does and it isn't always the food I had planned on. My time to"do" something or go somewhere, isn't always when or how I want to.

The people who are in and out on a regular basis almost everyday don't always put things were I want them or do the things I think I would like them to, but they afford me time to be by myself, to meet with my friends,or to do errands.

I am far more capable than I ever thought I was or could be. I am doing things I had never planned on doing. Being mad and impatient doesn't help much...it wastes a lot of my energy. It is far more productive to say "hmmm" and move on to the next thing. People are people and they pretty much stay who they are and if I want to see them I need to accept them as they are, not who or how I would like them to be. There are few things that I MUST do; I know this because when I can't,the world keeps on turning.


I have learned that what is in important in a spouse is not that he bring flowers daily but that he never goes to bed without making coffee so that it brews before I get up. When I am so tired I have to fall into bed with the promise of cleaning up in the morning, that I wake up to a clean kitchen. That kindness is making sure my Mom gets a kiss from him every night. Love changes,grows,takes different shapes and still can last if we let it make its changes.

I know that when Mom taught me to walk, she probably never realized that she would still be teaching me to "walk" even at this late time in our lives.

More to follow provoked by this wonderful photo. By the way, I was about one year old in that photo!

Family times

Just recently I was with some friends and we got to talking about growing up ,and eating dinner with our families. Most of us are now 60-ish and our kids are long gone. I am always amazed that somehow I managed to come up with a dinner for 4 people most nights of the week. Now that my children are gone, it seems like an amazing task.

Before my Mom moved in with us, Arnie and I would grab something very simple and frequently eat on a t.v. tray....watching the news or some other program. My Mom finds it hard to eat that way. So now, I usually cook something and we eat at the kitchen table again. Most times, I have no idea what to make although some weeks I am better at planning.

What my friends and I were sharing with each other, was how most of our families sat down at a dinner table together, usually the same time every evening and ate a well prepared meal that included the food groups and a dessert. My Mom cooked for 5 people for as long as I can remember, and after my sister left for college, 4 of us, then just for she and my father until he died. She and my 2nd father ate together every night too, usually at the same time....in our family,dinner was at 5:30, come rain or shine.

My Mom washed, ironed, mangled sheets (for those of you who remember them days!), was in charge of a 3 story home, with an attic... our yard was large. She kept the house cleaned and well stocked. I know we had help maybe once a week. She didn't work outside of the home but she sure must have worked inside it!

I remember our kitchen so well and I remember it fondly. My father made our table out of an old door that he stained green. It was built in against an outside wall and it was big. My sister helped Mom with the dishes. (I apologize for the photo Sharon, but dig the jeans and saddle shoes!).The little guy is my brother. I have no idea why there were no photos of me in this group. I either ran outside as soon as I could, or was in my room, being punished for not eating. It was a lovely livable home and a good time to grow up in.

Scatter Pins

Scatter pins....I can hear Oprah saying it for some reason: "SCAAAAAAAAAAATer PIIIIIIIINS."

Mom wanted to look through her jewelry boxes the other day and we had a nice time remembering things, I had to admit to her that as a kid, I used to love to go through
her jewelry box and look at things..(maybe this is when it all started, check out my website: www.aquariusrancharts.com.)

Anyway, I found these cute little pins and remembered that they were called "scatter pins". Presumably because they were worn just anywhere on a suit jacket or blouse.The ones that I remember her wearing the most were the bugs. Kind of strange choice. I do remember her wearing them frequently.

Just wanted to share this little memory. Share yours too.

Quiet Please

My father, Leonard, not to be confused with my step-dad Bob, was a person that I remember being terrified of. He died when I was in my 20's, just after my daughter's 1st birthday. (She will be 40 this year,just to give you some reference.)

My father had had polio and spinal meningitis when my sister was around 3 and I was not yet born. He was hospitalized for a year in an isolated ward outside of Cleveland. My Mom had to travel by train to visit him. I know from what others said that this really drastically changed his personality. My Mom has said that at that time there were no social services that helped the patient and family re-enter into their life. I realize that he went from being a virile athlete to a man with a back brace, leg brace and either a cane or crutches, depending on how well he felt.

As I said, I was always frightened of my father, I remember trying to get through a room without him noticing me and that was a relief if I could manage. I also remember him being quiet,if we were driving somewhere, he wasn't one to chatter, or someone to fill in a silence with just idle chit-chat. I took that to be a mixture of his disapproval,disdain,or anger toward me. I also felt afraid to ask him anything, it always seemed to annoy him.

I have realized lately how much I love quiet and alone time. It is not a reflection of anyone else but just a need for a shut down of the idle chatter that is such a big part of the day. I love mornings before everyone gets up, I love spending time reading quietly by myself, I love just hanging out with my horse and breathing with him. No need to say a word.I,too, get tired of too many questions. I realize that it is just folks wanting to make a little conversation, or learn something. I just want to be left in the quiet.

It is not a statement against anyone or anything, just a respite. I think I now understand my father. The quiet is refreshing not angry. I never thought I was anything like him,but it appears that I am.

When Cancer was convenient?

I know this is an odd thing to think about. My mind is "out there" at times though.

I have been interviewing some agencies to get a little extra day time coverage. I don't know if I will need to start driving my husband to his radiation treatments at some point. I also would like to feel like I can work outside without worrying about my Mom. Sometimes I go out to do a few things in the yard or the studio, out of sight for 10 minutes, after checking on Mom. When I see that she is sleeping soundly, I dash out, to take care of something. Like a psychic link..........she awakes when I am out of sight....and I come in to find her struggling to get into her wheel chair to do something...either find the dog, or use the restroom...or looking for me. It scares the H out of me.

Anyway, although this cancer is a more treatable one than my husband dealt with 6 years
ago, it seems harder in many ways for me. I can't be as involved or helpful. Yes I am taking over as many chores as I can,but I can't be with him. I don't know the doctors like I did before.(Could be because we had to CHANGE doctors, since his insurance was no longer accepted at the previous hospital.)

Oddly though I was thinking, it was easier before....my parents were both alive and living in their apartment, mostly self sufficient. My grand-daughter was a baby and I didn't feel like if I weren't a part of her life on a regular basis she would forget me. We were younger, our family was younger....I don't know, as scarey as it was.....it just seemed easier to go with Arnie everywhere and be sitting there while he had treatment...now he goes by himself and I hope he knows I am thinking of him..

The Men in her life

About a week ago my Mom's hospice doctor came to check her. This is a visit that occurs three or four times a year. He is a very nice man, who recently welcomed his fourth child, I have no idea of how old he is. Probably in his 30's or 40?

My Mother came from a rather quiet state of mind to a flirtatious,rather witty person. This is not the first time that I have seen her act like this. You might remember back to the "My Brother, The Messiah" blog? She has also sat up from an almost "death" bed to chat with the husband of one of her visitors. The photo I used on this blog was from a lunch with my son and her great nephew. She loved it!

This is not exactly new. I remember when she and Dad were living in an assisted care facility. She was walking over to talk to someone at another table and two men stopped her to chat. She was just smiling and animated and winsome. I thought to myself, "She still has I-T". It made me smile then and it makes me smile now.

There is no doubt that she looks at men and women quite differently.She acts and reacts very differently. Good for her I say! I hope I still have "I-T" too at 89.

The Good Times

A couple of different people have told me recently that they are now taking care of their parents. A lot of us not only want to do it, but financially it makes more sense.

I believe that hard times can make or break a marriage. We have been through some
very hard times from pretty much the beginning of our marriage. Major times, like overdoses, suicides, cancers, plane crashes,and divorces, just to name a few. There were times that we didn't look like we would make it but something always happened to bring us back to hanging in together.

We have both lost parents,step-parents and grandparents. My Mom is the last parent that we have now. I am amazed at how much and how well my husband cares for her.They seem to laugh together far more than she and I do. At breakfast the other morning, my Mom said to Arnie "Take my hand". This is her way of showing you how cold she is. I would have said that,"yes,I see you are cold." Arnie's response was "why, are you a Stranger in Paradise?" (from the musical Kismet,I believe).They both just laughed and the concern over cold hands was forgotten.

The photo in this blog is of Arnie having dressed Mom in warm clothes so he could take her out and show her the mountains that were dusted with snow on a Sunday morning. He said "We have to take her out and show her how beautiful it is. She can't appreciate that from a window." I went into the other room to find my camera. When I came out, he all ready had her outside, he had dressed her in a ski jacket and mittens. It was touching to me.

Recently,after spending a few days in Tucson,when we came home, I just said "Hi Mom",but he ran over to kiss her. I was like, "oops" and ran over to do the same.

What is it about our spouses/partners that makes us love them more for their tenderness with others that we love? I don't know exactly, but thank goodness for that good-ness.

Disclaimer to prior blog

In response to some of you...I did not write the blog to embarrass my Mother. I think this is a sad and uncomfortable situation for both of us. What I was trying to express here, is the feeling of not being qualified enough to know what the medication cocktail is for optimum function. When systems are not functioning well....life is VERY hard, very painful. There is certainly a huge amount of fear when the nurse walks out and its ME and Mom.

I am not trying to get folks to say how amazing I am, how sad this is... or fishing for sympathy. I HATE that this is how my Mom's life is now and my inability to do a darn thing about it.

Is it time to make changes? I don't know. Is it possible that I won't be able to have her here until the end? I don't know. The only therapist that I saw, told me that we needed to have her in a care center environment. This was a year and a half ago.

The times that I see my Mom at her most vulnerable are not toilet times but when she is
trying to brush her teeth. She stands at the sink, so small and frail, working so hard to do a perfect job. Somehow that stays in my mind the most. The little-ness of her.

Things I have never wanted to be

No offense to anyone I want to say that right! There are some jobs I have never been interested in doing: real estate agent, insurance agent, and certainly a nurse. As I said, I have no prejudice against the people who do these jobs, I have just never been interested in doing them myself. One of my dearest friends went to back to school to study nursing after having 3 children; my riding teacher gave that career upso she could study nursing. They are wonderful at their professions, I just do not get what made them want to do them. On that note I must say I have HUGE amounts of gratitude and awe for people who choose these professions.

I,as I said, never had any desire to do that job. Which is why I am bewildered to be
an untrained person doing this job. I now have to make decisions for my Mom that I feel totally unqualified to do, but I do them. This past week was really hard. My Mother ended up with an impacted bowel. I usually can handle
these situations on my own,(yes I have dis-impacted my Mother) but this was beyond my capability. The nurse and the nursing assistant had to work with suppository and enema and I got to hear the crying and screaming that accompanied that task. Of course, since neither one will move with us (even though I offered to cook whatever they wanted for meals), I was left to see what would happen in the afternoon.....would there be uncontrollable diarrhea, which can commonly follow an impaction? More of the impaction? Some trips to the bathroom that would ease the problem? I didn't know. If I gave her atavan, would that ease things or make it worse? How much to give her? Would she be willing to use oxygen since she was so exhausted?

One of the problems was that I not noticed how long it had been since she had moved her bowels. The reason I had not noticed was because my husband had gone to have his radiation markers placed on Monday. Since I had no caregiver that day, a kind friend took him. When he came home he was completely "zonked" as we used to say. I was caught up in caring for him. My mother too had not felt well on Monday.

Mom had back pain on Monday. I decided to give her atavan, not morphine since that is constipating. She had all ready had 1000 mg. of Tylenol and that had not worked.

These are the kinds of decisions, that I,who am not a nurse, make. What kind of pain meds. What do I do about constipation? If I use too much Miralax, then there is diarrhea, and if I give her too little there is impaction. In addition, when there is too much diarrhea, a bladder infection can occur. My Mom is completely asymptomatic and the only clue we have is increasing disorientation. However, I am seeing that anyway and I believe it may be her dementia increasing. If I give her the antibiotic(there is only one kind left that she is not allergic to) and if she doesn't have an infection, I may be increasing her resistance to this one antibiotic that she still take. Chronic diarrhea also increases soreness to the skin, so I have to watch out for bedsores, treating them with a paste that the Hospice people taught me to make out of 3 different balms. (They call it Pat's Paste, I call it Rena's Rump Rub) It is best to catch that red skin before a stage one and if not, at least take care of it before it gets to stage two. (can you believe I use these terms? Stage one and stage two??)

Wait a minute here? Does she need a little oxygen? I need to find that out. Is the filter clean and is there enough water in the canister before I start it up. By the way, I am quite good at cleaning wax out of a hearing aid.

For my last job....I never thought about being a beautician, but I just dried and styled Mom's hair, after her CNA washed it. Later, I will clip and file her nails.

I think what I am trying to say here is that I feel really inadequate in making the decisions I make on a daily basis. I really don't know what the right meds are and what the right time to give them is and what they will do or affect. I sometimes just wonder if I am slowly killing my Mom or really making her last days happy and comfortable.

Who are/were you? Who am/was I?

These silhouettes were done many years ago at Silvers Temple in Cleveland Ohio. I remember it being some kind of fund raiser and my Mom had these done. At the time I wasn't all that happy about it. That was the kind of kid I was. Kind of rebellious and non-cooperative. I did my own thing when I could get away with it.

My Mom was someone that I was kind of scared of because she had this sixth sense of what could happen. She told me that a mother always knows when a child lies. I asked why and she said that a line appeared on the child's forehead. From that point on I always managed to do an interesting hand to forward maneuver when I had to "fib".

My Mom knew a lot of good information and taught me many good things. I was always afraid of her predictions of what could happen,but headstrong enough to disobey her.
I still wondered as I was in the process of disobeying her what if "God really did punish me"? This was one of my Mother's biggest admonishments.

My Mom also was an amazing cook, baker and gardener. She seemed quite invincible and stalwart. I was defiant and wild for a many years. I won't go into that at this point. (my actual behaviors) Just suffice it to say Mom was good, I was not.

So who are we now? My Mom is so tiny, fragile, and doesn't remember so many things including cooking tips and other information. It makes me sad and also frustrates me at times.

I,too, feel so different than I was. What happened to the energy and curiosity? The spunkiness? I am just humbled and tired these days. Neither of us is the same. Is it just part of aging? Our situation? Wish there was a blend of the old and the now for both of us. A few dreams still out there to be fulfilled.

High Anxiety

When I was tour guide at The Heard Museum here in Phoenix, we did a little disclaimer when we weren't sure what something was. We used to say, "We aren't really sure what this object was used for, but it is speculated that it had ceremonial purposes."

I think that the medical profession has a similar disclaimer that goes like: "It's part of the decline process." That is a good answer for anything that changes that is no medication for. (In my humble opinion.)

After the panic of January 2011,when Mom thought she would not live for the 3 days until my brother and sister arrived, there seems to be a change going on. She has always had a issue with things that are not completely orderly, but it has risen/lowered to a whole new level.

Some of the biggest and constant concerns include the locking of all doors,and the frequent checking of such.What day it is and more important,what time it is, at 5 minute increments. The proper closing of all shutter slats, the equal opening of same. The use of 4,count them: 4, squares of toilet paper....unusable if they are not
torn completely straight. Bed clothes must be put on in a certain way, no sleeping with any drawers or closet doors even slightly ajar. The sliding bathroom pocket door
is closed to left side of the grout line in the tile closest to the shower. And have all the animals been fed, the birds? Constantly; "Where is Arnie?" Although Arnie says if I leave the room,"Where is Gloria?".

Curiously, one of the constant concerns is the erosion on Gavilan Peak, a mountain visible from our kitchen table (when the shutter slats are opened). There are a couple of slopes or "grooves" or "indentations" as my Mother calls them that are of particular concern. She says they widen daily, sometimes hourly. I am called in to look at them numerous times a day. She things they will not harm us though as the mountain is about 3 streets away.

This might seem funny if you didn't live here. It also might be funny if you had NOT spent the last 25 years trying to not worry about things I can't really change. As far as going to bed with all things in order, most nights I flop into bed and don't care where anything is or if the closet door is open, closed, or off the hinges, I just want to sleep. I sure don't care if my slippers are lined up facing outward and side by side evenly.

Even my husband, who usually scoffs at my complaints is getting a bit impatient as each time he moves in his chair while watching t.v., he is reminded to check all the doors, to see if they are locked.

When I asked what is going on with Mom, it seems that after such a great time with all her out of town visitors, a decline is not uncommon. It is simply part of the process. Did I mention before that I totally get The Who song: My Generation, when they say that they hope they die before they old??? It is just too stressful for all concerned....the older and the oldees.

A love letter

Happy birthday to my husband. He is 71 today. I remember his 30th birthday. We have shared a lot of years together. Love is a funny and dynamic thing. I say it is dynamic because as a young woman there were things that were important to me that I kind of smile about now. All the times that I thought there was someone out there who would love me more, appreciate me more....I didn't think about the person who tolerated selfishness, PMS rages, bad meals, losing the bank deposits, not to mention illness, surgeries. The lack of daily compliments doesn't compare with trips to Europe, Wyoming and beach vacations. I have gone through many phases,but one thing has pretty much remained the same: Arnie was there. It is easy to see faults in everyone else, but not so easy to see one's own.

What I see as love today is that guy who has always been here for his family, who has always welcomed MY family in his home.Every Thanksgiving, he looks through his recipes to see what he can come up with to cook for his extended family. Although I may groan about "all the people", he is always happy to be making a dinner for his family. I remember years ago he said " I love to smell turkey cooking while my football games are on." The man who took care of my father so lovingly in his last days,who has cleaned up some unimaginable messes with me and who lovingly removes his grand-daughters foot from his head in the middle of night. We have had some spectacular fights and some spectacular make-ups! We have been through some incredibly sad experiences and some wild adventures in the past 41 years. Love is patience,tolerance and acceptance.

Thank you honey and happy birthday. I am glad to share this journey of life with you.

The Beauty of It

My Mom, as I said last time, had a pretty rough week until my brother came out. He spent a week here and spent about 24 hours with my sister, who arrived on the Friday following his arrival. We picked her up at the airport after having a nice lunch out. Not only was my brother healing for my Mom, but he was wonderful company for me. I so appreciate the man that he is. He has alot of love that he shares with everyone he comes in contact with.

Although the original plan had been for the 3 of us to be here with Mom over the weekend, it ended up with each sibling being here on their own, except for the 24 hour cross-over. My sister adds a sense of calm-ness to our lives and the positive outlook and encouragement that we all need about now!

The beauty of it is that the individual visits were wonderful. Not only for my Mother, who seems to get confused with more people around her, but for me and my husband. I got to have really special, loving and quality time with both my sister and my brother. My husband got to enjoy time with each of them too.

I am so fortunate to have this relationship. I know that not everyone enjoys or loves their siblings. We all have our foibles for sure, but they don't hold us apart from one another. I feel fortunate and blessed. Thanks to both of you! I love you both.

My brother, the Messiah: no offense intended

Many of you have probably received that email that has gone around about Jesus: the reasons why he was Jewish; Italian; Irish and so forth? In each one the mother is extolling the attributes of her son and why he must surely be God.

I don't want to offend anyone,seriously and truly, but my brother just might be the Messiah.

What a week. My Mother has continually declined and on Thursday night/Friday morning, things did not look good. In fact, she said on Friday that she was amazed that she had lived through the night. She had been unable to get out of bed and lay there with oxygen as she was having trouble breathing. I told her that both my sister and my brother would be here on Thursday. Her reply was that she hated to disappoint them but she really did not believe she would be around by Thursday. When her nurse arrived I asked what I should do,and she said to just tell my sister and brother what Mom had said. That no one could predict what would happen.

My sister has had her own health problems since May and this trip here will be the first time she has been allowed to fly. Her health is dependent on her doctors and it was necessary that she see them before she could go anywhere.

My brother and his wife felt he could and should fly in that night. He arrived at almost midnight.

The following morning when he walked into her bedroom and said "good morning" her face lit up and shone with happiness. For the first time in almost a week, she was able to get out of bed with little help. She wanted to dress. When she sat at the breakfast table with him, she ate her first good breakfast. She has since packed away 3 hearty meals. Her biggest fear is that he will leave in the middle of the night while she is sleeping. Even though she calls him by her (deceased) brother's name, she knows she loves him and that he is cute. I am just amazed at his healing abilities. I can only hope he buys a lottery ticket for me. (In all fairness, I too love him and think he is cute!)

Dimished dwindling, declining

These are the terms that describe my mother. The terms that might be used for me: confused,confounded,crazy. Mom had a really bad few days, in fact I thought she had
turned the corner, but on observation, her nurse said:"She is declining,but not actively dying." I don't know what any of this means really. When she was so sick
on Saturday and Sunday that she could not get up by herself (by that I mean from chair to wheelchair) I thought we were nearing the end.

And once again I was overwhelmed with a sadness. I don't want to lose her, but I know I all ready have. I really want the Mom I had 5 years ago, and even better 10 years ago. This tiny little quiet and confused lady; is she really my Mom? I don't even know how to describe or explain where I am at this moment. She is better today. I guess that is all I know.

Even when times are tough, she and I can still share a laugh and that is magic.
A friend of mine taught me to tap my palm and say "right here, right now". That is where I am today and of this moment. I have no idea where I will this afternoon.

Its baaaaaaaaaaaaack!

My husband has cancer, and while it isn't the same cancer as before or related to it, it is cancer and will need treatment. It is interesting how many men deal with prostate cancer and how many choices there are to made for treatment.

Here is what is so different this time, at least for me, maybe not for him or maybe he doesn't notice the difference. When he had cancer in 2005, I felt like we were a team. I went to every appointment, I went to radiation treatment with him...I stuck by his side like glue. I realized in those days that as much bickering as we might have done through the years over so many things, I didn't want to face life without him.

This time I am torn between caring for Mom on a daily basis and getting to be by his side. Without a caregiver around I can't go out with him. Is it selfish of me to be concerned about how I will split myself in two? What I will do if or when he can't drive himself to the last few weeks of radiation? I mean on days when I have no caregiver?

I miss our relationship: there are times that we don't bother to talk because Mom wants to know who we are talking about and if she knows them and how we know them, so by the time I explain,I forgot the message that John Doe had for Arnie when I ran into Joe at the grocery store. I know, its seems like a stupid complaint, but I miss my marriage.

Last night,out at a potluck, with Mom sitting in between us, it seemed metaphoric for our life. Arnie taking Mom to the car, getting her out of her wheelchair, buckling her in and covering her with a blanket; it makes me love him more and miss him more. I hope there will be time for us. I hope we get through this next hurdle. I apologize for any sounds of whining or negativity. I am just trying, as usual, to figure out how to handle everything.