Mourning Morning

 

Putting together my notes, FaceBook posts, and Mom Book entries. One year ago today was this:

FaceBook post from 1/28/2017

Some of you know a bit about what’s happening with my Mom and the impact it’s having on me. I share this because I covet your prayers in coming weeks and months, if you think of it. Next week I’m going to TN to take her to doctor appointments as we try to get a diagnosis so that we can a) know what we’re facing and b) begin treatment of some kind, as her mental faculties and physical abilities fail her.

As I age I look back more with nostalgia, understanding, and love, rather than the loud anger and bitterness that once threatened (and at times overtook) my peace of mind and my generally happy and optimistic nature. I look forward with the same hope that has always spurred me, through gentle whispers, much of which I owe to my Mom. I am ashamed of many things in my past but it is exactly that- in my past, and I no longer live in fear of it. Now I face other giants; giants that aren’t mine so much as someone I love deeply and want so much to help.

I don’t know what we’re going to find next week, if anything. But I do know this. My Mom, who took in three desperate, pitiful little children, loved and raised them as her own, now needs me to help her. She is frightened and confused and so am I. I’ve told her no fewer than 20 times what day I’ll be there and that I have the schedule and addresses, etc, but she still asks me every day, many times in each conversation. Knowing I now need to be the strong one and stand for her, gives me strength I may not otherwise have. The tables turn and the adage “once an adult, twice a child” holds true.

She needs me and I need her. No matter our stormy past and arguments, years we were estranged (years of WASTED TIME- and WHY??!!!- mean things said and done, I don’t want to lose her in any way and knowing what may be coming in the near future is so frightening. Her body may stay here longer than her mind. Will she remember who I am? How long will she know me? Will she still love me? Will she be frightened of me? What if she’s alone and falls and no one finds her and she’s scared and no one comes?? How terrible the questions that cannot be answered.

My heart is breaking for her. Slowly. A little at a time. It’s like it’s being cut, shaved off, piece by piece. It’s excruciating and cannot be stopped. I ache to fix it and I know I can’t. I itch to explain to her and for her to remember what I say and I know that won’t happen. I know tomorrow we’ll have the same conversations all over again and she’s still be scared and confused the next minute.

I know many others have faced and are facing giants like this. I know we’re not the first or the only; it is even within our family. Perhaps the news we get in coming weeks will be better than I expect, and that low, deep dark, growl that’s in the background of my mind and causes my stomach to knot up and my heart to sink is just wrong. I pray so. But I pray for strength to face it, whatever the cause of that growl is; face it as biblical David faced his giant. I am so thankful for MY David, who is ever the voice of calm and reason, a strong and prayerful man of faith. I am blessed with a family who loves and friends who really care. I have so many blessings, and I am grateful for all. That doesn’t stop the pain but it does give some comfort.

I suppose there is some solace in expressing it. For me writing is best, as words often fail me verbally. I know this is long. I just needed to get it out. Sometimes it’s hard to click “Post,” isn’t it?

Much better days. Mom, my sister Teresa (left), brother Darwin, and me.

Today, 1/28/18, I look back on that day year ago in awe. I posted the above at 11:29am. Just hours later, at 6:35pm, Mom fell and sustained several injuries including two broken ribs, both sides of pelvis fractured in two places each, got stitches on her eyebrow, and spent ten days in the hospital. From there she went to a nursing home for therapies. I consider the morning of 1/28 as my Mourning Morning. The following week I’d put it together:

FB post 2/7/17 (initial diagnosis day). I spent most of last Saturday crying. My thoughts and prayers during that time were on Mom. David brought me food for lunch and supper, gave me hugs and quiet reassurances, and left me to my grief. It was exactly what I needed that day. I didn’t know that very evening I’d get a call that Mom had fallen and badly injured herself. I knew I was going to see Mom in a few days and I’d take her to some appointments, but didn’t know what was about to happen. Turns out that day of mourning was a God-send. His way of preparing me.

As I cried, prayed, and thought, I wrote on FaceBook about my fears. I ate my lunch even as tears fell down my cheeks. I stared at walls, the floor, a television that wasn’t on, the ceiling, all of it was blurred from tears. It simply didn’t stop for hours on end; at times silently and others big, deep, ugly sobbing on my knees. I wasn’t even certain all the reasons I was crying, and definitely didn’t know why I couldn’t stop, but I knew I couldn’t if I’d tried. I didn’t try, though. And finally, as I sat in dimming light and calm was washing over me, I got the call.

Mom needed me.

She’ll need me for a long time. And I intend to be there. The neurologist told us what we already knew but didn’t want to know. Regardless, hearing the words shocked me. Alzheimer’s had led to her mother’s death years ago, and another form of dementia has stricken her younger sister. The three of us (Mom, Darwin, and I) were quiet most of yesterday. Conversation returned more today as the “business” of all this continues, the mechanics of it, the logistics and planning, lots to do. In the middle of it all is the very personal of all this.

I started a “Mom book” last September. I keep it with me all the time in case Mom calls or I need to make a note of something for her. I intended the book to be for quips and quotes, memories, funny things Mom does and says. The last couple of weeks has been more about appointments and medical things than personal stories. But I will make a personal entry about this week as well. Here it is:

During the testing, the neurologist led Mom through a series of activities designed to test different areas of her brain. It was lengthy and some of it odd and seemed both rapid and random. I’d been thinking, “Dang I don’t think I could do this test.” Eventually he asked Mom to write a sentence, any sentence at all. Without hesitation she took the pen and paper, wrote a sentence and handed it back to him. He took the paper from her, read it, and busted out laughing- a good, genuine belly laugh. I said, “What does it say?” He showed me the paper. Mom had written, “This is nuts!”

Yeah, she’s still awesome.

 

 

New Year New ME

Along with my emotional and psychological goals I’ve set for myself this year, I’ve decided to eat cleaner and get fit again. For many years I was in great shape and I do so miss FEELING GOOD and strong physically. Now that I know about doTERRA essential oils, I have that support going for me too, so that is definitely a plus. I hardly ever get sick anymore and I used to catch every illness that was going around. I also had asthma, allergies, stomach/digestive problems, high blood pressure, extreme anxiety, and more. I’ve alleviated the need for medications except blood pressure, which I’m still scared to ween off, but I discussed with my doctor and she’s willing to help me as my numbers come down with exercise and better eating habits. I also still take Lexapro since becoming suicidal last summer/fall. I can not risk being in that bad shape again. I look forward to weening off that medication as well.

I started running again last November and had become too aggressive in my training, ramping up to 8 mile runs far too quickly, sustaining an injury to my left calf muscle. Now, halfway into January, in addition to strength training, I’m stepping DOWN the running from the treadmill to the elliptical, dropping the distance to about 5 miles per run.  I got the My Fitness Pal app and track my caloric & nutritional intake. The app has proven very beneficial because I’m more aware of what I’m stuffing into my face every day.

I got an Instant Pot to try to help motivate me to start cooking again. Last year’s Daily Drive Thru Extravaganza had a devastating impact on my waistline and all my blood work numbers skyrocketed. I’ve made a few things in the IP so far and they’ve been delicious and I know it’s a lot healthier knowing exactly what I’m putting in, nothing processed. It’s been nice getting back into the kitchen again; I do feel happy there. David had done all the cooking for the last few years, since I owned a store and was too tired when I was home to do ANYTHING. God bless my husband! 

To help keep me motivated in establishing my new-to-me-again fitness regimen and lifestyle, I entered a 3-month contest with doTERRA, called New Year New You. For this contest I had to submit VERY UNFLATTERING photos of myself along with the reasons I am entering, my goals, weight, and all measurements including my biceps and everything else! Talk about humiliating! UGH!! I was intrigued, though, that my right bicep is a full 2″ larger than my left. To me that is really gross and weird. My shoulders and arms have always been larger than what I consider normal, and it’s always bothered me. Even when I’m in good shape I’m still larger in my torso than what I think I should be, the dreaded “apple shape” figure. I feel my body is terribly disproportionate with small legs, no butt, and a HUGE torso. Oh how Mom loves to point that out to me, too. But I digress…

So, how am I going to achieve all this gloriousness?

Given my penchant for internet researching whatever has captured my interest at the time, I’ve been studying fitness schedules/training plans, clean eating, and continuing my essential oils education, which is an integral part of my daily life. Essential oils have been proven to have positive impact on people with dementia and other brain disorders, so I’ve tried a couple different diffuser blends in Mom’s diffuser in her studio apartment at the ALF (Assisted Living Facility). Honestly, I can tell no difference in her cognitive or emotional state while using the diffuser. I know she doesn’t always have it running, but I have to say I’ve been disappointed in that. However, I will keep trying different blends until I find one that at least helps with her behavior and mood.

In years past, I have always set goals for myself personally and they have always included home projects. This year, besides cleaning MYSELF up in every way, I must concentrate on PURGING. I have bins and bins of junk- in the home where we live now, our house in a different town (our daughter rents it from us), and, since selling my store and cleaning out my personal things from there, now a storage unit packed full of STUFF! It is far too much STUFF for any one person to own, it is a burden financially (paying for the storage unit- HOW DUMB!), and it is even burdensome on a psychological level. I do realize I have a problem with buying things- I LOVE TO BUY VINTAGE THINGS!!! I am at a point now, though, that buying things doesn’t make me happy even temporarily; in fact, it has the opposite effect on me anymore. I feel sad and overwhelmed when I buy. I feel best when I make things and give them away, so I shall do that more often, using as much of the things I already have, and hopefully making things on time for birthday and other gifts, perhaps selling some stuff along the way as well.

Do you have plans for a New Year, New You? 

Are You Wearing Panties?

Growing up as we did with our Mom and all her particular quirks and obsessions, certainly we kids were accustomed to certain odd things but time and distance have created a shock factor for me when those eccentricities rear their (weird) heads. Naturally as an adult I view them far differently than I did as a child. Mom has a lot of peeves including, but not limited to: “dirty” elbows. God help you if your elbows were naturally slightly darker than the skin of the rest of your arms because a scrub brush and bleach were sure to be in your near future. The shape of ears was distressing, anything being out of order or as hyper-organized as she requires, large and thick bath towels intolerable, unkempt hair or nails, wearing clothes two days in a row is apparently CRITICAL to do, wrinkles in any clothing or fabric of any kind including pajamas is an assault on all that is good and wholesome. Being on time or, God forbid, late paying a bill is a shameful character flaw. Our chores lists were endless and no chore was EVER completed satisfactorily. EVER.

Young girl pretending to be an army recruit while standing at attention. I can relate.              -military families learning network

Of course as children we did not really understand that there existed any other way of living. We did not know that all children were not required to line up for inspection each morning before school, to ensure elbows and ears and all body parts were clean, clothing was pressed and worn properly, shoes clean and polished (did you know you can polish tennis shoes?), and so on. It was the way we lived our lives so naturally it was our paradigm; the Gestalt of our lives as it were. Mom’s obsessive compulsions became our norm as we strived to please her. Indeed we were VERY CLEAN and tidy children, always on the ready for spot checks and room inspections.

Married and with children myself, for many years I had a full-time job and was busy living my own life, living hours away from Mom; thus, I was able to forget many of the stresses of our childhood, how anxiety-driven our days were, and the verbal and physical fights between our parents. Thankfully, time can have a way of softening experiences after all, if we choose to allow it. What has recently brought to mind many suppressed memories and emotions is being so heavily involved with Mom again, as her still-demanding and overbearing personality refused to acknowledge or even consider that I am now, at 48, an adult. To her I am still a minion, a soldier, with a mind to be shaped, behaviors to be formed, lessons to be taught, and we all know it is her way or the highway and don’t you forget it.

I was visiting Mom one day recently and she wanted to voice her grievances again to the head nurse of the memory care floor where she lives. We started down the hallway to the nurse’s office and Mom was walking behind me with her walker. In her ever-so-casual voice she says to me, “Sherri, are you wearing panties?” I stopped walking. I turned around and looked at her, wondering if she was joking but simultaneously knowing she was not.

“WHAT?” I asked. She repeated the question. I stood motionless as memories flooded over and through me, the sick feeling in my stomach almost instantaneous as she looked at me with contempt, awaiting my answer. “Yes. I am, Mom.” Her catty response, “No. You’re not. I can tell.” sent a wave of fury through me. I vividly imagined jumping in front of her, screaming, “I AM IN FACT WEARING PANTIES BUT EVEN IF I WEREN’T, WHAT BUSINESS IS IT OF YOURS AND WHAT THE HELL DIFFERENCE DOES IT MAKE TO ANYONE IN THE WORLD IF I’M WEARING PANTIES OR NOT??!” Instead, I calmly said, “Ok, Mom,” turned back around, and walked the rest of the way to the nurse’s office in silence. Mom has the luxury of no retribution for her inappropriate and nonsensical remarks. I do not.

Telling myself that “It’s not her, it’s the disease” doesn’t really fit because she has always been that way. Always analyzing, critically sizing up and verbalizing any and every perceived imperfection in others, especially her nuclear family. That is the kind of remark we grew up with- out of left field, bizarre- and we became accustomed to proving ourselves worthy of being in her presence. In a case such as this, the question of appropriate apparel being at hand, as a child I would have been required to zip open my pants to show her the underwear. As an adult, I zipped up my mouth and removed her face from my field of vision to keep from lashing out at her.

This morning I am drinking coffee, sitting in my pajamas, and I am going COMMANDO. Take THAT, Mom!

Looking Back and Looking Ahead: DAY TWO

I am glad I have my Mom Book where I journaled the experiences of dementia early on. We began Our Dementia Journey in early September, 2016. I began my Mom Book 9/21/16, and stopped in August 2017, having used other means of expressing my thoughts and the happenings with Mom. Today, January 2, 2018, I can say Mom sounded really good on the phone yesterday, happy and lucid. She seems to do better when I am NOT around her as often. I’ve been advised to shorten my visits with her, make them less frequent, and make sure there is a definite STOP TIME that is not set by me. e.g. about 30-45 min prior to dinnertime or an activity that will draw her away from her room to do something independent of me. I shall heed that advice, even though she seems clear right now. She is happier and certainly less angry when my visits are shorter and less frequent. I think my presence reminds her that she is no longer the independent woman she has always been and still desperately wants to be. I’d wanted so badly to spend time together doing things we both enjoy! We both love to sew and do crafts, so a couple months before Christmas I took Mom some Christmas craft books and sewing ideas, suggesting we do some activities together, make gifts, etc. She said she’d look at it but when I’d ask later she declined the idea, said she didn’t really feel like it and none of those things interested her.

It is unfortunate that now, after all these years of living apart, we live near each other and she either doesn’t remember how, or no longer wants to do many of the things we both enjoy. We still have a common love of going to movies and out to eat, so we can certainly do that when she is in a good mood and feels up to it physically. She tires so easily and we are both scared of her falling again.

From journal and FaceBook entries of the past year+, I find my typical inward struggle as I faced an unknown, the Big D, that has now become so entrenched in my life I have a hard time remembering BD (Before Dementia).

September 21, 2016 I made my first entry in my Mom Book. My younger brother, Darwin, and I were at Mom’s house while Mom was in the hospital due to a fall. We stayed several days and Darwin took care of some repairs around the house, I cooked and cleaned, tended to Mom. My entry this particular day ends with a OOMOM (Out Of the Mouth Of Mom): Darwin had the local fire department install special smoke detectors and put Mom in their database for a mobility issue so in the event of a fire they will go straight to her bedroom. Fire Dept batteries are good for 10 years. Darwin also unclogged drains, installed no-slip strips in shower, fixed handrail at side door, and more. Text from Darwin on this afternoon: “I told Mom about the tub issue. She went ahead & told me where the Soft Scrub was located. Sheesh.” HAHAHAHA!! That’s our Mom!

9/22/16 I returned home (Georgia). On the drive Mom’s long-time GP (General Practitioner) called me, raising the medical alarm and insisting Mom see a neurologist. I told him we’d been pushing for Mom to do that for some time and she’d refused. He said he’d been setting appointments for her and she would not show up, and when called, would state she had no knowledge of the appointments despite having received letters and phone calls to remind her. He said he’d been very concerned for Mom for a long time and at minimum she needs in-home care, possibly 24 hrs a day. Said he sees signs of Lewy Body dementia and Parkinsons dementia.  We planned a referral to neurologist at her next GP appt.

11/15/16 I had a long talk with Mom on the phone. I remember it very clearly- I was in my bedroom and pacing from there to the master bath as we spoke, at times lying on my bed staring at the ceiling. Incredibly, my concern for Mom was echoed by her and it was both a relief and even more distressing as she told me she knows something is very wrong with her. She was so scared to find out what it is, having experienced dementia with her own mother. I encouraged her to find out and told her that Darwin and I would be there with her for support, and that we will do everything we can to help her. I told her that we need to know what we’re dealing with so we can plan and that there are medications that can slow dementia, if that’s what it is.

It was after this phone call that we began speaking weekly, instead of every other week. In subsequent calls and visits, Mom indicated signs of paranoia, extreme anxiety, confusion, and the falls continued to increase. At one point she’d fallen in the front yard on a Saturday and it was very cold out. She could not get up and doesn’t know how long she lay out there until some Mormons happened by and helped her into the house, staying with her and making sure she was ok. I thank God for those young men and early in 2017 I was glad I had the opportunity to thank them in person and give them a hug. I was driving the 5-hr each way trip at least every other week, staying a few nights, and coming home. At times Mom would come with me and stay with us, but there were problems with that, as I owned a store and would spend time cleaning up urine and feces, and helping Mom before going to work long days in my store, where my thoughts were less and less on the store, and more and more on Mom. I learned I do not have the stomach for cleaning another person’s diarrhea, especially when it was on my kitchen floor. I wondered if the smell of poo would ever leave my nostrils.

During those months and several months prior, Mom would tell me she feels scared a lot, not safe, shaking inside and outside, experiencing extreme fatigue, and short of breath, and how uncomfortable she was living alone, she fell several times in her house. She frequently complained to friends and family that she was scared and could she spend the night with them or could they spend the night with her. She believed someone was watching her from outside her house and that she met a “new friend” at the doctor’s office and asked her to write checks for her. It was after that admission and looking through her checkbook I found other people’s handwriting in her checkbook and began taking over paying her bills. I began getting more information from Mom’s friends. One friend and her husband had found Mom in her living room floor one day when she hadn’t shown up for dinner. She’d fallen hours earlier and could not get up.

Over time our calls had changed from bi-weekly to weekly, to daily or every other day.  Darwin and I met at Mom’s several times as she was in and out of hospital (injuries from falls) and he took care of getting the handicap hangtag for Mom’s car as well as renewing her plates, and a host of other things as I tended to Mom and doctor appts, cooking, etc. At times Mom would come stay with me at my house and I would stay with her in TN. Darwin, an EMT, organized Mom’s meds which had been terribly mixed up, and we spoke with the doctor about streamlining them. She went from 16 prescriptions to 8!

All this time, Mom’s blood work and all tests were “normal,” not deficient in anything other than Vitamin B. Late January I began researching in-home care options and even some Senior Living. By the end of January, Mom’s confusion was at an all-time high. She could not remember ANYTHING, short-term or long-term. She called me daily wondering where I was and why I didn’t show up to take her to doctor appts, etc., not realizing she didn’t have any appts when I wasn’t with her.

Given the state I was in most of 2017,  I know I must make lifestyle changes or I will not survive Mom’s disease, either. I must establish boundaries with her and take care of myself as well as fulfilling my responsibilities to her care. After a two year hiatus (does that word even apply when the time span in question is YEARS?), I started running again last fall and now that it is a new year, I have begun a circuit strength and cardio physical training program. I am also more cognizant of my food intake- caloric and other nutritional values, and began a meditative program and yoga for relaxation and stress reduction. I use doTERRA essential oils for aromatherapy and as health aids and want to get rid of my remaining prescriptions over time, replacing them with oils. As Mom so lovingly points out to me, though, I “never finish anything. You’re always starting things and never finishing them.” Harsh as it is, there is truth to that statement and I do in fact feel I am a complete failure at anything and everything I’ve ever attempted. However, I do not want to and will not enter into this new year with a defeatist attitude. I need to be realistic but I don’t want to be defeatist. Putting to rest the nagging accusations in my mind will go right alongside all these other things I am attempting. As of today, Tuesday, January 2, 2018, I’m doing pretty well with my new lifestyle. DAY TWO.