In Times Of Need

I've been going through a personal crisis recently, not realizing that Mom was lucid enough to understand what was going on.  But just like in past situations, Mom seems to come to her mind when she intuitively senses something is not right with me<though I try hard to hide it from her>  She looked so worried and troubled the other day.  I asked her what was wrong, not really thinking she would be able to express to me what she wanted to say.  But she said,"I want to know what is going on".  With as little detail as possible, I told her.  Her brow unfurrowed and a look of such compassion overcame her face, and she became the caregiver once again.  She got teary eyed and put her hand on mine.  The next day she had another stroke and though stable, I regained my role again as the  caregiver.

Isn't This My Funeral

A couple years ago:  ME- Who are you talking to, Mom?  MOM- These people are preparing for the funeral, and I'm telling them what to do.  ME- Who's funeral?  MOM- Well, this is my funeral isn't it?  Aren't I here in the casket?  I want one of my pink dresses to match the casket, but I don't have any shoes to match.  ME- You won't be needing shoes; your feet won't be showing.  MOM- Yes they will!  And I don't want my hands to show.  ME- Ok, Mom.  MOM- I want you to sing like you did at Dad's funeral.  ME-  I can't promise that, it might be too emotional for me.  MOM- Well then for sure, the girls.  ME-  I can't promise that either, but perhaps we can prerecord something and play it there.  MOM- Well, I guess, but I'd rather you do it in person.  ME- But this is not your funeral.  You're right here in your house, in your room, in your bed, and I'm right here with you.  MOM- Well, I'm ready to go; you know I have outlived my body.  I never thought I would live this long.  ME-  Maybe it's cause I needed you here, so how about staying a little longer.  MOM- I guess I don't have a choice, do I?  ME-  I love you Mom!

Slip Sliding Away

Mom has unintentionally figured out how to get out of her automatic lift recliner. She likes to feel things in her hands ( sheets, blankets, ribbons, cups, etc..) When she finds the remote, she fiddles with it and sometimes it lifts her up and out. Kind of like when a child inadvertantly makes a long distance phone call on the phone. Mom has slid out of the chair 3 times now. We're going to have to hide the controls. Luckily she hasn't gotten hurt so far. We can't seem to leave her even for a couple of minutes now. She's too weak to actually get up on her own from the chair or the bed, but she has almost rolled out of the bed recently. I just don't want to restrain her.
It seems that lately she has just gotten better enough to be more confused and restless. Don't know the reason for all this.

Where's the Halloween Party?

About 4 years ago this season,after getting mom settled in bed, I went up to watch a movie with Dave. About halfway through, I took a break to get a drink and check on Mom. The front door was cracked and someone was frantically knocking and ringing the doorbell. I reluctantly answered. A neighbor woman was pointing down the street and said they were coming home from a party and Mom was laying in the street. They had already called 911. Mom was in her nightgown, but carrying her day clothes and shoes. She had been 'showing the imaginary people where the party was'. She was bruised and scrapped all down her right side and xrays showed her right cheek to be broken. It was at that time we put guard locks on the inside of all the doors and didn't leave her alone day or night. My self or one of my daughters began sleeping in her room at night. Before that we had a monitor system set up, but she had made no noise at all during her 'escape'.

Potty Training for Caregivers

I haven't felt like blogging lately. Sometimes there's not a lot to say that isn't depressing, so I'm going to write about something funny, but inappropriate that Kinsey and I have to laugh about instead of cry about... not to offend you or dishonor Mom in anyway. It's the kind of manipulation that parents do with each other, when they don't want to do the changing diapers or potty training and such. You might think it's cruel, but not anymore cruel than talking about your baby's diapering. Last week Kinsey text me to say, " Did you have to pump Mimi full of laxatives right before my shift?! We had a huge explosion here!" I had to literally laugh out loud...for a long time...all day! I text back, "Well, if you would just give her a small stool softener every day on your shift, I wouldn't have to do that."

Early Signs

I've been thinking about early signs of Alzheimer's Disease. I'm trying to remember when Mom's first symptoms began to surface. I know it was at least 2 years before the diagnosis, probably more like 3. She had always been a perfectionist and had a place for everything and everything was in it's place and clean to a tee. Her sense of smell and hearing was always highly acute. She never seemed to have dreams or at least to remember them. Her driving was excellent. All these things began to slowly change. I attributed it to the stress and toll of caring for Dad's long term illness with Parkinson's Disease for 15 years. She started misplacing things more and more, forgetting names of well known loved ones, having vivid dreams that she thought were real, losing her sense of smell and her hearing was worsening as well. She started getting frightened and confused in the evening and thinking someone was trying to break in her house. She would hide her purse and then couldn't find it when it was time to go out. She talked about seeing deceased loved ones and other people she didn't know in the night that scared her. Her driving worsened and she would fall asleep while driving. she would confuse household items like the phone and the remote.
She said she could here people climbing on the house and trying to break in every night. She became incontinent early. She would get Dad's pills mixed up and hers.
Besides stress, we thought her other conditions or their medications might be causing side effects. She has HBP, Diabetes, Congestive heart, Pace Maker, Knee replaced, and all kinds of medicines to combat those.
But the diagnosis came 7 months after Dad past away on Dave's birthday July 11. Mom got the fateful call in February.

The Old Days

I saw this picture as I was trying to organize my albums online; and it got me reminiscing about mom, when I was growing up. She was around 46 here. She had already retired from teaching. She was quite a seamstress and tried to teach me to sew, but I was always a little intimidated by how good she was. She took Cindy and me that summer to Singer to take professional lessons. Cindy, of course excelled in the craft. Me - not so much. She also practiced the piano and organ every day because she played for the church. Our house was always filled with music...if not her playing, or me practicing vocal lessons and piano lessons(which she also tried to teach me, but finally sent me to teacher in which I didn't exactly excel in, either) we had the hi-fi playing LPs all day. I remember Alpert and the Tiajuana Brass, the Mills Brothers(no relation), Movie Soundtracks, all kinds of Christmas albums, Classical, Instrumental, Pop Orchestra, Symphonies, etc. She was always working on a new craft, making flowers, macrame pot hangers, ceramics, etc.. Mother was very social - a member of a Methodist Ladies Bible Study, a Baptist Ladies Bible Study, a Ladies Birthday Club, a Couples Bridge Club, but she was always there to take me and my friends to the movies, swimming, to the mall, or to wrap boys houses and then back the next day to clean it up. She always let me have my girlfriends over night anytime I wanted and got to have several slumber parties, til we started trying to sneak out to jump on the trampoline, throw water balloons, or wrap houses in the middle of the night. Mom gave such wise advise about friendships and boys, but of course, I didn't always think it was wise at the time. She never gossiped or said anything bad about anyone, and always told me "If you can't say anything nice about a person, don't say anything at all".
Well, this trip down memory lane has been so fun, but I better come back to the present now and reality. Til next post.

Kerri

I just got back from a little jaunt over to the Dallas area to visit friends. I stayed in a hotel and enjoyed the solitude I now come to appreciate more and more. After a lovely visit, I returned to the hotel too tired to find a place to eat and not having room service; I went down to the hotel Starbucks bar and ordered a personal pizza to take up to my room. While waiting, I sat there quietly watching the CNN news. A friendly, attractive, young women began chatting with me about current events. I asked her what she was doing here. She told me she was a bank auditor investigating banks' home forclosures. Her name was Kerri and she was 28, the same age as my youngest daughter, Kinsey. She had not married or had children yet. When she found out I was a full time caregiver to my mom who had Alzheimer's, she moved down 2 bar seats to sit right next to me, and began asking questions. I found out from her that she turned down a soccer scholarship to stay home and help her mom take care of her grandmother who had Alzheimer's for 10 yrs. Her mom was single and worked full time at an 8 to 5 job then came home and took care of her the rest of the time. Kerri stayed with her grandmother during the day except when nurses and aides were there. I realized there are so many sacrifices, families all over, are making for their loved ones. We talked long after the pizza was ready and became cold. I pray God blesses Kerri and her mother for their selfless care and sacrifices and all the other that they represent worldwide.

A Recent Day in the Life - from my viewpoint

7:30 AM - Yey, the nurse aide, Debbie is here! I get to stay in bed a little longer this morning. I love M-W-F. Ah, so nice! I'm glad Mom seems to like her; she always makes her smile. Except when she washes her hair; then Mom gets really mad. I wonder if Mom will eat anything today. If I can just get her to swallow a little something, I can get her laxative, stool softener, and BP medicine down.

9:00 AM - Uncle Bob's here. He set out the trash for us. She still remembers her brother. This reclining lift chair has lasted through Dad's Parkinson's Disease and 6 1/2 yrs of Mom's Alzheimer's Disease. It sure does save my back from lifting her to and from the wheelchair. She just seems to sleep all the time now. This is a good time to wash her soiled sheets and towels and clothes. I really enjoy doing laundry, especially with Gain. It makes the whole downstairs smell good. Ha, that sounds like a commercial. I guess I should get dressed and ready for the day. I don't know why I keep the TV on, she doesn't seem to know what's going on anymore, but I guess I can catch bits and pieces of Ellen, The View and Dr. Oz. Unless, of course, Davie's here. Then, it's Sesame Street and Dora The Explorer and working jigsaw puzzles all morning with Bob.

NOON - Guess I'll make tuna fish sandwiches for lunch. Bob and Mom really enjoy them. And I'll boil some extra eggs. She loves deviled eggs. Wow, she actually ate a half sandwich and a half egg, and drank a whole Dr. Pepper without any help!

1:00 PM - Back to the living room. Bob went down the street to get our mail for us. Oh, here's Nurse Denise. I hope she doesn't have to digitally clean out Mom's bowels again. I can't stand to watch Mom in pain and humiliation, but I need to hold her hand and be there with her. She pushes around Mom's tummy and Mom grimaces. Denise says there's a blockage again. Oh, dear God... I can't handle this! OK, yes I can.

2:00 PM- I'll just leave her in the bed awhile. It's time for her nap anyway. Thank goodness for this hospital bed. I'll just sit over here and catch up on Face Book, write in my journal, post a blog, or read a book. Maybe I'll take a nap. Mom was restless and scratching all night. They said it was because her kidneys aren't filtering out the toxins in her blood and she's not drinking enough liquid. Her urine is so dark and extremely odorous. I can't sleep. Oh well, it's time for The Doctor's Show, then Oprah. Oh man, what are we gonna do without Oprah?

6:00 PM- I'll just call in take out tonight. Mom likes pizza. Maybe she'll eat enough for me to get some Benadryl down for the itching. It seems like she forgets how to swallow in the evenings. She just holds it in her mouth til she either chokes or I get her to spit it out. She's lost so much weight this year. She's so weak she can't even balance herself to stand. She's just strong enough to swing her legs off the bed, but she can't even roll over on her own now.

8:00 PM- Time to unwind and de-stress. Think I'll soak in a hot bubble bath with a glass of wine, candles, and my music. I should try to watch a movie with Dave or practice some songs, but I'm just too tired. I can't wait til the weekend, so we can go to the lake house.

10:00 PM- I crawl in the bed next to Mom's. She looks right through me kind of frightened. I kiss her and stroke her hair. I love you, Mom. Wide awake! I should make a list for the grocery store and go tomorrow if Dave or Kinsey can stay with Mom. Oh yeah, and I need to get her car tuned up. Let's see... and call her dentist to let them know she can't come for her 6 month check and to take her off their list.

A Recent Day in the Life - from Mom's viewpoint

7:30am - Am I awake or amd I still dreaming. Where am I? Who is that girl in the bed next to me? She seems familiar... she's smiling; I guess I'm safe. I don't want to get up. I don't want her touching me. Why is she changing my underpants and cleaning me? I don't like that. I'm mad cause she's brushing my teeth and hair. It doesn't feel good. I can do this myself. They keep telling me I can't get up on my own or walk. I'll show them...Oh, maybe they're right. Where is she wheeling me to in this wheelchair. That band thing is squeezing my arm again. It hurts. She tells me to relax and not move. Now she's hurting me again by sticking my finger. Ouch! There's food and orange juice in front of me. I'm not hungry or thirsty.
9:00am Now, she's wheeling me into another room. This is not my house. What building am I in. When is Wilbur getting back? I wonder when Ken and Twyla are coming. Oh, there's Bob! How did he find me here? I'll just take a little nap. Kathi's trying to wake me up. She says lunch is ready. I'm too sleepy...not hungry. Who's making that racket in the kitchen? Why are they laughing? I'm trying to sleep in here. Waking up again. I need to go home. Where's my car? Why can't I get up? Oh, I'm in my classroom. Ok, kids line up for the program - pilgrims come in first...now the indians. Getting sleepy. The TV is on but I don't understand what's going on. Who's little children are those. Why doesn't Kathi make them be quite, they make me nervous. Kathi says they're my great grandchildren. Bob seems to really enjoy them. I've got to get to church to practice the piano and organ for the choir and I can't find my music. This is upsetting.
2:00pm - The nurse is here. She ask if I'm hurting anywhere. I'm trying to figure out where I hurt. I can't seem to express what's going on with my body. Wait, don't do that, It's uncomfortable and humiliating, especially with my daughter here, but I need someone to hold my hand. My tummy does feel better... but please don't do that again. Kathi says I should at least drink an Ensure, but nothing sounds tasty to me. Why can't I remember how to swallow? When I do, I just seem to get choked.
8:00pm - Kathi says it's time for bed. I don't want to stay here. I should go home. This is not my bedroom. I don't want to change. She's undressing me. I could do this myself if I wanted to. This is embarrassing. This is a comfortable bed, whose ever it is. So sleepy. Oh no, I dropped a needle. I've got to get this dress ready for Kristen for her pageant next week. So many ruffles. Who is my roommate, she's nice and this is a nice dorm. I just wish they wouldn't be so loud in the room over us and in the hall. Am I in the right bed? I wish she would turn off her light so I can sleep.

Snowball

The snowball is picking up speed downhill and getting bigger now. I remember last October thinking Mom might not make it til Christmas. She recovered somewhat from the frequent TIAs and what I believe to be small strokes from her high blood pressure. Then, I thought she might not celebrate her 83rd birthday in April, because she began having difficulty swallowing and was getting choked on food and even water. Looking back, now, I can see how much more she has deteriorated since. No longer able to walk, stand, or even balance by herself, speaking only a few words a day, her bodily functions are shutting down, and can't even swallow her meds. She has no appetite; not even thirsty. I feel the time is close. Maybe a few weeks, but not more than a couple of months...only God knows. Am I ready - no. Do I want her to drag out like this for a long time - no. I know she feels like her dignity is gone(I would). What is the right way to pray? "God please take her now?" Is that a selfish or selfless prayer? I only know what I would want in that situation, and what she has told me in many discussions through the years while watching and caring for my father during his long, painful journey with Parkinson's Disease. I'll just say, "God, have mercy"

Still Counting Blessings

After hearing a song called "Blessings" by Laura Story(if I was better at blogging I'd post it, but it IS on my FB status), I decided to try to count some more blessings.
1. I'm learning care giving, patience, perserverence, long-suffering, empathy, compassion, selflessness, unconditional love, and so much more.
2. I'm able to pay back Mom for taking care of me.
3. I'm learning that I haven't stopped learning.
4. The whole family is able to spend so much more time with Mom AND my Uncle Bob AND each other.
5. My children and grandchildren will have gotten to know their grandmother and great grandmother more than I ever was able to do. ( 4 generations in 1 home)
6. I have the priviledge to take care of my own Mom, like I did my own children (I didn't have to let someone else do it for me).
The song talks about "what if" the terrible tragedies or crisis or hurts of any kind where actually blessings we couldn't see. Keep opening my eyes, God. I'm looking real hard.

Holly

The Tuesday night Songwriters Association in Norman tonight was at Michaelangelo's. I sang a song Dave wrote just for me to sing about coming out in the world after being withdrawn for so many years. We had our music loving granddaughter with us. Dave explained how I had been a caregiver to my mother, etc... anyway, I botched it up a bit, because my precious Davie was wanting me to hold her and she wanted to sing with the microphone. Later a woman came over and introduced herself as Holly. She just had to put her husband in the nursing home. He has had dementia for 5 yrs. She's going through the grief stage right now, and has just started getting out some. I'm so glad to meet others out there that are dealing with this in their families as well. She invited me to a luncheon at MacFarland Methodist Church tomorrow for Alzheimers Support group,and suggested books to read. Thank you Holly, I look forward to talking with you more.

Blessing and Gratitude

It would be totally remiss and ungrateful if I didn't talk about how we have even been able to keep Mom in her home these years of her illness. If I said only by the grace of God, it wouldn't be true or fair for the millions of sons and daughters who take care of their parents without this particular blessing that I DO thank my Heavenly Father for; but I also thank the wise, prudent, and hard working efforts of my own earthly father as well, to save and provide for his family. It was years ago that he set up a trust fund for Mom, and also invested in long term health care, when he was first diagnosed with Parkinson's.
After Mom struggled with taking care of Dad for so long, and finally moved up here to Oklahoma so we could help ease the burden; she tried to make me promise to put her in a nursing home, should she ever get a long term illness such as what Dad had. She knew how taxing, physically and emotionally, it was. "I can't promise that, Mom...we'll do all we can do for you if that time ever comes."
We decided at the time of her diagnosis, to sell our house around the corner from her and move in with her, because she was comfortable and familiar with it, and it had an upstairs where we could have a semblance of privacy.
I realize this is a huge blessing and will always be grateful for my dad's financial wisdom and hard work his whole life and for thinking ahead for his family.

Now, Middle, Beginning, and End

I don't know where to start.  I sound like I'm in a therapist office.  The best place to begin would be the present, with flashbacks to the middle,  sometimes the beginning, then when we get to the end we'll know, right? 

     I could admit that my worst fear is getting this dreadful disease.  I've joked about having Alzheimers my whole life, because I'm bit of an absent minded professor<minus the professor part>.   Myself, loved ones, and I'm sure not so loved ones, have descibed me as somewhat ditzy, flighty, forgetful, spacey.  The names that come to mind are Captain of the Space Cadets, Airhead, Dumb Blonde< one reason for going red>, etc..  But after Dad suffered from Parkinson's Disease for at least 15 years and now Mom, I don't joke any more. 

     I remember sitting in the doctors' office with mom 6 1/2 years ago in February.  After seeing him that morning and taking a very expensive brain scan that insurance only covers after 6 months of diagnosed deteriorating symptoms, Dr. C had called after lunch and wanted me to bring her in to discuss the results.  Knowing what the diagnosis was already,  I pondered  the previous year -  We had taken her car keys away and had began to pick her up to go to church with us on Sunday mornings.  I did her weekly shopping and took her to weekly hair appointments.  I took her and My Uncle Bob( who lives next door) to lunch every day.  My Father had passed from his long struggle with PD in July.                                                               About every 20 minutes or so, I could hear Dr. C walk up to the door, get the folder out, pause. and then walk away.  I knew he dreaded telling us the news.  He had been our family doctor since the girls were in their single digits, and Mom and Dad's since they moved to Oklahoma from Texas ( so I could help Mom with Dad's illness).  Finally after all the other patients were gone, and hearing the same routine at the door, he came in.  He knew that I knew what was about to be spoken out loud.  After all the questions and information,  Mom ask him if she could hug him.  She knew it was probably as bad a day for him as it was for us.

She's Still My Mommy

She hasn't been my "Mommy" for years now.  The roles reversed some time ago.  The other night as she lay in bed, unbeknownst to any one in the household, she was aware enough of what was going on to be justifiably concerned.  "Are you alright?"  she asked me as I walked in the room getting ready to bed down in the bed beside her.  I told her it had just been a tough day for everyone.  "Are you sure you're OK?" she spoke with a very furrowed brow.  I tried to assure her everything would be fine in the morning after we all got some rest.  " I love you" she told me and reached out to hold my hand.  I bent down, kneeled at her side, and laid my head on her lap.  "Mommy,  your the best mother in the whole wide world...I love you, too".  As tears began to well up, I excused myself, went to the kitchen, poured myself a glass of wine and cried  for a long, long time - big, ugly, loud heaving and bawling...the kind that distorts your face, and rocks your whole body.  Later, I heard someone come in the garage door, so I quickly gained composure, and dried my tears just in time.  When I finally got to bed, mom and I lay in the dark.   I could tell she was still awake.  "Mommy?...would you mind if I crawl in bed with you and snuggle?"  "Of course not, honey, I'd love that".  She wrapped her arms around me and patted my shoulders, as I lay my head on her chest.  "Am I hurting your arm?" I asked.  "No, you stay as long as you like" she said with more vocabulary than she's had for months. 
     Lucidity gone, the next day she was very agitated, didn't know where she was, and wanted to "go home", as has been the" usual" for awhile now; but for the first time for Kinsey, she didn't know who she was all day and was very leery of her.

First blog; first blog post

Finally, with a lot of experimenting and trial and error, I'm ready to begin. I'll work out the kinks as I learn more about blogging, set up, pics, etc..

WARNING: Read at your own risk...this could be potentially boring or harmful to your Psyche.

This blog is mainly for my own mental health and therapy, but also a way to document our family's history, Mom's illness, and how I handle this time in my life.  If it is helpful to one other person, even by learning from my mistakes, then I'll be doubly grateful.