Tuesday, December 3, 2013

The hardest part...of Alzheimer's stealing your loved one.

People all the time, express their sympathy when I tell them Mom does not remember me or who I am. I honestly could care less...most days she likes me and I remember who I am and who she was. Today was a hard day. I had recently commented that we did not often have to deal with the aggression that she had in the beginning of our journey. Life seems simple when she is even tempered. Today was NOT that day. She was agitated and pulling stuff off every surface she could reach. When a child is learning to "explore" their environment, it is frustrating but encouraging that they are learning and will stop the destruction soon enough. We don't have that to look forward to. A 6' 75 year old 180# woman is not cute dumping everything off the shelves. But I digress...the hardest part is the topic.

Mom was sitting in her chair and had her baby doll on her lap...trying to pull one arm off. I thought to ask Beth(15) to get her a cup of water. Beth tried our usual bait and switch..."here's a cup of water, can I have the baby?" Mom was not going for it so Beth put the cup in her hand...since she was miffed, she spilled the water on her blanket. Beth got the doll and turned to put it on the bed when Mom flung the big glass of water at her back...ARGH! Carpet wet, bed wet but worst...poor Beth soaked. My dear Mother would have been horrified if she knew what her ALZ personality has done to her darling grandchildren. None of them has escaped her alter-ego. She has slapped, kicked, pushed, cursed, etc. all of us. As a Mother there is not any thing else that makes me so mad and sad. AND as soon as it happens, it is over for her...no memory of what has just happened. I pray that our memories of these times will fade too.

Tomorrow my Mother will be 75 years old. She will not understand but we will buy a nice cake(which she WILL enjoy!). We will sing "Happy Birthday to You" and "Happy Birthday, Happy Birthday, Happy Birthday to You!"(our family birthday song) We will all give her a HUG and tell her we love her. We will celebrate the woman she was before ALZ began taking her away. We will celebrate Memaw Peggy! Happy Birthday Momma! I love you.

Tuesday, August 6, 2013

June 28th, 2012 Ten Day Anniversary of Daddy's Death...another flash back post

This post was from June 28, 2012…Ten days after Daddy’s death:

Tonight Mom stayed in the house with Jon, Ben, Brett, Christine and Elizabeth while Katy and I ran some LATE errands. We did not return until 10:30 pm and she had done fine and seemed to enjoy the visiting. Jon ran the vacuum which would usually really bother her but it did not faze her. She did not want to go back to the apartment with me…Jon had to come in for a bit and then escape out. She was frustrated and tried to get a “spin” going but I stayed calm and asked her how I could help. I sang all of our Jesus songs to her several times and got in bed. She sat on the end of her bed in the dark rocking back and forth.

When I asked again if she was ready for bed, she said “let me get my Daddy”…she went and turned the light on in the bathroom, opened the medicine cabinet and began to talk to Daddy…”are you finished with your work…can you come here with us…just for a bit so we can tell each other that we love each other…you can use these things (pointing to his deodorant and colognes) come on.” She asked me if it was OK for him to come and stay. I told her of course I would love for him to come and stay. (while I am typing, she has come and made me come into the bathroom with her to talk to him) She seems to think I can make him come. We talked in the mirror to him. She showed me to him and told him to hurry and come so we could get finished…? I asked her if he liked me and she said “I don’t know.” I told her to tell him I loved him. “Tell him Jane loves him” so she mouthed JANE LOVES YOU into the mirror. I asked her if he talked to her and she said “Yes we have talks and talks.” I told her I knew what he would say to her…”I love you!”

I asked if she thought he wanted us to go to bed and he’d come then? (guess my mind is on sleep 1 am now) She told me no.
She’s in bathroom talking to the mirror while I type. It is very interesting. Wish I had a video camera to get this recorded. She’s talking so quietly that I can’t tell what she’s saying now. She just shut the door…”excuse me friends, I’m needing this” door shut and she’s talking to him still? I snuck over there to see what was up. She went pee all the time talking to him. And then opened the door, came out and is now back talking to him. She will not drink her sleepy tea…”I don’t need that!” I don’t tell her it is sleepy tea…just that we need to have a drink…no way. Just asked her if there was anything I could help her with and she said in a curt voice that I’ve heard many times “we’re fine…THANK YOU! “ This is the voice she would use when she decided I was the “other woman”…now we’ve been talking to him for over 30 minutes. Wondering if I can lay in bed and rest or if I should sit up?!? I may need the power to go out to get it dark.

My guess is that even though she can’t verbalize the longing for him, her spirit knows he is gone and their spirits are visiting. I’ve never been this close to death and the spirit world…makes me think all kinds of new thoughts.

She continued to talk to him. I finally got up and turned off the light by the chairs and got in bed. I would ask her if it was time for bed. “I’m so tired…need to sleep and we will go in the morning.” She stayed in bathroom until I got in bed. Then she turned off the light and closed the door. Then she opened it and talked to him back and forth 6 times. I thought to get in her bed and ask her to come to me. She did come and get in bed. Really fussing and checking the covers…being sure I was covered. I held her hand near me and she stroked my hair and face over and over. After about 5 minutes she said “come here dear” and put her arm out for me to lay my head on. I did and she patted my back with her other arm and said “It will be OK.”

Funny…that is how I held my kids when we snuggled together. I drifted off to sleep and so did she. Each time I woke up, she was quiet and still so I stayed with her on her bed. (I do not usually sleep with her as she typically touches me and talks all night when I stay that close)

*Side note: The first time Mom kept Beth here overnight when Brett and I went for our anniversary…Beth was still addicted to “the arm.” She would not nap nor sleep at bedtime without my arm under her head and wrapped around her back…comes from me ALWAYS holding her that way. She was the ONLY one of the children who I did that with…no one else was attached to anything but nursing. Anyway the next day when I got home she acted like I had greatly offended her by taking “the arm” away from her for the night. When I asked her if she had slept on Me Maw’s arm she said “Yes but it was TOO fluffy!” HA! I think Beth was almost 3 when this happened. (Aug. 5, 2001)

Thursday, August 1, 2013

A day in my life!

Hubby, me and Gals 3 are headed off for a few days for a break and to celebrate our 34th anniversary...so our young men and the sitter and a sweet friend will be caring for Mom. I needed to itemize the schedule for the caregivers and decided to share it here. The day begins when Mom wakes up so there are NO set times only the activities that must occur.

Mom wakes up***RED ALERT***the day has begun. She will be soaked so remove her gown and pull-up pants(just tear along the sides and toss it on bed pad on bed). Open vanity mirror so she will not see the "stranger" in the bathroom. You will have to do this each time you want her to go in bathroom...otherwise she thinks someone is already in there. Encourage her to go into bathroom and step up into shower(turn nozzle to wall and turn on to a little right of center). Get her bath sponge and put on shower gel. Wash her gently top to bottom, front and back...be sure to get under her belly. Wash hair with tear-free baby shampoo as she does not remember to close her eyes anymore. Rinse well...be sure to get under her arms and belly. Her towel hangs to the right of the mirror. Be sure to dry under her tummy.

Pull-ups are in the cabinet to the left of the potty...bottom drawer. Put a pad into the pull-up and ask her to lift her feet to step into it. IF she won't do this, you will need to get her to sit down on side of bed and put it on her. All of this time, I keep her blocked from leaving that area. Put her house dress over her head and she's dressed! She usually goes barefoot in the house. Her glasses will be on the window ledge to the right of her bed.

Breakfast can be large bowl of cereal with liquid yogurt, 2 packages of oatmeal or waffles...you can add bacon to any meal. O.J. or prune juice for drink. She often eats with her hands but can sometimes still use a spoon. After breakfast she enjoys having the music on and sitting in her chair or walking back and forth. Open curtains and blinds.

Pick up wet bed pad and pull-up and put in closed trashcan in bathroom. Take sheets off of bed and put outside in the pink hamper. Spray plastic bed sheet with OdoBan and wipe with Clorox wipes. Let air dry. Do not make the bed until the afternoon. Sets of sheets are in left door of wardrobe.

Usually our morning is spent with gals coming out to do school. While we do laundry and get meals going in the big house. Of course Christine runs out to do all the outside animals(4 horses and 14 chickens) and Beth does the dogs(4) and cats. You can try a restroom break but she doesn't remember how or why to sit on the potty now. I usually change her pants one time during the day if needed and before bedtime.

Lunch time Mom can have PB and J(she LOVES) or leftovers from yesterday's dinner or Taco Bell(beefy bean burrito)or ??? She is not picky but without her teeth, you may need to cut it up.

During afternoon, laundry folding, dinner prep, make her bed...put bed pad on and tuck in foot of sheet, listen to music(her favs are Lift Him Up-Ron Kenoly, The Mamas and the Papas, Carmen). My time for paying bills, making calls, cleaning apartment or big house.

Dinner is whatever we eat cut up or if we are gone she can have a TV dinner with fruit from the pantry. I usually leave something out for her to snack on. She cannot tell you when she is hungry but if not carefully watched, she will put odd things in her mouth. When the sun is going down and it is cooler, she can get on shoes and go outside to walk. The gates must remain locked at all times. She will typically walk to the pasture gate first. She does not remember where to come back so I call her name over and over to help her get back to the house.

After dinner as the sun is going down, all the animals have to be fed AGAIN. The chickens must be put up in their enclosed building or the raccoon will eat one for her dinner!

During the evening she will get agitated and walk more around the house. She often moves things, folds stuff and fidgets. I keep the lights on brightly until I am ready for her to go to bed. Sometimes she will hold her baby doll and rock in chair. Go around the house and close the mini-blinds and curtains. At 8 pm, pour a bottle of NeuroSleep in a glass and add 5 drops of Deep Sleep. Tell her "Here is your juice!" Be sure she drinks it all up. Sometime between 9 and 10 you can try to get her to go to bathroom and change her pants. She wears her house dress to bed. I put small blanket on the bed on her feet. I kiss her on the forehead and tell her "I LOVE YOU!"..."have sweet dreams" and quickly take her glasses off. Put them in the window sill on top of the curtain. Unplug coffee water pot, toaster oven and microwave. All lights off or she will not go to sleep or stay in bed. Wedge the wooden rocker between bed and china hutch so if she gets up during the night, you will hear her.

Fall exhausted into bed and PRAY she sleeps...insert ear plugs. IF she is "singing" and will not stop, put the QUIETUDE CD in the player on low volume. PUSH the Mode button twice and it will play repeatedly. IF she wakes you in the middle of the night, put on that CD and let it run. She sometimes starts singing 2am-4am...if music is playing, she will usually stay in bed. If she talks out at night, do not talk to her. She will resettle but if you talk to her, she will get up to locate your voice. Wake up times vary greatly.

WELL THERE IT IS! An at-home day with Mom. I've not included taking care of my family or any outings...makes me too tired to think of all that...ha!

Friday, July 26, 2013

Looking back to June 18, 2012...Saddest Day

This is a letter I sent to family and friends after Daddy died:

Yesterday was a very sad day for all of us here...Daddy went to run errands in the afternoon and came home not feeling well.(very odd because he has always been the picture of health) Thankfully Brett was already home from work and he came out into the apartment with me to see what was up....Dad's blood sugar was very high, he was sweating and having trouble breathing...we asked if he wanted to go to the hospital and he said no he needed to restroom. Brett helped him and he vomited what he had eaten and then said he felt better. (We thought maybe he had food poisoning) He wanted to lie down but each time he reclined, he could not get enough oxygen. I asked again if I should call the ambulance and he said "yes we better check this out." I quickly called...while awaiting he was sitting on the bedside...Brett in front and me to the left side. A policeman arrived and said the ambulance had to drive from a neighboring town (10 miles) but would be here quickly. As we waited, we told Daddy how much we loved him...what an awesome man he was...I sang "Jesus, Jesus, Jesus…there’s just something about that name" to him...and I told him in my head that if he could see the light, to run to it. And he did...we were holding him up as he quietly and quickly ran home to Jesus.

We have SO much to be thankful for...

He lived his life with honor and integrity...loving every person he met. He has the BEST smile of any I've ever seen!

He loved Mom with every inch of his being...devoted and faithful for 55 years.

His PhD is in family and home...he was not distracted by sports or hobbies. He worked hard to provide for us and was home loving us when not working.

Thankful for every day he shared with us here at Sonshine Acres!

SO thankful that he did not go HOME last week when we were gone on vacation.

Praising God that He allowed Brett and me to walk with him to the gates of heaven.

Thankful that he did death like he lived life...gracefully! If you know my Daddy, you know there was not one bit of drama in him. True and steady!

PS---The lead EMS man thought it was a massive heart attack from what little he saw. Mom does not understand much at this point of her Alz. We took her into the apartment after he was gone and she didn't seem to recognize him. We will be staying with her in the apartment for the near future and seeing what our new life looks like. God knows right where we are and He knows what we need...GOD IS FAITHFUL!!

Additional notes 6/23/12: After more research and talking to Dad’s Dr. we know his symptoms and the suddenness pointed more to a pulmonary embolism. He came in from running errands and was gone in less than 30 minutes.

Where have I been?

I ordered some new books! I LOVE to read but have not been doing it for a long time. My current read is "Mothering Mother" by Carol O'Dell. If you are in the trenches, caring for an Alzheimer's patient, it is a MUST read. I read to my gals as we travel in the car. I am not driving much anymore as K and C both are. I sneak in reading parts alone when I can. She writes short snippets of life with her Mother. I was charmed by the title...it made me remember how much I LOVED mothering my 7 children. AND it made me think about how I could transfer that to my experience now of caring for Mom as she UN-ages. She is now in the 2-3 year old range.

The book also made me think about how much I used to enjoy writing. I have dreamed of writing a book someday...just never thought I knew something anyone else would want to read about. So now I am back as times allows.

Since my previous post in 2010 several life-changers have occurred. First I was involved in a horse accident that resulted in many broken ribs. Suddenly, I was incapacitated and of no help to anyone for months. We quickly had a five foot high fence built around 1 acre at the back of our home. We hated the idea of being fenced in but Momma was running off up to 5 times a day and I couldn't help at all. Our "LOCK DOWN" unit has been a life and mind saver. Mom can go out her back door and walk around or come into my back door without the possibility of "escaping". We had to get used to locking and unlocking to get to the driveway or into the side and pasture gates but the safety and freedom for Mom has made it more than worth it. We have a lock on the driveway gate with letters set to L-O-R-D for fast entry and exit...the livestock gates are keyed locks.

We have only lost her once since the fence was installed. One day she was outside and I was out front working. I thought I'd not seen her at the gate in a few minutes. I asked everyone if they had seen her and no one had. RED ALERT! We all started looking...the only possible way for her to get out would have been to go through the barn into pasture and climb through livestock fencing. The minutes dragged as we searched everywhere. I grabbed my phone to dial 9-1-1 when one of the gals screamed "Here she is!" She had gotten into one of Jon's parts cars and rolled the window down. Her hands were securely on the wheel at 10 and 2...I feel sure she was driving home to "OKLAHOMA" ;)

The other life-changer was Daddy heading home to Heaven unexpectedly in June 2012. I wrote every night after he died and will cut and paste some of that in another post. We miss him so! I immediately moved into the apartment with Momma. It was a crazy time of trying to grieve as I learned all I needed to know about Mom's care and still be a wife and Mom somehow. GOD IS FAITHFUL! I tell people all the time that God has been faithful to provide ideas and encouragement each time we need it. We are on a hard part of our journey.

Now you can understand why I've been missing in action. I didn't want you to think it was the "soap operas and bon-bons" thing!!!

Thursday, July 25, 2013

For the Love of God

In my earliest memories as a child there is Mom singing about Jesus. I imagine that Mom has always known him, growing up in a family with strong faith. As an only child, Mom was lonely and needed a friend to be with her. She didn't have to go far to find her pretend best friend. His name was...Jesus! She sat a seat for him at the dinner table. They played dolls in the living room. She held the door open for him as they ran out to play. He went with her EVERYWHERE. Her Mother eventually became irritated by his presence at all times but she really couldn't get angry since it was Jesus!

Now He is here with us again...usually in songs. Mom doesn't sing anymore as she has lost her words. Her strong, lovely alto voice bellows out notes with no words. I had told a friend she was humming incessantly for most of the day and often far into the night. When she sat with her one day, she informed me that it was not humming..."you can't hum that loudly!" Her song of choice is "Jesus, Jesus, Precious Jesus. Oh by faith to trust Him more"...her mind is stuck on that phrase of notes and repeats it over and over, faster and faster, louder and louder.

It begins early in the morning and continues throughout the day and into the night. When she wakes during the night she begins again. There are NO earplugs that block the sound. One day I was telling Maggie about it and she said, "Ms. Jane you need to get some DUCT Tape"...as I had a visual of Mom's mouth taped shut, I giggled and said that wouldn't be very nice . She quickly revealed her idea "You can put one pillow on each side of your head and tape them on" HA!

I've learned to tune the music out much of the time. I can sometimes interrupt it by playing a CD and at least get her to change tunes as the CD plays. It can become nerve wracking to hear the same notes for a large part of the day. But it could be so much worse...she could be tone deaf or I often think what it would be like without Jesus as her main squeeze. She could be serenading us with "99 bottles of beer on the wall, 99 bottles of beer, take one down and pass it around, 99 bottles of beer on the wall!"