Happy New Year 2010

Yesterday I picked my mom up at 2:30 like I do every weekday; just like one would do for a child who attends school.  My mom, she believes she goes to school.  Sometimes she thinks it's stupid and declares upon awaking, "I'm staying home today."

Guess again Ma.  I help her get ready and off she goes, giving me several hours of perceived freedom.

Whenever I arrived, there sat my mom with her party hat.  She was a bit grumpy looking, she was ready to go.  She was upset that she couldn't eat the snacks, goldfish crackers.

She came home with a new scarf, a scarf that one of the Care Attendants gave her.  My mom loves scarves.

Yesterday, the Day Program had their little party for the attendants, my mom seemed to enjoy herself, right up to the end when she couldn't have the crackers because they have ingredients we don't eat.  Wheat gluten being top of the list, it causes explosive shits that I end up cleaning.  I'll do everything that I can to stop feces from flying free in my home.

My mom had potato and corn with her lunch yesterday, 2 foods that we avoid and haven't eaten in a long time.  My mom was a bit more agitated yesterday afternoon, right up until the time she went to bed.  I won't allow potato and corn in her diet, not as long as she lives with me because it makes caring for her impossible; behaviors where she lashes out at me, angry for her losing control over her life.

Here's a picture of what my mom looked like when I walked in yesterday to pick her up.

Happy New Year!
Ma at the Day Program
2010

Routines are Nice

Mom wearing her new coat
She LOVES purple.

I'm grateful to have the holiday behind us so that we can all settle into my mom's new routine; "school" 5 days a week and a daily visit from her Home Care Attendant.

My mom loves the Day Program that she attends, the people there are her friends.  Real people and real friends.  It's enjoyable to talk about real people with her.  It was awhile before I realized that she was telling me about real people and not hallucinations.  Every day she was upset when I picked her up.  It was difficult for her to express herself and my guessing was way off.

Since my mom started to eat lunch with all of her friends, the same lunch that is served to all the participants of the day program, she has been in a better mood.  I pick her up and she's in a good mood.  I especially love it when she turns and waves to all of her friends like she's royalty.  "Let me see my friends.  Goodbye, I'll see you tomorrow!"

Avoiding wheat is a very good idea, not just because it triggers awful behaviors, it also causes my mom to have gastrointestinal explosions that leave a nasty mess for me and or the Care Attendant to clean.  I think the women at my mom's Day Program understand why we avoid wheat; nothing like a lesson learned through experience.

We're into a new routine.  My mom likes Martha, her van driver that picks her up Tuesday through Thursday at 7 AM.  Today is Thursday, I'm counting down the minutes as though it is New Year's Eve and a new year will begin.  Every day that my mom leaves at the crack of dawn beckons feelings of elation, time to myself.  Time to accomplish my long lists of tasks.  I am feeling better about life, it's not so oppressive as long as I feel like I'm moving forward.  Today, I feel like I'm making progress.

For any readers wondering about the pill swallowing issue... we solved the problem.  Our Naturopath Doctor mixed her up a batch of herbal extract liquid that lowers her blood pressure.  She swallows the liquid and takes a teaspoon of raw honey as a chaser.  Our lives are less stressful, she remembers how to drink out of her blue shot glass.

The cognition powder that we got for her can't be heated so I can't hide it in her oatmeal.  My mom's not a fan of fruit smoothies.  My current mission is to figure out how to mix the Brain Powder into something that my mom won't mind eating every day.   The powder doesn't dissolve and is a bit gritty.  Yogurt?  Honey?  Apple Sauce?   I'll let you know what works.

I'm enjoying the routine and every day is getting better and better because of it.

Routines are nice.

The Next Generation

The Children in my life... meet the next generation

My Great Nephew, Lil'Guns

My Great Nephew opening his Monkey Pack

Lil'Guns trying on his Monkey Pack

Off to check it out in a mirror

Uncle Al's Lil'Princess

Our Lil'  Princess with her new baby doll that talks

Brian teaching Lil'Princess how to play the Djembe

"I love it!  I was hoping for one of these."

Lil' Cuz

Lil' Cuz... so very cute

Lil' Cuz' 2nd Birthday
Mmmmm Cake!

A cute little lion cub

Christmas and Dementia

Me, Ma and Jay
Christmas 2010

I have noticed more and more that when we have a family party, my mom becomes disoriented.  Having people in the house makes her want to "go home."  She looks for exits that exist only in her mind.  Not being able to find the extra rooms tends to upset her leaving her with the same question, "Tell me something, what happened to the door that was right there!"

The Christmas holiday has come and gone, our lives are back to our Lewy Bodies Dementia normal; hallucinations, fluctuating cognition and lots of shit to clean off floors and carpets.  My mom even gave me a gift of a shit trail that she stepped in on Christmas day, moments before we were to leave for our Christmas Dinner with my brother and sister-in-law.  I cried.

Every day we seem to have some mishap with feces, not pleasant at all, especially for someone like me who gags at the thought of all things gross.  Yesterday, I had a huge trail to clean up because my mom refuses to keep her diaper on; she believes that she can hold it until she reaches the toilet, she can't.

My mom is having trouble facing the fact that she needs to keep a diaper on at all times because she can't control her bowels.  I know it upsets her to crap all over the place, she even told me to leave it and "someone" would come and clean it up.  I am that someone.

Christmas was a nice holiday, unfortunately it was overshadowed with lots of human feces that needed to be cleaned up before any guests arrived at our home for a little family gathering.  Looking for the bright side, all the poop cleaning did keep me from eating all the delicious and fattening foods that ladened the table.  I didn't gain too much weight this Christmas, yay!

"I love it!  I was hoping for one of these!!!"

Family did come to the house on Christmas Eve, it was fun to give my little 4 year old cousin gifts.  She was so funny and full of the spirit of Christmas that it was easy to get caught up in the holiday festivities.

My mom was nervous around her Great Niece, she always is around little kids lately.   Nikki was scared around my mom, just as she is around Uncle Al, her Grampy.  Neither of these seniors can interact with people, no wonder she is so frightened when they reach out to her.  However, my mom did enjoy watching her open her gifts, especially the new baby doll that talked.

Christmas and dementia are stressful.  It makes me wonder if it's a good idea to have family gatherings because it appears to confuse my mom.

I remember a couple of years ago how Uncle Al would clam up and sit lethargic in a chair when we had him over the house for a party.  Through my observations, too much stimulation like that of a family party with lots of people brings on dementia episodes.

This could be our mom's last Christmas at home with us.  I don't know what the year will bring but I do know that this is the year that my mom will go to a nursing facility.  Care Giving for her has crossed a line that I never wanted to cross, cleaning up feces that came out of my mom's ass.  I pray for strength every day that I can keep caring for her until a bed opens in one of the nicer homes that I have her on wait lists.

In the meantime, we do have lots of nice memories with family, memories that will one day help all of us survivors laugh and laugh.

Donna, Patricia, Ma and Jay
Christmas 2010

A Walk In Care Giver Shoes

Maryann and Me... together again
Thanksgiving 2010

Several years ago, I remember a conversation that I had with Maryann.  The call didn't go very well, it ended where I said something that pissed her off... we didn't speak again for several years, this year is the first time we spoke.

Maryann, she was Uncle Al's Care Giver.  Uncle Al has Lewy Bodies Dementia, only we didn't know it's what he has until my mom began having symptoms, vivid hallucinations and fluctuating cognition, the tell tale signs.

Looking back, Maryann was burned out, just like I am these days.  She just had her little baby and Uncle Al was her 80 year old toddler who was not growing but declining.  The horror she must have experienced, alone with her new husband, new baby and a dad who believed that he could do way more than he was capable.  I'm living this nightmare.

I wasn't a very good friend when Maryann was going through this tough time with her dad, I was too busy to stop my life for five minutes to listen to her cries for help.  All she needed was for me to listen and help her with her dad.

Maryann needed my time, but I was like an ostrich, head in the sand as I turned a deaf ear.  Instead, I fought with her, I made it harder for her to cope with her situation.  I was ignorant to Uncle Al's illness and Maryann's pain; not a good excuse.  I was self absorbed.

I said words that cut her like a knife, words that I wish I could now take back.  However, like our Uncle Auggie always told my mom, "be careful the words that you use because you can never take them back."  Advice I have difficulty remembering even today; is there hope for me yet?

Uncle Al ended up in a nursing home.  I was angry.  I asked questions, "Why didn't she tell me?!"  I visited     Uncle Al with my fiancée.  I cried.  Uncle Al sang "You Are My Sunshine" to me and I cried.  The home he lived, in my opinion, was the saddest place on Earth.  I visited a lot.

My life turned upside down.  I lost my job and was faced with selling my house during a time when the housing market was about to implode.  I got married.  Moved my mom in with my new husband and mother-in-law, a MIL that hated me.  My mom, she lost her mind and I lost my freedom.  I slowly began to drown in the sadness, the weight of the world on my shoulders made life difficult to cope.  Like Maryann, I needed my family.  Like Maryann, my cries went unanswered.  I became angry with my family, very angry.  I felt abandoned.

I tried on the Care Giver shoes, I began to walk in them... I couldn't take them off.  I felt like Dorothy in the "Wizard of Oz", she had put on the ruby slippers but was not able to take them off.  She was trapped in her nightmare, just like Maryann and now me.

Life happened and it sucked.  I cried a lot.  I had no idea what was happening to my mom.  Life as I had once known it was a distant memory.

My husband recommended that I start this blog to help me to vet out my feelings with regard to Care Giving.   It was the best advice that I have acted upon, this blog has helped me to cope with the heartache and loss.

Fortunately, Maryann loves me and finally forgave me for not understanding her situation with Uncle Al.  She read my blog.  I made her mad, especially when I wrote about her.  I made assumptions that were wrong; I am sorry.

I have a new understanding for what Maryann lived through as a Care Giver because of my experiences.  I know how those Care Giver shoes feel, like the most uncomfortable high heels one can wear and attempt to run a marathon.  No one will ever know what it was and is like for Maryann and me, not until they put the shoes on and begin to run, chasing dementia.

The situation between Maryann and me, it happened.  We can't take it back, none of it.  We lost time, precious time that we could have spent supporting each other and offering a hand that would make coping easier.  But, we didn't.  Instead we chose to have discord which only made both of us feel worse.

Today, I am faced with similar feelings toward my family that Maryann had toward me.  I reacted toward her the same way that my family reacts toward me now.  I ignored her.  I was engulfed in my life and couldn't hear a word that my cousin was saying because I had my own perception of what was happening.  I was wrong.  I am sorry.

Walking in Care Giver shoes is painful, especially when carrying the burden alone.  Often as a care giver I think how nice it would be for family to rally around and pitch in equally with the caring of our aging mother.  But, it's a pipe dream, an unrealistic dream that I chose to believe; a dream that caused me to be judgmental and angry.  I drove my family further away, just like Maryann did to me when she was going through the trauma of caring for her dad with Lewy Bodies Dementia.

I had lost all hope to reunite with my cousin Maryann.  I had lost hope to ever reunite with anyone in my family.  The idea of losing not only my mom but my entire family ate at my soul.  Slowly I became more and more depressed.  I wrote about my heartache.  I called people out, based on my beliefs that were born from my sad emotions.  I was wrong.  I am sorry.

Today, my family still doesn't come around but there's one thing that's different, I understand.  I understand because of Maryann, my cousin who wears the same uncomfortable Care Giving shoes.  Fortunately, Maryann and I have each other to lean on.  Thank GOD!

Maryann, she understands me.  She KNOWS what I am going through.  She knows exactly when to call me on the phone to just listen and offer me comfort.  Together we walk in our Care Giver shoes, supporting each other when the pain is too great to walk another step.

I am grateful for my cousin.  She is helping me cope with the loss of my mom.  All I can do is listen to her when she needs an ear to help her cope with the loss of her father.  The two of us know how Care Giver shoes feel, we know what Care Giver's need from family.

I am grateful to have someone in my family who understands and intuitively knows exactly what to do to help.  I would be lost without my cousin Maryann, the only one who truly gets it because she has lived a mirrored experience with her dad, my Uncle Al.

Thank you Maryann.  Thank you for your strength and support during those times when the shit is flying; leaving me paralyzed with sorrow over the perceived loss of my own life.

My family.... I am sorry for judging all of you.  You have no idea what these Care Giver shoes are like to walk in and unfortunately, you will never know unless you find yourself sporting a pair of your own one day.  I can tell you this much, if and when you do wear Care Giver shoes for a loved one, you can be sure that I will listen and intuitively know exactly what to do to help you to cope with the heartache and loss.

I love my family and pray that one day we are all together again when my Care Giver shoes have been put on the shelf.  I miss family love.  If I had one wish for Christmas, it would be for my family to return and rally in my corner, supporting me through one of the most difficult times of our lives.

Do you dare take a walk in Care Giver shoes?

You Know It's Not Going To Be Good When...

1 AM I heard our dining room floor boards squeak.  My mom was up and walking around.

Woken out of a very good sleep, I bolted up the stairs.  I smelled fresh shit.  I thought to myself, "Well, this can't be good."

I was right.

I looked down the hall toward my mom's bedroom and I saw her standing with her night gown above her waist and she had removed her diaper.  The horror.  I rushed down the hall to help her sit on the toilet.  She had shit all over her legs and feet.  I gave her a shower to clean the crap off her body, it was like freaking glue.  Not something I ever wanted to face, let alone at 1AM when I had been sleeping so soundly.

I retraced my steps down the hall and could smell shit, it was horrible.  She had left a trail of shit from the dining room and up the hall leading to her room.  I cleaned it up, gagging and wishing that a bed would open soon in a home.  I'm grateful that I didn't step in it, she managed to leave the trail at the top stair landing.

Cleaning up feces is no fun and it's the main reason I never had children.  I always viewed kids as little shit machines, they eat... they shit; my mom, she is now our big shit machine.  She eats, drives me crazy, shits and drives me closer to the nut farm.

My mom doesn't like wearing diapers.  She needs to wear them, period.  How do I get her to keep her pants on in the middle of the night?  How do I get her to see her bathroom that is attached to her bedroom?  I leave the light on and the door open for her to see when she wakes up in the middle of the night.  She always passes the bathroom, rarely knowing it's closer than she believes it to be, especially when she's half asleep.

Today, I'll spend the day steam cleaning the floors and carpet.  The last thing I want is for my house to smell like a nursing home.  I'm grateful that I have the machines to help make the job easier.  Steam cleaners are one of the greatest inventions.  I recommend every parent and or Care Giver own at least one.  The steam gets into the crevices where shit lands and is difficult to clean.  The steam sterilizes too, eliminating all odors and germs.

My mom is off to the day program, up and out by 7:05 this morning.  Yay!  I have the day to myself and boy, do I need it today.

If I Only Had a Working Crystal Ball

The First Nursing Home I ever Visited in 1968
Where my Grandmother and Aunt Flo lived and suffered.

I've been actively searching for a nursing home to put my mom in.  It's a sad job for me to do, especially because I worked very hard to keep mom out of a home.

My personal fear of nursing homes, the images that were burned into my subconscious mind from that fateful day when we visited our mom's mother in a nursing home back in 1968, changed me forever.  The home is now a correctional institution where it houses prisoners.

Nursing homes are sad places, no doubt; it's the same now as when I walked through their halls as an 8 year old; only the faces have changed.

This week on nursing home tours, I saw more people slumped in chairs, sitting quietly, no conversations because they all appeared to be drugged.  Music played in the background, music from the 20's, 30's and 40's, no one even appearing to hear the static.  It broke my heart.  I asked myself, "Can I see Ma here?"  No.

I move on to the next place and it's the same.   Finding nursing homes that I would consider placing my mom is difficult, these homes are few and far between, often with very long wait lists.  My problem now is can I wait the year?  Can I keep on caring for my mother?  I really don't know.  I will keep doing what I'm doing for as long as I can.

My mother may end up in a substandard home because I didn't prepare for the inevitable.  My advice to Care Givers, be prepared because you never know when your ward will need to be placed in a facility.  It's better to pick the home yourself than have doctors move them to any home that has a bed... these are the shit holes.

Ideally, I should have had all her paperwork completed and had her on wait lists a couple of years ago.  But, hindsight is always 20/20... life as I know it, is what it is and there's nothing I can do about the past.

What could I have done differently?  If I had a crystal ball that I knew how to operate, things would be different for me right now.

First, I should have gotten Elder Services involved sooner.  I needed help desperately with my mom but did not know how to get out of my own way to get the help.  I had the phone number but I didn't have the uninterrupted time to make calls and follow up.  There is a lot of paperwork and follow up, something that is nearly impossible for one person to do when deep in the pit of caring for someone who's insane.

I expected and needed my family to help me but I was so judgmental and angry, no one wanted to help.  I do understand that my behaviors and attitude are the reasons why I was abandoned and left to carry the burden of caring for our crazy mother.  I'm not condoning what happened, but I do understand that it takes 2 to tango.  I was wrong.  My siblings were wrong too.

Living with a parent who has LBD, we are left to watch the person die a slow death.  It's awful to witness.  It only gets worse, especially when the shit starts to fly out of their ass landing in spaces that are near impossible to clean.  Our homes begin to smell like those nursing homes that I've been visiting lately.  We find ourselves wiping our parents ass, showering shit off their frail body and running the steam cleaning cycle on the washing machines daily.

Here I am, literally confronted with human feces every single day of my life.  I never wanted to be where I am right now and have told my mom since 1998 that once she started to shit her pants, our time together was over.  In her mind she isn't shitting herself, she has "her period."

Lately, I long for the days when I worked in Sales.  I once complained about cleaning up after my assigned Sales Executives; something that would be welcomed by me now.  Today, I'd rather have proverbial shit to clean up at a paying job instead of actually cleaning my mom's real shit with no pay.  Shit smell lingers and is nauseating but somehow getting paid to clean up perceived crap makes it easier than caring for a demented parent in a diaper.

I do have help with my mom now, but she is refusing to allow anyone to help her except for me.  It's related to her loss of control over her life.  It's a heavy burden that I don't want to carry anymore.  I wish I had been more prepared so that I am not faced with placing my mom in a home that I wouldn't want to live in myself.

My view about nursing facilities has changed and I do believe that there are homes which have caring staff.  My mother needs to be in a nursing facility.  I am searching for a home in a similar way that I search for a job.  I do my homework.  I write questions.  I do site visits.  I have a spreadsheet.  It's time consuming but I believe that my efforts will help me find a home that makes me feel confident that my mom is being looked after so that I can get on with my own life.

I miss my life.  I miss the joy that I once would have making quilts, playing golf, meditating, exercising and enjoying time with my husband.  Now, it is lost and I want it all back... NOW.  I am unhappy more than I'm happy; no way for anyone to live.  Creating happiness in my life is becoming more and more difficult to maintain.

Ma in a nursing home will be different.  I'll expect to spend time visiting her frequently, helping her to realize that she hasn't been forgotten; left to die alone like her own mother's reality.  Hopefully, my mom won't hate me too much when she is moved to a facility.  She often tells me now that she hates me and not to bother visiting her in a home.

I believe that frequent family visits and involvement creates a good atmosphere for the patient.  Staff tend to give more care to those who have frequent visitors.   Personally, I vow to do my part, I will visit my mom frequently and take her out for rides as long as she is able to get into my car.  I pray that my family sees things the same way and pay attention to our mom when she is in a home.

However, I am not hopeful that my family will visit her, they don't visit her now so why should I believe that she will get frequent and regular visits by them when she's in a home.  It's hard to go to a nursing home.  Is it because we are faced with our own mortality?  Not sure but I do have to work on not being angry with the situation that I am in and directing my anger toward my brother and sisters.  I am not them... I am me and only I can do what I can do.

Visiting homes this week, I didn't see any visitors, no family or friends.  I saw sorrow filled hearts painted on the faces of once vibrant people.  It appears that as soon as someone goes into a nursing home they are forgotten.  No reverence for the long life that these folks have lived, their usefulness negated by their illnesses.  Sadness permeated the air, engulfing my spirit and causing me to cry.

The most important thing that I need to remember every single day is the only one that I can control is myself. As much as I'd love for my family to rally together to help our mom when she's in a home it is unrealistic.  I have no idea what motivates family members; everyone has their own choices to make, choices which pave the road to their future happiness.  It's not my concern and I can't make it my concern or I'll be pissed off until the day I die.

Families have no idea how hard life is for a Care Giver; none of them will ever know until they walk in the Care Giver's shoes, something that few are brave enough to do.  It's easier to be an Ostrich and repeat the phrase that was made famous in the TV series, Hogan's Heroes, "I know nothing! I see NOTHING!"  For me, family is my greatest challenge.  I miss my family.  Will we ever be together again?  I don't know... I need a Crystal Ball to know for sure.  I can hope.

It's times like now that I feel like an only child, left to carry the burden of a demented parent alone.  Coping is hard now, especially when I grew up with so many people around me.  I am angry; expectations making my life more hellish.

I wish I could control my thoughts, but the reminders of the insanity associated with caring are often too great to keeping a positive outlook.  I apologize if I offend people, especially my family, I have difficulty keeping my mouth shut.  I love you all, I just miss you a lot.  I need you.

Today, I am impatient.  I am tired.  I was woken up way too early.  I was greeted by my demented mother, fully dressed and ready to go somewhere at 5AM.  I hate myself today because I can't handle the stress of caring.  My tongue is sharp and days like today I have a hard time controlling my words.

Through all of this I need to remember one fact; I am the only one who can make myself happy.  No one can make me happy.  Happiness is a state of mind that only I can manifest in myself.  For me, I am having trouble finding happiness, the burden is too great and I'm tired.   My body is in physical pain from the stress.

My main question these days is when will I be able to create consistent happiness in my life again?  I miss being happy and satisfied with life.  I miss sleeping.  I miss being able to see my friends or to be spontaneous. I miss life.  I miss cleaning a bathroom and having it stay clean for more than 5 minutes.

If I only had a working crystal ball...

Where Do I Begin?

So much has happened since the last time I posted and that's only been a couple of days!

The Pill Swallowing Cup was a waste of $2.52.  It didn't work for supplements in capsule form.  The darn capsule got stuck on the little ledge where I was instructed to place the pill.  When the capsules get wet they melt and stick to the cup.

Dr. Barton mixed up some herbal extracts in a liquid form so that my mom could drink it.  It tastes bad.  I tasted it.  My mother drank it once and then began refusing it.  Her blood pressure was sky high and I was freaking out; not good for either of us. Mixing the high blood pressure drink with a bit of raw honey has made it so that she can at least swallow it down.

She wouldn't eat the lunch that I packed her yesterday when she went off to the Day Program.  She told the nurses that they poisoned it and refused to eat this beautiful salad that we made TOGETHER that morning.  I even let her pick out the container to put it in.  Nope.  Once lunch time came and her lunch bag was out of her sight, she was convinced the nurses were trying to poison her.  She wouldn't even drink her homeopathic remedy, hyoscamous, a remedy that makes her agitation go away.  Eventually she did drink the homeopathic drink.  Her attitude shifted and she was having fun again.

Typically, after lunch she has behavior issues.  In the morning she has a great time.  Lunch comes and then everything changes.  She starts to wander and she's sporting her mean face.

I learned that my mom was being segregated from the others because she couldn't eat the lunch that was being served.  My mom was peeved, she has been for awhile, I just couldn't figure out what she was trying to tell me.  She wanted to eat with everyone.  She would get angry that she was being pulled away from her friends, her REAL friends.  I can see why she felt bad.  It caused her pressure to go up and she was agitated.  A complete bitch toward everyone, including me because I was the root cause.

Yesterday, I talked with the Nurse Director and we talked about the lunches.  Brian had a brilliant idea, he thought that maybe if my mom ate with her friends, then she wouldn't have issues after lunch.  The nurse went over their food menu with me and I pointed out everything that my mom could eat.  I also told her what behaviors would surface if my mom ate potatoes, bread, pasta or any simple carb like cake.

Today we gave it a shot, we had my mom eat the lunch that is served to her friends at school.  Her reaction as described by the aides, "FINALLY!"

She ate with her friends.  She was part of the group and wasn't being segregated.  One of the Aides made my mom a sweet potato that I sent her to school with instead of the white baked potato that comes with their meal.  Roll was removed from her plate and no birthday cake.

My mother was excited and happy.  She had a great afternoon and didn't have any issues.  The nurses and aides were thrilled.  One even asking why I was looking to put her in a home when she was doing so well in the program.

The wait list is long for homes and it's better to be prepared.  I'm noticing the good ones have very long wait lists.  I will wait for my mom's home to come available, only one year.  The home I visited yesterday was very nice.

The home site visit today... scared the crap out of me.  The people looked all drugged and none of them were talking to each other.  They couldn't communicate and no one was communicating with them, all just sitting at dinning tables in wheel chairs, staring into space.

No way will I put my mom in a home like the one I visited today.  Tuesday I visit another nursing home.  I have a long list to go through before I make a final decision.  In the meantime, things are working out for my mom and the day program 5 days a week.

The daily Care Attendant?  Not working out so well, my mom doesn't like anyone taking care of her and in turn does not like Belkis.  I am bummed.  I like Belkis a lot, she is such a good care giver.  We'll see what we can do to remedy the trouble.

In the midst of all of this we had another emergency in the truck.  I couldn't find a bathroom fast enough.  When my mom says to me, "I have my period," I know that she shit her pants.  Fortunately, I had left a fresh change of clothes for her at the Day Program, our destination.  The aides cleaned her up and made her feel good again.

It's never a dull moment.

Pill Swallowing Solutions

Finally, I am beginning to feel that I have some control over my life and my happiness.  I am able to do something that has become increasingly more difficult as my mom has been declining deeper into a child-like state of being; I can clean.  I feel liberated as I am able to clear clutter, dust and cob webs from our home.

Mom is still slipping, each day I am noticing less that she is able to do on her own.  No longer can she dress herself, she requires assistance.  She just can't figure out how to put cloths on.  Well, not at the appropriate times anyway, for some unknown reason, at 2am when she's frantic to GET OUT, she has no trouble getting fully dressed with shoes, hat, coat and gloves.

Her spirits were good today.  She was able to swallow her pills with a little coaching, we did it within 15 minutes this morning.  She was pleased.  I was happy.  The morning went off without a hitch, except that my microwave broke and I couldn't heat water for a cup of tea.  The van came at 7:10 AM to whisk mom off to the day program; another day to myself to accomplish items on my very long to-do list.

I did search for a solution online to her pill taking trouble.  I found a pill taking cup that is an aid to help folks who have trouble swallowing pills, especially large supplements.  The pill cup I found initially through a search online, cost $15.  I was ready to order it but I read a review by someone who made a comment that their are cheaper alternatives.  I saw a few cheaper versions online and decided to head out to the local pharmacy to see if I could find one.

I was directed to a medical supply store across the street from the pharmacy, they had one in stock but in another store.  They'll have it for me today.  I love the price too, $2.52!

Dr. Barton is also helping by changing her supplements to liquid versions, easier for her to swallow and ingest.    For cognition, we'll try a powder that I can mix in her oatmeal every morning.  Her high blood pressure and cognition supplements are the troublesome capsules because of their size.

My fingers are crossed.  I hope the liquid and powder works for her, otherwise I really don't know what we'll do... we'll just have to cross that bridge when we get to it.  In the meantime, I'm grateful to have found alternative solutions to help her to continue to take natural remedies.

The Search Has Begun

There's an old saying, "a rolling stone gathers no moss."  I've learned that this little fact applies to everything in life which requires action so that forward motion can be achieved.

Standing still sucks.  It leaves the stander feeling like their feet have grown roots, rendering all movement to become motionless.   The problem with standing still is that nothing ever gets done!

We think about what needs doing, over and over again.  My dad often reminded me when I was growing up that when you think about doing something instead of doing it, you do the task every time you think of it.  Eventually, you do force yourself to do laundry, clean out a cluttered room or follow up on paperwork; it's drudgery.  You feel a sense of dejavu, have I done this already you ask yourself silently?

"Yes!"  You hear a voice well up from deep inside with flashes of all those times you thought about doing one of your tasks.  In my case, I also hear my dad's voice telling me that if I just did it the first time I thought about it, I'd be well down the road by now.

Looking for a home to place my mom has become one of those tasks for me.  I have researched nursing homes online, none looking very good because of the published ratings.  Fear set in and my feet grew roots... I couldn't do anything with regard to finding a home for my mom.

My mom continues to decline and I need to use my time more wisely; I need to be prepared for the moment that she needs to go to a facility.

The bed opened up in New Hampshire in the home where Uncle Al is living.  But, Uncle Al is now in a hospice state of being; no way for my mom to spend her remaining days, watching her brother die.  I was back to the drawing board, looking for a place closer to my home.

Last week,  a flyer came in the mail from a new Assisted Living / Nursing Facility in our area.  The open house was yesterday.  My husband and I decided to check it out once my mom's Companion had arrived for her 3 hour tour as my replacement.  It's always great to see her smiling face coming through the front door.  That's a post for another day...

We visited Brightview on Concord River in Bedford.  It's a private pay facility.  It's a home for the very wealthy with monthly costs starting at $5,000 + based on your particular needs.  Someone like my mom, it would cost us $7,000 a month with cost rising as her condition deteriorates.  Definitely out of our price range.  Medicare is not honored ... we were definitely SOL with placing her in this home.

The facility is absolutely beautiful.  Brian and I both wanted to move in now.  The dining area was stunning, looked like a fine restaurant only with bright lights so that the residents could see.    There was a bar too with a very nice lounge.  Flat screen TV's hung on the wall with an actual wait staff, waiting on tables.

We had a little egg nog, spiked with some rum.  I had mine topped with a bit of whipped cream and cinnamon.  Delicious.  We had a few cocktail shrimp and a little salad.  The food looked and tasted very good.  It was such a nice atmosphere.  The residents appeared happy.  Hell, I'd be happy too if there were a bar/lounge in my nursing home!

We saw where the wealthy folks go before they pass on to greener pastures.  It's like they live in a 5 star hotel!  It's costly.  The only way to live in a place like this is to be very rich or plan ahead.  Start when you are young... the younger the better.  I'm now 50.  It's time for me to make sure that I have a long term care insurance plan, one that will take care of me in a place that I CHOOSE.

I wouldn't want to leave my relatives to selecting my final living location; it isn't fair to them.  It's really hard to find a place that matches the needs of the patient.  In this case, my mom... I need to find a place that understands Lewy Bodies Dementia.  The home we visited yesterday, of course they understand LBD and even have other LBD patients in the Memory Impaired portion of the facility.

We saw the Cadillac of Nursing Facilities yesterday.  It was amazing.  In contrast, I've seen the absolute pit of nursing homes and I've seen one that is decent but too far away.

Next weekend, we'll look at another nursing facility.  My job this week is to find one that accepts my mom's insurance and call to schedule an appointment.  I have found the place, now I need to publish this post and make the call to schedule a site visit.

Our New Morning and Evening Routines

My mom has difficulty knowing what to do with pills that she needs to ingest.  I pour a glass of water and put her supplements in a small glass dish.  I use the same dish and the same glass every day to keep it familiar for her.

"OK Ma, take a drink of water.  Go ahead.  Sip it."  I'll coach her.

"OK."  She replies as she sits and holds the glass, looking at it as though to say, "How do I work it?"  My mom looks at the glass of water like it's some huge puzzle to solve, she has no idea what I am asking her to do.

I repeat, slowly.  "Go ahead, it's ok.  Take a drink of the water, do it like this."  I say to her as I put a glass of water to my lips and take a sip.  My mom eventually mimics my action and sips the water.

"Great!"  I offer a bit of positive feedback, hoping that it helps her get through the 10 supplements that need to be swallowed before she can start her day.

"Now take this pill and swallow it like a bullet.  Go ahead, you can do it."  I encourage my mom.

She will look at the pill like she looked at the water.  She has no idea what I am asking her to do.  I take a pill and show her how to do it.  Visual aides seem to help.

It takes nearly an hour for her to swallow all of her supplements in the morning and before bedtime.  It's distressing to witness.  My anxiety makes it harder for her because my tension seems to trigger elevated blood pressure in my mom.  I need to remain calm... this is difficult and requires a conscious effort on my part.

I have noticed that when her blood pressure is high, she can't remember what to do and it takes lots of water to get down just a few pills.  The other night her blood pressure was 131/62.  She swallowed all pills with no memory issues related to how to do a task that once was second nature to her.

I am in a quandary over my mom's pill swallowing issues.  Keeping her blood pressure down seems to be a key to her success with taking supplements that allow her to have more good days.  It's difficult when she can't ingest the supplements that work very well to keep her blood pressure in a very good range.

A Lesson in Patience

My mom, she's definitely feeling good these days.  She is back to her defiant old self, saying NO just for the sake of saying NO.  My mom admittedly told me that she likes to see if she can make me cry.  Old habits never die, not even for the demented mind.

What I have experienced is that my mom's lifetime habits have been amplified.  Passive aggressive behaviors that were always annoying to me are now even more prevalent and the root to lots of my angst with caring for my mom.  Patience is required, lots of patience.

Fortunately, I am feeling rested.  The respite that I have every day and on the weekends is helping me to cope with my mom's fight for control in her life.  A control that is slipping away gradually, leaving her feeling lost and longing to "Go Home."  One day, the bus will come for her and whisk her away to her home in Heaven where she can be with all those who have passed before her; people she longs for every waking minute of every day.

In the meantime, I need to nurture patience in myself so that I am able to help her leave this Earth gracefully and in peace.

One Of Those Dreams

Made by Fantasy Art Gifts

Yesterday, I was exhausted.  My plan was to clean carpets and my bathroom while my mom was off at the Day Program.  My brain wanted to work but my eyes just wouldn't stay open.

Guilt hit.  I had lots of self talk, telling myself to suck it up and push through the sleepiness that was taking over.  I made a pot of coffee and drank a cup, hoping that it would give me the energy to clean.

Nope.  The coffee seemed to make me more sleepy.  I gave in to the Sandman's beckoning to me; I laid down.  My thought was to sleep for just an hour, I slept for nearly 3 hours!

Sleep came fast.  I drifted into a comfortable place, one where I was totally relaxed.  Then, it happened... I had a dream.  It wasn't the regular run of the mill dreams that I have, this one was "one of those dreams."  Dreams that I've had throughout my life that feel different and always tend to be prophetic in nature.

An angel came to me.  I'm not sure which one it was, it could have been the Archangel Uriel.  The angel was carrying a sword and was dressed in green.  Radiant and glowing, the angel came close to me and touched my shoulders with the sword as though the angel was dubbing me a Knight for some battle that I had just fought.  Tears filled my eyes.

The angel, he was beautiful and filled my being with the feeling of peace.  I felt comfortable and safe.  I felt totally relaxed for the first time in a very long time.

Then, the angel said to me, "Susan, your mom will pass between March and May of 2011.  You will be prepared.  She will pass peacefully.  You are a warrior of the light.  You have passed the test."

I opened my eyes, jolted out of this dream as though their was someone in the room.  I looked for the angel but he was gone.  The Angel's presence is still lingering, radiating from my heart.  I think of the angel and I am returned to the feeling from the dream visit.  I am grateful to have had one of those dreams that prepares me for the future.  Time will tell.

Another Good One!

Ma, waiting for the van to take her to "school."

Good days.  Oh how I LOVE the good days as a Care Giver to my demented mother.  She's funny.  I enjoy her company when she's having a good day.  Mom laughs a lot on good days.  Her appetite is very good too when she's riding the wave of good times.

Yesterday, my mom and I had our hair done.  It was enjoyable for both of us.  My mom felt like she was in control of herself, she chose her own hair color.  "I look Italian!"  She exclaimed when she saw me.

"Well Ma, you are Italian so that's very good.  You look so young."  I replied.

Mom stood a bit taller and smiled bright.  She was talkative and eager to walk around the supermarket.  Boy, did we walk the store; my mom kept up with me.  A spring was in her step as she pushed the cart, reminding me of items that I had told her I needed.

My mom had a fabulous day.

Today, my mom woke up at 5 AM.  She was happy and smiling as she gave me a good morning hug.  Two nights in a row my mom slept through without waking and roaming during the wee hours.  She woke up aware and cognizant of her surroundings.  Swallowing her supplements was a snap; hard to believe that she had difficulty just a couple of days ago remembering how to take a pill.

Mom's acclimated to going to "school" every day.  The van arrives early at 7:15 AM to sweep my mom off to the Day Program to be with her friends.

She stood waiting patiently for Martha to arrive this morning, holding her lunch, standing like a little girl waiting for the bus.  The cats, they waited too, just like little puppy dogs.

Mom left this morning, happy and feeling beautiful because her hair was nice.

"See you at 2:30 Ma, I'll be there to pick you up after school."  I said to her as she replied, "OK, Dear.  Have a good day!"

Like a Moving Ocean Wave

Black Sand Beach in Hilo, Hawaii

My mom's cognition is like a moving ocean wave.  Up and down, some waves better to ride than others, while then there are those swells that just make me want to call 911 to have the police take her to an insane asylum for a psych evaluation.

It's days like today that I now find myself living for, the good days with my mom.  Acupuncture is working fabulously for her once again.  She talked to my sister Donna on the phone for a long time last night; she is finding her words.  I dialed Don up when my mom was talking my ear off, an ear that needed a rest.  Thank you Donna for talking to Ma, I'm sure she entertained you with her conversation.

My mom's Care Attendant had a chuckle when she was helping my mom take a shower and my mom told her  "I have my period."  Not really, she was describing the skid marks in her diaper.

The crap stopped flying and I'm grateful.  Mom's been sleeping through the night too.  Last night she went to bed at 7:30 PM and woke up at 7:30 AM.  A care giver has got to love a 12 hour break at night... I sure did!

She is getting acclimated to our new routines with Belkis coming every day.  Our Care Attendant is awesome.  She understands my mom and how to get her to do things.  Belkis is teaching me, which is great.

I figured out how to help mom take her pills.  I give her a smaller glass.  It's easier for her to handle.  I also force myself to remain calm, my nervous energy tends to make her throat close up, rendering her helpless with a dissolved herbal supplement that tastes horrid.

Today, she swallowed all of her pills without any coaching from me.  She was so proud of herself, standing taller and more engaging in the world around her.  Today is like we are riding on the crest of a big wave, it feels so good to glide along... it's exhilarating and makes me feel giddy.  I will enjoy today because I know that this day too shall pass.

Today we are having our hair done.  My mom is excited.  I am too.  It's been far too long since we had a beauty day together.  Fun!

No Regrets

My mom and Uncle Al
March 2009
A good day

Yesterday's post brought me several comments from my readers.  I felt it was better to reply in a new blog post, so thank you SK Waller, Mellodee, Kim and Kathy for your heart felt comments.  Thank you.  Your words help me a lot.

I am ready to commit my mom to a home, it is definitely time.  A bed did open up for her at Uncle Al's home but with the state that Uncle Al is in these days, we feel it may not be good for my mom to live with him and seeing his decline.  It's horrible to witness someone in the end stages of a dementia illness. It's my mom's fate and I'm scared for her.

Death is part of life.  I get this fact very well.  The aspect of death that is troubling is the suffering people go through to get to the finish line.

Now, Uncle Al can't talk, he grunts and makes noises.  He tries like hell to talk and communicate, but he just can't do it.  It's surely frustrating for him, not to be able to find the words to express his feelings and thoughts.

Last weekend, when I visited Uncle Al with Maryann, I brought my camera and asked him to give my mom a message.  He smiled into the camera and tried to give his little sister a message; it made my heart break to see my once vibrant Uncle Al trapped in a dying body.

I thought of Uncle Al as a young mischievous boy being chased by his Pa.  I thought of Uncle Al playing ball with other kids, working in the movie theater, going off to war so that he'd have a place to sleep and eat.  I thought of Uncle Al's full life, but still felt sad to see him incapacitated, unable to move and communicate his thoughts.

My mom, she is heading for this same ending; or is she?  I wonder if all that we've done for my mom, the alternative approach to helping her, if it will bring a less painful ending?  I don't know.

What I do know is that Acupuncture is helping her a lot.  Over the Thanksgiving holiday my mom wasn't able to get acupuncture twice a week.  I noticed a huge difference in her mental state of being.  She was more agitated and confused.  Swallowing pills was a project that needed patience and time; two aspects of life that I was running short.

Today, she has Acupuncture before I take her to the Day Program.  It helps her find her words and remember how to take her pills.

Friday, my mom told me that the nurses at school were excited that she was able to swallow her lunch time supplements with no coaching.  "She did it!  Did you see that?!"  The nurses exclaimed.  It made my mom happy to hear the nurses become joyous over her accomplishing a once simple task.

Acupuncture gives my mom the feeling that she is capable, believing that she can do everything herself.  My mom, she doesn't like having a Care Attendant; she likes having a companion.  Tonight, I hope she lets her companion help her in the shower.  It's one of those tasks that no matter how many times I've helped her in the shower it is just as difficult as the first time I had to help her wash herself.

Today, we should have a good day.  My mom slept through the night.  Albeit she did wake up at 6 AM, walking down the stairs to use the bathroom attached to my husband and my bedroom in the basement.  I'm always amazed how she misses the bathroom attached to her own bedroom; I even leave the light on so that she can see the toilet.  

It's never a good feeling to have a panicked crazy person who has to pee, standing frozen on the stairs as she screams, "But I have to pee!"

We had no bowel mishaps today.  Everything made it into the toilet.  I'm considering this a sign for a good day ahead.

I will call nursing homes today and set up appointments to do tours of the facilities.  I need to find my mom a home where the staff understands Lewy Bodies Dementia.  I am on the hunt for the right place for her where they understand her condition.  I live in a town with lots of seniors and a plethora of nursing facilities.

I've also decided to take my mom to the nursing home myself.  No big fan fare.  I'll prepare her for the move and just do it myself.  Emotional family would make it worse for her and me.  I feel that I've gone this far alone with her I may as well go the rest of the way with just the two of us.

I have only one request for my family with how they can now help, visit Ma frequently and regularly once she is moved to a facility.  Mom will need everyone more than imagined when she's in a home.  Even though you may think she's "gone" or not there, she is... she'll just be trapped in a dying body, just like Uncle Al is right now.

It's been a long road that I've traveled with my mom.  The day I do bring her to a facility, I will do it knowing that I did all that I could to help her.  I will have no regrets and for this I will forever be grateful.

Tough Week

This last week has been a tough week for me personally.  Cleaning up human feces has taken it's toll on me, I just don't want to do it.  I never wanted to clean up shit, especially shit that wasn't my own.  But, I have been cleaning and gagging, not feeling much like eating.

I am not feeling too well.  I'm tired.  My stomach has been in knots.  The help I am now getting, seems to have arrived too late.  Too late in the sense that I have lost my will to continue to care for my mother.  I'm tired of her waking in the wee hours of the morning, greeting me at the top of the stairs, fully dressed with a coat on ready to go outside.  She always believes that I have left her, that she's been left alone somewhere and she needs to get to some past home that doesn't exist for her anymore.

I'm sad that I can't handle caring for her.  I'm burned out.  Everything bothers me, probably because I have been cleaning up fecal matter that is not my own... I vowed that when this happens, my care giving had to come to an end.  But... I'm still cleaning shit, ignoring my vow.  No wonder I'm so unhappy.

My mom believes that she can do things on her own.  She doesn't understand that everything that she was once able to do, she has difficulty doing now and needs help.  She needs help in the shower.  I can't wash my mother's ass.  I don't want to clean shit off my mother with a face cloth.  Seeing my mother's wrinkled old body, naked, is disturbing.  To clean her while she fights me, sucks.

Thursday, my mom was upset that she had a care attendant.  She didn't want our respite worker to help her.  She was a total bitch toward me and her.  I can't care for my mom without Belkis' help.

Lately, my mom can't swallow pills without coaching.  She forgets what to do.  She forgets how to sip water first and push the pill in her mouth like a bullet to swallow it down.  It takes 5 or more minutes for each pill to go down.  It is distressing.

It sucks.

It sucks when she gets paranoid, believing that I'm stealing her money.  How could this be?  She is costing us money!  Money we don't have, money that I can't earn because she sucks up so much of my time with caring and cleaning.

My mom has a wallet still.  I hold it in my purse for her but something always triggers suspicion, she doesn't trust anyone, not even me.  To avoid a big battle, I give her the wallet back.  She sticks the wallet down her pants to "hide" it and keep "them" from taking it.  I'm waiting for the day that the wallet falls in the toilet and she shits all over it.  I'm so done with this... I don't want to do this anymore.

Taking her wallet from her is akin to the arguments we had when I was taking her car away.  It's a battle.  It's her last thing that she feels she has control over; the wallet has to go.  I'm sick of looking for it.  I'm tired of her accusing me of stealing her wallet.

Lewy Bodies Dementia is a horrible disease.  I pray to God that I am not afflicted with this debilitating disease of the mind.  I apologize now to anyone stuck with caring for me.  I apologize for driving you insane and causing you to cry.  I'm sure I won't want to go to a nursing home too.  Who would?  But, I won't blame you for sticking me in a facility.  Please, make sure you find me a nice place, a place where the nurses and doctors understand Lewy Bodies Dementia.

I'm tired.  I'm saddened because I couldn't help my mom.  I was able to slow the progression but not stop it.  I'm sad because I missed out on so much of life over the last 3 years because I chose to be a Care Giver.  I'm angry because I feel trapped and in a hell on Earth.

Uncle Al, my mom's brother.  He is now in hospice.  He is in the final stages of this disease and it's awful.  He's in pain.  Grimacing faces that leave us feeling helpless.  My mom, she wants to see her brother.  I'm scared to let her see her fate.  I pray that she passes before she is unable to walk or talk, unable to live a quality life like Uncle Al.  Uncle Al even told Maryann, "I don't want to be like this."

The Crazy Gene is scary.  No wonder my mom talked about it my entire life, frightened for all of her off spring and the potential we all have for losing our minds, causing so much pain for loved ones who stand by and watch the cruel decline.

There's one thing that I hate in this life, Lewy Bodies Dementia... it stole my mom from us and has the potential of taking hold of the lives of others in my family that I love.

All I can do is pray, eat right, get plenty of exercise and make sure that I have lots of social interaction.  I will do all that I can to dodge the LBD bullet.  I hope that everyone in my family with the crazy gene heeds the warning, it's not too late for us, but it is too late for mom and Uncle Al.

This has been a very tough week, however I am grateful for one person in this world... Uncle Al's grand daughter, she brings laughter and happiness into my life.  She makes me laugh and feel happy.  I love Uncle Al's little Princess.  I love her imagination and her ability to learn.  Her smile and little voice are a gift to our world that is full of illness and sadness.

Never Thought I Could

Growing up, I never could stomach bad smells, especially the smell of shit.  It's the main reason that I never had kids, changing crappy diapers was never on my life's to-do list.  I thought I had made it through life, dodging the shitty diaper bullet; so, I thought.

I did change my nephews crappy pants; they helped me to make up my mind when I was a young teen that children were not in my future plans.  Kids are messy and stinky, definitely not for me.  Instead, I vowed to be the best aunt that I could be, changing their loads only if completely necessary.

That was nearly 40 years ago and now, I find myself changing my mother's shitty diapers.  I swore I would never do it because I thought that I couldn't.  I didn't want to do it, never, ever.  But, I find myself wiping my mother's ass and helping her with toileting.

Yesterday my worse nightmare happened.

I picked her up at the day program; she had a great day.  I forgot to ask her if she needed the toilet before we left.  We have a 20 minute drive home.

5 minutes into the trip back home my mom says, "Uh, oh.  Hurry!"  She began to shit her pants.  I was grateful that she didn't fight me and wore the diaper that morning when I was helping her to get dressed.

All the way home, she shit, giving me a blow by blow description of her incontinence.  "Uh.. don't hit that bump.  Ah gee... "  On and on she went as I drove down what seemed to be the bumpiest road in town.  I prayed it didn't soak into the front seat of my truck.

We got home, she got out of the truck and yes, she had shit on the seat.  I was bummed.  It could have been much worse if she didn't have the disposable underwear on.

I cleaned up my mom.  Fortunately she listened to me.  I had asked her on the way home to follow my instructions so that we could get her cleaned up faster without making the mess worse.  She agreed and let me help her.  The mess wasn't that bad because my mom cooperated.  I only gagged a little.  I just couldn't allow myself to even think about what I was doing... cleaning shit off my mother's ass.

My mom is declining.  She is shitting herself every day now.  I heard that fecal incontinence is a symptom of LBD.  We are now in this horrible phase of the disease.  I don't want to clean up shit anymore.

I am seriously on the hunt to find her a home nearby where there are people who can care for her.  I just can't do it.  Even with in-home help, it's way too hard; she always shits when it's just me and her, not when the help is here.

The smell that is now permeating my home smells like a nursing home and I don't like it.  I spend my time off cleaning carpets, bathrooms and laundry.  Lots and lots of laundry with shit stains.

I never thought I could wipe my mother's ass.  Never thought I could change her diapers.  I never wanted to do it... EVER!  However, I am.

Uncle Al, he's going in to hospice.  He doesn't have long, the bus will come for him soon.  My mom, she is marching along the same path, only about 2 years behind Uncle Al, her older brother.  At least I have an idea how long we have with my mom based on how Uncle Al lived through this disease.  He is now in the end stages, it's horrible.

I remember 2 years ago when Uncle Al was visiting, he shit his pants.  I had to shower him off.  I never ever in a million years wanted to see my Uncle's junk, let alone cleaning shit off of him.  But... I did it, 3 times too many.

How do people do it?  How do people who care for seniors clean up folks who can't control their bowels?  I find it disturbing and pray to God that I pass before I need someone to wipe my ass and hose me down.

I can't imagine what it must be like for my mom.  I pray for strength.

How I Spent My First Saturday Of Respite

Yesterday, Maryann and I visited Uncle Al.  He couldn't make it to the Thanksgiving Day party that we had, where family gathered to celebrate our gratitude for family.  We were all sad that Al couldn't make it, especially my mom.

I had no idea what to expect when we got to the home, the unknown is always scary but I threw caution to the wind so that I could support Maryann. She's my family and she needs me... I had to be there for her.

I too needed to see Uncle Al and he needed to see Maryann and me together.  Uncle Al gained enough consciousness to recognize us together.  I knew he understood what he was seeing.  When I said, "Uncle Al, your dream has come true, Maryann and I are best buddies again, just like you wanted.  You did it, Uncle Al!"  He turned to me and said, "Ya, but for how long?!"  Spoken like a true DiPietro.

Uncle Al is still here, he's inside his fragile frame, just like my mom.  Both siblings are slipping away, racing for the finish line, who will go first?  It's a slow decline at first and then like a crack of lightning striking, progression of their disease is faster and faster.

Verbal communication is nearly impossible with Uncle Al.  Most folks have given up now and say, "He or she isn't there."  You know what... you are wrong.  They are there and need family to help guide them to the finish line of their life on Earth.  Think about it, if you were the one in Al or Jo's situation, wouldn't you want to know that you were not forgotten by family?

It's easy to ignore a dying senior, it's not glamorous, most times there's shit involved, real excrement which can cause even the strongest individual to run for the hills.  From experience, this is when the people we love need us the most.  Our seniors need us to usher them out; allowing them to see that their family will be OK once they get on the Bus to Heaven.  Dying seniors need to feel the love as much as any of us need love to feel satisfied.  Why not tell folks when they are alive how you feel instead of waiting until they pass ... you'll avoid a lot of "I shoulda's"  and save yourself lots of mental anguish.

Because I am a Care Giver for a parent with dementia, I understand the importance of loving family right to the end... actions speak louder than words.  For this reason, I gave up my first Saturday that I could have spent with my husband to see Uncle Al and support Maryann.

Yesterday, I witnessed the love a daughter has for a dad.  I remembered my own dad and how I mourned for 3 years after his death in 1979, I was only 18 when he passed and it sucked.  I remembered the pain, I remembered the emptiness, the numbness that Maryann was feeling as I saw her put her forehead on her dad's forehead as she said, "I love you Daddy."

Uncle Al felt his little girl's love, I saw it on his face.  This picture tells a story that no words can express.

And that is how I spent my first Saturday of respite.

Ah Ah Baby

"My Bachi"

"Ah Ah Baby"  My Bachi (Polish Grammy) would sing as she rocked each of her grandbabies.  It's a sound that I will never forget and want my future relatives to know.  One day, if someone is taking care of me before I die, make sure they rock me in a rocking chair and sing, "Ah, Ah, Baby"  Over and over and over in a mantra sort of way.  Especially if I have dementia.

Thank you future relatives who read this blog to maybe understand the illness that seems to be what Gram always called "The Crazy Gene."


Love,

Sue
Age: 50 and still has her mind

Thanksgiving ...Bitter Sweet

The phone rings... I'm up to my elbows in turkey, guest are all arriving at the same time. Chaos.

Brian answers the phone, it's Maryann... she's in tears.

I put the turkey down, taking the phone from my sweet husband, my heart sank.

"My dad... he took a turn for the worse.  He can't sit up, his mouth is open, he's drooling, it's horrible.  My dad, he looks like he had a stroke!"  Maryann's voice cried to me, full of sadness and pain over the impending loss of her dad.

"Still come.  You need to be with us, we love you, we are your family."  I replied.  "It's going to be OK.  We are back together, you are back with your dad's family, we'll get through this, we love you.  It's what your dad wanted and his dream has come true."  I said to Maryann, my closest cousin and friend from when we were kids.

"I'm coming, I can't stay here.  I just didn't want to breakdown in front of your mother."  Maryann sobbed.

The decision to tell my mom was an easy one, I always tell her the truth, even in her demented state of mind.  I crouched down next to my mom and said, "Ma, Uncle Al isn't going to make it.  He's not feeling too good today.  Maryann and Dan are coming with Nikki."

My mom, she looks up from the beans that she was helping to prepare, eyes welling up with tears and a big frown on her face.  With her lower lip quivering she said, "He's going to Heaven.  He's leaving without me, he's leaving me here alone.  I want to go with him."  She began to cry.

My heart broke even more for my little mom.  I thought about how it must feel for her to have all of her siblings going and gone from this Earth; how she will never be able to have a real conversation.  I thought about how I'd feel if I were the last one remaining.  I cried inside, sucking in the tears, forcing myself not to let the floodgates break.

"It's OK Ma.  Uncle Al will still be here, just like Dad and Ed, your brother Auggie and your sister Flo.  They will all be here watching over you.  Just think, when it's your turn for the bus to come, they'll all be there welcoming you to your big Celebration of Life party that God throws in Heaven for all the good people like you."  I made my best attempt to calm her with words; it seemed to stop her tears and she went back to cutting the tips off the string beans.


Guests began arriving, it was total madness.  Nothing was ready.  Everyone congregated in the kitchen and wanted to talk to me.  Ahhhhhh.  I lost total control of my kitchen.  I let people help.  I got more behind.  Screw it.  Let's just have fun, who cares if nothing is ready at the same time.

The clean up that I needed to do the day before threw off my schedule.  I've learned that Care Giver's can't be married to plans when a bladder or bowels let loose on the floor.  Some things just need to take precedents and cleaning pee and poop always comes first.

Maryann arrived.  She saw my face, we hugged and she busted into tears.  We rocked and hugged, I assured her that everything will be OK, she's back with her Dad's family, his dream has come true.

We were sad that Uncle Al couldn't be here.  All of us were looking forward to seeing him in the big room downstairs, just like 2 years ago, before my mom took her turn for the worse, requiring all of my time.

Chaos turned into lots of fun.  I let go of my perceived ideal of what my Thanksgiving Dinner should be like for my guest and I enjoyed my family.  I missed all of them so much, it's been quite sometime since we hosted a party.  Joan, April, Amy, Dewey, Rose... all of my relatives that always come, relatives that I've enjoyed throughout the years.

Uncle Al's little princess was so darn cute, high heels and all.  "Look Sue, I have high heels!"  She shrieked in her little girl voice.

The generations are shifting, we are all moving up the ladder of life, making our way toward our place in Heaven.

My cousins and I, we are becoming the next group of seniors, one by one, the march of time progresses as our parents generation fight to prolong their last days on Earth.

Children were running around, giggles and laughter echoing through the house, restoring life that has long been absent from our home.  The children, restored the balance that we always enjoyed over the years.



Uncle Al's Princess, she made us laugh.  Her imagination is beautiful.  Talking into a hand mirror, laughing and giggling, playing with my cousin's little 2 year old man, grabbing him like her mom did to my brother Marty decades ago.

Skipping down the hall she exclaimed, "I'm going to Aunt Jo's room to play the piano!"  It was awesome having children here, they filled my dying heart with life.

Our Thanksgiving, it was bitter sweet.  Family was gathered, love filled the air, hugs and laughter shattered the sadness that had been looming for far too long in this household.  Family.  We need family to get through the rough times.

This holiday, I learned that petty arguments which separate families are ludicrous and do nothing but cloud the truth.  All that matters is being together and loving each other for who we are.  Just like my dad always taught us, family are your only true friends.  Thanksgiving Day, it has come and gone, but the memories and the love still linger.

Love is the answer, it cures all troubles and it can begin with you.  Rise above the BS because to miss out on family because of anger toward something is short sighted.  The only ones who suffer are the folks who refuse to let it all go and just love.

I adore my family.  I feel blessed to have so many people to love and be loved in return.  Life is too short because one day the ones we love will be gone and all we will have are memories.  What memories will you chose to have?  There's still time ... but remember, the clock is ticking.

Happy Thanksgiving to all my family.  I love you all and thank you for the memories.

Here are a few more pictures of family love in action...

The lesson I learned is all that matters is love.

I love my family... ALL OF YOU!

XOXO

Sue