She Was An American Girl

The Long Goodbye

The long goodbye has come to an end.

October 8, 2012, I think it was around 2 pm, my mom took her last breath in my home, in her bedroom.

Everyday, I see her laying in her hospital bed that was in her bedroom, looking as if she were sleeping.  When I saw her, I immediately knew she had passed even before I walked up to her to check.  Everyday, that is how I remember her.  I try to remember her the was she was before...a week before...a month before...a year before...etc., and I just can't.  This is all I see.

(If you have pictures or videos of my mom during this "hospice" time through the time of the memorial service, could you please send them to me, e-mail them to me.  I would appreciate it so much.)

I'm sorry.  I'm afraid I will be bouncing around with my thoughts and memories as I share them with you.  This is something I need to do, though.  Everyday I tell myself, I need to blog.  I need to update the status of Mom.

Date taken:  10/4/2012

I think it was at the time my mom went with hospice and people started coming to help me is when my nervous breakdown began.  Everything was being done for me to maintain the house while we cared for Mom.  It was three months when I finally started to cook a little and clean my house, myself.  This wasn't that long ago, just a couple of weeks ago that I became independant again..

Although I added a link, here, to the book, The Long Goodbye, I have never read any books and have read very little material on Alzheimer's.  In the beginning I did, to learn the stages, etc.  But, I could not bare to read one extra word about Alzheimer's because I was living it every day of my life for the past eight years.  Eight years IS a long goodbye.  I wanted other people in my life to read these books so they could appreciate and understand what I was going through daily.  It was so difficult for me to articulate without sounding angry and bitter.

I must say, the message boards at Alz.org have been very helpful.  Again, I didn't frequent them just to read up on others.  I, selfishly, went there whenever I had a question or needed to vent and I always received such great support, understanding and actually solutions to whatever problem I was going through.

As I look at this picture, I smile and remember some very sweet times during hospice.  She was so vulnerable and easy to care for.  And, of course, having 1-3 extra women here 24/7 to share the full experience made life so much more bareable. 

I see now how much different life would have been if I just had one other person caring for Mom as much as I did.  Not to diminish the time and EVERYTHING my son, Ryan has helped with.  Ryan did as much for my mom as I did.  I mean, he got down and dirty with cleaning her up after a messy diaper.  But it was either he or I caring for her, not two people working together at the same time to care for her.  I truly believe it's a two person full-time, around the clock job.

As I close for tonight, if you know anyone caring for someone with Alzheimer's, probably with any health issue, I suggest to go over there and just dive in and help.  Don't take no for an answer.  Clean a bathroom, do a load of laundry, bring a casserole.  For those of you who did this for me, it was absolutely priceless.  I, sincerely, thank you from the bottom of my heart.

Bare with me as I continue my memoirs through this blog.

No More Food

I think we've reached another "mile stone", for lack of better term.  She doesn't want to eat and we can't make her, as much as we try.  This is the first time we're letting scheduled meds go by.  Very tough night.

Four Women

Four women gathered together to help the matriarch die...the most beautiful thing I've seen in my life.

911-2012

Tuesday, August 28, 2012  Doris, Jennifer and Angela continue to clean feverishly.  The house will be sparkling in every single corner before long.

Mom had a fever today, but it came down with proper measures.

We had no visitors today.  I got new tires and made a long overdue trip to the pharmacy for myself.  Big outing.  Big, big, big!

Tomorrow, my daughter gets here.  Weeeeee!  It's been over a year since I've seen her.  I CANNOT WAIT!

911-2012

I had to write this down to get my thoughts straight, so I thought I'd share them with you.

 

Thursday, August 9, 2012 

(evening)  Mom has a bloody diaper so I call 911 to get her to the emergency room.  Earlier that morning when she woke up, she got out of bed, walked around her bed and fell.  When I heard her, I went  to her room to find her on the floor with her head toward the closet and her feet out by the bed.  She was moaning in pain.

At the ER, they scan her intestines and run tests and find colitis and a UTI.  They also find a pelvic fracture but neglect to inform me about it.  They admit her to the hospital and start antibiotics.

Friday, August 10, 2012 

After 24 hours in the hospital, she is transferred to a nursing home, Vista Cove.  They are not clear to me why they are putting her in a nursing home.  They vaguely tell me so she can rest and recover.

Once the transfer company comes to get her from the hospital, they ask me about a pelvic fracture.  They want to be careful with moving her.  This is the first I hear of the pelvic fracture.

The doctor at the nursing home tells me she will have to have ‘transfer therapy’ before she goes home.  Transfer therapy is retraining her how to get in and out of the wheel chair.  I scoff at this because she didn’t know how to get in and out of the wheel chair before.  How is she going to relearn it now?  Later, I learn that Transfer Therapy takes months.  Insurance will only cover the nursing home until Monday, August 13, 2012.

Monday, August 13, 2012  When it’s time to take her home, they offer no assistance in getting her out of bed or advice on homecare.  I have to bring my own wheel chair to transfer her.  I am VERY anxious about moving her, putting her in the car and caring for her at home.  Conveniently enough, they say she can now be moved and put in a wheel chair just like before her incident.  This, after a weekend at the nursing home not moving her from her bed at all.

Mom is recovering quickly.  By Sunday, August 19, 2012, she is back to her old self.  She’s getting up twice a day for two meals, eating well and chattering away.  She’s doing so well, I post about it on Facebook.

The next day, she’s back in a slump, not eating very well.

Tuesday, August 21, 2012  I call 911 because she has a fever and is not responding to me even though she is awake.  She will only take water when I fill up a straw and drop it in her mouth, but she wants it terribly.

In the ER, they find a UTI again.  They give her IV fluids and antibiotics and admit her to the hospital.  The next morning the doctor recommends I bring in hospice.  I agree, but have no clue what that means.

Each time I have brought her in the hospital they ask me if she has an advanced directive.  I say she does not.  They tell me that my family and I need to discuss it and get it in writing.  This time I have Doris call the boys so we can come to an agreement, just so we can have it on record for future reference, so the doctor doesn’t have to scold me again for not having it.

Wednesday, August 22, 2012  When I go to the hospital I sign the DNR form and meet with hospice.  I have no idea what hospice is, what bringing in hospice means.  Nothing.  I’m clueless.  I’m learning as I go.  One thing they tell me that is a huge weight off my shoulders is that they will be responsible for transporting my mom home.  We are so grateful for this.

By 7 pm she is home in her own room.

Thursday, August 23, 2012 

The circus begins….I don’t know if I’ll remember in the right order.  I wasn’t sure who was who and what job they did.  Diane, the RN from hospice comes to check in.  Angelica, the aide, comes in to bathe Mom.  Ron, the pastor, from hospice comes in. I don’t really click with him.  He’s too flowery, too showy.  I ask if he can hook us up with a priest and he says he will.  I think it’s Diane, the social worker, from hospice, comes in.

Lyndsey and Dick came over.  Lyndsey brought me a vente, White Chocolate Mocha Frappuccino from Starbucks, bags and bags of groceries, some comfort food, some healthy goodies and everything in between.  To top it off, she washed all the dishes in my sink-a task each of us always avoid. She helps feed mom and we both (Lyndsey and I) learn to change mom’s diapers and clothes the most efficient way from the nurses that come by.  Tommy and Martha came by for a visit. 

Diane, the RN, says she called in some medication that will be delivered at midnight to my house.  I wait until 12:30 to call the hospice company to find out if I can go to bed or should I keep waiting for the delivery.  Come to find out, the nurse never called in the prescription.  It will be delivered the next day.

Friday, August, 24, 2012  Bob, Sally, Kathy, Joe, Caquito, Rob and Terry come to visit.  Kathy and Joe brought the biggest casserole I have ever seen.  We were very concerned it might not fit in the oven.  But, it did…barely.  And let me tell you, it was delicious!!!  Even though it was very large, it didn’t last very long.  Rob and Terry brought a huge tray of cookies, a variety of all the flavors.  I’ve had cookies for at least three meals already.  Forget about the snacks in between.  Billie, Michael, Andrew, Mary and Cathy come with another huge load of groceries, filling the freezer, refrigerator, cabinets and countertops. 

Angela flies into Orange County at 4 pm from Virginia.  On my way to pick up Angela from the airport, I get a flat tire.  Luckily, Bob, Sally, Joe and Kathy see me pull off to the side of the road.  They pull over to the side ahead of me, back all the way up and change my tire for me.  I head back on the freeway to go to the airport and I wasn’t even late to pick up Angela.  As I’m waiting for Angela to get her luggage, she says it will be a bit because the electricity went out in the airport.  We just had to laugh.

Angelica, the aide, came to bathe Mom.

Saturday, August 25, 2012  Doris and Al get in around 3:30 am Saturday morning after driving from Florida.  Nita, Pat and Marisa came to visit.  Manuel’s head is spinning from all of this family so he pick’s up his daughter, Kathleen, and goes on a bike ride.  They both come back here and Kat hangs out here for the evening.  We received a ginormous fruit basket from Karen and Wayne Hightower and family.  Very sweet and aromatic. 

Sunday, August 26, 2012  Jennifer flies into Ontario from Maryland @ 11 a.m..  Doris cleans my living room floors, shiny and sparkly-like they should be.  Billie, Michael, Andrew, Mary, Cathy, Michelle, Katie, Giovanni, Dick, Lyndsey come over.  And Michael’s feet don’t turn black as quickly as they did the visit before because of the clean living room floors.  Lyndsey brings sandwiches from Cortina’s-Italian subs and meatball sandwiches (the best I’ve ever had) along with caprese salads, 18 canoles,….cookies…enough to keep anyone from going hungry all day.  Doris, Jenn and Ang go shopping for anything and everything else we might need.

Monday, August 27, 2012  Still in my pajamas, Mikie and Susie are over to visit with my mom.  I was in my pj’s until late in the day….they didn’t necessarily come early.  Later in the day, Nita, Pat and Marisa come over.  They bring sodas and chips for the food  pantry.  Jennifer and Angela each take one bathroom and clean it from top to bottom.  A gigantic task!  The priest comes over, unannounced, and gives mom a blessing.  Mom gets a fever of 103 degrees.  We cool her down with a cool cloth and ice chips.  Diane gives her a Tylenol and the fever eventually subsides.

Elvira, the aide, came to bathe mom.

Diane, the RN, came to check up on Mom.

Jennifer and Angela go shopping for more necessities. 

Sitter Search

My boyfriend, Manuel, rubbed the knot out of my neck this morning.  I have, litterally, been in pain for at least a month but didn't want to bug him to rub my neck.  But, now that he did, it feels great!

Tomorrow we are going kayaking.  This will be M's first time.  The weather is going to be GREAT.  I'm so excited for this.  We are going with a Meetup Group, there will be about 30 of us going.

A couple of nights ago, M and I were able to sneak out of the house and go to our first "Bike Night" on his Harley.  It was at the Lucky Greek in Corona.  I happen to win a pair of Lego Land tickets but they expire July 2.  Luckily, I was able to get a sitter and we'll be able to go on Monday.  I love Lego Land and their tiny little cities built out of Legos.

Lastly, I've had this river rafting trip planned for the following weekend.  Along with Jessica, we are going with a Meetup Group to Kern River to ride the rapids.  I've been having a REAL DIFFICULT time finding sitters to fill each day.  I was JUST about to sit down at the computer and start making calls to services to see if I could get a sitter for the last day that needed to be filled, Saturday, when I got a text from someone in my Caregiver Text Group saying they are available for Saturday if I still needed someone!!!  OMG, what a relief!!!  You don't know how much stress was taken off my shoulders just then!

I'll try to post some pictures of some good times this week....of not, then the following week.

Happy Birthday, Mom!

Today is Mom's 82nd birthday.  It's been a rough Mom's birthday week for me!  For one reason, for the obvious reason, it's so sad that Mom turned 82 today and she doesn't even know it and there was no celebration for her.  I just feel meloncholy about it. 

Manuel and I told her "Happy Birthday" all day long to remind her.  Manuel asked her how old she was.  Each time she was a different age, from 31 to some rambling words.  That kind of made her happy.  Her brother, my Uncle Herman and Aunt Betty called and we did a speaker chat.  She did okay with that for about 30 seconds.  It was good.

The other reason is that it's been a rough week is because my body has been beat up!  This week, I came into Mom's room to find her on the floor.  She must have fallen out of her bed.  Manuel checks on her when he gets up early in the morning so I know she hadn't been there for too long, but it's still disheartening to know she had fallen down and couldn't get up.  I didn't know where or how to start to get her up, but once I did, I realized I hurt my back.

A couple of days later, I was getting Mom out of bed.  I have to physically sit her up and stand her up from bed.  This time, for some reason, her legs gave out and she went down to the floor.  I was holding her so she didn't fall.  I more or less had to set her down.  I tried to get her back up on the bed but just couldn't muscle it.  Manuel had just left to run some errands.  Thank God Ryan was here, I was able to get him up and he helped me get her off the floor and I was able to continue to prepare her for the day.  But, again, I strained my back as she went down.

Then this morning, as I do every morning, I was cleaning her up in the bathroom.  As always, she holds onto the towel rack to help her stand while I clean her, but she fights me every step of the way.  As I was bent over cleaning her she let go of the rack and landed on my neck and really tweaked me.  The pain has been traveling down my right side all day.  I'm stiff and sore.

I'm desparately looking for some live-in help.  I still believe I am doing a better job than a home would do.  But, I do need some help....and I do need a life!  I want to be able to go out to dinner without a major production in getting a sitter.  I want to be able to go away for a weekend without litterally making my ulcer bleed because I can't find help for a day or two.  I've been doing this a long time....over 7 years.  It has certainly taken a toll on my life. 

Wish me "luck" in my search for a reliable live-in. :)

(18 days)

 

Day 6

Day 6  Symptoms are somewhat milder except for the anxiety.  My anxiety level is extremely high.   I just want to go to bed and wake up when this is over.  Depression is setting in.  Obviously no energy and no motivition.  I'm very irritible.

I did get up and take a shower.  Had plans to take a motorcycle ride with Manuel to return some items he purchased  a long time ago.  Just something to do to get out of the house.  Just as I was ready to leave, Ryan got in his truck to go to work.  My plans were blown and we were stuck at home for the rest of the day.  Good thing, I guess.  I didn't feel like doing anything anyway.

Good night!

Go Ahead...Judge me. It's Gonna Happen Anyway....

I don't even know which day this is.  Is it my fourth day clean or my third day clean?

I'm not even sure how  many times I've tried to get clean once and for all.  I can say at least three times and I meant it with all my heart every time, just as I do this time.

This time I've gone completely cold turkey.  I've had no help or support through my medical insurance.  I've had to go through the pain, discomfort with no comfort meds at all, all while taking care of my mom.  Pure hell, I tell ya!

It's expected to last 7-10 days in all.  I, sincerely, can't wait to be back to my crazy ol' self   Yes, my normal self is crazy!  SORRY!  LOL

Day 1  The first day, I'm feeling fabulous!  I'm thinking, 'I can totally do this!'  But, I knew darn well it was the honeymoom period.  So, I continued to try to get as  much done around the house and for the household, while I could.

Day 2 The second day, I started to feel a bit crappy.  started laying down in bed a bit more but still participating in the kitchen, etc.

Day 3  By far the worse day ever.  My skin hurt from head to toe.  Nobody can touch me.  Nothing can touch me.  My body hurt, my muscles, my bones, everything.  I had a very bad head ache.  My eyes were burning, they were on fire!  I had been on the phone trying to get help for detox with everyone I could think of; doctors, psychiatrists, health insurance, numbers Blue Shield gave me to call to get help.  2 of the 4 numbers did absolutely nothing with substance abuse programs.  The other two had inpatient detox programs that I do not have the priveledge to attend since I am the sole caregiver to my mom, who is in late stages Alheimer's.  There's nothing available for me until after detox and I'll have to pay like $1,700 out of pocket for the therapy.  :-\

Day 4  Still have some skin crawling.  My head hurts BAD.   My lower back hurts BAD.  I have bouts of anxiety where I was finally perscribed Atavan.  For today, it doesnt seem to help.

Sorry for the typos.  Wasn't able to fix it via my Xoom  I'll go in and fix it asap...Please leave a comment...good, bad or indifferent about this post.  lotsa love to you!!!**

**Fixed the typoes....might make more sense now.  Thanks for listening. :)

Fire in the Hole!

I turned the oven on to get it hot and ready for the tray of chicken enchiladas I was making. As I was making them, I smelled something burning. I figured o e of the boyz, Ryan or Nick had spilled something on the burner.

Suddenly, Ryan came in throwing open the oven door to find a magazine rolled up and tucked under the electric burner. It was in full flames! Once it burned out, I swept out the ashes and put my enchiladas in.