It's like a car...

After a lot of discussing, soul-searching, phone call making, second guessing and praying, we have decided against the board and care for Mom... at least at this time. I tried so hard to believe that it was the best thing and, bottom line, I don't think it is.  I have felt an over-whelming sense of doom and apprehension since Friday when we toured the facility.  I feel like I was about to buy a used car, not because it was the right used car but because I am in desperate need of a car.  And that any car would do at this point.  But, this isn't an used car.  This is a person.  And, I need to be sure.  While I liked the Board and Care, this feeling comes more from the fact that in order for the owner to help us with the financial arrangements, I would have to sign a contract saying that I will not take Mom out of his facility. I respect the man's reasons for the requirement, but I cannot believe that is what is best for Mom.

We are exploring other options.  And, while I know that placing Mom in a home is ultimately for the best, we will not be doing it until we find the right home and the right conditions.  I would never sign a life-time commitment contract for a car and I won't do it with something as precious as my mother's life.

More random thoughts...

More random thoughts:

-Mom has been fairly calm today.  She woke up and started looking at the family pictures on the walls.  She hasn't looked at them in months.  But, she recognized that they are family. 

-She has called me by name several times in the last couple of days.  It is a foreign sound to me now and I actually have to stop and think about the fact that she is talking to me. 

-I have called a few people, family members and friends, and let them know that we have decided to place Mom in a home.  Most all have taken it well.  I upset a couple of people, but I think it is the reality of the disease and not the decision.  Either way, I know in my heart that this is what is best for all and especially Mom.

-Lots of busy work coming up this week.  Phones calls, paperwork, more phone calls and getting Mom's things together. 

-I'm still having to say no to things that I want to say yes.  But, the girls and I are talking about doing things with a "when we" instead of  "if we".  And that is exciting. 

-Lots of work ahead of me.  This house has been neglected for too long. 

-While I see the light at the end of the tunnel, I am not feeling any relief yet.  When the paperwork is done, she is in and adjusted, then, maybe then.  

-And last but not least.  I have to go job hunting.   I never imagined that I would be broke and unemployed at 54 years old.   But, He has carried me this far and I have faith that He will continue.

The light...

 This is what the light at the end of the tunnel looks like.

 

We loved the board and care that we looked at today.  It was everything that we have been wanting.  Unfortunately, it is out of Mom's price range.  Way out.  But, the couple who own the facility want to work with us.  He will help me fill out the paperwork to get Mom qualified for the assistance from the Veteran's Administration that she is qualified for because Dad served in Korea.  But, the amazing part is that these kind people will accept only what Mom can afford until she qualifies.  They do not expect anything more than that.  What an incredible blessing this will be. What amazing people these two are.

As we were asking questions and touring the facility, I noticed how calm the other residents were.  And it hit me.  I realized that a large part of Mom's agitation is us.   Each day in this house is typical of any home with children and teenagers... hurry here, commitments there, homework, shopping, last minute projects, etc.   We have forced her to fit into our lives when that is not what she needs.  She needs a schedule and routine. And, that is exactly what this facility will offer her.

But, the absolute best part was Mom.  When we arrived she was agitated and angry.  We spent about a half an hour there.  In that time, the wife talked, prayed and spent time with Mom.  By the time we left, Mom had calmed down.  She didn't want to leave the woman.  As we left, Mom went over, gave her a hug, told her that she didn't want to leave without her and that she loved her.  I was so relieved. Even Mom recognized that she has found a home.  I know that this will be the absolute best thing for Mom.  I think she will be happy there.  The light is still a little ways down the tunnel but its beauty shines clear and bright..

The power of kindness...

I find it interesting that even though I never signed on the dotted line or sold my soul to the devil, I cannot legally walk away from being a caretaker.  There is no reason good enough or acceptable for the abandonment of this position.  And, I suppose, that is a good law.  I know that there are many unscrupulous people who would abandon their parents in a heart beat if served their own selfishness.  But, I am not one of those people.
 
Yesterday, I wrote that I am done. Unfortunately, the insurance company is holding my life in the palms of their hands.  They have the power to decide how much I will give.  They decide how far my family must bend before completely breaking.  They decide how low I will go. They are too powerful.

So, first thing this morning, I showed up at the ER and, basically, threw myself on their mercy.  I  begged them to help me, help Mom.  I told them that I could not do this anymore.  And that I could not care for her any longer.  The only way that they would be able to place her in a nursing home was if there was something wrong physically that would require a hospitalization for 3 days.  Simple.  But, other than Alzheimer's and some bruises from falling, my mother has a healthy body for a 78 year old.  So, admitting her was taken off the table almost immediately.  And, I lost it.  I don't think I have ever felt so desperate and helpless in my life.  I was devastated. 

The hospital, however, did not send me on my way.  Everyone that I came in contact with offered me support.  Several people who were not assigned to us, stopped by just to offer kind words and encouragement.    When I would express any type of regret for taking a bed from a sick person or time from another patient, I was told that this was my turn for help.  They understood that I had reached my limit and they offered a hand of compassion and kindness.  The social worker worked non-stop for many hours trying to find a solution.  She arranged for the owners of several privately owned facilities to come talk to me and explain my options.

Tomorrow, we are going to go tour a facility.  And, whether we end up placing Mom there, or not, I know I have just a little more strength to keep going.  It is amazing what a helping hand offered with genuine kindness can do to energize an exhausted soul.

I will be positive...

I am doing better in my latest attempt at staying positive.  With each set back, I have responded with a positive spin on it much more quickly.  I am truly thankful for the help that I have received, so far.  Every bit of it is more than I had just a few short months ago.

I accepted the insurance company's decision to try in-home care before they would approve placing Mom into a facility.  I even accepted their in-home care approval letter for ONE day of nursing with the thought that one day was better than none.  Plus, I figured that the one day that a nurse was here would be enough for them to see that she needs better help than what I can give her.

I have watched the meds slowly become more effective.  She can go a couple of hours now without any physical outbursts or extreme meltdowns. But, a couple hours a day of relative peace (she is still negative and nasty even with the medications) is not true peace.  However, it is better than it was.  Her medications have never made any difference in the late afternoon when the cursed Sundowners kicks in.  But, the positive there comes from the knowledge that she will soon be tired and want to lie down for a couple of hours.  It still won't be quiet, but the noise will be in another room.

But, these drugs that calm her and/or allow her a complete night's sleep (and us a restful night, as well) cause dizziness.  We have exchanged the horrible outbursts and violence for her falling.  Now, I am on alert nonstop for the dreaded scream that she has fallen.  A sound that I have heard at least a dozen times in the last month.  Each time that we pick her up and brush her off, we are thankful that nothing more serious has happened.

She fell at the daycare and took down an aide who was trying to help her.  She came home with a huge goose egg and bruising.  Because of the falling, the doctor took her off of the medications.  I understand that that was the right decision.  I know it is a matter of time before Mom seriously hurts herself when she falls, and that is when, not if.  I will attempt to be positive as I wean her off of the drugs.  I am sure that I will be chipper as we spend the next 3 months with no drugs to calm her as we wait for her neurology appointment.   I will try to look forward to the call that tells me that the daycare will not allow her to attend if she is not on any medications to calm her. 

And I will be positive when I tell you that I am done.  I have nothing left to give. 

Walking through the storm...

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”  -Haruki Murakami

I saw this beautiful quote on another blog and it really resonated with me.  It instantly made me think of this journey that we are taking courtesy of Alzheimer's.  But, it means so much more.  I believe the meaning of life itself is the journey...  all of the choices that we make... the lessons we learn... the people we influence, positively or negatively... how we treat others when there is no obvious reward. All of these things are in our power and they ultimately determine the meaning of each of our lives. 

So, I have to ask myself, what lessons am I learning right now?  Will my children see compassion in my example?  Will I remember this time in the storm as a positive lesson?  Or will the overwhelming negativity of the situation win out?  Are the choices I am making now, made for the kindness to another person or are they made out of frustration and anger?  And, will I walk out of the storm a better person? 

Birthday wishes...

This weekend is bittersweet for me.  My youngest daughter, Katie, is turning 13 tomorrow.  I am so thankful for her laughter and joy for life.  But, it makes me sad to realize that she has dealt with Mom's disease for most of her life.  She doesn't remember when her Gran loved her and when Alzheimer's wasn't making decisions for us.  It is on days like this that I truly realize how much my children have sacrificed for this disease.  Katie has never had a sleepover or even a friend over to play.

Tonight, she is with her sister playing miniature golf.  I am thankful for her sister, Kylie, and that she is celebrating this milestone in her life.  But, I want to be a part of it.  Weeks ago, when we were trying to figure out what we could do and how we could make it work, I suggested several options.  But, they all involved someone staying and someone going.  Katie broke my heart when she cried, "It won't be my birthday if you and Kylie aren't there at the same time."  Her birthday has become a fragmented celebration, with parts squeezed in where they fit the best. 

So, for now, I have to focus on the future.  As much as I want to, I cannot take back this time and make it better.  But, I can look forward to a time when this disease releases my mom in peace and my girls and I can be a family again.  Alzheimer's is my test.  My girls are my life. 

Daycare update...

This morning there was a problem with the transportation getting Mom to her day at post-school (if it's pre-school for a four year old then it must be post-school for a 78 year old).  My choice was to either keep her home or drive her myself.  Yep, I immediately drove her there.

First off, Mom slept the whole trip there.  Now, if we had been at home, there is no way that she would have even been relaxed, much less sleeping.  We walked into the daycare and she just left me standing there in the lobby. She knew where she was and where she wanted to be. And it did not include me.  As she was going down the hall, she was asking for her friend... by name! 

I stayed for a few minutes to ask the staff how Mom has adjusted.  They told me that at first, she tried to leave. A lot.  And that she would also become very agitated and delusional in the afternoons.  But, now she socializes and tries to help the staff with little tasks.  They said she walks back to the exercise room and does some physical therapy.  Or she'll stop and watch people in the computer room.  Sometimes she goes out and sits in the gated courtyard in the sun. 

All in all, she seems to enjoy her time there. I am happy that she (and I) found this outlet.  Now, I just need to talk the staff into having sleepovers.

Psychological warfare...

Today I am remembering the US Army's 1989 invasion of Panama to depose, the then dictator, Manual Noriega.  He escaped capture, for a time, by declaring Holy Sanctuary in a church.  Because of treaty agreements, the Army could not just go in and get him. So, they attempted psychological warfare by blaring non-stop rock music at the church. He surrendered after 10 days.

I am remembering this today because I am trying to understand how Mom's constant litany of complaints and whining could wear me down so effectively and thoroughly.  This morning, from the time she finished her breakfast of 2 eggs, sausage, a buttered, jellied biscuit and a small cup of applesauce, she complained that she hadn't had anything to eat in 2 days.  She whined and complained, non-stop, for two straight hours. She griped so long that it the starvation time frame became 3 days.  I would be less than honest if I said that it didn't frustrate me.

I then made her a sandwich and served it with more applesauce, a meal that she usually devours with minimal complaining.  After approximately 20 minutes of listening to her gripe about the food and that no one ever feeds her, she finally got up and brought her lunch to me.  When I pointed out that she was hungry and that she had asked for the food, she got even nastier and said that she never asked for that and had, in fact, made it for me. The same "slop" that she refused to eat had become an offering that I should relish. 

And I lost it.  The last shred of my patience was gone.  So, I find myself sitting here thinking of a deposed dictator who lasted 10 days of non-stop, intolerable rock music blaring at him.  And I wonder... could I hire Mom out to the military to bring North Korea to its knees?

A picture is worth a thousand words...

... yet, I am speechless.

Mom's perspective...

I mentioned before that I would like to write a blog entry from Mom's point of view.  I am trying to understand how it must feel to be trapped in a brain that just doesn't work anymore. That is what I do.  I put words down, words that allow me to wrap my head around an idea that is bigger than I am.  But, I get stuck trying to figure out how her brain jumps from one subject to another without any obvious connection.  After many attempts, it hit me.  I can't write it because there is no connection, no logic. Her brain needs neither.  It reacts on the moment, with no consideration of how it arrived in that moment.  But my brain still needs a path, an explanation of how I traveled from point A to point B.  And for someone who doesn't remember the answer to the question that was asked 10 seconds ago, there is no path.

Even with all of the frustrations, disappointments and anger that I feel towards my mother on a daily basis, I still feel an overwhelming sense of sadness and compassion for her.  What hell it must be to be a victim of this disease.  As frustrated as I am with her behaviors, her perspective must be heartbreaking.  To have someone, that you don't know and do not trust, directing your every movement must be scary.  But to have a virtual stranger yell at you when you honestly don't know that you have behaved unacceptably would have to be terrifying.  Her only reality is that she is aware of this moment.  What happened a mere heartbeat ago never happened for her.  Those actions are my reality, not hers. She sees only now.

So, there will be no entry telling Mom's perspective of this journey.  I will have to accept that these words I write, that allow me to make sense of so much, cannot make sense of Alzheimer's Disease. 

A snack with friends...

Mom was eating a snack of sliced bananas on toast. a treat that she has always enjoyed.

As I am cleaning up in the kitchen, I hear, "Oh no!  Why would someone do that to you?"

I peeked around the corner as she was picking the bananas off of the toast and saying, "You were my friends and someone did this to you. I'm so sorry."  She then ate her friends.

Don't judge...

Mom was never a great housekeeper.  Not even close.  She used to say that people came to see her, not her house.  Since her illness has set in, it has been surprising to watch her obsess about things on the floor.  Tables, counters, bookcases, drawers and cupboards can be stacked with stuff, but do not let her see a piece of lint on the floor.  Wandering through the grocery store, she will stop to pick up an empty gum wrapper.  At the doctor's office, she will pick up the tab off of a band-aid.  Walking through a parking lot, she will stop and try to pry a piece of gum out of the asphalt. On a good day the trashy items will end up in a trash can.  On the bad days they are stashed in a drawer, dropped into the dog's food, shoved into a pocket, or, the worst to date, I am forced to dig a mound of trash out of the toilet.  Yes, it's gross, very gross, but it is also very funny. 

So, as Mom was being helped out of the van today, I see the driver's sides shaking.  Maria is trying very hard to keep a straight face.  It seems for the entire ride home, Mom has been trying to pick up a coin off the floor of the van.  I peek and the coin is a bolt, set into the floor.  And Mom is trying to pry it off of the floor. The driver's ability to keep a straight face was very impressive... right up until I told her about the ball shaped prism hanging in the living room window.  The same prism that shines hundreds of rainbows all over the living room every afternoon.  Rainbows that Mom can spend endless amounts of time trying to pick up up off the floor.  Yep, it is just as fun as that laser you make your cat chase.  Don't judge. :)

The adjustment...

Today Mom started her third week of daycare.  She's been getting in the van each morning, for the most part, with no issues.  The hardest adjustment has been the fluctuating pickup times. They vary as much as an hour and a half.  As frustrating as not having a definite time of pickup is for me, I understand that they are picking up other people whose behavior is as unpredictable as Mom's.  So, I will just be patient with the situation.  And as my NCOIC (boss) in the Army used to say, I will think of the benefits and ignore the rest.

After a rough night last night, I was hoping to take advantage of Mom's absence with the first true nap that I have had in a very long time.  I had just dozed off when, you guessed it, the phone rang. I had the same feeling upon seeing the daycare listed on my caller ID as I do when I see my daughter's school number when they call.  Usually, it's a feeling of mild panic and the quick thought wondering how quickly I need to get to school.  It turned out to be the nurse at the daycare wanting to know if Mom's meds had been changed.  It seems that she had her first content morning since she started attending.  And, because her medications have not changed, this seems to mean that she is adjusting to her new surroundings.  Hallelujah!  I have adjusted quite well and I am relieved that she is finding some peace in the situation. 

Unforunately, Mom's day deteriorated after the call.  She misplaced her purse and we all know that the world must stop and all inhabitants must find the purse before life can continue.  She was sent home with a "dummy purse" and the assurance that they have found her purse and it will be returned tomorrow.  But, I have to wonder how many times they have faced this same situation that they keep extra purses available.  

I leave you today with these two thoughts: 
- I find it ironic that Mom can interrupt my nap without even being here.
- In a very perverse way, I think it is in bad taste, but no less hysterical, that they call it a "dummy purse".