Urine and Grief

It seems my posts lately have all been urine related.  I am sorry if this offends any of the blog readers but there is not much I can do to pick topics these days.


We had several incidents this week at home.....interestingly, not many accidents happen while Gary is a day care.  We are not sure why but accident free days are accepted with glee.


Laundry seems to also be a hot topic because I do so much of it.  I cannot stand the smell of urine, fresh nor stale.  So, immediately following an "oops", I do laundry.


Weekends have now become stay-home-and-get-stuff-done days.  I make no plans to go anywhere as it is too taxing on me to take Gary away.  I have arranged for a caregiver one whole Saturday this month so I can finish arranging the garage which was mostly never organized nor unpacked.  There is probably a large charity donation in the works.  I am looking forward to that day .....just so I can be free and have no ties. Just need to feel some personal accomplishment.  Sad, I know.


I am also thankful for a carpet shampooer.  One thing I will add to my personal resume is "carpet cleaning expert".  Just because one is good at a task does not mean they like it.


"Gary, why did you turn off the t.v.?  Gary, turn the t.v. back on, please.  Yes, I will show you how."


The conversations between us are very shallow now.  Today, I came downstairs after a nap.  I listened carefully for him to awaken.  I missed it until he was in the hallway with a dripping penis.  There is no recollection in my recent life of me running upstairs as fast as I did.  I managed to pull his diaper in front of the stream to stop the flow.  I screamed "stop!!!!!! but he was in a fog....not hearing nor reacting to anything." 


After cleaning the carpet, he was sitting on the sofa apparently feeling sorry for himself.  It is amazing what he does and does not remember.  He knew he had done something to upset me but did not know what.  I was emotionally overwhelmed and put my head in his lap and started to cry.  I did not know what to expect.  In the pre-dementia days, that would have invoked an "I'm sorry" and patting my head until I recovered. 


Not anymore.  He did not move his arms from underneath the blanket and just sat there.  He did say "Oh, my."  No other response was given.  I immediately felt like I was wasting my time licking my wounds and sat up, sucked in some air and moved on to another task.  Guilt is a powerful emotion.


I have turned to the emotion of grief in moments like this.  My true husband is not there.  In fleeting moments when he does show up....well, I cherish those.


Meanwhile, I fight the waiting-on-insurance battle to start the next round of Neurology appointments.....I guess I am still holding out for a miracle.

ESCAPING: not an option

I don't like myself when I am upset with Gary.  The thought that came to mind this morning was:  "The very man who spent years building me up and ensuring that I was strong and successful is the very man who is now tearing me down."  Some might say that is a selfish way of looking at the situation.

Well, in some ways it is selfish.  After all, he is the one suffering from a horrible disease.  He has lost functionality and enjoyment.  He has lost his career and all that implies.  He can barely write his name now. 

On the other hand, I am the one who wakes with him in the middle of the night to try to steer him to the bathroom to avoid accidents.  I change his clothes in the middle of the night when he doesn't awake in time and has a "slip". I shower and shave him.  Dress him.  Groom him.  Guide him.  Love him.  Discipline him.  Remind him.  All those things take their toll on the caregiver.

Yes, I have help part of the day but the weight of it all rides me all day, every day.  Even though I use work to escape and still enjoy my career immensely, there are times on a break, looking at photos in my office, or on a drive home that I cannot help but think about what ifs or what was.  It is a living grief process. 

I buy my own birthday presents, make all the decisions (have to get input from trusted folks rather than Gary) and live in what feels like a vacuum.  So many times, I just want to escape but I am too responsible. 

Getting an MRI with Valium

I get so frustrated with Gary sometimes that I want to scream....and I do. However, yesterday, I made it through without yelling, screaming or going nuts.


He was scheduled for an MRI at 1:30.  The doctor gave us a valium to give him prior to the procedure.  Part of the procedure is that one lies on a plank, head in a container and stillness is critical.  I knew that would be a problem due to his constant talking, wiggling, patting, drumming and whatever else strikes him at the time.


I gave him the Valium before we left home and as we drove to the office, I watched him starting to slide down the seat.  We arrived at the office and I managed to get him out of the car....painfully slow and always at risk of him falling asleep.  After checking in, the nurse told us we needed to get back in the car and drive through the parking lot to the mobile trailer.  Really? 


I got him back in the car after quite a struggle.  We drove to the mobile trailer, parked and then started the struggle of getting him out of the car and up the steps (about 8) and into the trailer.  It was like assisting a drunk person trying to walk.  All his weight was on me.  As we got to the top step, the technician came out and said that he did not have a waiting room and that we needed to wait outside.  He helped me get Gary safely back down the steps and I tried to walk him around the parking lot.  He walked like Tim Conway when he played the old man on the Carol Burnett Show.  The only difference was the reality of the moment.


I put him back in the car and waited.  He was groggy. After 20 minutes, the technician came out and helped get him to the lift on the side of the trailer.  He was quite helpful.


The near hour long procedure was performed with Gary taped to the board.  I was allowed to touch his legs and arms as necessary.  He fell asleep and started snoring so of course,  that was forbidden movement.  He got cold at one point and crossed his arms.  He crossed his legs.  He has a horrible cough and moved a tremendous amount. 


When done, the technician said that he thought the tests were okay but borderline due to the movement.  He assisted in getting Gary back in the car and he slept most of the way home.


Upon returning home, he slept most of the afternoon.  I had some quiet hours.  It was precious.


There are many feelings associated with losing a loved one to dementia.  He is still here physically and mentally, there is a  person there, but not necessarily my Gary.  It is some other form of a man. He doesn't think like him, nor act like him but he still knows my touch and tells me he loves me.


I feel anger.  Remorse.  Anger.  Pain. Grief.  Anxiety. Frustration.  Love. Did I mention Anger? Questioning.  Rage. 


I had my own frustrations this week.  I ended up skipping a Nursing Pinning Ceremony and went to Urgent Care with a piercing pain in my side.  They referred me to the ER for a CT scan.  Diverticulitis was the diagnosis.  I managed to get the prescriptions filled and am on heavy doses of antibiotics and am not needing the pain pills. 


This too will pass and life will go on.  While sitting hooked to an IV in the ER, it would have been nice to have my husband beside me or at least available by phone.  There was no point in even trying as he is just clueless to the emotion of others.  He still laughs and gets frustrated...the only way I can describe him is disconnected and distant.


What is next?  Only God knows.

I DON'T WANT TO BE STRONG!

I know people mean well, but frankly, I am very tired of hearing how strong I am. I don't want to be strong.  I don't want to be tested anymore. 

Don't misunderstand.  I am thankful that God has given me the strength to endure what we are going through as a family.  I am eternally grateful.  But, I am still human and I am sad, tired, grieving and still expected to rise each morning and perform at peak levels in life and work.  That is very hard to do....day after day.

I do believe in self-fulfilling prophecy, so it messes with me that I just said that I don't want to be strong.  That means that if I keep saying it....then I will lose that strength.  I certainly can't do that to myself.  Dammit. 

So, here I am.  52 years old with a 67 year old husband with Dementia.  Why?  I know the reasons.....there is nothing I can do about it. That pisses me off.  If my language offends, well, I am sorry.  Sometimes, I just have to be honest about it all.  I hate it. 

Yep, hate is a strong word.  I love Gary.  I hate the situation.  But, everyday I have to dig deep, move forward and draw on every ounce of faith that I have. God has put me in this situation for a reason.  He either has a huge purpose for me or an intense sense of humor.

"I can do all things through Christ who strengthens me...."  Yes, Ada.  Keep telling yourself that quote.....just keep saying it.

Melancholy revisted....

Today was Tuesday.  My day was to consist of taking Gary to his day care, going to a breakfast meeting with my team and then to a normal day of meetings.  Right before I walked to the garage, I picked up the new cd delivered yesterday and popped it in my car recorder to add to my collection.  John Denver Live.....wow, I'm not sure if it was a blessing or a mistake.

As John's smooth voice accompanied Gary and I down the hill from our house and through Anaheim, Gary sang along to "Rocky Mountain High", "Country Roads" and "Poems, Prayers and Promises".  He never saw the tears running down my face, but just kept singing.  I was experiencing total melancholy.  I knew it and tried to connect with the true emotion coursing through my veins.  I identified it as grief for having lost the man I married, grief for my former life as a College President for Heald, and shock of a new job, team and home. Some of the music I so relate to growing up in the 70s and 80s at the foot of the Blue Ridge Mountains in Virginia.  There is always solace in the valley where I was raised.  I was homesick for Virginia, for Sacramento, for Panama and for what "used to be".

I don't think my melancholy and grief have any correlation to my new life.  I am blessed to have one of the best Executive Director positions on the West Coast.  I have great new team and live in a wonderful place with loving family.  The two situations are just very different and both very real.

Dementia has changed my life.  Politics have changed the professional side of my life.  There is a reason for it all.  I know God has a plan.

As my day unfolded very differently than originally planned, I was shaken from my melancholy by a wonderful opportunity to join an executive meeting with the owner of our company and some other upper level, high thinking executives.  I had to be "on" and I've learned enough over the years to compartmentalize those emotions and perform.

During the meeting and later in the day, I was missing being able to pick up the phone and share my day with Gary.  He just can't understand an in-depth conversation anymore, much less empathize with any complex situation.  I miss him so much.  He is my partner.  Or he was.....the man that is here is very sweet and I am blessed that he is happy.  High maintenance, but happy. 

Melancholy is real but I refuse to let it interfere with my performance. 

Blog title change: Go to Your Corners and Come out Loving!

On Sunday, I was talking with a very dear woman whose husband is in an Assisted Living Facility with Alzheimers.  They have been married for eons of time (not sure how many years) and are now living apart.  She knows of Gary's dementia and sees him on a weekly basis.  She quietly asked me, "How quickly is he progressing?"  I answered that I am not sure how to answer the question compared to others but that he has declined but he seems manageable.

Today, I dropped him off at his CLUB and watched him stand at the door while an attendant came to let him in the locked environment.  We had a great breakfast immediately before with lots of very lucid conversation.  When he saw the woman, he lit up and went into "hug" mode.  She came out, hugged him and motioned to me in the car to see if I was ok.  I gave a thumbs up and he went into the building without ever looking back at me or acknowledging my presence. 

Months ago that would have devastated me, but today, not so much.  As I drove away I considered the conversation from last Sunday.  People who know others with dementia ask "how is Gary?" but i realized today the real question is:  How quickly is Gary declining?  Everyone except me seems to know that he will never get better.  I have been holding out hope and continuing with treatments, supplements, gimics with a private hope that someday he will get better.  He will not get better.  I need to face that fact. (Miracles excluded)

So, with that acceptance, I am now looking at behaviors that I have been participating in toward the end of "recovery".  What can I stop doing?  What angers me that shouldn't? 

One of the steps to grieving is acceptance.  Okay, check that one off.  I accept the fact that my husband has dementia.  Perhaps I should rename this blog from "Go To Your Corners and Come out Fighting" to "Go To Your Corners and Come out Loving".  I will change it. 

Perhaps this can assist us both in being calmer, less frustrated by expectations and overall, much happier.  For all you prayer warriors, I always request that you pray for God's will.  If its His will that today's acceptance is correct, I pray for more Loving. There is nothing to fight about in this situation.  We will not win the battle.

"What do you mean your brother died? Why is that?"

The minute I heard that my brother had died unexpectedly, my first thought was that I knew I had to go from our home in California to Texas for the funeral.  Second thought, do I take Gary or not?  The third thought was “Call Heather”.  I instantly knew that if Heather could come for a few days and stay with Gary that my trip would be smoother, more healing, less stressful and much easier on him. 

I called Heather and explained what had happened.  Her daughter is getting married in a few weeks and I hoped the timing was exceptional so that she would miss nothing related to the events but that she could assist.  Without hesitation, she said that she would come. 

I had been at the office when I got the news and after a few necessary phone calls, I called Gary.  Pre-dementia, he would have been my first call.  He would have soothed my soul, started making travel arrangements for us both, arranged for the dog to be boarded and done whatever necessary to get us ready for a trip surrounding so much tragedy.  NOT this time.  I knew, for the most part, I was on my own.

My call to Gary was very simple, unemotional (that accomplishes nothing but frustration for him) and fact based.  “Gary, I just received some bad news.  My brother, Mike died this afternoon.  We don’t know why but his wife found him lying beside his exercise bike dead.  I will have to go to Texas.  At this point, I’m not sure when, but Heather will come stay with you and I will go by myself.”  His response was a heart-felt “Oh, my!” followed by some basic questions.  Gone is the heart and brain that before the dementia would have wanted to comfort and protect me.  Somehow, faintly, I knew how my sister in law was going to feel in the coming days, weeks and years.  The husband is just not there anymore.

I swallowed my selfishness and was thankful that Gary was alive and remembers me.  Upon getting home that evening, I asked if he remembered our call that afternoon and what I had shared.  He did not.  “What do you mean your brother died?  Why is that?”  Throughout the evening, I tempered my emotion and repeatedly reminded him of my grief and angst over the coming trip.  I lost count of how many times he asked why I was so upset.  I bordered on helplessness and infuriation.  I did not really cry until I spoke with my niece, and ultimately, my brother’s widow.  I held together until I hung up the phone.  Then, despite Gary,  I sobbed.  That was really the only time during the whole experience that real tears flowed.  The rest of the trip, I was pretty numb.

In a couple of days, Heather came and I left for Texas.  It was hard preparing, running errands, packing and shopping with Gary constantly needing reminders of the “why”.  I got through it.

During the days following, I visited with family, extended family, friends and yes, the funeral home to see my brother.  Heart-wrenching.  I shared a room with my Dad and we were apart very little.  He is really an angel sent to earth.  He loved me, listened and provided his quiet, ever-present unconditional love.  I knew there was no comfort that I could provide for him.  Death hurts those left behind.  Period.

Each day started with over-the-night voicemails from Gary leaving messages asking about where I was, when I was coming home and various other things that really let me know that he had not retained the information of the death.  Many calls during the day were received. Every night consisted of calls telling him the same information.  Finally, I grew numb over him.  I lost my temper a few times. I even lost my temper with Heather when she reached out for me to call Gary as he was misbehaving.  It was right in the middle of our family dinner after leaving the funeral.  I was thankful that I don’t type well in text.  I was angry and curt.  I will need to apologize to her.  After all, she is human, too!

During my absence, Heather was a champ. Despite having fallen in the bathroom, hitting her head and having a severe headache for three days, she took great care of Gary.  Her patience is wonderful.  She views the task as taking care of two three year olds….only one of them is 66.  Gary is the same age as my brother who just had the experience of his heart stopping.  No heart attack….just stopped due to heart disease.

So, I am writing this as I fly home to my husband.  Someone asked me (dear Sharon) who takes care of me.  I responded that I take care of me.  In retrospect, that is a wrong statement.  I have so many around me that love me and assist with my well-being.  Thank you all. 

Gary will surely wonder where I’ve been.  It is yet unknown how I will respond.  Will I just hug him and say nothing?  Will I start with the customary “I Love YOU!” or what? 

Here is my task list next week: 

• Have a trust attorney review our wills, advanced directives and form our trust. (Ironically, I asked for a referral a few days before my brother died.
• Make cremation arrangements and pay for them for both Gary and myself.
• Make an appointment for a much-needed check up.
• Start the diet that I interrupted when I left for Texas.
• Make an appointment with Gary’s new doctor for an exam.
• Calendar a reminder to call my sister in law

Dementia is no fun, but it is better than what I just experienced in Texas.  Even though Gary is not fully the man I married, I still love him with all my heart and will be there until the end.

Melancholy and Joy

Gary and I went to Dinuba and back on Thursday to pick up Heather and Alexander for the weekend. She was kind enough to help us out while I went to a two day Leadership Retreat.  They stayed with Gary while I headed to the California foothills to assist with the Rancho Cordova Leadership Retreat.  

While I was gone, he called me many times and could not remember from one call to the next whether or not I was coming home Friday night, Saturday night or some other time.  Heather says she told him repeatedly but he just could not retain it.

I called him on Saturday morning before the retreat re-started and awoke him.  He said that he missed me all night.(Heather reported that he came in her room 6 times throughout the night asking various questions).

After I spoke with him, I realized how very much I miss him and I don't mean just last night.  I miss the man I married.  I miss the guy who could help me think through and solve complex problems.  I'm dealing with some pretty important decisions right now and I have to rely on acquaintances and Heather rather than my husband.  Processing is hard when I am used to having his insight.  She was very helpful in letting me process through some difficult decisions that I cannot share here. 

I spent alot of today NOT "being here now" at the retreat and feeling melancholy about the grief I feel over losing him, even when he is still here.  He still looks at me with such love and intensity but the whole picture is now missing. I am grieving a man who is not dead.  The pain is excruciating.

When I got home today, both Alexander and Gary were taking naps so Heather and I had some time to plan, process and discuss their moving in with us early next year.  Since she spent two days with Gary, I asked her feedback on his brain capacity.  She sees a decline since she was here a couple of months ago.  We agreed that he needs an assistant more hours than I had originally planned.  It will be expensive until she gets here. 

In the middle of our conversation about my grieving for him, I got very emotional and we both cried.  She sat in the chair with me and expressed that she too misses her Dad.  She never really knew well the Gary that I knew.  I am sad for us both.  The bond we are forging will be very strong a nd we can rely on each other.  She is the daughter I always wanted.

He realizes that they are coming to live with us and he is excited to have his daughter with us.  He may not remember that tomorrow, so the good news is I get to share the news with him all over again and watch him get excited at the thought. 

He is currently watching "Dora the Explorer" with his grandson.  Pretty cool.

A Morning Daydream

I took last week off to prepare the house for moving.  Gary and I spent the entire time together. I really got to see his strengths and weaknesses.  One thing learned, the calmer and less stressed I am, the better he functions.

He cannot handle stress, conflict or realizing that he is not thinking clearly.  If given a simple task and the freedom to ask lots of questions (repetitive questions), he can remain calm and function okay.  Most days....impossible.

He is very disagreeable when it comes to hiring an assistant.  I need to do final paperwork but will do in the morning.  An assistant can start on Thursday for four hour stretches. Its expensive.  But not as expensive as some of the possible alternatives.

This morning I awoke to a sleeping Gary.  For a few minutes I imagined that it was many years ago before his disease.  I envisioned going down for coffee and bringing it back to him in bed.  For this part of the dream, he sat up, said good morning and was clear, perfectly clear.  We talked about everything that happened in the last week...he remembered everything.  We talked about the future and our house in Panama. We planned some more trips to foreign ports and we just talked.  I did not have to remind him of anything.  I did not have to repeat myself twenty times before we went to church about what the day would bring.  We spent the day just talking and being in love.

But, I realized I was daydreaming.  When he did awaken, he said a sleepy "good morning."  He also asked what day it is; what is planned for the day?  I went down and made breakfast and got ready for church.  The rest of the day was normal...well, normal for 2014.

Happy anniversary honey.

 

Last night's dream.....

I awoke last night with the following song pounding in my head.  I dreamed that Gary was a lot further along in his dementia and I was singing this as a result of him being mentally "gone".

Lyrics written by John Waite (most famously performed by Tina Turner)

"Everytime I think of you, I always catch my breath
And I'm still standing here, and you're miles away
And I'm wonderin' why you left
And there's a storm that's raging through my frozen heart tonight

I hear your name in certain circles, and it always makes me smile
I spend my time thinkin' about you, and it's almost driving me wild
And there's a heart that's breaking down this long distance line tonight

I ain't missing you at all since you've been gone away
I ain't missing you, no matter what I might say

There's a message in the wire, and I'm sending you this signal tonight
You don't know how desperate I've become
And it looks like I'm losing this fight
In your world I have no meaning, though I'm trying hard to understand
And it's my heart that's breaking down this long distance line tonight

Chorus:
I ain't missing you at all since you've been gone away
I ain't missing you, no matter what my friends say
And there's a message that I'm sending out, like a telegraph to your soul
And if I can't bridge this distance, stop this heartbreak overload

(chorus)

I ain't missing you, I ain't missing you, I can lie to myself

And there's a storm that's raging through my frozen heart tonight

(chorus)

Ain't missing you, I ain't missing you
I ain't missing you, I can lie to myself
Ain't missing you, I ain't missing you
I ain't missing you, I ain't missing you
I ain't missing you, I ain't missing you, ain't missing you, oh no
No matter what my friends might say, I ain't missing you... "

So, is this type of heartbreak in my future?  I sure hope not....