He's Still Here.....

I don't know how or why, but Gary is still among the living.  Today, I visited him at his Memory Care Unit.  He was seated with Janette in the open living area.  I have been around Janette for 1.5 years....apparently she is now blind or her eyesight is failing....I hate that these people are dying and breaking down.

One of the caregivers who has been there since we first moved him in was there and had been instructed to read to Gary.  I sat down to see what was going on and incredibly, she started reading to him from a paper that HE wrote 10 years ago about his childhood and the remainder of his life. I had forgotten that I gave them his autobiography when he moved in to the unit.  She spent about 40 minutes reading aloud about his life.  All stories I have heard a thousand times.  I supplemented information to each story.  

At the end, I asked her what her objective was in reading to him.  She said that her directions were to read to him and then annotate the results.  She opened the book and wrote "Patient had no response."  I am not sure what they thought would be accomplished.....Gary was oblivious. I suffered through the stories again.....but at the same time, they were glorious.  

To add to the story....at least three of the caregivers have given notice or are looking for another job. They are either underpaid or moving on....it is sad.  Why is it that in America, we pay the most important people the less? Firefighters.  Police. Caregivers. 

Bottom line:  Gary is still alive.The doctors had said that he would not make it till August 1.  Today is October 28.

Reagan Library Meltdown

So, I disappeared for a few days and drove up Highway One to see the Hearst Castle and The Ronald Reagan Presidential Library. 

I thoroughly enjoyed my time away and found a lot of rest and peace of mind, temporary though it was.  I seemed to be able to forget that I had a husband near death in Memory Care....that is, until I got to the part of the Reagan Library where a display held the letter that Ronald Reagan wrote to the American people upon being diagnosed with Alzheimer's.  As I stood there, I read his words and imagined the torture that he and Nancy must have endured by simply learning of the disease....much less the next years of their life. 

Here is the letter as found in the Reagan Library:

"Nov. 5, 1994
My Fellow Americans,
I have recently been told that I am one of the millions of Americans who will be afflicted with Alzheimer's Disease.
Upon learning this news, Nancy and I had to decide whether as private citizens we would keep this a private matter or whether we would make this news known in a public way.
In the past Nancy suffered from breast cancer and I had my cancer surgeries. We found through our open disclosures we were able to raise public awareness. We were happy that as a result many more people underwent testing.
They were treated in early stages and able to return to normal, healthy lives.
So now, we feel it is important to share it with you. In opening our hearts, we hope this might promote greater awareness of this condition. Perhaps it will encourage a clearer understanding of the individuals and families who are affected by it.
At the moment I feel just fine. I intend to live the remainder of the years God gives me on this earth doing the things I have always done. I will continue to share life's journey with my beloved Nancy and my family. I plan to enjoy the great outdoors and stay in touch with my friends and supporters.
Unfortunately, as Alzheimer's Disease progresses, the family often bears a heavy burden. I only wish there was some way I could spare Nancy from this painful experience. When the time comes I am confident that with your help she will face it with faith and courage.
In closing let me thank you, the American people for giving me the great honor of allowing me to serve as your President. When the Lord calls me home, whenever that may be, I will leave with the greatest love for this country of ours and eternal optimism for its future.
I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead.
Thank you, my friends. May God always bless you.
Sincerely,
Ronald Reagan"

As I stood there alone, I began to cry.  Hot, small tears flowed down my cheeks. All I could do was walk off and do my best to squelch the emotion.

The truth is, every journey is individual and different.  Even having gone through the Dementia diagnosis and years of hell, no one can imagine what another family will encounter.  I was so angry that the disease (which has no economic, sex or racial filter) can devastate such a great world leader or anyone else for that matter.  Why did it devastate my husband? 

For those out there who are still living with the disease or care giving for one who is....I can only wish you peace and a pain-free end to the suffering.  I wish for it everyday.

If you can't afford long term care insurance, you can't afford long term care!

Tonight, I will be on vacation.  I am escaping Anaheim, my job, my responsibilities and hopefully, my thoughts for a few days.  I have done all I can do for now to take care of things while I'm gone.  Don't ask where I'm going....just trust that it is away and near the ocean.

I visited Gary on Saturday.  I fed him his pureed meal of chicken, carrots and potatoes.  I tasted it.  Not too bad.....apparently it is real food and it is just blended.  He ate every bit.

When I arrived, he was sitting in a reclined position with headphones on his head and his eyes tight shut.  The music playing was a Rock Pandora station....Grateful Dead, Pink Floyd, Credence Clearwater, etc.  I sat there for about 1/2 an hour and watched him.  He showed no reaction what-so-ever. When the food came, we stopped the music and he opened his eyes. 

I was thinking.  I can escape for short periods of time.  His only remaining escape from anything unpleasant is to die.  I talked to the manager of the unit and told her I was going to be a few hours away and to call me if needed.  She said that "we shouldn't need to....he's not there yet."  She also confirmed what I have always been told.  He will probably die from pneumonia or asphyxiation. 

Front temporal Degeneration is a cruel disease. It has no selection process for who gets it.  It could be anyone.

Financially, I am close to being out of resources to pay for his care.  Very close.  It is so scary. 

The advice I would give families is to get long term care insurance while you can afford it.  If you can't afford long term care insurance, you can't afford long term care.  Think about it. 

Another day in the Life of Dementia

I'm really tired of being a caregiver, even though I'm not really a caregiver anymore.  Gary lives in Memory Care so I am done with the day-to-day issues of incontinence, medication, dressing, feeding, cleaning, etc.  I only pay for it all and do my best to get through each day knowing that he is about to die.

Today, he was sitting in a more reclined position due to his spinal atrophy.  He seemed more comfortable somehow.  I rolled him into his room and just looked at him.  He was wide eyed and his right eye had mucus around it.  I put drops in his eyes and attempted to clean it.  An eyelash was the culprit.  Imagine for a moment having an eyelash stuck in your eye and being unable to think through trying to get it out or even being able to communicate that you are uncomfortable.  A mere eyelash...I can't imagine something more major. 

I trimmed his mustache really short and eliminated all the food debris dried in it from breakfast.  Apparently no one wiped him off after his newly pureed breakfast.  I trimmed his eyebrows, ears, nose and fingernails.  His hair was perfectly combed.  

I looked straight into his eyes and talked to him as if he was totally there.  I told him that I love him but that I am tired and that I know he is.  He started making a half hacking/half coughing noise.  His face contorted and he started to cry.  I started to cry because I didn't know why he was crying. As quickly as he started, he stopped.  Me, too.

I told him that I will be okay if he wants to check out of this world.  No visible response.  I looked at him to see that if I never see him again alive, would I like how he looks for his deathbed.  He is not the man of yesteryear.  He is old and sick now.  Such a shame.  I look forward to him being restored to his old self.  It can't come too soon. 

Gary is not Swallowing Very Well.

As I walked though the grocery acquiring vegetables to accompany my evening meal, the phone rang.  It was one of the Hospice Nurses.  The heart always skips a beat when I see those names pop up on the screen.  Before caller I.D., I would have just answered the phone and dealt with the situation with no drama. Now, I have no choice but to get the dramatic preview.

I answered and heard the Nurse tell me that the new Care Manager was concerned that Gary is no longer swallowing his food properly and that as of that day, they had put his diet to "pureed" food. Bam, there it was.  The next step in his decline. I had known it was coming.

I said a low-level "thank you" and the nurse asked what was wrong.  I went off on her....bless her heart.  In the produce section of the store, I started a tirade that included:

"Why do you people have me go and buy pillows and bring them to there and then you don't put an order in the computer for them to be used?  What do you mean you are now ordering him heel cups instead of pillows?  Couldn't you have told me that before I went and bought new pillows?  Don't you realize I am running out of resources? Don't you realize I am done? "

"What do you mean you are done?"  said the nurse.

"I mean, the man in that wheelchair is not my husband and I'm tired of living like this and I know he is.  I'm just done!" The woman standing next to me buying cucumbers was horrified. 

"Would you like to me have someone call you so you can talk this through?'  

"(*&^4%& - expletive.... no,No, I"ll be fine.  I just don't know how much longer I can do this.  I'll be fine when its over."

"Well, he is declining quickly and now rarely sits up and is bent over his chair.  The lack  of swallowing is the next step."

Yes, I know.  If felt really bad that I had attacked this poor woman.  The last few days are the first that my personality has shown the severe wear and tear of the last few years.  I went home, had a glass of wine, talked to a friend and slept like a baby.

Sewage spill and Dementia!

One of the caregivers (angel) at Gary's Memory Unit has been there for quite some time.  She only works part time now as she has started another career.  In talking with her yesterday while we were feeding Gary and Nancy, she indicated that she loves the residents so much that she can't bear not working there.  Then she mentioned that one of the residents had died earlier in the month.....I didn't miss her not being there.  I guess I don't pay as close attention as I used to do.  I felt a sadness for the angel and a great joy that the resident who passed on will never be in anguish or confusion again.

Then, I looked at Gary.  He was trying to say something but could only muster a grunting noise.  I told the angel about him saying words so clearly earlier in the week.  She also indicated that she has not heard his voice in months.

His eye was watering so I put some drops in it trying to wash it out.  He cannot put his head backward anymore so it was difficult.  I think I made a difference.

There is a special agony that exists when I drive into the garage at the Unit.  I never know what I'm going to find once I enter.  Usually, it is nothing unusual, but one day I will walk in to either find my husband very ill or not there at all.  What will I do with the furniture in his room?  What will I do with his clothes?  I know.....charity.

Yesterday, as I left the unit, I decided to stop by the bathroom before I ran my errands.  The toilet would not flush.  I reported it to the desk attendant.  I walked down to the garage and heard a loud leak, more of a pouring of water.  After looking around, I saw what appeared to be a broken pipe in the ceiling of the garage pouring water down into the garage.  I went back upstairs to also report this near flooding situation.  

I went back downstairs to leave and realized the distinct smell of sewage.  No wonder the toilet wouldn't flush....there was a break in the line.  Another visitor was going upstairs so I told her to tell the attendant about the sewage.  As I drove off, I realized the irony of the situation.  Dementia has created so much crap in the lives of Gary and Ada that it is appropriate that a sewage line would break in front of me while visiting him.  An appropriate symbol for a shitty disease.  When will it be over?