Monday, February 23, 2015

Dan's Alzheimer's Progression Timeline

I cannot remember every detail, but I want to give you a timeline for what I have witnessed with Dan.  Of course, there are many details missing, but it will lead you to understand what has happened in the past few years.  Each person's timeline is different, so do not expect this to be the exact same if you are a caretaker of a loved one with Alzheimer's.  We have seen a slow and steady progression at times, and a steep hill decline at other times.  Illness, typically, leads to a quick decline, so beware.

2005 --Dan fell and hit his head.  Changes began after the fall with a decline in short term memory.  He would misplace items, and could not remember where he put them.  I don't, necessarily, blame the fall, but I often wonder if it kick-started the disease.

2006-2008--Confusion with simple tasks became more prominent.  He couldn't remember how to flip a lever to back up his motorcycle.  His short term memory became worse.  He could no longer make a sandwich on his own because he didn't know how to do it.  He began having odd behaviors.  He could only follow a task if you gave him one thing to do at a time.  Multi-tasking was impossible.  He had his first doctor's appointment, but he was in denial, and would not admit that he was struggling.

2009--He was no longer in denial.  He knew there was a problem, and agreed to see his doctor.  He had trouble putting his thoughts into words.  He would say, "I know what I want to say, but I can't get the words out."  He began seeing a neurologist, and a neuro-psychologist who began more testing, including an MRI and CAT scan, revealing atrophy of the brain.  He also had open heart surgery.  His anxiety levels were greatly hightened.  Many behaviors were odd, including shoveling snow through the middle of the yard, and taping the front door to the house shut.

2010--Diagnosed with Alzheimer's in January.  He began medications, which greatly helped with his anxiety.  To "make memories," he and I went on a cruise to Alaska.  Being away from familiar surroundings was difficult for him.  He needed assistance in the airport due to confusion, and I had to divulge his diagnosis to security, so I could help him.  He could no longer read menus, nor books, which was sad because he loved to read.  He realized he should no longer drive, and sold his motorcycle.  Thankfully, he made this decision on his own.

2011-2012--Steady decline.  He and I traveled a little, but I did all of the driving.  He could no longer order food for himself off a menu.  He became "clingy" to me, afraid that he would get lost.  Too much noise, and crowds were very difficult for him to handle.  Daily tasks were still managed, but becoming a little more difficult.  Being out after dark made Dan anxious.  Being in crowds made Dan anxious.  Being away from me made Dan anxious.  Everything was becoming much more difficult.  I helped Dan shower because he could no longer figure out what was shampoo, or body soap, or what he should do with the things once he was in the shower.  He could wash himself, but I had to stand at the shower door to tell him each step.

2013--The year began with more changes.  Dan could not remember where his clothes were in his dresser.  I began by getting his clothes out for him, so he didn't have to search for them.  Then, he could no longer dress himself.  I knew when he began putting his pants on backwards, or underwear over pants that he was declining even further.  Do you remember that little comment I made above about a "steep hill decline?"  This was the year of steep hill decline.   It began in the Summer.  More specifically, it began in July. It was almost an overnight change.  He had a change in personality, becoming more angry.  He also became paranoid, and had delusions.  His medications were no longer working for the anxiety and agitation.  He would get very angry for no apparent reason.  It was like I was having a bad nightmare.  This was not my sweet husband.

He was hospitalized at the end of July.  While in the hospital, he was experiencing paranoia, delusions, and hallucinations.  He was doing so poorly, that they had to have a nurse with him one-on-one, twenty four hours a day.  My hope was that they could get his medications balanced, so he could come back home. While in the hospital, his doctor, nurses, psychiatrist and social worker recommended that he go from the hospital to an assisted living facility.  I knew it might be something I would need to look into in the future, but I hadn't even begun at this point.  I went against their advice, and chose to bring him home.  Our kids were very concerned for my safety, and I was concerned, too, but I wanted to take care of him.  I kept thinking, "if they can just get his medications balanced then it will be okay."  It was finally revealed that he had a urinary tract infection.  Sadly, UTI's are common in patients with Alzheimer's, and can wreak havoc, causing a rapid, downward spiral, which is what we think caused this first rapid decline.

I wasn't getting much sleep.  He would get out of bed two or three times at night, not knowing where he was. I would comfort him and get him to come back to bed.  The mornings, from around eight until noon, were good, but it was a long, hard battle the rest of the day.  I lived in fear every afternoon.

Two weeks went by.  I was exhausted and needed a break.  Twenty-four hour care was becoming difficult. Some of his friends no longer wanted to help four hours a month because they said, "This is too much for anyone!  I don't know how you are doing it."  I was doing it because I love my husband, but even for me, it was starting to be too much.

In late August, I knew I could no longer take care of him.  His paranoia and delusions were worse.  He accused the kids of trying to steal our house, and his Jeep.  He thought all of his money was stolen by me, or the kids.  He accused me of cheating on him.  With this awful disease, there is no reasoning, or convincing someone when their brain is telling them something else.  We had been told by a Geriatric Psychiatrist, almost two years before, that these accusations would occur.  No one can truly prepare you for the sting that comes from those accusations!  After he threatened me a few times, I knew I could no longer live my life in fear. He needed more help than I could give him. I needed more help than anyone was willing, or able to give.

On August 28, 2013 I took Dan to a memory care facility.  It is a day I will never forget.  My life was forever changed.  I was now in our home, by myself, for the first time in my life.  We had been married for 47 years.

His side of the bed was cold and empty.

His chair was empty at the table. 

His seat next to me at church was bare.

He was no longer by my side.

When we got married we truly became one, but now half of me is gone.  I go see him as much as three times a day.  Many times, I have wanted to bring him home, but I know I can't.  It wouldn't be best for him.  I couldn't provide all of the care he needs...not alone.  One person cannot give 24 hour care.  He has a wonderful team that cares for him.

2014--Weight loss...a lot of weight loss.  He went down to 135 pounds at one point. (His healthy weight was around 180.)  Thankfully, he has been able to gain some back, and maintains his weight around 145. Sometimes, he doesn't sleep as much as four days at a time.  Can you imagine how that would make you feel?!  He is now in a small, skilled nursing, memory care, behavioral unit.  He was moved from assisted living because they could no longer give him the amount of care he needed.  He is thin and frail.  He is declining steadily, and sometimes at that stressful, steep, downhill decline. He can no longer feed himself.  He can no longer communicate.  He paces.  He rarely stops, so his legs swell.  He still hallucinates, and it is sometimes very scary for him.  He still experiences paranoia, delusions, anxiety, agitation, and aggression.  He no longer knows me, or our children, or grandchildren.  The light is gone from his eyes.  My daughter, Dana, said it best when she said,

"Dad no longer has Alzheimer's.  Alzheimer's has dad."

2015--Here we are at the beginning of another year.  Dan has been weaned off of another medication, and we are back to finding medications that will help.  Last week was a horrible, terrible, no good, very bad week for Dan.  He fought, and punched, and fell, and became out of control.  His caregivers are concerned about him, and they are working with his doctor to help him as much as they can.  We are grateful to them. Yesterday was a better day.  We have hope that his new medications are helping.  We can always hope.

We miss him.  Our family aches for what he is going through.  It truly hurts. We want him to have peace.  I'm afraid that his peace will only come when he enters into the presence of God.

For our family, there are two words that resonate... God's Grace.  God's grace is seeing us through.  It will see you through, too.

Ginger ~ loving wife to Dan

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