Wednesday, February 25, 2015

The Progression...In Pictures

When we first started the blog, we were concerned about sharing too many details.  There are some details that we will keep within our family at this time.  We want our dad to be able to maintain dignity.  We debated if we would share the "bad" pictures.  This is not the man we want others to know, or remember.  We decided we would share this one post with pictures, so others could see that this isn't only a brain atrophy, but it effects the entire body.

In his favorite element..with a grandchild on his shoulder
Before Diagnosis  -  December 2006

Making memories on an Alaskan Cruise

Making more memories at Niagra Falls, and then on to Gettysburg for the History nut!
September 2012

Cuddling with Bethany after his first rough hospital visit
A month before being admitted to an Assisted Living Facility
July 2013

One Month of living in an Assisted Living Facility
September 2013

Dan, Kerry, and baby Ligon
This was the first time he didn't recognize Kerry
October 2013

December 2013

Happy 69th Birthday!
January 2014

Not feeling well.  Lacking sleep.  Leaning to the side.
July 2014

He paces a lot, and likes to push a wheelchair, but his caregivers felt that a walker would make him more stable.  He usually feels the need to push something.

He began hunching over, and when he is tired he leans to one side, or even forward, or arches his back.  It must be very uncomfortable.

August 2014

Hunched posture is typical now.  His eyes are glazed over.

It's hard to tell what he actually sees.

December 2014

If we can get him to sit, and rub his chest or his face, 
he will sometimes go to sleep for a little while.
Christmas Party
December 2014

This isn't dad anymore...this is Alzheimer's...

Please take a moment and look back at the first picture.  That was dad.
That is who we want you to remember.
And then...take a moment to pray for our dad...for your loved ones...
for the families who are enduring this disease.

You may also leave a comment and we will pray for you!

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

Thursday, February 19, 2015

We were warned

A few months after dad was diagnosed I had the opportunity to sit down with dad, mom, and a Geriatric Psychiatrist who is very knowledgeable about all things pertaining to Alzheimer's.  He talked to dad a lot about the disease and the things he was experiencing.  He asked dad a lot of questions.  And then, he turned to the three of us and said, "There are some things you need to know that will happen in the future."  We were warned that these things would happen, and we feel that it is necessary that others be prepared, as well.

First, he said that those who are diagnosed with Alzheimer's tend to end up on one, or the other end of the "behavior spectrum."  This means that patients become very docile, loving, and kind, or angry, mean, and violent.  Right before dad was diagnosed he became very anxious, nervous, and even angry at times.  After diagnosis, he was placed on medication that helped his anxiety, and he became very loving to our mom, and our family.  Then, the disease began a rapid progression, and he, once again, became very anxious, angry, and even threatened violence to my mom before he was placed in an assisted living facility where he became violent numerous times.  Even at this point, when he has become more weak, he still has violent outbursts.  He recently got in an "altercation" with another resident, and then punched one of his caregivers a few days ago.

Second, the doctor told us that he would, at some point, become paranoid and delusional.  With the paranoia and delusions, we were told that he would accuse our mom of cheating on him.   He also said that he would accuse our family of stealing his money, and his belongings.  This was very difficult to hear, especially with dad hearing these things, too.  The doctor was right.  Dad did accuse mom of cheating on him, even though she had been faithful their entire marriage.  At the point that he accused her of infidelity, they had recently celebrated their 47th wedding anniversary.  He also accused all of us kids of stealing his home and money.  None, of which, was true. Please remember that this is a disease in the brain and convincing someone with Alzheimer's of the true reality is hopeless.

Third, and lastly, with compassion, he told us that there would come a time when he would no longer know us, and would lose all ability to use the toilet, talk, walk, eat, and then his body would shut down.  He also mentioned a risk of stroke because it is common in those with Alzheimer's.  At this point, he no longer knows us, he can no longer use the toilet, he can say a few words, but cannot carry on a conversation, he paces a lot, but isn't steady on his feet, so he has fallen a few times, and was unable to walk a few days ago, but just for one day, and he can no longer feed himself; although, he can still eat.

I will add a few more warnings that we have learned during the process of this disease:

1)  Medications can be very hard (for some patients) to balance, and it can become largely experimental to figure out which medications, or combination of medications will work...and sometimes not work.  Patients are often admitted to a psychiatric hospital for a period of up to two weeks to try to find the right medications.  If possible, we highly recommend finding a hospital that has a geriatric psychiatric unit because they are equipped and knowledgeable about Alzheimer's much more than a typical psychiatric unit.

2)  This disease is very hard on the patient, but it is also very hard on the caregiver.  Get help!  Ask friends to sit with your loved one, so you can go to a support group meeting, or just go for a walk alone.  Find a facility in your area that offers "day care."  Some facilities only allow weekly care, but it is wise to know about that, as well.

3)  You may plan to keep your loved one home until the very end, but sometimes it is not possible.  There are numerous reasons that those with Alzheimer's have to be placed in a facility.  Sometimes it is for their safety...sometimes it is for the safety of the caregiver.  Even if you plan to keep your loved one home, you should still visit facilities...just in case.  It also doesn't hurt to get a name on the waiting list!  Most facilities have a waiting list, and it can be up to 2 years long.

From the very beginning, our mom was adamant about keeping dad at home until the very end.  In November of 2012, my mom was at my house, and I could tell that being the caregiver was taking a toll on her.  Dad was showing a few anger outbursts, he wasn't sleeping well, so she wasn't sleeping well, he was her shadow, always worried about being near her.  Dad had said after he was diagnosed that if he became "too difficult" that we needed to do what was best, and it would be okay.  I had a discussion with mom, and told her that if it got to a point where it was more than she could handle that we would support her decision to place dad in a facility.  Still, she was adamant that she would keep him home.

Because mom was adamant about keeping him home, we had not researched facilities, and we were completely unprepared when dad took a rapid, steep decline.  Dad was placed into a psychiatric ward to try to balance his medications, but the balance was not found, and the doctors, psychiatrist, nurse, and social worker recommended that dad move straight from the hospital to an assisted living facility.  Not only were we not prepared for the waiting lists, but we had no idea it would be even more difficult because dad was labeled a "behavior case," and many facilities were unwilling to take him.  Mom, against everyone's advice, decided to bring him back home, but he was placed back into the hospital a few weeks later, and then moved to an assisted living facility.

Just because your loved one is placed on a waiting list does not mean you have to accept the placement when you are called.  Being prepared is very important, though.

4)  Hire an Elder Care Attorney as soon as the diagnosis is received.  This is very, very important!  The attorney will help you figure out long-term care, which is crucial with this disease, especially from a monetary aspect.  You need your loved one to be a part of the process, so you need to do this while they can still make decisions with you.

5)  Be prepared for family problems.  It is very common.  Too common!  You can read my last post to learn more.

I hope these warnings will help you prepare for the future.  Even with the warnings, it is so difficult when these things come to pass.