There ARE good facilities!

I remember going to various nursing homes when I was young.  I hated going to them!  They seemed dirty. They smelled like old urine.  People were moaning and grabbing at me.  As a child, it was a scary place to go.

When dad was placed in the hospital the first time, my mom was really upset, and lonely, so I drove to Kansas to be with her, and to see my dad.  The staff at the hospital told my mom that dad needed to go to an assisted living facility from the hospital.  My mom had only looked at a couple of facilities for "day" care, but nothing for long-term care because she had planned to always keep him home.

Mom and I spent the days looking at facilities online.  We looked at pictures, and reviews.  We made lists of what facilities needed to be visited.  To save my mom from some of the stress, I made visits to the facilities, so I could narrow down the list of choices.  I broke down in tears every time I walked through the door of another facility.  It was one of the most difficult tasks of my life.  I never thought I would see the day that I would seek a nursing home, or assisted living facility for one my parents...especially not in their 60's.  It was emotionally draining.

For some facilities, the list was narrowed as soon as I walked in the door.  If there was a smell...I was out the door!  For other facilities, I didn't care for the staff.  Some directors seemed more like sales people. Some caregivers seemed like they didn't care about the residents.  They went through the motions of taking care of them, but they didn't love them...they were just patients, not real people.  For some facilities, the wait list was up to 2 years long.  I wasn't sure if my dad would even be here in two years.  For some facilities, my dad would not be accepted because he was a "behavior case."  The long list dwindled rather quickly!

I was discouraged.  I still hadn't found a facility that I felt was "right," or "good enough" for my dad.  Mom decided to bring dad home from the hospital, against everyone's wishes, but we were concerned that he would not be able to stay home.  I needed to get my kids out of the house because noise agitated dad, and I was afraid of what he would do if he became angry.  I loaded the kids in the car and decided to go for a drive, and make a few more phone calls to facilities.  I drove right by a facility that was on my list, so I stopped for a surprise visit.  *for the record...I never scheduled an appointment!  I didn't want them to "expect me."*  I went into the facility and asked to speak to someone about the Memory Care Unit.  The director of the entire facility came, offered me something to drink, and then began asking about my dad and mom.  He was great!  He understood what we were going through, and had so much compassion for my family.

This facility was perfect for my dad!  It was an assisted living facility, and they placed a lot of emphasis on keeping dad as independent as possible.  They had a "safe" tool table, so men could tinker.  I knew my dad would love that!  They had a nursery, so women could take care of their pretend babies.  They had a vanity where women could put on scarves and hats.  There were skylights in the roof, so they could have sunlight. That was amazing!  One of the comments that stuck with me the most was when the director said, "We can give your mom the gift of being a wife again.  We will take good care of your dad, and your mom can come be his wife."  I liked that idea a lot!

Dad moved into this facility a little over a month later.  Mom was there up to three times a day.  She helped shower him, dress him, brush his teeth.  She didn't need to do any of these things, but she wanted to.  Dad was getting great care!  He got to go out to eat with the men sometimes, he helped vacuum, and move chairs and tables, and really enjoyed being the helper.

Then, the director of the facility left, and everything began to change.  The staff was being reduced. Residents were leaving.  Basically, dad was kicked out, but in a very deceiving way.  We later found out that other families were being told the same stories about their loved ones that we were told.  I am glad that he is no longer there.

Dad was moved to a very nice facility while we waited for an opening at the facility where he is now.  His new facility is a skilled nursing home.  There are several different wings.  Dad is in a locked-down wing that houses men with dementia who are considered behavioral cases.  He has a nurse in his wing at all times, caregivers are present 24 hours a day, and a doctor is present at his facility every day.  Dad's main nurse is a man, his doctor is a man, and his caregivers are men.  This is so much better for dad!

I was just in town to visit my family.  My mom brags on dad's nurses and caregivers all the time.  I hadn't seen them "in action" much, so I was looking forward to observing them with my dad.  Now, I can brag, too!

Dad's nurse, "D," seems serious, but is so nice to the men, and very good at his job.  He talks to the residents as "men," not just patients.

"J" is one of dad's main caregivers.  This guy is a gem!  My dad responds to him like no other.  He is so good to all of the men.  Somehow, he sees beyond the disease and sees the person.  I cannot tell you how much I appreciate that!  I think "J" really cares for my dad.  He has been there a long time, and I sure hope he sticks around!  He is gifted at his job.

"L" is a guy with a smile!  I know these guys have a really tough job, but they all walk around with a smile.  "L" seems to enjoy the residents.  He talks to them, and listens to them...even when they don't make sense.  I watched him as he talked to one of the residents, and played along with the delusion, so the resident would be comforted.  He also sat with a big smile on his face while another resident cussed at him like a sailor!

"U" is so kind and gentle with the residents.  I watched him as he fed the gentleman across the table from my dad.  I could tell he had done this many, many times, but there was nothing in his demeanor that would indicate that he was bothered by the job.  He was so good at what he was doing.  As another gentleman spilled his milk all over the table, floor, and on himself, "U" was calm and reassuring to the gentleman.  He got up immediately, with no complaint, cleaned up the gentleman, table, and floor, and assured the resident that everything was okay, and they would get him cleaned up as soon as he was done eating.

I went to visit my dad several days when I was in town.  The caregivers were the same every time.  My mom visits nearly every day, and at different times of the day, so it is evident that the care is consistent.  We have come to trust the staff, and that is a huge blessing.

 I only visited my dad very late on one day, so I didn't get much of a chance to observe his nightly caregivers, but my mom has bragged about dad's nighttime caregivers, as well.  They are quick to call if there are any problems, or if dad gets hurt.  Dad still doesn't sleep much at night, so they are busy with him all night long. They never complain.  They do not ask to over-medicate him to make him sleep.  They walk with him, talk to him,  and treat him with dignity and respect.  How do we know this?  Because mom is known to show up at any time in the day...including very late nights!

There ARE good facilities!  Do your research!  Check out www.aplaceformom.com!  They have lists of facilities in your area, with reviews!  Do independent reviews online, too!  Visit the facilities without scheduling an appointment.  Visit at different times of the day.  If another visitor is leaving the facility at the same time as you, ask them their thoughts of the facility for their loved one.  After placing your loved one, visit them frequently, unannounced, and at different times of the day, and night.  If something doesn't seem right, go with your gut!  Get on waiting lists!  You never know when your loved one will need to be placed in a facility, or moved from the facility they are in.  Be encouraged...I know this is one of the most difficult decisions for you, but there ARE good facilities, with wonderful caregivers.

And...a big Thank you to the caregivers!  Ya'll are amazing!!!  I think you have the toughest job in the world!

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

2010

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!

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