Brrrr….It’s Cold Outside

It’s -11 degrees outside this morning.  That’s too cold for any living creature to be outside in the elements.

As I sit here in my warm little home sipping a steaming hot cup of coffee, there is an elderly  man lost.  He has Alzheimer’s and has wandered from his home. All the local media outlets are airing his photo and asking the public to be on the lookout for him but the chances of him surviving are slim.  My heart aches for his family and I pray that someone, somewhere, saw him and took him in.  I pray he is safe and warm because this could so easily have been my Dad – before we got smart.

If you have a loved one with dementia or Alzheimer’s, please contact your local law enforcement.  Ask if they are enrolled with Project Lifesaver.  And if they are, get your loved one registered with them.  To learn more, click the link below.  If the gentleman mentioned above had been registered, he would be safely back with his family.  It could have saved his life.

Project Lifesaver: Saving Lives of At-Risk Youth and Adults

Learning to Lie

The doorway between truth and lies.

Alzheimers disease continues to dominate our lives.  I’m rarely the daughter anymore.  I’m really just someone who seems familiar.  Dad continues to lose ground.  He isn’t as steady on his feet now and his sentences sometimes end up a garbled mess of non-words.  In spite of it, he still loves to laugh and if I meet him in his world, he’s pretty happy.

 

I still have to make myself visit him and then feel guilty for feeling that way.  My brother has found the balance and he sees Dad weekly and takes him out for a short ride.  That works for him and is less depressing than sitting in the memory care unit with so many others just like Dad, or worse. Those visits give us a glimpse of the future and none of us want to go.  .

 

I guess our biggest struggle has been in trying to help Mom learn to cope with Dad’s disease.  At her age, it’s just hard for her to accept that he can’t get well.  Her time with him is frustrating for her since she still thinks she can ask enough questions to draw him back into her reality.  I cannot imagine how she must feel when the man she has loved for 64 years doesn’t recognize her and, can’t remember the milestones they’ve celebrated together.

 

Mom visits 3-5 times a week but the visits are growing shorter in length.  She seems satisfied once she sees that Dad is clean and as okay as we can hope for.  The problem comes when it’s time for her to leave.  For weeks on end she left Dad with tears streaming down her face.  She would prepare to leave and tell Dad she would see him tomorrow.  Even now he is sharp enough to know (for a minute anyway) that he doesn’t want her to leave.  And, he’s not shy about saying he doesn’t like them living in two different places.  It tears my Mom’s heart into shreds.

 

My brother and I have learned that it’s easier for all concerned if you just tell a lie.  It’s easy to tell Dad we’re going to the bathroom or to get a soda, and then just vanish.  Before we can get to our car, he has forgotten we were there.  He didn’t know us anyway so he can’t be mad at us.  Mom has a hard time learning to lie to the man she’s been completely honest with for 64 years.  But, yesterday was a monumental day.  Mom called me and said that when she prepared to leave Dad, she told him she was going to get her hair done.  He let her go without a fuss.  That, is progress.

 

Today, I think it’s safe to say that Mom is learning to lie.  Isn’t that a sad commentary on what Alzheimer’s disease does to families?  Hardly a day goes by that I don’t think about the hard decisions we’ve made and how it must have felt for my Mom.  She not only lost her husband to a horrible disease but she also lost the home and all the reminders of their life together there.  Yes, I think of her a lot these days.  I wrote about it once and I think it’s time to do it again.

 

So that’s it for now.  We’re doing okay.  If you’re facing the future with Alzheimer’s, you’ll be okay too.  I promise.  You’ll learn to be strong and you will learn to lie.  It’s easier that way.  So, my wish for you – that you will lie only when necessary and that all your lies will be harmless.  It’s an art.

 

Five Things Care-givers Need to Survive lzheimer’s Disease

When a loved one has Alzheimer’s disease, life demands change.  Can you guess who has to change?  Yeah, it’s you, the care-giver.   The person with Alzheimer’s will constantly change but will have no control over the changes.  If you’re going to survive with your brain intact, you have to make the changes.

I’ve learned that there are five things a care-giver simply has to develop for themselves.

Courage.  It’s probably the most important asset of all.  With the future so uncertain you have to believe that you are going to be okay.  Remember that others have paved the way for you and are there to hold your hand.  Be brave!

Patience:  You’ll find that it takes your loved one longer to do everything. And, you can’t rush them.  It takes them longer to eat, longer to tell a story, longer to get dressed, and even longer to brush their teeth.   Try to rush them and you’ll pay the price.  They will take even longer or stop trying all together.  Slow down.  Take a deep breath.  And…wait for them!

A Place of Refuge:  We all need a place where we feel safe.  We need somewhere that shields and protects us from the pain of watching a loved one slowly lose their mental and physical ability to return love.  The work of a care-giver is exhausting.  Give yourself permission to retreat.  Take a break.  Renew!

Faith:  No matter what you think, in order to deal with the highs and lows of Alzheimer’s disease, you have to believe in something bigger than yourself.    You need a place you can turn to where you can lay it all down and walk away knowing that what will be, will be, and in the end, it will be alright.  Believe it!

A Sense of Humor:  As Alzheimer’s disease progresses, those little moments of joy become more and more random.  It’s so easy to get caught in the trap of worrying that each change is the beginning of the end.  What a waste of precious time.  Remember always that your loved one has retreated into a world all their own.  They can be happy there, if you let them.  Stop trying to test their memory.  Don’t try to force them back into your world.  It can’t be done.  Be bright.  Be happy.  Reassure them and laugh easily.  These are the days you will remember.  Make them happy!

 

No one will tell you it’s easy.  It’s not.  But here we are.  It hasn’t killed us yet.  If it doesn’t kill us, it will only make us stronger.  We will live to see another day and if we’re lucky, we will live long enough for science to find a successful treatment or, even a cure.  Be brave, be patient, take refuge and renew.  Have faith, and laugh when you can. 

 

 

 

Moving On

In my last entry I told you of Dad’s new and somewhat embarrassing behavior.  Well, it has passed and we have moved on.  An increase in his medication (Seraquel) seemed to solve the problem but not before he had to be moved to another hallway with less female residents.  He has settled down now and we are so relieved.

 

Dad has regressed a bit more.  He is less aware of his surroundings and seems to be more engaged with voices in his head.  He sleeps more, even when sitting up, and doesn’t speak unless we prod him into doing so.  He has lost a little weight and when I look at him, his face seems to be more gaunt than it was just days before.  His vision seems to be fading and he is less stable on his feet.  His geriatric psychiatrist tells us he has entered stage 5 of Alzheimer’s. 

 

I am finding it more and more difficult to visit with him and that is a painful confession.  He’s my Dad, or was, and I can’t believe I’m feeling this way.  It’s just so hard to see him like this and I justify my feelings by telling myself he doesn’t know whether I’ve been there or not.  That’s true certainly but he deserves better than this.  I just needed to say it out loud because I don’t think I’m the first daughter to feel this way.  When I started writing this blog, I promised to be honest about my feelings, hoping that someone else would benefit from my experience.  I don’t know if anyone is helped by my confession today but at the very least maybe someone else will breathe a sigh of relief when they see that someone else feels like they do. 

 

Most days I feel like I know almost nothing about Alzheimer’s disease but the one thing I do know is this…

 

You cannot place your loved one in a facility outside the home and expect them to be cared for properly.  You have to visit and you have to visit often.  You also have to visit at difference times of the day.  In my situation, I am no longer the daughter; I am the watch dog.  Inadequate staffing, under paid staff, and unskilled staff all add up to our loved ones not getting the care they deserve and in most cases, are paying a premium price for.  So, put on your big girl or big boy pants folks and be the advocate your loved one deserves.  As your loved one fades, your role changes.  As I said in the title, we’re moving on.  You will too.  You have no choice.  

 

Wishing each of you who are living with an Alzheimer’s diagnosis in a loved one courage, strength, and resilience. 

A New Obsession

It seems that things are changing fast.  Too fast.  Or, maybe not fast enough.  I guess it depends on the moment and he emotions. 

Two weeks ago we moved my Dad to a secure memory care unit.  He barely noticed and things appeared to be going well.  Mom was getting the break she needed but could spend as much or as little time with him as she wanted.  We were relieved to know he was safe and that Mom did not appear too traumatized.

During a visit two days ago, Mom was alarmed that her normally well-mannered, proper husband seemed to be obsessed with sex.  After 20 minutes of trying to redirect him, she gave up and ended the visit.  She observed that Dad thought he was back in the Navy and his behavior was befitting any sailor on leave for the weekend. 

Early this morning the phone rang and the Clinical Director of the memory care unit informed me that Dad needed to move to a smaller unit due to his blatant and new sex drive.  She said that for 48 hours, Dad has been making inappropriate remarks to both staff and other residents.  But hold on, it gets worse.  Dad was found in his underwear in the bed of a female resident.  Needless to say, that can’t be tolerated so…he’s moving again.  This time he will be in a smaller unit where it will be easier to keep an eye on him.

I could be embarrassed but I refuse to be.  This isn’t my Dad; it’s the disease.  I despise this disease.  I hate what it has done to my Dad and I hate what it has done to our family.  I hate that it is robbing my Dad of his dignity and I hate that the staff didn’t get to know him like we do.  For a few minutes, I questioned whether I should or could even tell this story.  But then I thought, why not?  Why not tell it.  We aren’t the first family to experience this and we won’t be the last.  It’s part of living with Alzheimer’s disease and it’s real.  No o family should ever be embarrassed by what they cannot control. 

So there.  I’ve told it.  Is my story familiar? 

From Assisted Living to Memory Care

I haven’t written in a while.  The reasons vary but mostly it was because things with my Dad were status quo.  For a couple of months we had no major problems and his mental status remained fairly stable.  As I write that, I find myself amused at how different my idea of “stable” is now, compared to what it was before the diagnosis of Alzheimer’s disease.

A quick look back at the last two months might be in order.  Dad continues to lose memories.  He’s lost his ability to concentrate on any task and has no interest now in television or books.  His sentences sometimes come out as a jumble of words that don’t fit together and he doesn’t tolerate crowds or loud noises well.  In the early afternoon, he starts sundowning and gets very agitated – easily.  And, he cusses like a sailor, which is so unlike the Dad I have known that it’s shocking sometimes.

So, you are probably asking why I am writing today. Well, about two weeks ago, Dad started wandering.  Wandering makes him a risk for the assisted living facility so they have told us that he has to move to the “secure” memory care unit.  My Dad, the man who set the example for trust and responsible living, has to live behind doors that are locked 24 hours a day.  He has to be separated from the wife he has been with for 64 years; the woman he brought back from a debilitating stroke with his tender care and love.  It is heartbreaking to even think about it.

As a family, we understand this decision but it does not make it any easier.  Tomorrow morning, an aid will escort my Dad to his new room.  He will be introduced to a room mate he won’t remember and he will spend his day looking for his wife.  That’s just what he does.  She is his security and she won’t be there to comfort him or ease his fear.  In fact, it may be days or even weeks before she is allowed to visit him.  Until he adjusts, we have been advised not to visit.

We are not the first to face this challenge and we won’t be the last.  Until there is a cure for Alzheimer’s, this will be the story for millions of families.  This is a disease that forces families to make painful decisions while watching their loved one fade away into the mental fog.  It takes strength and courage and trust and thankfully, we have all three.

To all who have been there ahead of us, my heart aches for you.  For those who will follow in our footsteps, I hope that we can be a source of courage.  I hope we are as strong as I think we are.

Taking a Deep Breath

What a journey it has been.  It has taken five long months but we have finally emptied Mom and Dad’s house and the “For Sale” sign is in the yard.  Now, it’s the realtors turn to make things happen and my brother and I can take a long awaited deep breath.

My emotions these last few months have run the gamut; from grief to elation, from dread to eager anticipation.  Although difficult at times, it has been a privilege that is difficult to put into words.  My hands have literally touched every item that ever mattered to my parents.  I’ve cried over the love letters that were lovingly hidden away and giggled over the childish art that Mom kept from the time we were old enough to hold a crayon.  Hidden deeply in a cedar chest, I uncovered the scrapbook made by a beautiful young woman as she planned her wedding.   As my fingers caressed the surface of an old frying pan, I remembered the smell of chicken frying on Sunday afternoons.  Memories of impromptu picnics washed over me and with them, feelings of gratitude.  Yes, I am thankful to have so many wonderful  memories to pack up.

As hard as this has been, I know it doesn’t compare to what my Mom must be feeling.  The partner that she built this lifetime with no longer remembers doing it.  The home she created was a haven for her family and many friends too.  Then one day, her children asked her to walk away with only a few token reminders of the 55 years she spent in the home she loved.   We expected her to listen as we made plans for estate sales, ebay sales, and donations to charity – of all the things she loved.  Through it all, she has never let us see her tears.  She has been strong, for us, but only she knows how it feels to be a mother, looking at life from where she stands.

Dad has mostly recovered from his respiratory illness.  Interestingly, it seems as if he has lost the memory of the last five months and is having to once again adjust to his new living arrangement.   We are seeing a progression in his lost inhibition.  His behavior is becoming more and more crude with frequent cursing (something my Dad never did) and loud, deliberate burping.  It embarrasses my Mom even though though all those around her understand that this is the Alzheimer’s and not her husband.

So, while there is time (before the next crisis), I am going to enjoy this moment.  I am going to take that deep breath and allow the memory of this journey to take its place in my heart.  I will remind myself that this is life and there is more to come, more memories to be made.

Six Days of Uncertainty and Fear

Dad has been ill now, really ill, for six days.  He apparently developed an upper respiratory infection.  I am thrilled to report that today he showed some significant improvement and we are hopeful that this trend will continue. 

For most of the past six days, he has been sleeping; unable to communicate, eat, and, he could not walk.  He had a low grade fever and only occasionally uttered a few words of garbled language that we could not understand.  He was put on an antibiotic and taken off of solid food due to the risk of choking.  Through constant urging, we were able to keep him awake long enough to get a bottle of Boost in him three times a day.  Today, he shows signs of minimal dehydration which we are addressing with Gatorade for electrolyte balance. 

Dad weak but slightly more alert.  He showed signs of a returning appetite late today and that gives us hope that he has turned a corner.  His body is beginning to show the signs of significant muscle wasting too.  It concerns us but we also know this is part of the disease.  It is a reminder.  Alzheimers disease has been called “the long goodbye”.  Count each day as a blessing and, as one more chance to love fully and without reservation. 

Challenge After Challenge

Just when you think you’re starting to get a grip on this Alzheimer’s thing, it will raise its ugly head and remind you that you are not in charge. 

Today, is one of those days.  Both my Mom and Dad are sick from an upper respiratory bug.  Although my brother and I are checking in on them frequently, we are still somewhat at the mercy of the caregivers at the assisted living facility.  They do okay but clearly they are understaffed, over-worked, under-paid, and, they aren’t family.  As painful as it is to see both parents sick, it’s a bit easier with Mom.  She is easily able to describe how she feels and we can adjust our treatment accordinngly.  Dad is proving to be a real challenge.

In the past 24 hours, Dad has retreated into the Alzheimer’s World.  He is all but mute and seems content to sit with his head in his hands or, to stay in the bed.  He has no interest in food and has all but refused the past three meals.  Normally, that would not surprise us or trouble us.  Most people don’t want to eat when they are sick.  The problem is that Dad can’t tell us how ill he is and we can’t tell if his behavior is caused by the illness or the dementia.  Knowing would make treatment decisions easier but for now, we are guessing.

It occurred to us this morning that if this is progression of the Alzheimer’s, then we will soon face the decisions we never wanted to face – to treat or not to treat; to feed or not to feed, etc.  We will face the challenge of deciding quality or quantity.  DNR’s (Do Not Resuscitate orders) are in place but it will be up to us to honor those orders.  Can we?  Will we? 

The simple answer is yes, we will honor them but first, we have to determine what is illness related and what is Alzheimers and unfortunately, the person who knows can’t tell us.  Until we know, we will wait, we will watch, and we will make sure that Dad knows he is loved and not alone.  It is he best we have to give. 

Catching Up

It’s been a while since there was time to write.  The days have gone by so fast.  I guess that happens as we get older.  It is the days that get shorter, isn’t it?

The move to assisted living is over and my parents are settling in fairly well.  Mom is content.  I can’t say she’s really happy because it will never be like home but she is content.  It’s the best we could have hoped for.  The first two months were hard for Dad.  Something about the room reminded him of the time when Mom had her stroke and he became obsessed with thinking it had happened again.  He worries about her so much that for a time we thought he might die from grief.  Thankfully, he began to adjust and then…sundowner’s syndrome kicked in.   The next few weeks were really hard as he began to get extremely agitated in the late afternoon.   The aids adjusted his schedule and started preparing him for bed by 7:00 PM and that seems to have helped.  Things are settling down a bit and we are grateful.

The staff is wonderful and Mom gets a lot of attention and affection.  She is one of the more astute residents living there and she has a quick wit about her.  She has become the belle of the ball at the facility.  Each day she dresses with care, adding her little pieces of costume jewelry and has become known as one of the best dressed around.  She should be.  Her closet is overflowing with color and style considering all her clothes were bargains at the local department store.  Mom makes a game of looking nice and is killing my budget with the in-house hairdresser.  In three months she’s had four haircuts.  But who cares?  If she feels good, we all feel good.

My brother and I have begun packing up the memories and picking up the pieces left behind.  We’ve had one estate sale which went pretty well and now we are preparing to put the house on the market.  I can’t say that this part is easy.  That house holds so many memories, even with so much stuff gone.  I’ve yet to be there without tears and I’m there almost daily.

For those who haven’t made it this far in the journey into the Alzheimer’s World, I just want you to know that you will survive.  I cannot tell you that it will be easy but I can assure you that you can do it and come out on the other side.  In the end, you will know you have done the right thing, as long as the decisions you make are made with love.  It is all that matters.

Until next time, love, laugh, and live life as if today is all you have.