THE Alzheimer's Support Blog for Caregivers

The Crossroads

I just lost my dad.  One minute, he was talking, walking, and shopping with me; the next day he was someone I didn’t know.  Overnight, his dementia had taken hold and he was lost to us.  I’ll never know if it was a new prescription that pushed him over the edge, or someone stealing his wallet at his assisted living center (which held his lucky $20 bill from his Navy days in the 1950s).  I’ll never know the answer and I’ll never gather enough facts to know.  This doesn’t exactly bring me peace.

Was it part of God’s plan to take this wonderful, kind man that everyone loved so quickly?  Had God heard my prayers for mercy as I saw him headed down the slippery slope of decline?  For days in the hospital, I sat talking to dad.  Even though he was unresponsive and incapable of our usual communication, I could see that parts of “dad” were still there.  The doctors were not forthcoming with information and it was a constant struggle to get the facts and the truth — two things my tenacity was going to attain.  I watched for days as the prognosis grew worse, until finally I lifted a prayer begging for answers … any kind of answers.

The neurologist came into dad’s room and he was, quite literally, heaven-sent.  He answered all of my questions to the best of his ability.  He told me dad was not coming back and I needed to make a decision as dad’s healthcare power of attorney.  An infection had started to brew and they wanted to know if we should treat it or not.  Fortunately, one of the greatest blessings in all of this is that mom and dad left detailed living wills/advanced directives, spelling out what they wanted and what they didn’t.

There was no way dad wanted to live like this, and his living will guided us to the final decision that allowed him to die a natural death as he requested.  As my sibling said, “It was the hardest, easiest decision to make, because dad had told us what he wanted.”  We honored his wishes, as hard as it was.  Imagine the level of guilt we would have to bear the remainder of our lives, had dad not gone to the trouble to have this for us, guiding us through a very dark and sorrowful time.

Moving him to Hospice House was the best decision.  Dad was so peaceful there.  I am convinced the nurses and CNAs had angel’s wings under their scrubs; yet another blessing during this time of crisis.  I stayed with dad in hospice for two days.  I talked non-stop (aided greatly by the constant flow of caffeine), I sang to him “Amazing Grace” and other songs he loved.  I asked for forgiveness for the times I wasn’t the best kid or short on patience, and I reminded him of all the great family memories.  I thanked him for instilling in us kids the morals and values that have carried us so far.  I asked him to watch over my family, give mom a big hug, and touch the stars for me.  It is hard to carry on a solo conversation.

A couple of hours before he passed, he gave me a great gift.  He opened his eyes and locked onto mine.  He hadn’t done that in a week.  Giving dad the biggest smile that I could through the tears, I told him that I was right there with him and that I was okay (he always worried about me).  I was sad but okay and was going to be okay.  I told him “I love you” as I had at least 100 times that day.  For a man whose brain could no longer function and who lost his powers of speech, what he did next was a very special gift.  Eyes locked on mine, his lips mouthed the words, “I love you” right back.  In human terms, that was impossible, but not to me.  That was a parting miracle and one I will never forget.

Thanks for letting me get this off my chest.  It is a sorrowful time for me and my family, but dad always said, “Life is for the living,” and mom always said, “This too shall pass.”  I think they were both right, as always.

© 2012 Julie Hall

The Cliffhanger

It’s like watching an old movie where the actor is in a precarious position, like Harrison Ford dangling off the edge of a cliff.  The good guy shows up just in the nick of time before they plunge into the abyss and rescues them with the grasp of a strong hand, pulling them back to safety.

My dad is the one hanging off the edge and I am the one extending the hand, doing everything in my power not to let go of that tight grasp.  The problem is that I am getting tired and weary, both mentally and physically, and I feel our entwined hands slowly slipping.  Dad is now at a point where he is slipping away from us.

It is a tough pill to swallow.

This may be a harsh image for you to conjure.  But when I look in dad’s eyes, I can see resignation.  I can also see frustration, confusion, angst and concern, among many other things.  In just a short time, his hearing and vision have declined considerably, and I don’t know if this is due to the aging process or part of his Alzheimer’s.  My guess is the latter.

“Holding on” requires a delicate balance.  If you hold on too tight, you may be unknowingly going against their wishes and not giving them their last little bit of freedom.  If you don’t hold on tight enough, they may experience depression or feel abandoned.  There is no easy answer.

Fortunately, I am one of the lucky children who has had many discussions with both of my parents as to what they want in the event of a long-term illness, or should they suddenly become incapacitated.  Knowing my dad the way I do and what he has shared with me, I trust that I will know when to let go, even if he can’t verbalize it.

They say the eyes are the windows of the soul.  Look deeply into a loved one’s eyes and you can feel and sense what they are experiencing on some level.  Non-verbal communication becomes increasingly important as this disease progresses, so it is essential to open yourself to receiving what they are trying to tell you.

There’s nothing easy about letting go.

© 2012 Julie Hall

Rummage

It’s not dad’s fault and it certainly wasn’t done deliberately.  But I must admit when I walked into his normally neat apartment and saw it in disarray with some of my late mother’s items broken and tossed about, clothes every which way, drawers that don’t make sense, TV remote and phone screwed up, batteries strewn, etc., I felt my blood pressure rise almost instantly.  Everything that could be “messed with” was messed up, and it was far worse than anything a toddler could have done, had you let them on the loose.  This was the first time I had witnessed this and it was a heart-sinking moment.

In a knee-jerk reaction, I questioned him on what the heck happened.  His response was that he tried to dust.

After I took a few deep breaths and reminded myself this wasn’t his fault but the declination of his disease, I was able to put on a smile and move forward.  As I drove home, I couldn’t help but wonder what had caused this sudden urge to mess everything up.  I have a theory or two.

I read that “rummaging” is all part of it and this is actually pretty common.  Here are two articles you might find interesting or want to share with others.

The Role of Rummaging in Middle Stage Alzheimer’s

Is Rummaging a Typical Alzheimer’s Behavior?

Some people think they are looking for something to do when they rummage.  But I think they are anxious and know something isn’t quite right.  Sure, they could be looking for something, but I think the brain misfires and perhaps they panic internally and start doing something repetitive to calm themselves, like a baby that rocks himself or sucks his thumb for comfort.

In the midst of all this, dad introduced me as his wife and better half, and when I left, he said I should go to bed because it was late.  It was 4 o’clock in the afternoon.  He told me the phone is broken, the TV remote is broken, and all the clocks are broken, but they are all in perfect working order.  The strangest part of all of this is that he can be this way one day, and the next day he seems quite lucid.

I sure wish someone could explain that to me.

© 2012 Julie Hall

Time Waits for No Man

The older you get, the faster time flies.  At least, that’s how I see it, and how older clients have always explained it to me.  “Time” is a difficult and challenging subject.  We spend tremendous amounts of money turning back the hands of time because we cannot gracefully accept the passage of it and its effects on us, yet we yearn for as much of it as possible.  We pray for long and fruitful lives.

For caregivers watching a loved one suffer, the passage of time can be cruel.  With a disease like dementia, time can either be a friend or a foe, depending on your attitude and what stage your loved one is in.  As time goes by and the disease progresses, our loved one accomplishes less, understands less, communicates less, and their very “person” is seen less.

Even the act of telling time for our afflicted loved ones becomes nearly impossible.  I have noticed my father tinkering with every clock in his place and every one of them is wrong.  He says they are all broken and he needs new ones.  He has gone through 3 large packs of batteries, not realizing it is not the clock that is malfunctioning.  I “fix” them all each time I see him, and the next time too, as they are all wrong again at every visit.

While frustrating on many levels, I see a man really struggling to make sense of the clock face with all the numbers, pointy hands, and lines separating the minutes.  It must be one big jumble to him, and very confusing.

While it would be easy to blow my stack and snap, I try very hard to breathe deeply and remind myself that I do not know what it is like to walk around in a fog.  This is the only thing keeping me on the level.

In our case, I am not 100% sure that time is our friend.  I’d like to think so, as we still have many blessings found in between all the heartaches and challenges.  When they are at the stage that they know they are losing their abilities, I find myself praying that he goes through it quickly, so he doesn’t know what’s happening.  Some of you might find that harsh, but I prefer to think of it as merciful.

But no matter what stage we arrive at, I am grateful for all the time I have with dad — good, bad, or indifferent.

© 2012 Julie Hall

Seeing the “Value Added” in Alzheimer’s

The average person would probably question my sanity if I suggested there were hidden values found in Alzheimer’s.  A year ago, I would have too, but things have changed since then.  I have changed.  For the better.

As an expert in personal property, I valuate items every day.  Does it have value?  If so, what is it worth now and could it be worth more in the future?  Should I keep it for sentimental reasons or sell it?  The questions are endless but I always have a solution for my clients.

An appraiser looks at an item with a discriminating eye.  We look for characteristics of value, such as condition, rarity, quality, etc.  Dare I compare a fine antique to my father who has Alzheimer’s?  Yes.

In the past, his affliction with this disease, and knowing what’s coming in the future, threw me for a loop.  Recently however, I am beginning to see the value of this one-on-one time with him, as his disease has allowed us to bond closer than we ever did before.  He laughs with me, he dances with me, he cries with me.  I physically touch him more with hand holding and hugs, and he magically touches my soul right back.

The spirit housed within his afflicted body is better than good — it’s perfect, and now I see the beauty in it.  Some of this came from my willingness to engage in these experiences; not everyone has the ability to embrace it.  Once you open yourself up to it and join their journey, it brings about these blessings that you normally couldn’t see or feel.

I do not know the exact moment this epiphany occurred, but it came out of nowhere, a precious gift that felt like it was custom-made for me.  The surprise snippets of lucidity, the loss of his filter which allows him to be in the moment, the lovely old memories we share, are all at this very moment, “golden.”

This is my treasure.  He may not remember it, but I will.  I vow that I will never forget.

Just like a beautiful antique that has mellowed with age, he grows more precious with time.  It is the limited time itself and the decline of his cognitive ability that makes him more rare and more valuable with each passing day.

© 2012 Julie Hall

The Indignity

We’ve had a couple of instances where dad didn’t quite make it to the bathroom.  The doctor suggested he is chronically constipated, and eventually the body just “blows” because it can’t hold it anymore.  I can’t imagine anything quite as embarrassing as that.

He came to me and told me what happened, and once I walked into his place, I could see and smell what had happened, though the maid staff had done the best they could.  The rest was up to me including some laundry and bathroom rugs.  If it wasn’t apparent before, it certainly was now; the tables had turned and I was officially the parent.  I told dad I was sorry he was having this problem.

Strange, but I never thought the quick-witted jokester in me could keep a straight face and carry this particular issue with the dignity required to handle the situation.  Poop, and all that comes with it, is universally “icky” to discuss but part of life that has to be dealt with.  I surprised myself by cleaning up and telling dad it was okay and that accidents happen.

For a brief moment, standing all alone in his bathroom, the thought occurred to me how I would want someone to treat me with respect, dignity, and compassion, when I get to the point where my physical body begins to fail me.  I would want someone kind and loving by my side, who would never make fun of me, and would understand life and the cruel reality of what could be someday.  I wouldn’t visit there for long in my mind, but I went long enough to experience this strong wave of emotion.

To be honest, I don’t know how I did it.  I dont’ know how I didn’t gag, didn’t walk away, didn’t throw my arms up in frustration, didn’t cry at the indignity of it all.  I don’t know how I didn’t question our creator in whom I have abundant faith.  And I don’t know how this is really going to unfold.

Right now, there is only one thing I do know: that he can count on me.  As for tomorrow, that’s another day with another solution.

© 2012 Julie Hall

A Window of Lucidity

This new medication has dad thinking a little more clearly and able to communicate more like he used to do.  Our conversations lately have been very crisp and enjoyable.  Knowing this could cease at any time, I found myself very appreciative of this time with him and took the opportunity to be as nurturing and understanding as I could be.

On the way to a doctor’s appointment in the car, he decided to ask me about his dementia.  He suddenly short-circuited and could not remember what city or state he lived in, but I played it off as no big deal.  What came out of his mouth was a blessing and I want to share it with you, so you might recognize it as a “gift” when it happens.

Dad said he knows what he wants to say but that it gets all “jumbled up” inside and he can’t get out what he wants to say.  He said this “thing he has” is accelerating now and he can feel it.  He is frightened by the unknown of his disease and wanted to know if there was a cure — if the doctors could fix him.

Only by the grace of God did I remain calm and managed to respond to each of these concerns appropriately.  “It must be frustrating for him to have it all jumbled up inside; I was sorry this has happened to him, but I am right here with him through it.  No, there is no cure, only medication management to try to preserve his memory as long as possible.”

There are some who may disagree that I told my dad the truth, as it might upset him more; but the truth seems to work for him, at least at this point.  I explained that it affects his short-term memory, which is why he remembers everything from long ago, but can’t remember what he had for breakfast.  I said nothing more than that about the possibility of him losing more memory.

Dad shared with me that he did not desire a long life with this disease, as he had already stated in his advanced directives.  Thank goodness, mom and dad both had those documents done and in a file for us kids to use.

We rode on in the car in silence.  A few minutes later dad said, “Oh my God … will this have an effect on you?”  I redirected dad by telling him by the time I get to be his age, they will have a cure or better medications, so there was no cause for worry.

I’m left with a haunting thought.  Which is the lesser of two evils: dad being clearer and knowing this is happening to him, which has to be so hard on him, or just sliding into the fog and not knowing?

© 2012 Julie Hall


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