A spark of life...if only for a moment

It has been a little over three years since my dad was placed into an assisted living facility, and now a nursing home. As quickly as the disease was progressing at that time, we did not think he would live this long. The journey is still full of roller coaster-type ups and downs, but it seems to be more of a continuous, slow, progressive decline at this point.

For the past three years, my family has continued to visit him. My mom goes almost daily, sometimes more than once per day, and is known to call and check on him at any point during the day, and even in the middle of the night. His siblings haven't been to visit him in more than a year. He only has one friend who continues to visit him. His pastor and former Sunday school teacher come to pray with him.

Visits are not easy. He does not talk. He does not walk. He does not maintain eye contact. He cannot feed himself the pureed food that is prepared for him. He sleeps. In fact, if he isn't eating, he is likely asleep. He can do nothing for himself.

But...every once in a while...

There is a Spark of LIFE!

Every once in a while... He will make eye contact with my mom and truly see her. It is rare, but every once in a while he will smile. Oh, how that makes her day!

Recently, my brother was in town to visit our parents. He and my mom went to see my dad. Danny walked behind my mom into his room, and mom said, "Hey, babe, I have a surprise for you." Danny stepped out from behind her, dad looked at him...truly saw him...and smiled. Did he know Danny? Was Danny just familiar? We don't know for sure. As mom was feeding dad lunch, he looked to the other side of her to see Danny, and smiled again. It was at that point that mom believed he really knew who Danny was...if only for a moment. There was a spark...if only for a moment.

A few weeks before that visit, my mom was visiting dad and when she walked into the room he looked at her and smiled. Throughout her visit he answered her questions with one word answers, but seemed to truly understand the questions. The most fascinating part is that he laughed! He giggled. Then, he cried. He went back and forth between laughter and crying, and she stayed by his side until he fell asleep again, relishing the spark she was able to enjoy...if only for a moment.

Even if it is only a moment...it is worth it! It is worth the hours of visits, where we have no recognition of the life that once thrived, for a moment of recognition. For a moment of clarity. For a smile. To be seen. To be heard. To hear him laugh. To see emotion. To see a spark of life...if only for a moment!

Don't stop visiting your loved one! You will miss out on "sparks" and "moments!"

edited to add...Please do not take this post the wrong way. It is not about who still goes, or doesn't go, to see my dad. Perhaps I didn't word everything with perfect clarity, but you will be missing the point if that is what you take from this post. My family thinks no ill of anyone who finds it too difficult to continue visiting. We understand completely, because it is heart-wrenching for us to see him this way, too. This post is meant to be an encouragement for anyone who is walking through this journey with a loved one to continue to visit, in hope that you may see that rare spark of life. We began the blog, not for updates on my dad, but to help others through this journey. As of a few days ago, there were well over 10,000 views of this blog. This is beyond what we imagined, but we are so grateful that others can learn from our experience, and find solidarity on this daunting road.

Steady Decline - What a difference a few months makes!

For my dad, Alzheimer's has been more like a roller coaster...steep up's and down's, and quick turns, and lots of unexpected's. We constantly wait for the next fast decline, and still, it always catches us by surprise. Decline is always there, but dad has experienced more of a "I'm going to pull the rug out from under you" kind of declines.

Last December, Dad was weaned off two of his medications. We were nervous about the change, but the State requires medication changes, periodically. The State is also very cautious to make sure that patients are not over-medicated. They have strict guidelines in place, and dad's facility is careful to follow those guidelines. Thankfully, dad's caregivers have no desire to over-medicate him to keep him in a drugged state. Even in the toughest of days, they work very hard to calm him without extra medication. One of his caregivers is very sweet to rub dad's chest, back, or massage his hands to try to calm him.

After being weaned off two of his medications, they slowly began giving him two new medications. By the time his anti-psychotic was out of his system, dad was in a terrible state of psychosis. We were eager for them to find a new medication to help him. Thankfully, his new anti-psychotic has worked even better than the last one, and his other medication was able to give him the gift of a few hours of sleep at a time. This is much better than being up four days straight!

Dad has been on the same medications since January, and yet, since March we are seeing great changes in him. In March, he was still pacing several hours per day. He might sleep a few hours at night, and sometimes a few hours during the day, but he was still awake much more than he was asleep. At this point, he could no longer feed himself, but he could sometimes pick up his cup and drink from it. His food was cut into bite size pieces, but choking wasn't a problem unless he was really, really tired and having trouble holding his head up.

I was back to visit dad again at the end of June. He was sleeping at night for several hours. He needed help getting out of a chair. He was beginning to choke a little on fluids (ie water, milk, juice). He was unsteady on his feet, and was no longer pacing. He did not hold his own cup to drink.

And now, at the beginning of September...

He is sleeping...a lot! This is a big sign that the disease is progressing. They have to wake him for his meals, and sometimes he will not wake up enough to eat, so they feed him later. He does not get out of bed on his own. He does not walk without help. He cannot sit down into a chair without help. He cannot lay down in bed without his caregivers bending his body to sit, turning his body to lie down, and then pressing his legs down to the bed, so he can rest. His fluids have been thickened to a nectar-like thickness, but they are talking about thickening them more to a honey-like thickness. His food is cut into small pieces, but we know that pureed food is the next step, and will likely happen soon. He does not attempt to get out of a chair, or his bed on his own. He simply cannot do it.

In the past, the decline was devastating for our family. But now...it brings relief. The fact that he is able to rest is such a relief. The fact that he isn't pacing constantly...and falling...is such a relief. The fact that his medications seem to be a good balance for him...is a relief. He is still in a terrible state before his medication becomes effective in the morning, but it is a relief that the medication actually works.

As we see where he is now, compared to March, we see the steady, yet quick, decline. A lot can change in a few months. Although the disease has full control of his body and brain, we are so grateful for the rest his body is now able to attain.

The spectrum of Alzheimer's

People who haven't had their lives consumed with Alzheimer's don't have a good understanding of the disease. Even those who have lived through the disease with a loved one may only see one end of the spectrum. And yes, there definitely is a spectrum.

For instance...

My mom has a friend whose husband has Alzheimer's. Like my dad, he would be considered in the last stages. For him, Alzheimer's has taken his mind and his memories, but he sits in a chair and watches television, or sits at the table and eats his meals. He follows his wife to his bedroom when it is time to sleep. He is docile. He is calm. He is kind. My mom even stayed with him recently, so his wife could go to a family cookout. Oh, how my mom wishes my dad were like this man.

This is one end of the spectrum.

But...

There is another end of the spectrum. This is where you will find my dad.

My dad is in a men's, locked down, behavioral, dementia unit in a skilled nursing facility. I have heard men curse, and mumble, and I know some of them have thrown punches, including my dad. My mom watched as my dad punched one of his caregivers in the ribs one day. My dad is still strong. It must have been painful, but the caregiver smiled and told my mom he was okay. I watch these men as they get frustrated while they eat, frustrated when they spill drinks, frustrated that they are not understood because their words do not come out cohesively. I watch them stroll up and down the hall. Meandering.

They are not my dad. They straddle somewhere along this spectrum, but they are not necessarily at the other end as the previously mentioned gentleman. Many of them seem mild compared to my dad, although I am sure they have had their fair share of behavioral incidents to be in the behavioral unit.

My dad is at the far end of the other side of the spectrum.

The other end of a spectrum where some form of sleeplessness, pacing, insanity, delusions, hallucinations, and terror reside. This is what tortures me. I don't know what is torturing my dad, which inflicts the terror in his eyes, causing him to pant, tremble, sweat, move,

grab at the air,

grab at our arms,

grab at our clothes,

grab at what we cannot see,

sending a tear down his cheek. My dad does not cry. I've never seen him cry. Is he in pain? Are they tears from fear? Are they tears of misunderstanding? Why is he so panicked?

God, please...please help him. Show us how to help him. Show us how to help him calm down. Show us how to show him reality. Help us bring him back. I feel myself start to panic because I cannot help him.

And then, I pry his fingers off the arms of my brother as we rush out of the room with tears streaming down our faces. We sit in the car and cry. Tears flow every time we leave our dad.

I call my mom. As usual, she hurries in to check on my dad. His medicine has kicked in. He is calm. She feeds him lunch. His caregivers help get him to his bed. She tucks him in, and kisses him, and tells him she will be back soon. He sleeps. Finally, he sleeps. His doctor has found two medications that help him. One helps him sleep. The other is an anti-psychotic. It helps him calm down. It alleviates the hell he is living in at that moment. In those moments of sheer panic and terror, I believe it is close to the feelings that people experience in hell.

I find myself praying, "God, please take him!" I cannot bear to see him live in such torment and fear. I did not expect this. I did not know how far this spectrum could go.

#prayforacure #endalzheimers