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
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
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
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
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
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
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
You get to a point in the progression of Alzheimer’s where the medications that used to work are either (1) not working as well as they used to, or (2) other meds need to be introduced to handle new issues such as delusions, paranoia, anxiety, aggressive behavior, etc. It becomes a bit of a Catch-22 from what I can see thus far. We know from studies and observation that the disease will eventually progress no matter what medications they are on, but the meds do help hold the progression back awhile, offering a better quality of life … or do they? This is my personal quandary.
I am very open to receiving information from our doctors and professionals with regard to this disease, and most of the time, I agree wholeheartedly with what they have to say.
But recently my father has been on a new medication they added to the normal list of Alzheimer’s meds that has curbed some paranoid behavior. There’s good news and not-so-good news. While it has curbed this behavior and he is easier to deal with, he shared with me that he no longer feels like himself and asked me to take him off of it. I could see it in his eyes that he was depressed, and that was enough for me to really think about this.
On the one hand, he is thinking clearer, which is a gift. But he is miserable, feels very sluggish, and sleeps much more than he used to. He is aging before our eyes and it is a difficult line to walk, not knowing the best decision for our loved ones. Do you take him off and the fog and paranoia continues, or do you keep him on so he can think clearer but he is very sluggish? Or maybe, we just reduce the dosage so he’s not as sluggish … your guess is as good as mine.
I do not have the answer to this one. I can only go on gut instinct and pray about it, because all I want is what’s best for him. It sure is difficult to know what that is.
© 2012 Julie Hall
It was an inside job, all the turmoil and turbulence I felt regarding dad, his care, and his Alzheimer’s. Sometimes you just don’t know what you are feeling. There are days I’m not sure I can handle what’s coming with him, and other days I feel like I can conquer the world. The last couple of weeks have felt like a hell-hole, but now I suddenly and inexplicably feel very calm. What contributed to this is found at the end of this blog.
Here’s a sample of our week:
Dad told me the “suits came to his place and that he was going to be fired on Monday.” He said his doorstop was moving back and forth at night. He accused his waiter of not serving him dinner, when in reality, he had just eaten moments before. He lost his hearing aids again, which I found; an hour later he forgot where they were … they were in his ears. He accused my dear sibling of stealing from him (which completely shattered our hearts). He threatened to leave and “go home.” He demanded an obscene amount of money in cash to be kept in his room, because it’s “his money.” It goes on and on …
Two cousins came to visit dad over the weekend and he was very lucid for their visit; by the time they left, he was in a fog again. No one understands it, until they witness it themselves. One day he is “on” and the next day he is “off.” Way off.
I am not sure if it was my cousins’ visit, as they have a calming presence and great energy, but I suddenly realized that no matter what I do for dad (and I feel I do a great deal), I can’t solve this problem. I can’t help him through the disease, other than working with the doctors and the staff to make him as comfortable as possible. I can’t make it go away. I can’t even make his days better for him. I can’t spend my days wondering if he’s ok, because he isn’t. I can’t be logical about this, because there is no logic with Alzheimer’s. And I can’t spin my wheels pondering if he knows that Alzheimer’s is gripping him. I heard the doctors loud and clear; the medication holds the disease back a little bit, but ultimately the disease will win.
Since there’s so much I can’t do, what is it I can do?
- I can always have a smile on my face and be compassionate.
- I can recognize the disease is winning, even though I personally loathe defeat.
- I can reinforce within myself not to take anything he says personally.
- I can, and will, walk with him on this entire journey until he takes his final breath.
- I can be there for him, because he would never leave my side, if the shoe were on the other foot.
- I can push myself to the ultimate test of being patient — a virtue I do not easily possess but am learning.
- I can pray and rely on my faith.
- I can cry when I need to, understanding this is not weakness, but a healthy release.
- I can help others who are going through the same thing.
- I can heal myself so I can be healthy now and in the future.
And with a tentative heart, I can sweetly surrender to his fate. I did this recently, and ever since then, I have been granted a peace that I didn’t feel before.
© 2012 Julie Hall
It’s the first time this has ever happened. I made my usual call to Dad during the day to say hello and he couldn’t understand a word I was saying. He said, “I’m not getting you.” Did he mean he couldn’t hear me, or he didn’t understand me? He mentioned hearing a loud noise but he thought that might be in his head so I couldn’t hear it. I chirped on as usual telling him I was still at work and we finally hung up because there was no possible way this line of communication was going to work.
Since he has new hearing aids, I am doubting that’s the problem, but it could be a wax build-up in his ears. Or maybe he lost or dropped a hearing aid. Who knows? It was a saddening feeling, knowing I had to hang up without telling him about my day, and vice versa. This makes it even harder for the child to communicate with the parent, and certainly makes the parent feel even more isolated. It is a helpless feeling on both parts.
Here I sat, momentarily frustrated, feeling the blood pressure rise with yet another issue, another problem to contend with. Then I felt ashamed for thinking that. How frustrating this must be for him. I am the strong one who has to rise above all of this, not him. He already spends the day in a foggy atmosphere, so I need to figure out the solution if I can. Not only is he dealing with a progressive disease of the brain, but very poor hearing complicates everything from A to Z.
That’s the thing about this disease. We have to become a top-notch detective to figure it all out. We have to read between the lines where there are no lines. And go where no man or woman wants to go — into the world of Alzheimer’s. Do our homework by researching the latest “weird thing they did today,” but you don’t know what to call it.
Much like Columbo, I find myself scratching my forehead trying to figure it all out, but one day I will. I have to, in order to help him.
© 2012 Julie Hall
Julie Hall
In The Trenches 