The Aftermath of Lost Independence

I’ve achieved numerous milestones in my lifetime from boyhood to adulthood. I got my first job at 16. I got my drivers license at 17. I went to college during my senior year of high school and went on to earn a bachelor of science in psychology and spent a short time in the field. I got married and fathered three children. I’ve been married twice and now to a wonderful wife with a step-daughter who I care for as my own. I spent twenty years in the restaurant business learning the ins and outs of it. I became a pretty good cook doing so. 

I’ve also reached a few milestones I would’ve rather done without. But with the grace of God and His strength I overcame years of alcoholism and anorexia in my past. For years I self medicated my bipolar when my medications wouldn’t work with alcohol that almost cost me my marriage. I went through a nasty custody battle that caused me to feel out of control and as a means to find some form of it I fell victim to anorexia for six years. But by finding my renewed relationship with God He restored me and I can add the milestones of recovery to my list.

With the diagnosis of Parkinson’s and dementia I’m making a new list to mark off. A list of losses. I’m only 40 and I haven’t driven in over five years. February 18, 2010 was the last day I drove. I no longer even have a license. I remember my wife and I having “the talk” with my neurologist about me driving. It was the first step of losing my independence. I don’t drive because it’s too dangerous. I can’t react fast enough and I get lost. I get disoriented and confused. I’ll admit I’ve driven our car a couple of miles illegally a couple of times, but we won’t tell everyone about it. But for me to drive on a regular basis is too dangerous. 

I’ve accepted my diagnoses. I’ve faced reality by now. I can count that on my faith. I have found peace. But it wasn’t always that way. For a while it was depressing. For a while I was angry. The loss of independence is very life shattering. You lose your identity. You are no longer who you were. You are less of the person of who you were. You are broken. Unfixable. Childish. A burden. It is a pain that comes and goes with each and every loss.

Pick a fight

Each one of us is a unique and unrepeatable miracle of God’s grace. My wife is a miracle to me. My children are miracles.

But I do not always feel like an unrepeatable miracle of God’s grace sometimes. Unique yes. Much of the time I feel alone in this world. I mean after all, how many other people do you know who for years self medicated with alcohol and addiction and had an eating disorder, anorexia for six years and recovered from all and struggles with bipolar, migraine, Parkinson’s and dementia now. But more often I behave as though God puts up with me because He made me and now He is stuck with me. 

Logically I know this is false, but deep, and sometimes not so deep, inside it nags and gnaws at my heart, at the security and love I feel from not only others but also about myself. It creeps into my prayers, into my thoughts, into how I love and relate to my wife, to my kids, and to me.

Bipolar disorder is one of the most elusive illnesses we know of. The lives of those who live with are written like a bestselling mystery novels. The beginning opens in the middle of nowhere and every page is a twist and turn full of surprises never knowing what is going to happen next. Recognizing our thoughts are awry and our judgment is impaired is a risky business for anyone dealing with a mental illness. It all seems so sensible in our delusional state. We need to come to the conclusion there is an impairment in our functioning that prevents us from living life normally. Then again I hate that word, “normal.” Who says what is normal?

Medication Scare

Medications! Oh how I hate them. Well, I’ll be honest there are some prescription meds that can be fun I’m on but in all I hate them. I’m no stranger to taking medications. I’ve been taking them since I was a young child and as an adult I’ve always managed them myself. I took them for severe asthma on a daily basis as preventive treatment as a child. Carried an inhaler with me everywhere I went. I was a sickly child. Had pneumonia five times which landed me in the hospital three of the times. Of all the sicknesses I’ve had that one I out grew.

But I also grew up undiagnosed with childhood bipolar which later got me diagnosed with Bipolar 1 mixed rapid cycling with psychotic features where I tend to lean on the depressive side. I was diagnosed in my early 20’s. Twenty-four I think. So I’ve been taking meds for that ever since. Almost twenty years as long as I’ve been med compliant. Being mentally ill and med compliant doesn’t always go hand in hand. But for the most part I have been. I’ve had my mishaps with my mental health medications in the past years ago. Some on purpose, some not on purpose. The on purpose times were during dark depressive days I was fighting just to stay alive. The not on purpose days were due to side effects or getting new prescriptions and the meds not mixing well. 

I had a scare the day before yesterday that many of my Facebook friends from my regular page know and my dementia support group already know about. At 8:00am I took my morning meds. Around 10:00am for some reason thought I hadn’t taken them so I took them again. Within two hours I took double the dosages of all my morning meds. Some of them are very dangerous to take too much of. My chest started hurting and I was getting very foggy and extremely exhausted. One med was a blood pressure pill I take for migraine prevention. Another was an anticonvulsant. Another a sedative and a benzodiazepine with a muscle relaxer. Luckily I was talking to my wife on Facebook and told her what was going on. She rushed home and took me to the emergency room where they monitored me for a few hours. My blood pressure was a little low for a while and the EKG was fine. My blood pressure returned to normal and I was released to sleep it off. Needless to say I’m ok and we have already come up with a new system to distribute me my daily meds.

I received wonderful words of encouragement on Facebook with countless words of advice on how to possibly come up with ways to handle my medications all of which my wife and I can glean from. They showed so much love.

Like I said, I’m no stranger to medication. I’ve taken it for almost 40 years. Medications are a two-edged sword. They play a vital part in helping the person with dementia to sleep, in controlling their agitation, or in treating other conditions. At the same time, they are susceptible to overmedication and to reactions from combinations of drugs. 

I don’t know if it was the dementia that caused me to forget I took my meds or if it was a side effect of one my meds. I didn’t take anything new or anything out of schedule. I took my 8:00am meds as usual, with coffee and a Coke. However, I have been more forgetful here lately. 

So it seems I am no longer able to manage my own medications now. I knew the day would come. And I have always feared a dangerous mishap with my medications. So I’m glad it didn’t turn out worse than it did. We left the hospital and went to McDonald’s. 

I handle the loss of independence fairly well. I know it will all come in steps one at a time eventually. I can’t control it. I can’t foresee it and I accept that. I can’t even anticipate the speed of each arrival. I accept the fact that now my wife will prepare my medications each night and prepare for them for me for the next day. I understand it is for my safety and so that it means I will be around longer for her. Rather than getting angry at this loss of independence I have to accept it with grace that I have a loving wife who is here for me to accept me as I am and is willing to care for me as this disease comes.

Good Days...Bad Days

Years before my body ever fell victim to the demise of Parkinson’s my mind and sanity was at the

mercy of Bipolar ever since I was a child. As I grew into an adult I was specifically diagnosed as Bipolar 1 mixed rapid cycling with psychotic features. I’m no stranger to unpredictable changes. I’m no stranger to bad days and I’m no stranger to good days. Although my good days could get me into trouble.

In January 2002 I wrote in my journal, “I find myself amidst another attack. It’s odd to refer to it as finding myself since it seems I can never hide from the pain. It always finds me as some late night stalker tormenting me following me everywhere I go only to jump out of the corner to make its presence known. I feel like I have made someone or something mad, to have this pain hurt so badly. Sometimes I wonder what it would be like to have no attacks. To be able to do the things I need to do. Would I get things done? Would I get better grades? Would I be more pleasant to be around? Would others tolerate me more? No pills! No darkness!

Life has become like a storm. The pain arrives either suddenly, like lightening or slowly, as the thunder from a far off storm building its intensity but instead inside my head.”

I liken my Parkinson flare ups and dementia to my bipolar episodes. Much of the time I was not aware of their impending damage that was about to enter our lives. But my wife on the other hand could spot the subtle changes in me on a minute scale. 

I could slowly slip into a suicidal depression before it was too late. Unknowingly I would find myself almost paralyzed bedridden while my mind was plagued with suicidal thoughts. Or I could one night go to bed feeling on top of the world only to wake the next day to have slipped into what I call the “Nothing Feeling,” a state where I only exist completely void of any and all emotions. The same could go for a manic phase.

Dementia and the Five Senses

I have to thank Elizabeth Dunbar for this wonderful topic. Some times as my own body changes due to the Parkinson’s and/or dementia the changes in my senses become second nature and I don’t think of the changes as events and often times I adapt to them without realizing it. Unlike a sudden sly of hand card trick, changes with any of the five senses when it comes to dementia tend to be subtle. For example, when I lost my sense of smell I didn’t realize I was losing the ability to smell the subtle aromas in the kitchen as I cooked. I’m 40 and I’ve been cooking since I was a teenager. I needed my sense of smell. I’d been in the kitchen and restaurant business for twenty years. My taste buds were changing as well. 

Dementia can affect any of the five senses in two different ways; physically which is how they body literally physically transmits signals to interpret a sense and/or how each sense is interpreted by the brain and mind also known as sensory processing. If there some form of deficient behavior going on then it’s known as Sensory Processing Disorder(SPD). Take vision for example. A person can have sight problems in one of two areas, either the eyes itself could be damages (physical) or the brain (SPD). They eyes may be perfectly healthy. Maybe it’s the brain misinterpreting signals. I’ll explain vision more later but the possibility of either cause is the point.

Vision

Since my dementia has progressed I’ve noticed with the last 6 months my eyesight worsen for reading. My normal eyesight is fine. I have no problem with farsightedness. I even have no problem with night vision. I’ve always had very sight at night. Since childhood I’ve spent many countless sleepless night nights awake in the dark helping my eyes able to see better in the dark. But once I try to read I need reading glasses which I didn’t up until I was 37 which was right before I was diagnosed with dementia.

People with dementia may experience a number of changes in visual abilities. For example, they may lose their ability to comprehend visual images. That is they may see fine, but they may lose their ability to comprehend visual images. Although there is nothing physically wrong with their eyes, people with dementia may no longer be able to interpret accurately what they see because of changes in their brain. Also, their sense of perception and depth may be altered. This is one of the reasons I longer drive. Here are few safety concerns:

Making Memories

I lied to my wife. And the best part was she wasn’t mad at all when I told her what about and why. No I don’t believe in lying and I don’t make a practice of doing it. But I had ulterior motives for visiting my brother and family when I. You see I mainly went to complete a project with my sister- in-law. I just had to keep it a secret from my wife.

Since last year I’ve had this vision of having some photographs made of myself for my wife. I wanted portraits made of me before this illness completely has me in its grips. I wanted her to have photographs to look back on and remember me how I was before it took me over completely.

How I was going to do was easier said than done. I can’t handle the bills and I can longer drive. So I

didn’t know how I was going come with an excuse of missing money to explain the cost of a photographer let alone getting me to one. Then I found out my sister-in-law could do them for free. All I needed to do was go stay with them a few days which is not uncommon for me to do anyway because my mom lives with them as well. 

So one day we trekked the one hundred degree weather and took photos. A lot of photos. And they are worth it. I got plenty of photos to edit and give my wife. The props are me, a suitcase, my Bible, and some photos. We focused on the theme of me saying goodbye to my memories and to those in my life I love. The former me was walking away on a train track. 

We did other poses that I’m fond of. I normally don’t like taking photographs but this was important for me to do for my wife. I want her to have them. Once she viewed them I didn’t know if she was going to make it through them. I expected her to tear up as she did. 

It was a bonus to get to spend the time with my brother. We are a lot alike. The rest of our family joke about how my  brother and I can laugh at things together no one else gets or have inside joke no one else understand. I don’t get to see my brother much and I don’t like that. I want to spend as much time with him as I can because he’s leaving on his fifth overseas deployment to Korea in November for a year. A lot can happen to me health wise in a year.

I enjoyed the time with sister-in-law as well. She’s hilarious in her own way which makes us all laugh. We too tend to have the same kind of humor. And she doesn’t Parkinson’s or dementia but she does have health issues and that has helped us have each other to talk to.

I enjoyed my time with my mom. But my mom wears me out. She’s always on go. I’m not complaining. I would rather push myself and live what life I have and enjoy it than to spend it wasting away. Sometimes it’s just hard for me to keep up. We went garage selling and a few times I had to take time outs to rests. I don’t even like going garage selling but I actually did like going with my mom and sister-in-law. I even found myself a couple of children’s rocking chairs to redo and resell to make a profit. I love to redo furniture.

One of my nieces was with us. I like having her around. I had been watching her when let out for summer but then we moved to another town and I had to stop watching her and that disappointed me. But she is funny and we make each other laugh.

I did have a few rough times while visiting my family. I kept forgetting names and other things. I forgot my sister-in-law’s and my niece’s name a few times. I couldn’t remember the names of some objects. And for the life of I cannot ever remember the names of their pets. A few times I got confused and couldn’t remember some things. And I don't remember Friday at all. But they are all understanding and helpful.

Here are only a few of the pictures my sister-in-law took. And we didn’t even get to finish taking all we wanted to. The one hundred degree heat with no clouds was not in our favor.

Living With The Thief Of Dementia: Why I'm Not Angry At God for Parkisnon's and Demen...