Posted on March 18, 2011 by

The Long Goodbye

Just when a person’s memory really begins to matter most in life, this cruel and heartless disease comes along, disrupting everything and everyone that is close.

The fact is, Alzheimer’s is an irreversible disease and, unacceptably, has no known cure. It slowly steals the victim’s mind, leaving a long trail of broken-down, worn-out family members and caregivers behind.

Everything comes with a price. The average Americans’ life expectancy has increased dramatically over the last 100 years, expediting the numbers of those plagued with Alzheimer’s, making it a drastic price to pay.

There appears to be a sense of shame associated with this disease. Notoriety seems to be given to celebrity driven causes such as breast cancer, heart disease, diabetes, etc. I’m not trying to place the importance of one fatal disease in front of the other. But, for example, a professional sport such as Major League Baseball uses Mother’s Day as an opportunity to have ball players swinging pink bats or running in pink shoes for breast cancer awareness, Alzheimer’s, on the other hand, seems to be kept lingering completely outside the ballpark.

The disability of being mentally impaired has been swept under the rug for hundreds of years. “Ol’ Uncle Charlie has been very confused lately, so we decided to let him live in the cabin on the backside of the property.” This attitude has stolen attention and devotion away from this mind-devouring disease that it truly demands. Even as Alzheimer’s continues to climb the scale to one of top leading causes of death, it still seems to remain stagnant on the priority list of lobbyists and politicians.

There is nothing prejudiced about this disease: creed, culture, gender, rich or poor; it will strike down anyone, taking along family members and caregivers along the way. It simply does not care!

Usually, most caregivers are a husband or wife, son or daughter that love the patient dearly. They constantly feel that they have to give the best possible care to ensure their loved one’s well-being. And sadly, it’s the family who witnesses the patient slowly fading away, which has prompted many to use the sobriquet of “The Long Goodbye” for this disease. Having experienced this personally, I couldn’t agree more.

At the very end, Hospice kept telling me my father wouldn’t make it through the day, but then found it necessary to repeat themselves fourteen days in a row. The ups and downs of this duration was mentally and physically exhausting. By the time my father passed, I barely knew my own name. My sister and I took shifts sleeping; if you could call it that. The rest of this precious time was spent tending to Dad and watching him wither away to the point where we could hardly recognize him.

This is a period of time that I like to call the “waiting room.” I was afraid to leave the house for a five minute trip to go to the store, because I didn’t want to forgo being with my dad for his final breath.

It came to a point where I felt like I had split personalities. There was one half of me praying that his Maker would hurry up and just take him and stop his suffering. This brings on a tidal wave of guilt. Well, let me tell you something; everyone feels this at one time or another; it’s a natural reaction. Don’t torment yourself over this.

The other half was pleading for him not to go! Somewhere inside myself I believed that there was still a glimpse of hope and he would sit up and make a miraculous recovery. My heart was being torn in two different directions.

Please take my advice and don’t go through this alone. Having someone with you to initiate a conversation or even cry with you is a blessing. Talk about the happy times you shared with your loved one. The fact that you have someone there gives you a chance to step outside for a minute and breathe in some fresh air. Trust me, it will be immeasurably comforting.

I personally know how difficult it is making phone call after phone call, informing family and friends that the end has now finally come. Try not to do everything yourself. Ask for help. It’s nearly impossible to think straight at a time like this. It’s in times like these that a family needs to pull together and lend each other support.

I don’t believe those left behind ever get over losing a loved one. Somehow we just learn to accept it.

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  • Laura P said:

    "Thank you for sharing your journey. It helps to hear the stories from other people, to share together the pain and frustration and maybe somehow, together find the answers. I believe the answers are along the lines of nutrition, certain supplements, lifestyle. Those answers though may need to be things that are implemented long before the early signs of alzheimer's even begin. I'm sure we will learn with every step, every story.".

  • winnie said:

    "A true account of how it really is".

  • Linda Giorgilli Rice said:

    "My mom has delighted in reading Gary's articles to me for a long time now and as a devoted avocate myself to raise awareness of Alzheimer's, but more particular Parkinson's disease, I cannot express how exceptional I believe Gary's knowledge, compassion, devotion, and expression of his thoughts and feelings about Alzheimer's reach right to my heart. He is so deserving of this award and I look forward to reading the books he has authored. The public needs to be awakened from its sleep over so many neurological and other diseases. Thank you to Gary for all of your devotion and understanding of Alzheimer's. I have a feeling your father would not be surprised to learn the journey his son has taken in this regard.".

  • Kathy Guess said:

    "Gary So Very Well Said and How I felt Through The Experience with my Mother A HARD AND LONG GOODBYE ups and down,many different emotions, fears, and hopes, Every Day Wanting The Best For Our Loved Ones "God Bless" Very Hard To Watch A Loved One Suffer From This Horrible Disease Of Alzheimer's".

  • Julie Roberts said:

    "The long goodbye is exhausting ,years before the final victory of death-sleep. Days when even the sun shines brightly, but not enough to to push the reality of the degeneration of a loved one away. In my case a mother,who was so fit and happy with life. Then sat in the chair motionless, stiff, without emotion or longing to live. Guilt disrupts my day, thinking of happy days spent with her. Just hope that one day a vaccine or treatment will end this misery for all involved. The fear will I inherit it too.".

  • Tony Hogben said:

    "I am a Alzheimers/Dementia sufferer living in Australia[Queensland],and am having very good results controlling this insidious disease with a drug currently on the market, but not directed at A/D....I had a website set up for me to tell all who would listen,of my very good fortune google at your leisure and I hope my experience will be of some help to others....Regards Tony Hogben.".

  • Lorrie said:

    "I know we can't know for sure what role nutrition does or does not play in someone getting Alzheimer's, but through my research it does appear that certain nutrients do help stall the disease and even improve symptoms. Coconut oil is one. High quality fish oil, the kind you get in the health food store is another. Acetyl L-Carnitine is an amino acid available in capsule form in health food stores and it keeps brain cells healthy. The article that Clyde posted is very encouraging. Thank you, Clyde! If you aren't aware of, they are a wealth of information on natural eating, supplementation and research.".

  • clyde said:

    " Please see this newspaper article.".

  • Judith said:

    "I am almost finished reading your very enlightening book. My husband is 90, I am 70 and he is showing many signs of Alzheimer's but has not been "officially" diagnosed. His primary care "doctor" is part of an HMO and I'm not particularily fond of them. They did send him to get a CT on his brain and said they would call him to see a Neurologist who comes to their office one morning a week. My husband has always been the picture of health, but we have only been together for 10 years, so I'm not sure if some of these symptoms have been there forever and they're just a part of his personality. About 5 years ago he started verbally attacking me and from what I've read that seems to be a start of the illness. Where can I get more info on the beginning symptoms as opposed to how he will probably end up?".

  • Michele hanson said:

    "what about coconut oil i have been hearing about any thoughts on it?".

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