Before making judgments...

It’s so easy for people who have never experienced life with an alcoholic to make comments or judgments without all the facts. I founded a support group for caretakers of end-stage alcoholics and recently posed a question to all the members. The question is:

What is the ONE thing you would like other people to understand about living with an alcoholic?

The answers to that simple question are not at all as simple as the question. Some of the responders couldn’t answer with only ONE thing. Here are the results:

1. A good woman cannot sort him out. All the understanding, love and compassion in the world is not enough when one is in the grip of this horrible disease.
2. When the question is “Didn’t you know he was an alcoholic when you married him?” The answer is NO!! I didn’t know he was an alcoholic. Alcoholism is a progressive disease.
3. Alcoholics are incapable of giving back… they are takers.
4. It IS possible to live with an alcoholic while detaching and protecting yourself. If there is no abuse, you CAN make it work. Please don’t judge me because I stay.
5. You want me to WALK away?? Walking away from my 70 year old father is like putting a child on the freeway and walking away.
6. When others see or interact with the alcoholic, the alcoholic is on his/her best behavior, at home they relax, drink and the crazy train gets rolling.
7. Unless an outsider is living in it, they cannot really understand what it is like as alcoholic’s are good at putting on a show.
8. They are master manipulators.
9. The uncertainty of your future. You don’t know what will happen next, let alone a year, You cannot plan anything.
10. Anyone involved with an alcoholic must light their own candle, feed their own soul, learn to meditate or the non-alcoholic will become sick as well.
11. One great day has no guarantee on the next and vice versa. I love my alcoholic mother as I find her and I walk away when I have had enough.
12. The hardest thing is the secrecy connected to alcoholism. Keeping the family secret of my father’s alcoholism was extremely stressful. When the secret is out, there is then the feeling of betrayal to those who wanted it to remain a secret. But, you don’t stop loving the alcoholic as a person.
13. The alcoholic will say and do anything to get their fix. They are driven, but only toward booze and not toward anything that would take them away from the booze.
14. In one person’s opinion, alcoholism is a form of mental illness. For many, a horrendous event may have happened to drive them to want to “not feel anything.”
15. The almighty bottle is the most important thing in their life, even though they don’t really want to be in it. Many detrimental things can happen such as a loss of the marriage, jobs, children, friends; they may serve time in jail for DUI’s; suffer from injuries and illnesses; and they will still want to drink.
16. It is mentally taxing on the caregiver.
17. Even a happy drunk has an evil side that is abusive and destructive. Alcohol is a mistress who destroys everything in a slow, manipulative and steady manner. It’s a cancer. Early detection has higher percentages of recovery. But let the cancer grow and it will consume not only the alcoholic but everyone surrounding the alcoholic.
18. One person said she wished someone had given her a clue that they had a hint of what she was dealing with in a supportive non-confrontational way. Knowing I wasn’t crazy or alone in dealing with the insanity would have been the best gift towards the healing journey.
19. Leaving or staying is not a simple as it sounds. Before deciding for me what the outsider thinks I should do, they should know all the pros and cons of each direction.

I thought their answers were very open and honest. I also hope that anyone who wants to make a judgment about decisions made by caregivers of an alcoholic, think twice about the question that is about to be asked.

To join either of the two support groups, either the one on Facebook or the one on the independent site, please e-mail with your e-mail address to:

immortalalcoholic@gmail.com

Please up "support group" in the subject line. Both these groups offer support and resources to family and friends of alcoholics without judgment or criticism. OARS F&F = Our Alcoholism Resource and Support (for) Families and Friends.

Just for the kids...

I get a lot of e-mail from parents who want to explain to their children about the other parent’s alcoholism or addiction. It’s a touchy subject and there is always the fear of creating more confusion in trying to explain an already confusing subject. I never sat down and talked to my kids about their father’s use of alcohol. There may have been some dialog – but they knew. There was no way they could NOT know. They overhead the arguments, they suffered their own disappointment in Riley’s lack of attention to their accomplishments, failures and just life in general. My kids didn’t need a book because they were part and parcel to it all.

It isn’t like that in all families. Sometimes the addiction is such a guarded secret from the kids that they just don’t know. Maybe they are too little to understand. Maybe they grew to just accept it as a part of normal life because they didn’t know it WASN’T normal.

Carolyn Hannan Bell is the author of an easily understood book “Daddy’s Disease” and “Mommy’s Disease” which offers an explanation to children with an alcoholic parent. She is a practicing licensed professional counselor specializing in substance abuse, codependency, depression and anxiety.

“Daddy’s Disease” features Tommy, a young boy who doesn’t understand why his father doesn’t want to be with him. Tommy and his dog Murphy are easily relatable characters that are fortunate enough to have a Mommy who explains that Daddy’s disease is called alcoholism. She helps Tommy understand that he is not to blame for his father’s behavior and that his father’s lack of attention is not because he is unloved or unworthy.

Mommy’s Disease follows the same concept with a young girl named Mila.

Both books are available on Amazon.com. You can also order one or both of these books by going to Carolyn Hannan Bell’s website:

http://www.alcoholismhurtskids.com/about-the-author-and-helping-children-understand-book-series.html

Be sure to leave a review in the blog comments and on Amazon.com if you should decide to buy these books for your children.

Paper version!

The Immortal Alcoholic's Wife is now out in a paperback version! It's a real old-fashioned, hold in your hands and pass on to your friends kinda book. You can find it on Amazon.com at the link below:

http://www.amazon.com/Immortal-Alcoholics-Wife-1/dp/1502984083/ref=sr_1_1?s=books&ie=UTF8&qid=1414848261&sr=1-1&keywords=The+Immortal+Alcoholic%27s+Wife

The e-book version is still available on Smashwords:

http://www.smashwords.com/books/view/286326

Riding the cancer highway...

I haven’t written much here about Riley’s cancer. I’ve been trying to wait until I had all the facts; all the tests were complete; and a treatment plan was in place. It seems to be a slow process for what I consider to be a disease that warrants urgency. I have only limited experience with cancer, so what the heck do I know?

Well I DO know that Riley’s suspicious growth was found on June 26th. I know that he underwent a series of tests. I know that it was a CT scan and a biopsy that finally gave him an “official” diagnosis of colo/rectal cancer on September 24th. I know his cancer includes aggressively growing tumors. Less than three weeks after the removal of his left groin lymph node, he had a new tumor show up and fill the space left by the missing lymph node. Even the oncologist was surprised at the speed that little pecker displayed.

I know that Riley has been poked, prodded, viewed, examined and invaded in ways that no one should have to endure. Through it all, he has persevered. He has not excessively complained about the medical invasions, but rather taken each step as just one more hoop to jump through. He has shown a determination that I wonder if I would have had if the roles were reversed. Of course, there are times when he has shown his dismay and confusion about the steps of the procedures but those moments are overshadowed by his agreeability. I know that I am thankful that he is not fighting the process.

I know I sometimes feel as though I am trying to walk through quicksand. It’s been what seems like an eternity since we first were told that Riley has colo/rectal cancer back in June. There hasn’t been much rest over the past four months. With all the testing, testing and then some more testing, in addition to the surgeries to get the biopsy and the placement of the port for administering the chemo treatments, it’s no wonder we are both exhausted. And now… we start another step in the journey through cancer-land.

It’s a one-hundred mile round trip drive for each visit to Greenville’s cancer center.  Starting on Monday, November 3^rd, we will be making that trip every single day for the next six weeks. It could be longer – or NOT – depending on how things go. The schedule for Monday is to drive to the cancer center in Washington, NC, at 9:00 a.m. where Riley will have some lab tests to determine if he can actually have chemo that day. If all goes according to plan, he will receive the little infusion box that will pump the chemo medicine into his body at a designated rate. Then we will continue on our journey another 30 miles to the cancer center in Greenville, NC. Riley will receive a radiation treatment simulation test and if that works out, he’ll get his first official dose of radiation.

It strikes me that it's a bit ironic that Riley served onboard fast-attack submarines powered with radioactive material for more than 25 years. He wore a little badge that determined how much exposure he had and if he was getting to a danger level. The Navy was very careful to protect the sailors for the hazards of radiation. Now it is purposefully being shot into his body.

Anyway, after his treatments in Greenville, we will drive the 60 miles back home where we will rest as much as possible before returning to Greenville the very next day. We are fortunate, however, because originally the only time slot available was at 7:30 pm. Now we have been reassigned to 1 pm. Since driving at night is difficult since my eyesight gets dim after dark, I’m happy I won’t have to use the “braille driving method” to get him home.

It amazes me that so many people are able to fight cancer and succeed. I don’t know how they do it – not just emotionally, but financially and time-wise. Riley and I are well insured. We have Medicare plus TriCare for Life and between the two coverages; we will not be forever burdened with medical bills. For that I am so very grateful. It isn’t the medical bills that have me adjusting and re-adjusting the budget. It’s all the other stuff that isn’t covered by anything. The cause for concern is the price of gasoline, supplies, and the possibility of the need for a personal aide, as well as finding space on the calendar to meet the combined needs of both of us.

Getting a job sounded like a good idea to me for about ten minutes. Then it was lovingly pointed out to me that in this state, I cannot be a real estate title examiner because I’m not an attorney. Also I’m “over the hill” and the job pool may not extend much past being a Wal-Mart greeter. Oh! Not a pleasant thought. Then there is the time issue. Where on the calendar could I fit in 20 or so hours a week for working away from home? 

A few close friends have made donations of gas cards which help tremendously. Thank you to those of you who surprised me when I opened my mail box and found the cards. There was one very special contribution from a friend of many, many years. She sent some money to my PayPal account and then instructed me that the money was to be used ONLY for something that was NOT cancer or alcoholism related. She suggested I go to the crafts store or take myself to lunch. It just so happened I was on my way to Greenville that day to pick up a disc containing the results of Riley’s last CT scan. I would be going alone and have some time to myself if I wanted.

I walked into JoAnn Fabrics with my coupons in hand. I wanted to get some things to make a couple of Christmas wreaths for my girls. As I was walking in I noticed a bin of bags of yarn. Hmmm… I have been told that I would be spending a lot of time in waiting rooms during chemo and radiation. A bag of yarn might make that waiting a bit more productive. I was thinking… scarves for Christmas presents or afgans. That would take a big bite out of my present list. I picked up a two bags, went in and cautiously completed my shopping while keeping the budget in mind. What happened when I was checking out was the real surprise.

Jonathan, the store manager, was working the register. When he saw that I was buying two bags of yarn he said “If you buy two more bags, I’ll take $2 off per bag.” I thought about it and told him to set aside all the other cart items and we would see what the cost would be. I picked out a few more bags, with the image of scarves in my head, and went to the check-out stand. Jonathan was waiting patiently. We struck up a conversation about why he was trying so hard to get merchandise off the floor. He stopped scanning and said that he would give me a card for 30% off future purchases for three months if I spent at least $50 today.  

Then he asked what I was going to do with all the yarn. I told him that I was going to be spending a lot of time in the chemo/radiation waiting rooms and this would keep me busy without too much fuss. His mother had just received a “cancer-free” diagnosis and our conversation continued. I lost track of what Jonathan was doing, but came to my senses as he said – that will be $50.

WHAT!! He had put everything in bags that I had originally had in my cart – there had to have been at least $80 worth of goodies in those bags. I protested that there must be some mistake. OH NO!! He said – the bill was $50. I handed him my card and he gave me a discount card for 30% off. As I was gathering up the bags, Jonathan mentioned that I might think about the fact that some people get cold during treatments and could probably use one of my scarves.

I thought to myself – what a wonderful way to give back. There is enough yarn to make about 30 scarves. Now, I’m not really much of a crocheter or knitter, nothing I make is ever perfect, but I’m sure I can give some away to the other patients. I sure they won’t care if there are a few flaws.  So all that time waiting will not be non-productive after all.

My friend’s gift of something just for me brightened my day and my outlook. I don’t think I broke her rule of not doing anything cancer related… the cancer was an afterthought. How I wish all of Riley’s cancer issues could just be a simple, little, tiny, afterthought. Oh well…

Scrub, a dub, dub...

On the page “Leave or Stay” (http://immortalalcoholic.blogspot.com/p/leave-or-stay.html) I write about the difficulties of caretaking an end-stage alcoholic. Many times potential caregivers don’t see the whole range of chores that come with the job. One of those chores is the cleaning up of bodily fluid messes. Alcoholics have a tendency to vomit blood as well as lose control of their bowels and bladder at any time and any place. Cleaning up can be dangerous for the caregiver if not done properly. Below are some suggestions and hints about cleaning up after the alcoholic in your home.

1. Use latex gloves and protective masks when handling any of the articles of clothing or bedding whether or not they contain excrement.
2. Put waterproof pads between the sheets and mattress.
3. The alcoholic’s laundry must be done separate from the family laundry.
4. Keep a very small trash can by his bed. Use a plastic can liner – doubled. He can use this if he needs to vomit and can’t get to the bathroom. Clean using the bleach mixture.
5. Don’t allow him to handle any food. Prepare his meals. If he eats during the night, prepare food and snacks that he can eat while you’re sleeping. There’s no point in designating breakfast from dinner. He can’t make that leap – so just fix what you know he will like.

When Riley was drinking a handle of vodka a day, I was left with a lot of clean up. I used the bleach/water mixture, but I still had to do a lot of scrubbing. Below are some of the methods and products that worked best for me.

General cleaning: 1 part bleach, 2 parts hot water, 1 cup of Borax Laundry Soap, 1 cup Washing Baking Soda and a bit of Dawn dishwashing liquid. I used this for hard surfaces except hardwood floors. I used a scrub brush, paper towels and old face cloths.

Laundry:  Amway sells the best laundry products I have ever used.  The SA8 is awesome by itself, but for Riley’s clothes and bedding, I used the SA8, Tri-Zyme additive and bleach. The Tri-Zyme is great for getting out blood and feces. I separated colors from whites and then pre-washed the whites in very hot water, high water level, hot wash & hot rinse.  Then I sent them thru a regular wash cycle with fresh ingredients. I dried them in a very hot dryer.

For colored laundry, I used the same cleaning combo of SA8, Tri-Zyme, but omitted the bleach and added Borax and Baking Soda. I did a pre-wash and then a regular wash using warm water, warm rinse. If they clothes were still smelly, I put them thru a second wash – same as the first. They were then dried in a hot dryer.

Carpet: This was by far the most difficult to clean. Fortunately I had a Bissell Pro-Heat Pet Carpet Cleaner. I pre-treated the area with Oxi-Clean and got on my hands and knees with a scrub brush. I used a mask and double latex gloves to prevent inhalation and touching the gunk. If I wasn’t happy with the results, I added a bit of hydrogen-peroxide (be careful, it can lighten the carpet color), scrubbed it around and hoped it looked better. Then I used the regular carpet cleaner with the intended for pets and used the cleaning machine. After that I did a rinse with Borax and Baking Soda. I put it into the tank where I would normally put the cleaning liquid. It worked pretty well, but the stain does keep reappearing after a couple of weeks. The best thing I did for the carpets was to have a professional carpet cleaner come in every three or four months and do just the areas where Riley spent most of his time.

Bathroom: This room was the smelliest, sickening room of all. There were feces on the floor, toilet, walls, light switch, door handle, sink, faucets, etc. We had a tile floor so I made my bleach/water combo and literally poured it on the tile. Then I let it stand for about 30 minutes. I had a deck brush and used that to scrub up and loosen the stuff. Then I used the broom and swept it up into the dust pan, dumped it into the toilet and flushed. Then I used another lighter pour of the liquid onto the floor and mopped it up. After that, I used my steam mop to go over the floor which further sanitized it. Now I could actually walk into the bathroom to clean the rest.

For the outside of the toilet, I used a hand-held steam gun and then wiped it down with bleach. For the sink and countertops, I sprayed bleach directly onto the areas and wiped them down. Then I used the steam gun just to sanitize it even more. I used Comet inside the sink, rinse, and wipe with bleach.

I made a new batch of the bleach/water and added Borax and Baking Soda for wiping down the walls, door handles, anywhere else that need a cleaning. In the bathroom, bleach was my friend.

A lot has changed for me since those days. Riley is not drinking and is not making nearly the mess that he did when he was inebriated. However, his current physical condition means he makes a mess when he changes his underwear. It isn’t nearly as bad as having poop smeared on the walls. Do not doubt – he is messy – he’s just not so unsanitary.

There are lots of products on the market that I have not tried, but have discovered their uses since my heavy cleaning days. I’ve made a table of some of the things I used and my discoveries so you can see what may work in what capacity. From this you may end up making your own concoctions that work best for you.

Product	Tile / Hard floors	Wood floors	Counter-tops	Bath fixtures	Walls	Carpet	Laundry	Upholstery / Mattresses
Bleach	X		X	X	X		X	X
Borax	X		X	X	X	X	X	X
Baking Soda	X	X	X	X	X	X	X	X
Dawn	X	X	X	X	X	X		X
Tri-Zyme	X		X	X	X	X	X	X
SA8							X	X
Oxi-Clean	X		X	X	X	X	X	X
Murphy’s Oil Soap		X
White Vinegar		X						X
Pledge Liquid Wax		X
Mineral Spirits		X
Club Soda						X		X
Meat Tenderizer				X	X	X	X	X
Hydrogen Peroxide	X		X	X	X	X	X	X

To purchase any of the Amway products, use the below link:

http://www.amway.com/SherrieRidge/Shop/Product/Category.aspx/Laundry

Now that you have a list of possible products, here are some links to tell you exactly how to use them to get that fresh, clean home that hard to achieve with an alcoholic in the house.

http://www.wikihow.com/Remove-Blood-from-Hardwood-Floors

http://www.howtocleanthings.com/stains/how-to-clean-blood.htm

http://www.stain-removal-101.com/feces-stain-removal.html

http://www.ehow.com/how_5783632_clean-human-feces-carpet.html

That’s it for my housekeeping tips. Be sure to post in the comments what has worked for you and what has not. Give us your tips, we could all  use them.

Dementia... in case you forget

As per Google:  Dementia (noun) – A chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning.

As per Merriam-Webster: Dementia (noun) – A mental illness that causes someone to be unable to think clearly or to understand what is real and what is not real; A usually progressive condition (as Alzheimer’s disease) marked by deteriorated cognitive functioning often with emotional apathy.

A simple explanation of dementia was described to me by an employee at the Alzheimer’s office. She said imagine the synapses in the brain which are electrical currents traveling to a nerve ending where it zaps a nearby nerve-ending thereby completing its process. Now imagine that when the electrical current gets to the first nerve-ending, there is no other nerve-ending for it to zap onto. The thought contained in that first nerve-ending never gets completed and gets lost somewhere in the brain. Those thoughts are still there, stored somewhere in the gray matter, but retrieving them is problematic and sometimes impossible.

There is more than one type of dementia.

1. There is the ever looming Alzheimer’s Disease which slowly erodes memory and thinking skills which is the most common in the dementia family.
2. Frontal Temporal Dementia is a group of diseases which affects decision-making, behavioral control, emotion and language. They are:
1. Primary Progressive Aphasia – which gradually degenerates speech and language;
2. Progressive Supranuclear Palsy – which gradually degenerates walking and balance;
3. Corticobasal Degeneration – which gradually degenerates nerve cells that control mobility and vision;
4. Behavioral Variant FTD – which involves changes in personality, behavior and judgment.
3. Lewy Body Dementia – This type of dementia is associated with Lewy bodies and Parkinson ’s disease. It is the second most common dementia.
4. Mild Cognitive Impairment – This is defined in deficits in memory that do not significantly impact daily functioning. Memory problems are minimal.
5. Vascular Dementia – This is a subtlety progressive form of dementia causing progressively worsening memory due to reduced blood flow in the brain.

Riley’s primary care physician is concerned that his problems with memory and weakness in his right side are not improving. After Riley was released from hospice in August 2012, he improved from not being able to walk, feed himself or tend to his personal needs to being able to do all those things with little assistance. Now, today, he cannot walk without the assistance of a walker because he has very little balance and even then he falls almost daily. At the same time, his memory of current personal events has become shorter. It was the primary doctor’s hope that an appointment with a neurologist might be able to reveal the cause his decline.

Our appointment with Dr. Brain was informative as far as the damage from Riley’s previous strokes, but an MRI was needed to provide more clues. The results of the MRI were that he has brain atrophy, a common occurrence of excessive alcohol abuse which contributes to dementia, but there were no signs of any other condition that would cause dementia. Dr. Brain’s conclusion was that Riley is choosing not to remember things and that he only has mild cognitive impairment. He did not explain that this diagnosis was in fact a term for a form of dementia.

My reaction to this diagnosis was shock. I wondered if Riley had been “playing” me and really was able to function far better than he was showing just to keep me under his thumb. I could hear the words in my head, but something was just not right. It made no sense. Riley’s main goal is to be rid of me to stop me preventing his drinking and driving drunk. If he were truly capable of remembering and has no dementia, he would be making sure I knew so that he could prove that he was perfectly capable of living without me and managing his own life. We left Dr. Brain with me being more confused than ever.

Of course, those of you who have been following me know that I wouldn't just leave it at that. I started researching, making phone calls and trying to sort it all out. Drs. Google and Wikipedia have always given me great answers, but this time I added the Alzheimer’s Organization North Carolina, Merck Medical Dictionary and a whole array of other means of information. Below is a “in a nutshell”, condensed and straight to the point kind of things I learned in my quest for understanding.

MRI and CT scans do NOT provide a good determination of dementia. The only true test for dementia of any sort is a brain biopsy which cannot be performed while the patient is alive. It is done during autopsy. So you may not get an absolute “dementia” diagnosis until after the diagnosis doesn’t matter anymore – after all – the patient is dead.

The very best indicator of dementia is the observation of family and friends as to the changes in the behavior of the patient. It is helpful if the primary caretaking person, spouse, family, etc. – whoever is around the patient the most – keep a journal of odd or out of the ordinary actions of the patient.

As in the case of an alcoholic, there are other factors that can be documented that are helpful in determining the true state of mind. For example, the drinking history must be considered as to quantities of liquor over specific periods of time; how many times the alcoholic went through the detoxification process; has there been a diagnosis of hepatic encephalopathy or Wernicke-Korsakoff; has there been any strokes or heart attacks; and, is the alcoholic still drinking.

In Riley’s case there has been drinking to extreme, cessation of drinking, and back to drinking to extreme many times over and over again encompassing more than 30 years. While he most likely had hepatic encephalopathy long before, it was diagnosed in 2008 along with Wernicke-Korsakoff. Both conditions are brain function related and destroy the synapse connections. Riley had a stroke in 2009 which left him with some function and memory defaults, but not to the extreme. The heart attack and mini-strokes in 2012 further caused havoc in his brain. With all the trauma to Riley’s body and brain, the question shouldn’t be does he have dementia, but rather why wouldn’t he have dementia?

An MRI or CT scan can’t record as an image that is not visible. I tried to find a test that would measure the synapse activity, but found only research material using rodents. It appears that there is no test for the living breathing person who may have dementia.

My best measurement of Riley’s mental capabilities is what he presents to me each and every day. The inability to remember what’s for dinner tonight; the lack of ability to use the tv remote; his idea that if I would just let him drink his life would be so much better even if it kills him; the absolute insistence that he will be shot at the age of 103 by a jealous husband; the continual references to childhood friends and circumstances and inability to remember how to use the car seat controls; the contradictions in what he knows to be true and that the truth will not apply to him; his inflated sense of entitlement; and, thinking that he can still buy a new car for about $2,500  simply reconfirms to me that he has dementia. Add to all that the increasing inability to walk; his struggle with using the correct word in a sentence; his vision impairments; a difficulty swallowing; and a loss of emotional connections.

In fact, I believe he has Frontal Temporal Dementia, both Corticobasal Degeneration and Behavioral Variant FTD, which gradually affects all the functions performed in the frontal lobe of the brain. This makes sense to me because the toxins from alcohol usually settle in the frontal lobe region of the brain. I ask again – why would anyone not expect him to have dementia?

In my opinion, Dr. Brain’s diagnosis does not take into consideration the other factors of Riley’s condition. In all fairness to the good doctor, he has requested the records of a prominent forensic psychiatrist who recently examined Riley and found him to have dementia and lack competence to care for himself. He is doing further review of Riley’s case.