Sick vs drunk caretaking

I often hear people telling me that I can’t possibly be a good caregiver for Riley because of all our past history. I’m told that it makes me hostile and that he would be better off in a nursing home. I don’t agree with any of that nonsense. I made a commitment to both my daughter and to Riley to “see this through” to the end. That’s what I intend to do.

When Riley returned home after having been in a nursing home for a week so that I could get some respite, his health had greatly declined. I called the hospice office and told them I believed that Riley had a bladder infection and that I needed a prescription for something to treat it. It took more than two weeks for someone to come get a urine sample for testing. Then it took about five days for the lab to report that he did, in fact, have a urinary tract infection. We received the medication late the next afternoon.

While we were waiting for the medication, Riley became increasingly sick. By the time I got the first dose into him, he was spiking a temperature of 100 degrees, was not eating, could not get out of bed, could not move his legs, had blood in his urine, and was hallucinating. I monitored him through the night and gave him Tylenol to try to break the fever. It reminded me of the times when my children would become ill and I would do everything I could to try to nurse them back to health.

I know and understand that Riley is in hospice and no heroic measures will be taken to prolong his life. But, it seems to me that the degree of his UTI seriousness should have been attended to in a more timely fashion. I don’t know what hospice was thinking. Was the attitude, well he’s dying anyway so there’s no hurry to do anything for him? Where does the line get drawn between what they will do to alieve his discomfort and just letting him go? If his arm was broken, would they not set it? If he fell and injured his hip, would they treat the injury?

It makes me angry because I was told that things of this nature would be treated. AND they did treat it – eventually. As of this morning he is feeling better and hopefully the UTI is going away. So, the next question, (asked by a well-meaning friend) what difference does it make to me? He’s a drunk who so abused his body with alcohol that he is fading away. With all the misery he has caused me in the past, why do I care that he has a UTI or anything else debilitating for that matter?

There is a point in time when the caretaker of an end-stage alcoholic switches gears and just becomes a caretaker of a sick person. Overall, it is difficult to be Riley’s caregiver. Not because of the indiscretions of our marriage, but because he brought this illness on himself. After years of doctors, family, friends, EVERYONE telling him he would kill himself with alcohol, he believed, and still believes, he is invincible to the consequences of alcohol abuse. I know, I know. It’s called denial.

That’s what makes it difficult for to be his caregiver. In Riley’s eyes, I am to blame for him being in the situation he is in. If I had not called the paramedics when he had his heart attack, he would be dead and we wouldn’t be going through any of this. Because I am to blame, he feels no drive to do anything for himself. I am to simply do as he says and do them the way he says for me to do them. That attitude did not work for him when we were a couple and it certainly doesn’t work for him now. But, I have to give him credit for consistency and perseverance – he keeps trying.

If Riley had never been an alcoholic and got cancer, I think my attitude would be different. If Riley ever once said “Gosh, I really screwed up” I would have a softer attitude and be much more attentive than I am. If he ever apologized for having to ask me for anything – anything – I would be more agreeable to meeting his needs.

However, when Riley was lying in his bed last night and I could see the discomfort on his face, I actually felt sorry for him. I wasn’t sorry for him being at the end of his life. I was sorry that he was sick on top of the dying situation. I wanted to help him so he could get some rest and feel better the next day.

When Riley was drinking the caregiving issue was very different. The goal then was to keep him contained so that he could not be a danger to himself or others. I didn’t try to cure him or force him into taking care of himself. All those detox and rehab experiences taught me that he would never cooperate in his own healing. My attitude was one of acceptance for what was never going to change.

We are now at the end result of his drunkenness. His party is slowing coming to a close. It’s time because to continue on is just a means to make him more miserable. I will not do anything to hasten the closing of his doors. I will let it run its course.

However, I will not stand by and let him suffer with a side-car illness that can easily be treated and resolved. To me, in my opinion, that is simply cruel and excessive punishment.

For his little brother...

I received the following letter from a reader and it moved me to a point where I knew I had to share this with my readers. If you read my blog, then you know the frustration of trying to help someone when all help seems futile. Please take the time to listen to the song and follow along with the lyrics included below. -- Linda

Hi Linda,

My younger brother has struggled with an addiction to heroin for about 6 years. It has ruined his character, destroyed his self-control, and robbed him of all of his money and possessions. Our whole family has tried to help him recover through several different rehabilitation services, but every attempt to save him from his addiction seemed to fail.

At one point, he begged for money living on the streets as we let him try to find his “Rock bottom,” but we realized this wasn’t going to heal him or improve his situation. We eventually tracked him down and we haven’t given up hope that he will change.

I know in your line of work, you are familiar with hundreds of stories similar to ours, and I know there are countless people who struggle to overcome addiction. I have learned that it is a far-reaching issue that devastates individuals and their families.

I wrote a song about my brother’s experience, and recently made a music video depicting some of his struggles. We are finding that this song and music video are educating, inspiring and empowering not only for addicts and former addicts, but also family members, and others who have never even had to experience watching a loved one being addicted.

That is why we want to share it with people like you. Please feel free to publish, share or forward to anyone you think might benefit from this song: https://youtu.be/j6TYySh5KfY

Thanks for all you do,

Rick Hale

singer/songwriter

rickhalemusic.com

I was very impressed when I heard this song and knew that I must share it with my readers.

https://youtu.be/j6TYySh5KfY

Here are the lyrics so you can sing alone:

V1

The muffled sound of old regrets

Burning out like cigarettes

Halfway gone and half to go

Fill the air with darkened haze

And all my empty yesterdays

Have brought me down a deeper low

And I can hardly breath it in

Chorus

What if there’s no end at all?

How much further can I fall?

Getting higher as my life’s descending

Something’s taken over me

I’m not the man I used to be

And I can’t take it if it’s neverending

V2

I know it’s hard to understand

You’ve only breathed it second-hand

But never walked inside these shoes

You hope someday I turn around

When I’ve crashed against the ground

And I have nothing left to lose

Chorus

Bridge

Trace the marks across my skin

Laying draped around my frame

They tell the story of my sin

But you turn your back and wash your hands of all my shame

Chorus

Coming to my senses

I believe strongly that knowledge is the key to survival. It goes right along with knowledge equating to power. The more you know the more powerful you can be.

I suspect that Riley’s cancer has returned. There are physical indications that tell me that something is “off”. It really doesn’t matter if the cancer is back or not. He is already in hospice for end-stage liver disease and a confirmation that his cancer has returned will not change that. He will not get treatment for the cancer both because he is in hospice and he has stated that he wants no more chemo or radiation. So, really, what’s the point in putting him through the round of testing (which takes months) to determine if any Tommy the Tumors have returned?

A few weeks ago, Riley was in a nursing home for five days while I had a little respite. When he returned, he told me that he had not been given his medication correctly. I thought he was just talking nonsense until I observed his behavior. He definitely was off his meds. Since he was home and I manage his medication, I got him back on track with his dosage and schedule.

During that time, Riley was belligerent, controlling, passive aggressive, and telling the world that putting up with him was what I get for having saved his life so many times. It was difficult but I preserved. I know it’s just garbage coming out of his mouth because he is re-acclimating to the meds. But… still… it’s so very frustrating.

To top things off, we had a new hospice nurse who believed everything Riley was telling her. Oh poor Riley, so misunderstood, so alone, so unloved… blah… blah. I wasn’t in the room, but from what I understand, that was the gist of what she was telling her. It was about his feelings, says the nurse. His feelings? Well, having feelings doesn’t mean you get everything you want, I reminded her.

She went on to tell me Riley was lucid and clear and could determine for himself if he took his meds or not. She also told that he belonged in a nursing home because I was harboring resentments from our failed marriage. Wait a gosh darn minute here!

Riley has been diagnosed with dementia by one of the best forensic psychiatrist in North Carolina. He has been diagnosed with brain atrophy by a prominent neurologist after having had an MRI. So where does this nurse get off telling me he is lucid and clear? Her response was that he answered all her questions about where he lives and who the president is correctly. And he also knew where the garbage can was in his bathroom. Oh! Well! Hey! That solves it! Of course he can make his own medical decisions! Anyone who understands that Obama is president and the garbage can placement, can certainly decide if he needs to take the medication that lessens his agitation or stops his nausea.

I hate those mini-competency tests that Medicare requires to determine the health status of a person in hospice. I think they are ridiculous. Only a person who is deeply into dementia would answer those questions incorrectly. Riley isn’t that bad yet. But he isn’t good either. He has illogical thought processes and knows the answers to those questions because he “resets” his brain every morning by watching news programs for the majority of the day. He seldom really knows who his grandchildren are and who the parent is of which child. Often he doesn’t even claim them to be his. Sometimes is daughter is his and sometimes not. He has no recollection that we were separated for 15 years and sometimes he says the separation was not long enough.

Over the last six months, the team of health care professionals who have been assigned to Riley have focused on making him more independent by encouraging him not to ask me to do things that he can do for himself. This new nurse ended her visit by saying I should just do as he asked when he asks and let him manage his care. So now, I’m called to his room to do everything that he can do for himself. We have taken 10 steps backward and if he had his way I’d just address him as “Master.” Well, that ain’t gonna happen and the battle begins – again.

It will take me some time to undo the damage caused by the new nurse. Of course, she’s not to come back here and I’ve been assigned a different nurse. In the meantime, I’ve had almost NO time for anything other than Riley’s care.

For the past few days, I’ve noticed that Riley has taken a downward turn. He is very weak, has no appetite and is very quiet. I’ve been watching him closely. I check on him often. I am concerned, but understand that this could just be the progression of his disease.

As I was leaving his room, he said “I’m happy that you’ve come to your senses and are following Nurse X’s advice.” OMG! He sees my taking care of him as being submissive and an indication that I’ll just do anything he asks. I talked myself down from the irritation of his statement and remembered that he is a sick man – a dying man. I need not respond nor let his statement upset me.

I wonder how long it will take for him to come to his senses and realizes that he, in fact, is at my mercy? Oh! That’s right – I forgot! He will NEVER realize that because although he is not drinking he still thinks like a narcissistic alcoholic.

Panther in the woods...

Last week, Alea, my daughter and her friend went to the Isle of Wight Animal Shelter. They weren’t looking to adopt but they just wanted to visit with the animals and see the facility.  A kind-hearted attendant gave them a tour of the facility and explained the purpose of each separated area.

When she returned home she told me that she could not ever do that again. She had been thinking about volunteering, but after the tour she realized that she just wanted to take all the animals home and give them a good life. Besides there just wasn’t any room in her schedule for much of anything other than work and taking care of home stuff.

I asked her what she liked the most about the shelter. Her response was that she liked the part for the unusual animals. Her favorite animal was the panther. We couldn’t imagine anyone taking a panther as a kitten and trying to raise it as a domesticated animal. Panthers should be free to do what panthers do.

Behind and to the side of our house is all dark, dense woods. I know we have coyotes, raccoons, possums, deer, wild turkeys and many other types of creatures. I wondered if there was an exotic animal in the mix.

Maybe there are panthers in the woods. Maybe they are hiding and won’t come out unless there is a potential dinner in the yard. Lurking. Maybe they are lurking… waiting… watching…

Thinking about that Panther reminded me of the old saying “the elephant in the room.” If an elephant can sit in a room, then is it not possible for a panther to be lurking in the woods. In fact if we think that the panther is alcohol, then is seems reasonable for it to be in the woods – waiting for an opportune moment to strike out and make someone miserable.

Living with an alcoholic is like waiting for the other shoe to drop or working around the elephant in the room and now – waiting for the lurking panther to pounce. It seems those of us trying to keep things in running order get our agendas thrown out the window by the shoes, elephants and panthers who drop, sit or pounce in and make chaos out of our order.

I do not believe there is any way to capture the panther and prevent him from scratching up whatever current sanity there is available. It is the nature of the panther to scratch, hiss, fight, chew, and literally tear apart any living thing within their distance. It is the nature of alcohol to destroy a human’s access to reason, logic, or morals and this in turn inhibits the ability to be rational or logical.

When or if the panther can be convinced to stay in the woods and out of the reach of innocent humans, I think that is the best place for him. Personally, I don’t want shoes, elephants or panthers to destroy my peace and quiet. Years ago that would not have been possible. But now that Riley cannot get to alcohol and cannot find anyone to get it for him, all of my panthers, elephants, shoes and anything else that runs amuck in my vicinity is safely under control.

The unfortunate thing is that it took Riley having a heart attack, strokes and now end-stage liver failure before he stopped drinking. And, mind you, he did not stop voluntarily. He stopped because he had no access. He stopped because I refused to go against doctor’s orders and give him booze. Stopping was not his choice and if given the opportunity he would start drinking immediately if he could. It is his misfortune that he has me as a caregiver. He would be happier with someone else who would slip him a beer now and then.

There has been some talk of rationing him some alcohol during the day. He IS a dying man (I think, he may truly be immortal) and even dying men get a last wish. But, he’s not that far gone yet and I fear that his immortality will only strengthen if I lower my resolve. It’s early yet in his hospice status – I’ll wait and see what happens over the next few months.

In the main time the panther in my woods is safely locked out.

ANNOUNCEMENTS!!

One-on-One Visit Snafu!

As many of you may know, I offer One-on-One sessions with me through the Linda's Front Porch website. Over the weekend I found out that the application I was using for this scheduling was not working correctly. I did not receive notification when someone wanted to schedule time so those people became lost somewhere out there in cyber-sphere. I never received any notification of the requested visit and have no way of finding out exactly who got lost.

I have removed the app and am going to a more simplified system. Just send me an e-mail to LindasFrontPorch@outlook.com with the word VISIT in the subject line. In the e-mail tell me your preferred date and time. Also provide an alternate in case the requested time in not open.

Since I can't tell who was lost, I'm offering 60 minutes for $20 instead of the regular 60 minutes for $30. That's a savings of $10 off the regular price. This offer is good ONLY through July 18th, 2015. 

OARS F&F Group on NING is CLOSED

The support group at OARSF&FGroup.Ning.com is closed. The website had a lot of people register, but was not active enough to hold the interest of the members. I have closed the site down and replacing it with the NEW OARS Forum on Linda's Front Porch. (www.LindasFrontPorch.com) The new site is far more active and still provides the members with the same information as the Ning site.The New OARS Forum has people posting on the forum subjects daily and new topics are added frequently.

Privacy is very important to our posters. To enter the New OARS Forum site, two passwords are required -- one to enter the Forum and one to gain personal access.

 To register for the NEW OARS Forum, send an e-mail to LindasFrontPorch@outlook.com with the word FORUM in the subject line. Tell me your preferred user name and I'll register you and send instructions.

Group or Facility Visits

Do you have a group or rehab facility that you believe would benefit from my experience? Currently I'm booking speaking engagements for August, September and October. If you would like more information, please send an e-mail to LindasFrontPorch@outlook.com with the word SPEAK in the subject line. Tell me about your group or facility and I'll send you a brochure with availability and rates. There are a limited number of time slots for speaking, so be sure to book your event early!

Life lessons...

I’ve learned a lot about life in general over the past 60+ years. I learned this lessons by experience and not just because someone said or warned me about something. The things I learned are from the University of Life in the Real World and, also, the College of Alcoholic Insanity in Chaosville. Some of the lessons are very simple, others more complicated.

The simple and easy to understand ones like, “If it’s too good to be true, it’s too good to be true,” were the hardest to remember. I’ve fallen into that trap more times than I can remember. When Riley was sober for a period of time and seemed to finally understand what alcohol was doing to his life, I would be happy.

Is he dead?

There was a comment on the Definition of End-Stage post asking me if Riley were dead yet. It reminded me of a friend who used to call about once a week and ask, “Is he dead?” After answering her with a resounding NO! we could continue to discuss how Riley was doing.

Dealing with Stress after Rehab

This article was written for alcoholics who have completed rehab and finding it difficult to deal with stress. When I read the article, I thought it would be good for anyone dealing with stress. 

By Mitch Webb

Stress is a normal part of our everyday lives. From work deadlines to noisy children to flooding in the front yard, there are many occurrences that can easily take us from calm to wanting to pull our hair out. However, drugs and alcohol change the

Financial pit of despair...

During the days when Riley was drinking and we were together, often times more money would be spent on booze than the total amount of our utility bills. I tried everything I knew to make sure I got the paycheck before he had a chance to cash it. Because once it was cashed, it was basically gone. (That was before the days of direct deposit.) When he ran out of cash, he would write a check. I ended up closing the bank accounts to prevent paying return check fees.

Riley earned enough money to support our family. But, I worked two, sometimes three, jobs in order to keep food on the table. I don’t think he even knew how much money he was spending. He didn’t have to

Finding a doctor

One of the OARS group members expressed some difficulty she was having in trying to find a doctor to treat her alcoholic husband. She surmised that he is in end-stage, but has nothing to go on except what she has read in this blog and her own instincts. In a rare moment of sanity, her husband told her he wanted to go to the doctor if she could find one that would see him. Of course, he did not want one who would insist upon detox or rehab.

Mrs. X began her search and quickly realized that her task was harder than she had thought it would be. After several days of phone calls, she was about