I know that’s where I am and somehow I feel that I’m in quicksand and cannot pull myself out. Every time I start to focus on myself, Riley has an issue that needs immediate attention. I drop what I’m doing or alter my focus and he has regained control of my life. I never intended for my life to be just about him. Yet, here I am – reaching for that branch that can pull me out only to have the branch break just as I grab hold.
The cavalry is on the way. When I
start getting money from the Veterans Administration I can hire a personal aide
for Riley. That will allow me the opportunity to go to the gym and cook the
right food. Right now, I cook whatever Riley wants and often what he wants
doesn’t fit into a healthy eating plan for me. I don’t have time or energy to
prepare to totally different meals. An aide can help with his meal planning and
preparing.
I was once asked who is the most
crazy, the alcoholic or the caretaker. Of course the caretaker is more crazy
than the alcoholic. Who in their right minds would volunteer to take care of a belligerent,
abusive, incoherent drunk? The answer is a person just like me. We can’t blame the
cloudiness of a drink for making an irrational decision. We can only blame
ourselves. Sometimes we don’t even realize that we’ve made a decision until it’s
too late. But, no matter how we got here – here we are and if things don’t
change they will remain the same.
For me – I CHOSE this boulevard
of insanity. I had the best intentions of protecting my daughter and my
strategy worked. She is safe from her father’s insane demands. My grandchildren
are safe from Riley’s absurd antics. But what is left in the wake of my
success? It is not a pretty sight.
I’ve gained 50 pounds since June
of 2009 when I first took Riley back into my house. I’ve had a stroke, a
mini-heart attack and have been diagnosed as diabetic. I blame the excess weight and my lack of
exercise for my health. Each morning I endeavor to do something, anything, just
one thing, that is healthy for me. Sometimes I’m successful, other days not so
much. I know the stress is causing me a lot of harm. My headaches are more
frequent now and the tiredness is continual. But, I tell myself – it will all
be over soon.
So who is the crazy one? Riley
gets waited on hand and foot every single day. Like a king on his throne, he
sits in his rocking chair and tells me what he needs/wants. I cook him whatever
he wants (in hopes of him actually eating it). The den TV is set to the
channels only he wants to watch. There is no reason for him to move from that
spot. He wears diapers now, so he doesn’t even make an effort to get to the
toilet on time. He sleeps as often and for as long as he wants and if a noise
should happen to wake him, he will demand to know what is going on. I jump to
calm him down – I do everything I can to meet his demands. He has the Life of
Riley. I’m crazy to be his servant and make it that easy for him. I’m the crazy one.
I can control him, at least, for
short periods of time. If I threaten to put him in a nursing home or a mental
institution, he becomes more reasonable for a day. The next day he forgets the
threat and we are back at square one. If I threaten on a daily basis, I fear he
will begin to take my threat as just that – a threat. The reality is that I
have been unable to find a nursing home who will accept him. And to put him in
an institution would mean a long drawn out process – I don’t think he has that
much time left.For the past month we’ve had a visiting nurse. Riley likes her visits and he is always more agreeable for several days after. But, this is the last week we will see her. Unless I can get the doctor to request hospice, things will go back to the way they were before the visiting nurse.
Having the nurse has been great for me as well besides Riley’s improved behavior, she tells me about dangers she sees ahead. She’s not allowed to make a diagnosis or to predict any outcomes. But she does give me her opinion and answers my questions to the best of her ability by bending, but not breaking any rules.
Currently, the nurse’s concerns are about Riley’s erratic heart beat and blood pressure levels. The fact that he is constantly in pain in his entire right side, is an indication that he has had, yet another, stroke or even a heart attack. He has swelling in his feet and legs from fluid retention. And – although he did not break his wrist in a fall, she suspects he may have broken his arm.
Today, I’m attempting to get Riley into the van so I can take him to the doctors. It will take some fancy footwork on my part – but I’m think that maybe I can do this. Once he’s at the doctor’s office, they will take another x-ray of his arm, do an EKG and probably more blood work. While there, I’m going to see if I can get the doc to order hospice. I’m hoping for a productive appointment.
As for me – each day I will continue to try to diminish my own craziness. That’s why I write this blog and support other caretakers through the OARS support group. I try to keep my focus on today which is only as bad as I let it be. I’m only as crazy as I allow myself to be. I have managed to reduce Riley’s collateral damage to only one person – ME – and I will not go crazily before him and leave him to expand is collateral damage circle. My new mission is to OUTLIVE him.
9 comments:
DEMAND help! Not sure that this is true but you may look into it. A physical therapist told me that medicare pays for home visits. It may be worth looking into.
Our life has been so much better without the antics and craziness from my A. When looking back at the last 8 month we wonder how on earth did we do that? Not sure we could endure it again. Def would be as patient and like you said with Riley..letting her sit on a throne and meeting her every need,
I do hope you get some help... YOU really MUST look after you FIRST. YOur daughter NEEDS you in the future!!
Karen -- Medicare has been paying for the visiting nurse. We have exhausted those benefits. The only way they will expand is if he is in hospice. VA will cover everything I need, but he hasn't been approved yet. It's a waiting game. I really want the doc to put him in hospice. That's my goal for the appt today. -- Linda
Thank you for writing this blog. It is so instructive. You are so clear on what is happening (or not happening) to you and yet you continue to not only let it happen but participate in it. And you come right out and say so.
Like the addict, we think we have no choice. But we're making choices all the time to give our focus, our energy, our lives to the addiction, just like the addict.
A challenge: Is sacrificing our lives to keep the peace by serving the addict really protecting our children and grandchildren.
Keep writing. What you are expressing is so important.
Prayers that the doc will order the hospice. Wish someone was close by to help you get him into the car.
Hospice will be the key. This insanity has to end sooner rather than later. It makes me so mad that Riley isn't doing more to care for himself - where's his dignity?
Who knows how much damage is done by alcoholism? Its tentacles are far reaching. I have read and believe that the damage is done early on for children growing up in an alcoholic home. I do hope that there will be some help for you and for Riley.
Sometimes I really admire what you're doing but lately I'm thinking - you are a martyr - and for what???
What's the worst case scenario if you walk away?
I'm not religious, but even Christ had some parable about the ten women worried about running out of oil and not being able to share.
At least you can articulate what's happening - but how much longer must you carry this weight?? And why?
Hi: My only relevance to your situation is that I am almost 28 years sober in AA - sobered up from a low bottom stage 4 addiction when I was 45. Thank God. It took the realization for me that the gig was up and that my husband wasn't just on vacation but was gone.
I am fascinated by your story and what alcoholism can do.
Linda,
Please know that what I am saying next comes from a place of love.
I see and understand the care, devotion, and sacrifice you have been making over the years for Riley and your family.
But you need to know that YOUR life is just as important as Riley's or anyone else's.
Rather than offer advice, which I won't do because I don't your situation fully I am asking you to please consider the following question.
What would happen if:
1) you fixed yourself and Riley a healthy meals (one that fits your needs not his wants)
2) provide him with food & drink of his liking and the tv remote and go outside for a walk for an hour or two
3) or if you prefer go to the gym
4) any time he is abusive towards you, you leave the room
5) you install an inexpensive "white noise" machine or relaxing sounds in your bedroom so that you are able to sleep through the night.
Please think about what would happen if you did any of these things, and let me know what you think.
Amy of us who become caretakers can get so wrapped up in our role and used to the sacrifice that we are in danger of crossing the line and letting our own health & life become irrelevant. You are important!
You are a kind person but you do not need to only cook the foods he likes ( especially if they are not healthy for you), or accept abuse, or be at his beck and call in order to care for him.
I care about you Linda, and ask you to please consider these ideas, or similar alternatives.
I don't expect Riley will be thrilled about these suggestions, but he will get used to change after some initial fuss. You deserve a life too!
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