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Just the Right Environment July 9, 2012

Posted by ijwoods in Blog+.
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When it comes to going out to eat, whether it be a restaurant or someone’s home, many people find that the environment plays a big role in the enjoyment of the food. I once heard a comment attributed to a friend that when asked what he thought of the restaurants in New York City he said that it was hard to enjoy food when eating in a toilet (sorry New Yorkers, no offense meant). I never found out if he actually said this but it definitely got a laugh out of me and a nod towards the spirit of the statement. So what about the environment when we are caregiving? What about the environment when a person is going through an end-of-life process?

My mom was in the hospital during the final days of her life. There were tubes in her, the sounds of beeps, boops, people rushing up and down the hallway, people talking loudly in the room next door and so on. Her hospital room was very clinical and sterile with all the necessary equipment to keep her sustained no matter the cost. Nothing in it was familiar or cozy.

I remember one nurse coming in and cleaning the inside of my mother’s mouth. Mom was at that point where she could no longer take care of herself and was asleep or unconscious most of the time. The nurse looked like she was being a bit harsh on mom’s mouth trying to scrub out the dead skin, brush her teeth and so on. One of my family members didn’t like what they saw and decided to start a fight with the nurse. They both stood over my mother yelling at each other.

What I was experiencing prior to that altercation was mom slowing way down, getting real quiet and moving within herself. It was the first time I witnessed something like that and was feeling a lot of respect for the process and a bit in awe. So when World War III erupted it felt like someone blasted a siren in my ear while sleeping. Not only did it feel horribly wrong but my mom, although normally quite feisty and outspoken, was not going to participate in the argument. All she could do was lay there.

I begged the two belligerents to stop and respect my mother’s state. That didn’t help because it just provoked them to both gang up on me!  I finally managed to draw them out of the room without contributing to the yelling and got mom some semblance of peace again.

Let’s face it. Being taken care of and dying in a beautiful environment is a luxury. A friend of mine had a massive heart attack in a bathroom at the airport and died there.  Another had one while delivering a business presentation and died almost immediately. And then of course you have all the soldiers who die under terrible circumstances, far from home, with little or nothing to comfort them during their last moments. We can’t always choose our death spot and sometimes it’s too fast to probably ever know what happened.

One gift I have as a caregiver is the privilege to provide as beautiful an environment as I possibly can. Home seems like such a great place if that’s where the person finds comfort. When K and I talked about how we wanted to go we always came up with the same answer – at home. Even if it meant not having access to all the great life sustaining equipment. I was so glad we were able to make that happen. Home was a place she could dictate how she wanted things to be. A place where everything was familiar and there were no distractions from the internal work she had to do. She could be quiet or stay occupied in her own way – whatever her inspiration dictated.

I made sure the environment was simple and clean, knowing that’s how K liked it. We live in a very quiet area so there was never a problem with noise. During the final nine days she was relegated to a hospital bed which I had placed in our bedroom so I could sleep there with her. There are lots of windows in the bedroom and even a sliding patio door so during the day the room was always full of light and fresh air.

In the evening I left the bedroom curtains open so that you could see out onto our patio. We had Christmas lights strung on the inside of the awning of the patio so that even with the bedroom lights out there was a nice festive glow in the room. Seeing the Christmas lights in the evening was a lot of fun and the kind of thing K liked. The overall effect of the Christmas lights was incongruous to what many would take as a sad time. Instead it felt like something very cheerful and special was taking place. And it was special.

I hope K liked what was provided. It seemed to suit her and she appeared happy and focused most of the time. I would venture to say that each one of us knows the environment we’re most comfortable with as do those we are caring for. Environment is one of those things we can discuss, be aware of and plan for.

I really like this quote by the late Dr. Timothy Leary,  “You’ve got to approach your dying the way you live your life, with curiosity, with hope, with fascination, with courage and with the help of your friends.”

Comments»

1. Glennie Bee - July 10, 2012

A beautiful post. What a privilege for you and K.

ijwoods - July 10, 2012

Thanks Glennie. By the way, I really like your site. I’ve wanted to jump in and make some comments but didn’t want to bring down the caliber of commentary :-)

Glennie Bee - July 11, 2012

I don’t believe for one second that would be the case! ALL comments gratefully received – at least you know people are reading what you write, and I take that as a compliment, whether they agree with me or not.
So PLEASE don’t be shy! :)

2. Amy Lapetina - July 10, 2012

Great advice. It’s not something you often think about but asking some one where they want to die is so important. Be happy for all that you did for K; it sounds as if you put your heart and soul into every important detail of her last days.

ijwoods - July 10, 2012

Amy, I’ve read about some people who desperately want to die at home but are not allowed to. It breaks my heart to hear about it. I came across this article today and posted it on my Twitter feed – http://bit.ly/MWLzIT it’s about how for cancer patients being at home can be far more soothing. Here’s the first paragraph: “For patients with terminal cancer who have exhausted all treatment options, being as comfortable and relaxed as possible during their final days often becomes a priority. Staying out of the hospital may be key to attaining that frame of mind, a new study suggests.” I can’t begin to say how rewarding it was for K and I to be together at home during those final days.

3. Clare Flourish - July 10, 2012

I helped my mother to get out of bed and sit on the commode, and in that moment of touch, I felt Love communicated both ways.

I think at that moment, lying there, drifting in and out of consciousness, I would like to be Held. I would like to feel the touch of a loved one.

ijwoods - July 10, 2012

Thanks for your note Clare. It sounds like you had a wonderful experience with your mother and you are so right about the communication, it’s exactly what I wanted to mention in the piece.

4. blessedbebeth - Middlescapes.com - July 10, 2012

I love the holiday air, the twinkle lights a perfect setting to affirm the love that you shared. I can’t think of any more perfect a gift. Another beautiful post.

ijwoods - July 10, 2012

Beth, K loved that sort of thing. We had lights up almost all year round. I really have no idea if she noticed the lights at that stage, but I felt she did. In any event it really added a nice dimension to what was happening. I also had letters and handmade posters from her nieces posted on the wall next to her. They are young and I don’t think they fully understood what was going on, but the things they kept sending by mail were precious. They loved her a lot. How lucky to be surrounded by love at that point in one’s life.

blessedbebeth - Middlescapes.com - July 10, 2012

Ira,

It sounds like K was both surrounded and summoned by love. I know sometimes you question whether you lived fully up to the highest caregiver standards. Given that there is no such thing as perfection for us mere mortals, and we all make mis-takes, you my friend have come closer than most. I hope you take comfort in knowing how much you contributed to smoothing the way for her transition.

5. Terre Mirsch - July 18, 2012

Your description of the environment you provided for K was lovely. Too often, we focus on tasks and neglect these important details. A peaceful and serene environment allows for a comfortable, calm departure. Your attention to this aspect of caregiving transformed the experience for both of you. Thank you for sharing your story with us.

ijwoods - July 19, 2012

Thanks Terre. It’s not something I realized at first but after hearing positive comments from some of the hospice nurses I realized there is something valuable about this. It not only seemed helpful to K as she went through here journey but even for me it was important because it helped make my environment feel calm and natural while attempting to take care of everything else which at times seemed chaotic.


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