Two weeks before my father died he made a last request: Beer. It caught me by surprise; I had been busy preparing his nightly dose of crushed meds in applesauce.
"What did you say, dad?" I said, while gently shoving trazadone/klonopin/ativan/ laced applesauce into one corner of his mouth. He repeated, "I don't want this. I want a beer.” Then he spit the applesauce meds out onto the floor. He was a lot like a camel that way towards the end. You had to be agile and prepared to dart out of spitting distance.
Beer? I contemplated the idea. Could he possibly be serious? He had not had anything to eat or drink for almost a week at this point. I was more than thrilled at the thought of being able to fulfill any request that might make him actually happy for a moment. At the same time I was also quite sure that by the time I sent my boyfriend, Mike, scurrying across the street to the neighbor’s to grab whatever beer she had on hand, my father would've soon forgotten he even asked for it.
Mike returned with a Bud Light Lime of all things. Who knew such a thing existed?
I tried to give dad a sip, but soon found he was too weak to suck it up to his mouth through the straw hospice had recommended. Linda, the craigslist caregiver, stood by as usual on her death watch supervising me to make sure the beer did not contain a fatal amount of say, Nembutal, and shook her head, hands on hips, sneering.
Her own job security was Linda’s first priority. This made me question my decision to hire her off craigslist for the small fee of $10,000 a month, under the table, but what’s a girl to do with a twelve hour window to find a 24 hour caregiver? I recalled that she never did give me the promised references. Instead she relied on her Mrs. Doubtfire-like demeanor to fool me, initially. Now it was too late to replace her and she knew it.
At this point her job consisted of nothing more than turning my father over once or twice a day to prevent bedsores and keeping an eye on me to make sure I didn’t purposely put him out of his misery. She was going to milk this as long as she could and that meant keeping close tabs on the morphine. She didn’t want me anywhere near that bottle which she guared guarded faithfully like a dutiful pit bull. She was a Christian after all, and God would want her to keep my father alive, even if against his will.
"Not like that, Mike! She bellowed. Just give it to him in a cup, like this," she shoved a plastic cup between his chapped lips and poured a few sips, most of which dribbled off to the side down his chin and under his Michigan State T-shirt, giving him a chill and causing him to choke as he inhaled the lime beer into his lungs. Not much fun for him, as far as having a beer goes anyway.
Not exactly happy hour.
Mike and I exchanged knowing glances willing her to disappear back to her knitting, or needlepoint, or whatever it was she did, but of course, she stayed, feet planted firmly in place as Mike gave him another sip. Then came the usual response: “This stuff tastes like SHIT! What is this? Who gave me this?" Follow the familiar, sinking feeling again of never being able to do anything right, anything that could possibly lead to even one small moment of satisfaction. We failed yet again. My dying father could not even enjoy a damn beer.
I have never been a beer fan myself. I’d much prefer a scotch on the rocks. If you are looking for a buzz why not get right to the point? But being slightly thirsty and rather curious, I decided to try a sip myself. Low and behold, it actually WAS horrible. It tasted, literally, like artificial chemical lime water. Seriously. No wonder dad hated it. It sucked. I still wonder what would've happened had we given him an actual good beer...like Becks or Heineken, or something normal men drink. Maybe he would’ve felt less sick for a minute. Maybe he would’ve gotten out of bed and slapped us high fives.
But, that was doubtful. He probably would've hated it either way.
I spent the rest of the night surfing the internet learning more about Nembutal and how once you give it to a person they simply fall asleep and die within 10 minutes with no suffering at all. I read about death tourism to Mexico and Switzerland. I read about people that offered to sell you doses over the internet. I read about manslaughter, and right to life, and the legalities of the Death with Dignity Act...I read and read and read until nearly midnight, wishing I could help my father fulfill what he really wanted, a permanent end to dementia’s toll taking.


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Comments
burp.
sip 6,
burp.
7-Up.
When a jolly friar pub brewer says`
ho ho ho, it judgement day. Yippee!
Gather 'round, wipe-a-offs `Smirk!
`
Merry.
Ya crazy?
Everybody!
Enough.
Enough.
no beer!
pop can!
tin pop!
bottom?
Up huh?
hick cup.
no braw.
no c- cup.
Seriously.
It is sad.
There really is a `Farney Keeny Nursing Home in Boonsboro, Maryland.
I've heard.
Blessings.
the elders.
everybody.
Bud Light Lime...egad.
10 grand a month? Double egad.
Regardless, you have a natural, flowing storytelling ability. Keep it up. Post more.
I love your line about "the familiar sinking feeling of never being able to do anything right, anything that could possibly lead to even one small moment of satisfaction." NOBODY can draw this feeling out like a parent. Especially a cranky-formerly independent-miserably-dying parent.
My mom was frequently annoyed with me, although not as annoyed as my dad when HE was dying. Once I tried to spoon ice chips into his mouth & dripped water on him or something & he shook his head angrily & tried to yell at me, but fortunately (for me) there was also a tube down his throat.
As for my mother, I wanted to do the same thing you write so eloquently of -- I wanted to help her "fulfill what [she] really wanted, a permanent end to dementia's toll taking." I wanted her to have a merciful end. The people at the Care Home made it very clear that I should NOT do that because if I did they would know & I'd face prosecution.
In retrospect, it's good that I didn't do her in, as I probably would've screwed it up...
(At least you didn't get your dad one of those awful canned beer-and-clam-juice concoctions. Ick!)
You write beautifully about terrible things.
"Guiness Is Good For You".
there is no real win usually
I've tried posting two different thank you notes today. Neither made it through...broken link of some sort? Anyone else run into that today? Maybe it was just my computer.
I wanted to send many thanks to each of you for taking the time to read and comment on my post. Your gracious encouragement has filled me with new enthusiasm during one of the darker times of my life.
I am thrilled to have discovered such a wonderful community and I am humbled by your talent and grace.
Thank you for making me smile, and for giving me something new to look forward to. I hope to become a valued member of the OS community.
As a single mama with a full time work gig my writing time is limited but even so I am excited to be here when I can.
Thanks again,
Eden
This was absolutely beautiful. You made me remember my own father in this same season of life. You treated this with such love and insight and compassion. If father's ever have a reason to be proud you certainly gave one here.
Rated and appreciated
Thank you. You just made my day. I wish I could've done more for my father. He was a rare gem.
Thanks for such a sensitive and honest description, Eden. My mother is dying more slowly than I imagined anyone could, and it is so hard to feel we are doing anything helpful. But as others have said, you do the best you can, always with love, and know that it is enough.
He suffered some healthcare controlling bitch who would come to his home and make sure that he never got anything he enjoyed.
He was still ambulatory the last time I saw him so, I took him out to dinner at a nice log restaurant here in the northwoods of WI.
He loved his Manhattans and, since the health(we don't) care nazis wouldn't let him have anything, I let him order what he loved, missed and dearly wanted.
He had a few before we ordered and, I had never seen him so happy and feeling so free.
He wasn't feeling any pain that night and, when I left his house later, the look in his eyes told me what I had done for him.
I knew him for quite a few years and, I had never ever seen him as happy and free as that night.
It was his time of being sprung from a prison.
That night he was a free man.
That was the last time I saw him and, it was a really good night for both of us.
Those bastards had better be careful if they try to do their shit to me because, I'm like Harvey and love my freedom.
Eden, I think your Dad did/does also.
I got to see something kind of similar last week between a cousin in hospice and his brother. Two brothers who finally made peace with each other over a six pack (well it was O'Doul's because Mike could not tolerate alcohol physically). It would be the last thing he would eat or drink before passing the next day.
Rated..
I got to see something kind of similar last week between a cousin in hospice and his brother. Two brothers who finally made peace with each other over a six pack (well it was O'Doul's because Mike could not tolerate alcohol physically). It would be the last thing he would eat or drink before passing the next day.
Rated..
Phunkjnky: Even if it had to be with O'Douls I'm glad these two were able to make peace. Thank you for taking the time to read and comment. I appreciate it!
They could have told you that anything your Dad wanted, or thought he wanted, was just fine at this point=comfort care. They might have advised you on whether or not it was detrimental to give the beer and his regular meds you mentioned, though, I suspect even if it would have been a better selection of beer, one or tastes might have, to him at that stage, seemed like a cold mug full. They might have told you to draw up some beer in one of the handy oral syringes they would have provided for you, or to siphon some up in a straw and cap the end near you with your finger tip and put the straw in his mouth and release some, bit by bit, via your fingertip or, if with a syringe, simply "inject" a bit into the corner of his mouth or at the tip of his tongue or enough for him to swallow, such as 2cc at at time, marked on the syringe.
They might have told you something else and, since they did not, I will take this opportunity to tell you; that you gave much tender, loving, and appropriate care at the end of his life, and, that taste of beer is minor and forgotten by him before he took his last breaths.
My Mama, too, had not eaten in about 6 days at the end and suddenly announced she was hungry. The usual, custard, applesauce, ice cream, jello, etc was offered and declined. Like any good Italian, I remembered the homemade meatballs in my freezer at home and offered, "Do you want a meatball?" Her eyes lit up and she said "Yes!" I rushed home and retrieved not only the meatballs, but homemade sauce, ravioli, and took it to her home, 2 blocks away. I served her a plate of ravioli, meatballs and she happily ate the whole thing. It was the last meal she had and it was just happenstance that I happened to have it on hand and I still do not know what made this RN/daughter even think to suggest a meatball!! as something to offer an actively dying, though fully conscious, patient/loved one.
We do the best we can for the best of reason(s)....love and a desire to give the love we feel, to validate the life of the dying loved one. You did that. Rest easy.
Usually, at the stage you describe, the need for Nembutal and assisted death, is not necessary. With a good plan via Hospice and the administration of these "comfort meds", the process is in charge. The goal of medicating patients at this time is to keep them so comfortable that they are not needing "assisted death". But, it is so very hard on those of us who are ministering, the families. It was the hardest thing I have ever witnessed in my entire career of nursing, even as, at the time, a hospice nurse, to minister to my Mother as a daughter caregiver and see the decline and the process take charge. It is not easy.
Suffering from late stage dementia with superimposed delerium, my father was extremely agitated until almost the very end. I was literally pleading with hospice director to agree to palliative sedation. Nothing else would help. They never seemed to get the mix of drugs right for him and he remained scared, angry and anxious until the last days of his life.
He rarely slept. I requested more morphine...it was the only thing that seemed to calm him, but I was told no. You can only give him so much (a very small amount.)
I was bascially asking for permission to help him end his life, legally, but they would not go along with my plan. As kind as some of the hospice people were, they were also equally concerned with covering their asses.
Once I got the call that he had slipped into the "active" phase of dying I took over. I gave him morphine around the clock to keep him comfortable, and held his hand as he took his last breath.
It's the hardest thing I've ever had to do, but I'm glad I was the one to do it.
As a retired Director of Social Work for a nationally known and respected hospice, I have a further suggestion. When/if you feel up to it, PLEASE tell the doctor, social worker, friend or whomever recommended this hospice to you about your very poor experience. Sometimes, especially in a city where there are many hospices, people, even professionals, do not know which hospice (s)may not be giving top care or practise the latest most compassioniate palliation protocols. In some cases, especially for-profit hospices, docs or others have a professional connection and/or even financial intererst in a certain hospices. That does not necessairly mean the care is poor ( I know mulitpal for-pofit hospice who do great work) but does require some payment to owners which might have gone to more or better care. Many enteprenuers (sp?) have gone into hospice care because it can be quite profitable if you shave a bit on services even within Medicare guidelines
In any case, pass the word to the hospice itself as this may have been just an RN without as "hospice heart as we call it or poor clinical skills and she/he could be further educated. Although it seems from what you said about pain management, that philosopy of this hospice may be the root of the problem.
Blessings and peace of mind regarding your father.
On a few occasions, I was confronted with a patient newly on service, who asked for "mercy drugs". I was able to "contract" with the individual to agree that if we were unable to keep him comfortable and ending his life with dignity, that we would withdraw and he would be free to do as he wished. On each occasion, we were able to manage his care and his comfort to the degree that we met our contractual agreements and he had no need to take other measures.
Even in my own city, with many hospice services, I know we are unique in the manner in which we activated our philosophy and responded to needs.
At the end, you did the right thing. You were exactly what your Father needed and you did it well.
I urge you to consider bajamsw's advise and do one last thing. Give the feedback that needs to be heard, to the agency and to friends. We do not get "second chances" as families and patients but we can help to influence the experience for others.
Thank you for your brave write here. I really loved it.