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JANUARY 14, 2010 2:46PM

Last Request, My Dying Father Wants A Beer.

Rate: 22 Flag

 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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Finding a responsible care giver is a crap shoot. Bud Light Lime should be banned by the FDA.
I'd pour as many imported` Leffe Ale beers from Belgium that he'd drink.
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.
been there; dad couldn't be encouraged by hospital staff to end treatment but a priest did put forth the question 'when is the end of your life? when you can't survive without care or when out medical can't help anymore? Can we postpone God's will? Should we?" All very guarded but very well taken. Dad was gone in a few days and got his favorite foods.
Solid post! Welcome!

Bud Light Lime...egad.

10 grand a month? Double egad.

Regardless, you have a natural, flowing storytelling ability. Keep it up. Post more.
Eden, this is beautifully written & I love the photo! Oddly enough, I took a similar photo of my Mom towards the end with the clouds & blue sky. I like your photo because he's looking towards it & almost looks as if he's being drawn into the sky.

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!)
I am so glad I found your blog tonight. There's a little club forming on OS, heh heh.
You write beautifully about terrible things.
"Guiness Is Good For You".
Wonderful, poignant post. And Bud Lite Lime is not the drink a dying man would ever want.
A tough deal. Your love and caring is touching - really - and that isn't even what you wrote about. Even though this was a sad and hard time, I enjoyed reading this as it is emotional without sympathy-seeking. Thanks.
Get that man some Guiness, or at least some good old American Budwieser. That will do more for his general health and welfare than that Nurse-Rachett-for-hire will ever do for him. Hell, just dump her altogether and spend that money on the beer and I bet you'll see improvement in the man!
this has got to be one of the most painful things in life
there is no real win usually
Hello All-

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
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
Dennis:

Thank you. You just made my day. I wish I could've done more for my father. He was a rare gem.
Tough sledding. We were blessed with wonderful hospice nurses when we went through this. One girl showed up at 2 am because I have given one of my guys too much morphine. She took my hand and said, "Jimmy, you can't fuck up this part. You really can't. Now go to bed."
Thank you. Clearly, so many of us experience the pain and helplessness in the face of losing a parent. You manage to write about difficulty that also gives the sense of a bird soaring. We all make decisions in the moment (hiring Craig's List nurse, running across the street only to find a Bud Light Lime) but in the end our hearts are true and full of love despite the lack of a kind, caring nurse, or a nice single-malt scotch on the rocks. You did your best with what you had, from where you were. Bless you.
When my father lay dying in a hospital, the only thing he really enjoyed was a strawberry milk shake. But the hospital wouldn't let him have any because it wasn't good for him. What irony.
Luckygirl333: Thank you. I did the best I could for my dad but never felt that it was enough. He didn't get the death he deserved but I was happy to fill him with as much love as I could--right up to his last breath. I am thankful for that, as difficult as it was.
Penrose: Those of us who have been there know....
As a recent caregiver (my mother suffered a stroke 8 months ago and has been in skilled nursing ever since) we took my mother off of all but the extremely necessary meds and she has improved tremendously and when she wanted tacos, we went and got them. When she wanted a hamburger with raw onions, we got her one. She is now on the list for assisted living and is doing so much better. When you are close to 90 yrs old, I say give the person whatever they want.
I'm with blondehussy--give a dying person whatever they want! If I don't get chocolate on my deathbed, I'll be eternally pissed off.

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.
I had a FIL, Harvey, who was a neat guy. The only one of the 3 FILs.lol
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.
blondehussy: So sorry to hear about your mom. It sounds like you are doing all the right things. Tacos. Hamburgers. Scotch on the rocks. Give her what she wants. She deserves it.
startthemusic: Thank you for your kind words, and for stopping by to read and comment. I think one of the most difficult aspects of watching someone you love die is feeling like you can't protect, or save them. Love her up while you can:)
XJS AND ME: What more do we want than our freedom? Well, that and a lot of love. Oh yes, and people to look out for us when we can't look out for ourselves. You gave Harvey a wonderful gift. What a great memory. Thank you for stopping by. Your comment is much appreciated!
I like the part about keeping an eye on you to make sure you didn't put him out of his misery. Well, really, I like this whole thing. :)
Thanks for sharing, a very poignant post.

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..
Thanks for sharing, a very poignant post.

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..
Randy: Thanks for stopping by, much appreciated. If it weren't for Linda's death watch I would've grabbed the rasberry flavored morphine sooner..it's what my father wanted. Linda wanted her 10k that month.

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!
On his last day, my dad asked for an ice cream...
Carole: Funny how poignant these last requests are, how they stick with us. I hope he got the ice cream. Thanks for stopping by.
At least you tried. Great writing here. Humorous and bittersweet. I hope someone gives me a good beer or a try at one. R
Rita: Thank you. I hope I get an extra large scotch on the rocks:)
I am surprised hospice, that you mentioned, did not provide "continuous care" at this phase of active dying for you, which would have eliminated you need to use craiglist for caregivers and pay them out of pocket.

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.
One more thing. Administering "comfort meds" to the dying, via Hospice guidance and direction, is not aiding and abetting or hastening death. It is to provide comfort. There is a very clear line of delineation and a reputable Hospice, most are, will support the caregiver's administration of these meds and help you through the understanding of why you are giving them.
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.
Tommye Jean Winkley: Thanks so much for taking the time to write such a thoughtful post. It means a lot. As for hospice, well, I just didn't have the best nurse in charge of my father's care. She was young and very concerned with protocol. She would not allow me to provide my father with the kind of "comfort care" I know he wanted.

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.
I completely agree with other posters who complimented and supported you as having been the best.

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.
I am deeply sorry for your unfortunate experience with Hospice. I want to believe it is highly unusual. My one and only professional experience in Hospice was with a wonderful agency and that is where I learned and the standard of care with which I measure "good hospice care".

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.
bajamsw: Thank you for your kind words. I think the particular RN I was dealing with did lack the heart I had hoped for from Hospice. There were many other aides that were wonderful, and one nurse in particular that was on call in the evenings that I considered my go to person. She understood my father's needs and wishes as well as my wishes for him. Overall the hospice care he received was better than any other medical care....it was just the bad luck of the draw with this one nurse.
Bud light...yes, the indignity.

Thank you for your brave write here. I really loved it.
Funny situation. Strange demanding from a dying man, but Kathy Riordan has a good point. Why would someone would want to die with that awful taste of Bud Light Lime? A few months ago, I've read that in an European city (can't remember exactly where) this beer was entitled as the beer of the month. Probably they never drank a proper beer :))