Keep Breathing

Erica K

Erica K
New Jersey, USA
September 26
I have a new blog: Grew up in Jackson Heights, New York, but now live in Jersey. Married and the proud owner (servant?) of 4 cats, including a little blind guy named Quincy. Jobs have included: English teacher in U.S. and abroad, cabaret performer and member of a NYC sketch comedy troupe; now a legal secretary and freelance writer. Other jobs: canvasser for NYPIRG/cannery worker in Naknek, Alaska (a fisherman told me it was "the ugliest part of Alaska")/dog kennel cleaner/member of the swine and poultry crew on a California farm. "Ever tried. Ever failed. No matter. Try again. Fail again. Fail better." Samuel Beckett


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APRIL 13, 2012 3:40PM

Friday the 13th and Clueless C***suckers

Rate: 25 Flag

I spoke with a relative this morning; let’s call him “Bob.”  We had not spoken since last year, I think.  He asked how my Mom was doing.  I could have sworn I’d told him that she had Alzheimer’s or at least dementia, but what the heck, he said he didn’t know.  When I told him that Mom could no longer walk and was wheelchair-bound and incontinent, he said something along these lines, “Too bad they have to keep her alive like that.”  I guess “they” referred to the doctors and nurses at the nursing home, but I’m not sure.  He told me about a friend who was ill and on dialysis who chose to take her own life by unplugging her machines at home.  She invited all her friends over for a party and died two weeks later.


That’s all well and good, but my mother cannot unplug her own life!  She isn’t on any machines right now, and yes, she is deteriorating physically and mentally, but I do not have the power or right to end her life. 


When I told a former (emphasis on “former”) dentist that my mom had Alzheimer’s, he said, “If I had it, I’d just shoot himself.”  Then he said, “Now, I’m depressed.”  Hey, man, thanks.  Another clueless cocksucker. 


I felt like I had to defend myself with Bob.  I told him how I downloaded music on my iPhone and hooked it up to speakers for her to listen to, showed her movies and was planning a museum trip.  I told him that I was active in the Alzheimer’s Association:  how I did the Memory Walk every year and went to the Advocacy Forum in DC last May and that I spoke with congressional aides and heard various speakers and learned about the latest scientific developments. 


Why did I feel I had to defend myself? Was it that low self-esteem creeping back into my bones, that feeling I wasn’t doing enough for her or that I wasn't a good enough person or because I don’t have kids?  I don’t know.  I explained why she wasn’t living at home with us:  we could not afford a round-the-clock nurse and my house was not wheelchair-friendly and we could not afford to re-do the whole house.  Why did I say all that?  The more I think about it, the more pathetic I feel.


Anyway, as my husband Lorin said, “consider the source.”  Bob is a widower, although he is still very active and has children and grandchildren and travels frequently.  Lorin said he is lonely and probably doesn’t have much to look forward to anymore, and that might be true.  That doesn’t stop me from feeling shitty, though.  The call transpired at 10:00 a.m. but I didn’t feel the effects till later this afternoon.  I took a walk at lunchtime and started to cry.  Am I going crazy or can I blame it on Friday the 13th?


I would appreciate any advice or clues as to why people say such hurtful things and why I let them bother me. 


In the meantime, I will defer to Al Swearengen and my other pals from Deadwood:


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People say shitty things like that because they are ignorant. The care takers always feel the pressure of trying to do things right by the loved one and that is one ton of pressure! Consider that you are explaining it all to him for his education, not your defense. He obviously could use a little education though unless you have been, or are, a care taker, you cannot fully understand. A good cry now and again can help and I hope it did though it can take some time to be ready to "hit it" again. Sending a hug to you!
Thanks very much, PTS. Sometimes I feel like a human punching bag.
Clueless, insensitive, boorish, ill-bred people say some really f*cked up things. How could it NOT bother you? Oh my goodness, Erica, it's not you, it's THEM! It's hard to believe there are so many of them walking around loose out there... xo ~r
I suspect that "clueless" doesn't accurately describe the cocksuckers who intruded on your life. Perhaps a more appropriate phrase might be "scared shitless."

Over the last decade I watched helplessly while my dad passed away from Alzheimer's and I expect that at some point in the next couple of years we'll be burying our "wheelchair-bound and incontinent" mother. Thank heaven my brother and I have their Medical Powers of Attorney, otherwise her life would end with the journey from the nursing home with feeding tubes to the emergency room and into intensive care.

Instead, when she loses her gag reflex, comes my brother and I will place her in hospice where she will die from kidney failure just as my Dad did. To some folks that sound heartless, but I spent a week at my father's side and watched him slowly move from a rigid fetal position to a much more relaxed prone position.

Apparently the toxins released into the blood stream by kidney failure have a narcotic effect and the grotesque neurological symptoms of advanced Alzheimer's are relieved. My Dad waited until my brother and I took a moment out of or vigil to go out for dinner. We'd just finished and got the check when we got the call from the hospice nurse.

More than anything else your post identifies our need to plan those last years and months of our lives, so that our kids aren't stuck between that proverbial rock and the hard place between the doctors covering their asses and the faux-macho cocksuckers who don't have a clue.
You have my empathy and prayers.
Thanks, Joan. I really appreciate you saying that. xo
jmac, Thank you for that. My mom was diagnosed in November 2010 and since then I have done everything in my power to plan for her future, and mine with her. I have Power of Attorney and am her Health Care Proxy, I have made funeral arrangements (was hard to face but I had to since she had done nothing), and my husband and I had all her belongings moved into our home when she was relocated to the nursing home last May. She was interviewed by a psychiatrist last year who explain the DNR to her, and she said she did not "want to come back," so they gave her a silver and red bracelet signifying that. I admire all you have done for your Dad and hope I have the strength you did when she gets closer to the end.
Often there are two things I sometimes sat to the clueless individuals Erica. Either help me or get outta the way....

I know you must be under enormous pressure to do what it right for your mother. Remember that YOU have a life too.

Don't offer to explain. Honest.
Just state the facts madam.
And move on away from the soul sappers.
I wish I could throttle them for ya...You can tell 'em I said so.
Thanks for writing about how this made you feel, so that we could affirm you in what you are doing. You are doing what needs to be done and with caring. People say and do things sometimes that appear callous and sometimes it is, but sometimes it is just ignorance. Ignorance of life, their own life experience or just insensitivity. My wish is that you do not carry their blackness on yourself, but let it pass through you, and away. It is not yours and not how you feel, therefore it has no power. It is only their weak attempt at something deep within themselves trying to express, perhaps their own fear. Breathe and release it, welcome in the goodness of what you are trying to do for your mom. That is stellar.
Yes, Erica, it IS the many who are clueless. You are doing what fewer and fewer people have the "time, nor convenience" to do, which is honoring a basic tenet of civilization; caring compassionately, in detail, and in as many ways as possible for our parents in their declining years.

You deserve to be proud of Yourself, and will find that Your actions today will comfort You for years to come. The barbarians will never understand these basic concepts of humanity.

You asked for advice in the latter part of Your post, so I will tell You what worked best for me. I simply, tuned out, most of those uncaring cretins until a point was reached where I hardly heard nor responded to their words. Soon, they drifted away, which left me free-er to carry on in the way that I knew I must.

Glad to hear that You fired the dentist, and I fear not that Your excellent and empathetic instincts will carry You the rest of the way.

Maybe clueless people need instruction on what to say. How about, "Oh, how awful both for your mom and your family. I'm so very sorry." Really, people!
Oh, I can SO relate to this. As you know my mom just passed in February after ten years of progressive dementia. I cannot believe all the stupid, stupid, stupid stuff that people said about it. One that was very common, was the "I will just kill myself." That one (pardon the pun) just slays me. I speak wryly, but seriously, how do you know when to do that? When you are still in your right mind? I mean, come on. And I loved the ubiquitious "they" in your piece. Good story, thinking of you, it is so hard. RRRRR
Mission, thank you. That is excellent advice. I can usually tune out the ugliness and flap it off like water off a duck's back, but not today, I suppose.

Sheila, yes, ignorance is the culprit here, and perhaps his own personal fears.

Mark, thank you for saying that. Luckily I haven't encountered too many barbarians as of late. Will have to sharpen my mental sword for coming battles.

Ccdarling, yes, a simple "I'm sorry" would have been music to my ears.
Bernadine, yes, the omniscent "they" who take care of all the dirty business. In this case it felt like he was expecting me to do something about it, perhaps find another Dr. Kevorkian?
I don't think that anyone can/should give advice/opinion in such a highly emotional and personal matter. I can only speak for myself. My family knows that I do not want to live with less than optimum cognition. Other than that I want to live. Thank you for the Deadwood video, I wish someday will be be as eloquent. Food for thought. R
I do it, too. I feel an insane need to defend my choices to people who diss on them and I just can't stop until I bring them around which, as you know, never happens. Then I feel stupid and pathetic. So, you aren't alone in this habit. I think it is a power trip by these other people- a need to prove themselves better by making me feel bad. And when I catch myself I stop it. It's just the catching...

My mother passed away in November from complications of Alzheimers. Dad took care of her and everything associated with it and wanted nothing from me so I had time to distance myself. Mine is a strange family.

I wish you the strength and peace of mind to get through and to be at peace.
You are doing the right and only thing as far as I am concerned. To the clueless, leave them with nothing.
I don't know what you do about people like that. When my mom died after 15 years with alzheimer's, I had a conversation with my aunt, her sister. I was grieving. Nobody in the family got that. Everyone thought I should feel relief, but I did not, not for years. I grieved alone for her. I said to my aunt, "I miss her." She yelled at me, "She had no life! Did you want to keep her alive with machines and things?" WTF? You can miss someone and recognize that it was time for them to die. I had put her on hospice. Somehow my mother's sister felt it necessary to scold me for even missing my mom, as though even the thought that I missed her was equivalent to taking heroic measures to keep her alive. Why is it so threatening that you can love and care for someone when they have dementia? It makes people awfully uncomfortable.

I also did not have my mom live with me. I moved her closer, and then to a residential care setting. I did not think I could do 10 or 15 years of home care. I knew my limits. I wanted to protect my relationship with the man who was really the only person in the family who actually helped me with Mom. I successfully avoided feeling guilt on this topic (though not on others). You have to know your limits, you have to put your own oxygen mask on first, or you will not be any good to them.
It is hard to be a parents advocate and I understand feeling like you are defending yourself but I agree with Painting the Stars you are doing what you can to educate people. If they haven't walked the walk they have no real idea how the story ends. Hugs and good thoughts...
Erica, I don't see what you did as defending yourself. Rather you were letting him know, sweetly, by telling him how you are making her life as pleasant as possible, what an ass he was to regard your mother as a thing. I remember telling a friend once that if I got Alzheimer's I'd rather shoot myself than be a burden on my loved ones. He made me laff when he said, "Why? You looked out for them all these years. It would be their turn to look out for you. Just sit back and enjoy the attention." Well, I know it's not that simple for the patient, that the body slowly shuts down and the misery is unfathomable from our perspective. But at the time I liked his attitude. He's gone now. He had a transplanted kidney that was going bad and he dropped dead at work with no more warning than feeling very tired, according to a colleague where he worked as a counselor. That's the way I'd prefer to go when it's my time. Just...whew, I'm exhausted...kerplunk.

I very much admire the love and care you're devoting to your mother. Ignore the asses who don't understand.
Why? Some are insensitive, some are ignorant and some are assholes. And some are all three. They usually run for office as Republicans.
I guess I have thin skin, caz that would have bugged me to. He was speaking of someone you love dearly, how dare he?! My hubby always says, "He can't press your buttons unless you LET him." I am still striving to fully understand that one.
It is easy to sit back in your comfort and tell others what they should do, and it is none of his business too! You can't tell me he was genuinely interested. Just my take on it.
Fuck "Bob". I'm glad you educated him. If he's half a man he'll realize how inappropriate his comments were, and maybe he'll be more sensitive the next time he's in a similar situation. Each of us must deal with these issues in our own way. Honoring your mother's desires and bringing as much sunshine into her life as you have been doing is love. The greatest part of being human is giving and receiving love in all its forms.

But I gotta thank you for the cocksucker sure made me laugh. I love profanity used properly, but with my granddaughter in the picture, I've had to clean up my act. I tried to convince my daughter that we could just tell her grandma has Tourette's Syndrome, but that seems insensitive to those afflicted with it.
I think these people are just ignorant to this situation and really don't want to think about it. Until you've walked in those shoes they really don't know. As to your situation, I truly believe that you will know when to make the right decisions in this progression. I truly could see that it was time for my mother to let go. My dad couldn't. I actually had to send my father out of the room. Every time my mom would stop breathing he would intervene. I bought him a shrimp po-boy and make him eat while I sat by her. I held her hand and told he it was ok and she left this world. I'm glad you have a dnr and you are her advocate. You will know. Don't feel you have to defend yourself. She will tell you.
Boy this is a tough call. people can be rude and sometimes it seems like there is no reason for it at all. keeping ones calm is another matter as well. I always try to speak my piece softly and calmly and see if this gets through. if not I move on and try not to let it interrupt my life.
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I commented on this yesterday but it's not there.
Everyone by now has said it better than I could. Basically, these clueless cocksucker types are simpleminded or something. They don't see the complexity. This is your mother. This is not some facebook friend. Our modern American Culture tells us to abandon our parents and "move on" and all this idiocy that has left so many lost and confused. Who else but our mothers loves us unconditionally and were there for us. Even if our parents were faulty-- there often is such love and history there.

You, in my very strong opinion, are doing the right thing . The selfish or brainswashed others who beleive that you should just kill your mother cause you need to "have your own life" are mistaken, in the real spiritual sense, that they can't grasp.

Knowing you a bit , I know that you have a big heart, and if you try to change that now, you'll really be a mess. Go with your heart and your gut and view the clueless cocksuckers as the gnats they are.
Yes; i's blind ignorance and you rose aboove.

Thoth, I appreciate your honesty. Profanity can be eloquent under the right circumstances. It certainly feels good to say and hear the word, "cocksucker."

Phyllis, I suppose my need to defend myself comes from feeling "less than" other people, including many family members. It is something I have to work on.

Buffy, thank you.

Sirenita, You hit the nail on the head when you said they can't understand why you wouldn't feel relieved at her passing and didn't understand why you were grieving. Like you, I know I couldn't have my mother stay with us, firstly for financial reasons, but secondly, I would become a full-time caretaker, and I don't know if I could sustain that kind of energy and not have it destroy my marriage.

lunchlady, Yes, they need to be educated. Thank you.

Matt, Believe me, I have thought and said to other caregivers in my group that if I were diagnosed with AD, I would just shoot myself too. I think we have all thought that (those who are caretaking), but I don't think I would ever tell another person who was taking care of a loved one with AD that they would be better off dead. Your advice is simple and correct: ignore the asses. Thank you.

Tom, Yup, I don't think he's a Republican, though. LOL.

Cindy, I get where your husband is coming from. A lot of people adhere to that "nobody can make you feel anything" and so on, but sometimes it's easier said than done.

Beauty, Ha, ha, you are too funny. Something so liberating about saying and hearing the word, "cocksucker."

Barbara, ignorance is the culprit here, you are right. What a beautiful way you handled your Dad, and helped your Mom leave this world.

Algis, good advice. What a difference a day makes, as the song goes. I feel much better today. Thank you for the graphics . . .

Kate, Yes, right on! That's what I feel like saying sometimes to people. Do you say to a person with cancer or their caregiver, "Why don't you just let them die?" Jesus! Neurological and mental illnesses still carry a stigma in our society. xox

fernsy, exactly, my friend. It is a ME world out there, and people are all about doing for yourself and f**k those who are obstacles in their path. As you know, my mom was hardly the perfect parent, but I can't see letting her suffer and die alone simply because of past hurts.

Jon, thank you.
Dementia is totally misunderstood. Reason? The person who is suffering cannot understand nor express themselves. We, their caregivers, must speak for them. My mother lived with it. She spent her last few years in a private nursing home. The care was better than I could give her. Still broke my heart. I fear for my own time. Planning is difficult. I've written about it, but when the time comes it falls on someone else to offer care. We are a society of caregivers. From the cradle to the grave. My advice for caregivers is to find time for is a daunting challenge. Don't listen to idiots who have no idea what you and your loved one are going through. And tell you loved one that you do care and that you love them. Their inner self may just be listening.
I like what you said about the inner self listening, Ande. Thank you for your input.
Let anyone who has criticism about how you're caring for your mom walk in your shoes for just one day. One day f----- day I challenge him or her. I think people say things like that out of ignorance and fear. illness and dying is terrafying. Degenerative illnesses like Alzheimer's are especially cruel, they are slow, painful, and push all our buttons of vulnerability.

The amount of stress, and multi tasking you juggle and suffer through as the primary caregiver for a person living (I emphasis living) with Alzheimer's Disease is enormous, and the ultimate gift of love. Yes, I'm sure there are Dr. Kevorkian moments; and I'm not going to judge anyone who wants to make that choice. I live with a degenerative disease and have had those moments myself-so I will never judge anyone. I support death with dignity. But it is inappropriate and insensitive for someone-expecially someone who does not know you very well to say that to you. It is a very personal decision. Your mom is very much alive right now. I know the candle is slowly flickering out...and its so very painful, but every moment of joy you give her, is another happy spark of light in these precious days you have together. You've been writing about mom's love of music. Here is a time in her life when she can truly focus completely in the music.

People say hurtful things for so many reasons, but yes, consider the source. Sometimes it's ignorance, fear. rage, but no matter what, have confidence that you are doing the best you can, that you are loved and cherished and things will get better.
The world of full of stupid people. We know as much. Just stay calm and carry on. That is all you can do.
Stupid cocksuckers! I'm so sorry u had to go through that. Some people are just insensiti ve and can only see things in terms of themselves. I experienced similar experiences when my dad. Was bedridden and couldn't swallow. My doctor said he'd shoot himself too. He's. Not my doctor. I've cried and I've broken things in anger. Stupid people stupid hearts. You are an amazing wonderful. Caretaker and your mom is so lucky to have you. I hope you meet more people who are kind and smart in the heart . Xxo
Stupid cocksuckers! I'm so sorry u had to go through that. Some people are just insensiti ve and can only see things in terms of themselves. I experienced similar experiences when my dad. Was bedridden and couldn't swallow. My doctor said he'd shoot himself too. He's. Not my doctor. I've cried and I've broken things in anger. Stupid people stupid hearts. You are an amazing wonderful. Caretaker and your mom is so lucky to have you. I hope you meet more people who are kind and smart in the heart . Xxo
Nancy, yes, they have no idea what I am going through or what you go through on a daily basis so they say whatever comes to mind (or at least some do who are less sensitive) without having all the facts and a true understanding of the disease. I am in awe of what you experience on a daily basis in terms of pain and know it is a daily battle for you. I'm sure people have said insensitive, ignorant things to you at well. What can we do ultimately but walk away and chalk it up to ignorance and /or self-absorption?

Mary, thanks.

Joanne, yes, cocksuckers abound in this world, and many, sadly, are in the medical profession, the so-called "healing arts." xo
I don't know why people say the things they do....that is, until I say something equally stupid. As a Christian, I have heard people say "Well, God never gives you more than what you can handle...." and I know that's a big fat load of rubbish, too. Still, I have said some terrible things myself and not even known about it until a friend told me it bothered them years later....
BP, you're right. To err is human. I also don't believe a lot of the adages that try to explain the tragedies and trials and travails of life. One of my least favorite is, "It was meant to be." Ugh!
Since Bob is a relative I"d spot him a couple of points for just being clueless. This is probably not the only clueless moment in his life. You have nothing to defend yourself for and unless he's walked a mile in your shoes, he doesn't get a say....HE DOESN'T GET A FREAKIN' SAY! And since he is so brilliant ask him if he sat and hugged his wife; did he remember that needing the sense of touch does not go away. Even in what would be considered an excellent environment, one of the most poignant things missing is the lack of touch. Not sure what that is about, so I decided to just go up and hug my daughters from time to time for no apparent reason. Interesting isn't it that those who'd use a gun are still standing up talking. Well done, Erika and hang in there.
Patie, exactly. Let me preface by saying that "Bob" is not the most enlightened individual in the world and as I said, he lost his wife a couple years ago, so I try to cut him some slack. I think fear causes some people to react with that knee-jerk "I'd just shoot myself" response. Thank you for weighing in. Best, Erica