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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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.
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.
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.
-R-
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.
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.
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.
I very much admire the love and care you're devoting to your mother. Ignore the asses who don't understand.
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.
But I gotta thank you for the cocksucker montage...it 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.
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They don't lay down and let the cancer eat them to death. They take a chance the chemo and other interventions might work for a short time. So, they are willing to go through agony on a maybe, but would rather die than lose their minds?
We do not know what is going on inside the mind of a person who is beyond speech. If their eyes are moving, they're thinking, if they are thinking, they are feelings.
Bob sounds like the kind of guy who would deny his incontinent wife water so she "wouldn't need changing so often."
This is how elder abuse happens, thank God karma brought you to the aide of your mom. Bless you, girl! When it's your time, someone will do the same for you.
P.S. If you shoot yourself NO LIFE INSURANCE, so stop with the stupid come back.
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.
r.
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.
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.
Mary, thanks.
Joanne, yes, cocksuckers abound in this world, and many, sadly, are in the medical profession, the so-called "healing arts." xo