Feb 13, 2017

Caregivers Are Suffering; Stroke Survivors Are Suffering: Who Has It Worse?

The former editor-in-chief of the Philadelphia Daily News was Gil Spencer who said, when I was hired as a columnist, that the only reason people should write is to be read, whether it's positive or negative to their beliefs. Those words are indelibly inscribed in my brain forever. And I was reminded of them again in this post on Facebook.

On January 17, at 8:07pm, I wrote this in Facebook to the group called "Stroke Caregivers." My words set off a firestorm of anger, confusion, and profanity, all of which are ok. One person wrote, "GFYS," an acronym I didn't know. So I goggled it, and I found out. (Between you and me, I think GFYS is silly because our anatomies aren't built that way. How can you fuck yourself?) Anyway, read the comments. Some agreed with me. But I removed the names of those who didn't because I don't want bogus lawsuits, (bad spelling and grammar aside), and I deleted more because of repetition. But I left my name in when the response was needed. After you read them, I'll have thoughts of my own.


I wrote, "As a stroke survivor, and from all that I've read in your posts, we BOTH have it tough. But really, you can still dance. Get what I'm saying?"
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Hmm... I usually don't respond to these kinds of posts; but this 'keeping track' of who has it harder has no benefit. I would never say my husband who had a massive stroke that left him paralyzed on his right side, without 40% of his sight, and plagued with severe cases of aphasia and apraxia that leaves him unable to use any expressive speech has it 'better' than me. No more than I would say my daughter with Down syndrome is luckier than me; however, to dismiss the struggles, pain, fear, and responsibilities a caregiver has is hurtful. Can I dance?... Yes, when my body isn't so riddled with pain from caring for my family or when I am not sick from the stress. This talk does no one good. I wouldn't be anywhere than by my husband's side and I am 100% sure he would be by my side if the tables were turned. I am sorry you had a stroke- I wish you didn't. Please be kind to those of us who love and support our survivors.
Sure -- I can dance. When I might actually have five minutes of someone else taking care of my husband - or when I"m not overwhelmed by fear and anxiety from everything that his strokes have changed. His strokes affected me in every single way -- just differently than him. We are all working through these struggles together -- survivors and caregivers.
We heard you loud and clear. Get what I'm saying?
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I thought that this group was for caregivers where we can vent freely. And no my husband and I can no longer dance. Ballroom dancing was once our favorite activity.
I thought only caregivers were allowed as well. Is there vetting that happens when someone wants to join? Admin?
Yes...It is true that I can still dance....but for me...where is the joy of the dance when the only person I want to dance with can not join me :(
Wow! Some days I wonder which one of us is worse off!
I just reread the informational post by Admin and it does say that Survivors are welcome but that if they are offended by what they read here, other sites may be more appropriate for them.
I think that makes it a little more uncomfortable for us when sharing our honest feelings and try to keep in mind there are Survivors here. 😕
Well that is one of the hard things about care giving, don't you your self be sick, feel bad, Overwhelmed, Exhausted, Depressed your self, Dead even though you are Alive, the Survivors make it ALL about them, sometimes a little self centered. If no one likes what they see on here don't come on! Just like my self centered husband gets on his sites see something that upsets him and takes it out on Everyone else I tell him STOP READING IT!! I can tell you one thing about care giving after So long and So much of it. You become hard sometimes because you get so Sick and Dam tired!
I can agree to what your saying. My husband has managed to become so manipulitave that is down right scary
It's not a contest about who has it harder. It's a completely different set of challenges for both. Trying to compare apples and oranges isn't going to help any.
Joyce Hoffman
Joyce Hoffman Yes, but it proves my point.
January 25 at 9:25

No it doesn't prove your point at all. It proves that your point is pointless.
I'm sorry, what was your point exactly? I'm not trying to be rude, I want to understand what you're saying. Speaking as a third party, I'm watching what my dad's strokes are doing to him, both physically and mentally, and I'm watching what the effects his strokes are having on my mom. I realize that all strokes are different, and that some are not as affected by their strokes as others, who may be extremely incapacitated. My dad isn't as badly affected physically as he could have been, which I'm grateful for. But as his caregiver, my mom is having to deal with a very difficult set of challenges, and it's very hard on her, both physically and emotionally. Please don't say that it's harder on one group than the other. It's not fair to either.

I usually just read posts here, and don't comment.
I am so sorry you suffer from a stroke.
But, feel you're out of line here.
Yes, our loved ones are suffering ....
They have no choice in that.
Caregivers CHOOSE to stay.
Choose to give all that they have
to care for, often unappreciated, and sometimes downright abusive, loved ones. Oh, and self-centered loved ones.

Liiike .. coming to a site for Caregivers to be about themselves for five goddamnit minutes of the day, and trying to throw guilt on them
Joyce Hoffman
Joyce Hoffman You are unhappy as a caregiver? So then why do you do it?
She never said unhappy...
Well, that posted before I could make corrections.
I'm sorry..
I should have kept quiet.
What cha sorry about? It's the truth. We as caregivers have no clue what the future holds for us when our loved ones come home from the hospital. Not everybody has a positive experience. Hugs and prayers for you and your doing more good than you realize
Yes caregivers can dance...but with who? Its a tough life altogether!
Joyce Hoffman
Joyce Hoffman Maybe I should have said peel potatoes.
husband has No movement on left side and cannot get himself up , gets tired and needs help eating ,sooo , After changing all day , bathing , feeding (food has to be blended) , medication ( has to be through g-tube),breathing treatments , brushing teeth , moving every so often, washing ( use a lot of wash clothes and towels and sheets , mopping to keep sanitary and fresh , I think I would rather collapse into bed........and I also take my mom and dad to appointments and cook and clean and look after them and I have a 13 year old ...
I have seen this happen z few times on this site, so much so I don't feel I can post about how I'm feeling, that's why I started another group for Partners of stroke survivors where we can feel free to say how we are feeling ask what we may think are silly questions without being judged, I won't post the name of the group but if you would kind to join please send me a personal message with friend request xx
Joyce Hoffman
Joyce Hoffman Why does someone "caregive" when there are options? Caregiving is only for special people who don't complain about it to other people.
So Joyce what are the other options you are talking about?
I'm"caregiver" to my 30 Yr old daughter
If by dance you mean be happy or at least content I say yes! It takes time and for me a relationship w God.
Take it one day at a time. I cried many days and nights but it be came less and less.
I try to find good in lil thing.
Best wishes too you.
Yes dance, dance, dance. It's great exercise in any form. I do it with my husband who is in bed and asked him to shake his shoulders because he was getting contracted and I like to see him smile. Dancing is for the soul and everyone should do it whenever they can. Express yourself even if it's a sad dance.
February 4 at 6:28pm
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My post was in a metaphorical context. "You can still dance" shouldn't be taken literally. Some people in this group did. With my right side affected, I could have said lots of other things, like "You can still play the piano" or "You can still clap" or "You can still play golf."

Some pleaded for the Admin to step in and say something. Huh? If Facebook is a populist tool, why?

In response to that person who gave the first reply, don't bet on your spouse if the tables are turned. You may think that, but everybody processes caregiving differently. For example, my partner of 17 years couldn't take it 12 years into the relationship when I had a stroke, and rather than wait for him just to come out and say I should leave, I ultimately left to go to another city, with a driver and me traveling through a snowstorm with icy roads. All the inferences were there, like telling me about the woman a long time ago, a cancer patient, who lived in their house and all the resentment he had by losing his space, or imploring me to watch the movie Amour about two octogenarians where the wife had a stroke and the husband, who was the caregiver, contributed to her demise. I am happy without him. I think he is happy without me. I haven't talked to him in years. But I did him a favor. I don't like to see anybody struggling.

I wasn't keeping a scorecard of who had it worse. But just to be clear, the stroke survivor wins in that category. Some have lost their jobs, their pastimes. Some suffer from uncontrollable spasms, deep depression, mood swings. Strokes are a bitch. 

Mark Twain, amid conjecture, is often given credit this quote: You can be sure of two things in life: death and taxes. (Ugh. I know about the latter). But relating to the former, until you do die, there are options to any situation in terms of caring for a stroke patient. Listen up, caregivers. Take a break by having somebody--a neighbor, a family member--do the caring for a bit. Google your options of alternative places where the stroke patient could go for care permanently. You might be surprised at what you could find. But by no means, don't caregive and resent it. Don't play the victim role. Even though stroke survivors' brains were affected, they know. Trust me. They know.

Plus, caregivers can still dance. That's the bottom line, isn't it?


5 comments:

Steve Odonnell said...

Hello
I was at a stroke meeting last week & there was a man there that said he took early retirement from Navy so
he could become a caregiver for his wife. It struck as WHAT do you me, VOWS say for Better or for Worst.
In some case's some just didn't hear that awful word, for WORST = like STROKE. What ever happened to that word "LOVE"
You help that person thru there time of need. For sure you didn't ask for either. Caregivers usally get paid
for there services. LOVE is free of charge. Caring is not making the person you love feel guilty to be breathing. So if you can dance by all means dance & if can smile, smile. You can do what ever, but please
unless you are getting paid do not call you're self a "caregiver" to the person you LOVE.......

Joyce Hoffman said...

I agree, Steve.

Teri O said...

Shame on you! You have alot of nerve judging others, especially when you don't know individual circumstances!Everyone does not have the same options. It is disgusting that you troll sites looking to steal peoples stories and then judge them. You do NOT have my permission to EVER copy ANYTHING I have posted, or will post. One more word for you...Karma

Joyce Hoffman said...

Too bad, Teri. You exposed your identity as being one of the people who responded to my post. You did it, not I. I was determined not to use anybody's name. And I didn't. One more thing--Facebook is a populist tool. If I had to it again, I'll do it just the same way.

Anonymous said...

I was a caregiver to my husband for 15 years after he had extensive treatments for brain cancer, including a craniotomy, chemo, and radiation. After that I experienced 3 hemorragic strokes that temporarily paralyzed my entire right side, partial blindness, and severe cognitive impairments that cost me my job and has drastically changed my life. Who has it worse, survivor or caregiver? YES! It sucks on both sides! Which do I think is harder? If you are in a loving marriage, I find caregiving takes more of a tole for many reasons. It is physically demanding, financially stressful and time exhausting. More important is the emotional tole it has on your relationship with your loved one whom you would give your life for to spare them. It is stressed over and over for caregivers to take care of themself. If you are in an airplane, you are instructed to put on your air mask first so that you can help others. This is vital because if something bad happens to you, who's going to care for your spouse? As for me, I have been in the role of caregiver and survivor. I am beyond grateful for the love of my spouse who is there for me, for better and worse! ❤️