Lisa Vanderburg

2 years ago · 3 min. reading time · ~100 ·

Blogging
>
Lisa blog
>
Unashamed and Freeing; who knew?

Unashamed and Freeing; who knew?

my bleedin' hand
my bleedin' hand


Now, that's a first!

 

What I don't infer or imply in this article:

I do not advocate for, nor seek to undermine those either suffering mental health issues or life-altering stresses that can cause self-harm.

I do not advocate for, nor seek to undermine the seriousness of suicidal ideation (passive or otherwise).

I do not advocate for, nor seek to undermine those who are burdened by the care for others. They are generally left behind heros who have made the costly decision to stay. I applaud them. I do however suggest that those sole carers of decades-long duration are particularly vulnerable to periods of intense duress and subsequently, may be more tetchy than the average Joe.

 

Bad habits aside I am not generally a self-harmer, at least physically I should say. Mentally; that's quite a different ball-game. I am well-practiced in self flagellation of spirit, regardless of blame apportioned. Age, however, has its advantages; I simply can’t be arsed anymore with that sort of nonsense.

So why did I slit my own wrist less than a week ago? Believe me, you may be as surpised as me! The easiest question to answer: I am exhausted. I am the sole carer/care-giver for my husband, now in advanced stages of Parkinson’s disease at 20+ years. Simple, uh?

Strangely not. Our adult sons don’t really get it even though they have been witness to some of the difficulties for both me & hubby. The son that lives here gets it more than the other (still Stateside), yet I’ve talked to them before albeit in more of a clinical fashion, but they must know the strain is immense. They’re hurt, I guess, like they could’ve done anything about it. Utter claptrap. I wouldn’t even have told them - my brother & his wife did. Hubby had called them right after the ‘incident’ which did nothing for my initial reaction. But they know more than anyone else just how much we go through; they are loving and fair, brought comfort and my brother cleaned me up good (I’m not going to no hospital nor doctor) and calmed hubby down. God bless them! A day later, I felt better than I had in a very long time. Why? Because it accomplished something insurmountable; hubby relinquished his ass-shaped stance on getting nursing care in. It will take months to get in place, but it’s a start!

Point being, I could’ve done it earlier. He’s been falling, choking and other hellacious stuff for a while now. He went into crisis around the beginning of lockdown here & I am completely at a loss to explain it all. For someone who communicates best in the written word, that’s saying something. Because the carer is also the nurse, the dresser, the shopper, the driver, the waiter, the cook, the organizer, the interventionist, the hustler, the cleaner, the comforter, the pharmacist, the secretary, the schlepper of bodies. Goes on & on, and added to by the sheer lack of medical support. Our own primary doctors did not seem to know of us at all, but Covid checked everything. Of course, the indignities he suffers are too numerous and too unfair to state, you’ll be happy to hear. As, eventually, assessors came in, they too were unable to get him to cross that bridge. I could’ve forced him, but that’s the line I wouldn’t cross - he had to make the decision himself. That’s MY choice.

The reason for broadcasting this? Despite all the talk of mental illness, carers under siege etcetera these days, there are millions of us, unpaid carers whose lives are completely consumed by those they care for. 

It’s not the fault of the patient. It’s not anyone’s fault. It’s simply the truth.

Me & hubby had been negotiating the inevitable needs of his encroaching decrepitude for a couple of years now. It was only after a fall while he was in ‘stupor’ - he suffers multiple parasomnias so sleep is a horror - and I’d been told that I could no longer lift him; get a ambulance instead (he’s way heavier & taller than me & that’s led to significant spinal damage that may require an op or two for me), that I cottoned onto two things: getting an ambulance in these times would mean leaving him until he’s cold & dried out. Second, I knew I was broken in every way possible.

So I made a choice. We’d have to go on until one of us broke. I assumed it would be him - he’d break something and end up hospitalized. This had always been my worst fear as I knew what could happen (ask any nurse). Having to let go of my control over his welfare was truly agonizing and I wept for a few hrs that night…quite unlike me.

I’m not being noble, but…it’s not his fault; it’s Parkinson’s. Why should he be denied any dignity, compassion or humanity simply because of this awful disease? That’s why I decided the choice was his to make.

That’s why I gave a pint.

All is moderately calm for a change. Shit goes on, tempers flare, his Parkinson’s rules but it hasn’t won yet.

ripped from Fine Arts America..my bad! Lovely though
ripped from Fine Arts America..my bad! Lovely though


 

Thanks for listening! May you and yours be healthy. May you have no clue to what I’m talking about ever in your lives. Wishful thinking may sound cheap but it’s all we got, no?

Oh, I hope this bloody plague has not darkened your door; it will have ..some of you.

Happy holidays and so long 2021!


 


 

Comments

Lisa Vanderburg

2 years ago #8

Debasish Majumder

2 years ago #7

Great buzz @Lisa Vanderburg ! just amazing! enjoyed read and shared. thank you for the uzz.

Pascal Derrien

2 years ago #6

I have often thought about the burden of carers looking after people with neurologic disorders it is harrowing, hard and thankless almost on a daily basis, I am surprised tbh you lasted that long before breaking down but maybe a blessing a disguise…. LOVE also leads to a point of rupture sometimes take care Lisa

Lisa Vanderburg

2 years ago #5

#4 #5 #6 #7 Thanks so much for your empathy and love, I am your humbled servant.

That said, this is less about me getting help or my rights. Even in the 1st world at present, we-the-need cannot get the help we have come to expect because of the surge on staff, resources etc. It has, by necessity, become a paper-promise, so I must wait like millions of others. We had health insurance while living Stateside until that very American ‘perfect storm’ where we both got sick cronically (that's the no-no); I tallied tens of thousands in hospital debts because I have a rare disease that was not identified until the UK, hubby got sick, had to stop working (Restaurateurs), sold up, then recession, repo'd house, cars, kids, had to move to UK. One alternative for me - NEVER for my charge (in the blackest of dark) is to die, but even my X-acto blade defies me 😅That IS a joke - glad I didn't try it on my neck!

More, it's intended a refection on that hair-line wire we [care-givers] must stay on to avoid falling into apathy and indifference towards those we care for. Yes, I shouldn't have done what I did - it wasn't intentional, but that's a different point to the battle that rages; the powerful urge to de-humanize our charge in long-term isolation. Until you walk that path or witness it enough, no words can explain it. Hubby's brain is messed; his mind is all there! He deserves the right of choice too.

P.S. Where's the bloody spell-checked gone?? Thanks, loves!

Lisa Vanderburg

2 years ago #4

Ken Boddie

2 years ago #3

Your Grace the Duchess of Dude, I have missed your unique wit and repost of late but trust that, now you’ve got such a magnificent rant off your chest, and in doing so have doubtless relieved the steam from the family pressure cooker, along with lowering your blood pressure a tad, that you’ll turn your hand (the good remaining one) to whacking a few bums, with the sole intention of soliciting ongoing assistance with your movement impaired hubby, his Grace the Duke. There comes a time when we oldies (sorry, we more worldly wise and occasionally more mature) need to shout out for help, and to hell with the consequences and the procrastinating habitual ditherers in the health service. Stand up for your entitlements from those around you is my advice, although who am I to speak. Last time I stood up was in a bus and when I turned round some young whipper snapper had taken my seat quicker than a rat up a drainpipe. 

Keep on keeping on, Lisa, but make sure someone has your back to support you, particularly if you’re on a bus. 

I remain, Madam, your most humble and sincere servant. 

The Bard of beBee. 

Fay Vietmeier

2 years ago #2

@Lisa Vanderburg 

“left behind heroes .. completely consumed by those they care for” 

“broken in every way possible"

If I understand rightly - you will be getting nursing care coming to your home .. a “start"

.. please God expedite this help .. 💜

The lovely image you “ripped” made me wonder if stones can drown?

Also brought to mind “Stones” by Neil Diamond

Stones would play inside her head,
And where she slept, they made her bed.
And she would ache for love and get
But stones.
Lordy child a good days comin',
And I'll be there to let the sun in ..

Thank you for honestly sharing your pain Lisa .. all I have to offer is caring and prayers 

 

Jerry Fletcher

2 years ago #1

Lisa, what you describe is not living. It is existing…barely. No one can long endure being the sole carer. I admire you but have not the courage to stand beside you. And so it goes.

Articles from Lisa Vanderburg

View blog
6 years ago · 3 min. reading time

Pascal Darrien · made me do it. He just doesn't know it yet. This will be my new year revelation, re ...

6 years ago · 3 min. reading time

I'm mad. Mad as all hell at Parkinson's Disease; the adversary that has usurped my husband and becom ...

5 years ago · 2 min. reading time

This is a true story told through the eyes of a child that lived most of her life in terror. This th ...

Related professionals

You may be interested in these jobs


  • KD Recruitment Hessle, United Kingdom

    · Do you have experience within Credit Control with the analytical skills to match? Have you worked within Financial Services / Insurance / Banking or another professional services sector? Are you looking to work for a well-established, growing business in the Hull area where yo ...

  • Direct apply

    Catch 22 PLC Birmingham, United Kingdom

    **Job title**: · **Facilities Team Member** · **Job type**: · - Permanent**Emp type**: · - Full-time**Industry**: · Property Management · **Salary type**: · - Annual**Salary**: · - GBP £24,000.00**Location**: · - Birmingham**Job published**: · - 18/08/2023**Job ID**: · - 46621We ...

  • Pertemps Medical Milton Keynes

    CBT Therapist

    4 weeks ago


    Pertemps Medical Milton Keynes Barking, United Kingdom Contract, Full time

    Requirements: · - Postgraduate diploma in CBT · - BABCP Accreditation · - Previous experience in Eating Disorders service · Pertemps Psychological Therapies are urgently looking to speak with an experienced CBT Therapist to support our client based in London. The postholder will ...