Caregiving Part 2 - Who Cares For The Caregiver?

This is the second post in a caregiving series. Last week's post was called No Job Decription-Caregiving Part1:Search and Rescue



Just a few weeks ago I searched Google for  tips for caregivers. I was looking for advice about ending my caregiving role. As a caregiver suddenly out of a job (thanks to my husband's good health)  I wanted to find a way back to something for myself. When I found a list of tips, I began to chuckle. 

I laughed for two reasons.

1. It had never occurred to me to google tips for caregivers when I was one. (I didn't have the time or inclination to do that research.)

 and

2. I had failed to follow nearly all the tips that were suggested!

 Some of the  suggestions were very good. They ranged from keeping your job (I gave that up)  to getting regular health checkups yourself. From  making time to read and paint(!) to having respite care so you could take extended breaks. I found myself laughing at how many of the suggestions I had failed to heed. They also made me think about what I had done that had helped me and therefore my family, and what if anything I would do differently if G-d forbid I found myself in this situation again.

Being the caregiver for a sick adult or child is overwhelming.....particularly at the beginning and  especially when their health is deteriorating quickly.( The middle isn't so easy either!) As each plan you think  you have put in place is suddenly irrelevant, you find yourself scrambling to try to work out a new one. You feel like a juggler with too many balls in the air and not enough hands, knowledge or time to guide them.

It is not that you have no time for yourself, it's just that you do not know what time you have. 

You cannot make a schedule for someone with a sudden illness,  to work their downturns to fit in with your routine. So you try to adapt and fit in with them. As a caregiver you respond to each need, each pain, each new crisis as it happens and everything else: your own doctor's appointments, hobbies, social plans, projects, reading, gets put aside.

So although there were many things I did not do, here are some things I did and here is what I learned.

Find your strength and follow your gut

 I felt I had no choice but  to let much of my routine and needs take a back seat, particularly as our family is far flung ( living mainly in the UK and Israel) and we have school age children. As expats we do not have family close by who could be a consistent presence and  physical support for us all or provide respite for me. Jonny  therefore was depending on me alone. I found  strength in the depth of friendships I didn't know I had, to keep moving forward and a strong gut that guided me when experience was sorely lacking.

If you have (school age) children -keep them informed and involved in plans, changes and treatment.

In mid September 2011 Jonny's pain from trigeminal neuralgia was beating any attempts to control it. The children and I watched helplessly as he tried to  breathe through these attacks. They reminded me of  birthing contractions that were increasing in strength and decreasing in space, but without an endpoint. An attack would roll in like a thunder cloud, attack like a bolt of lightening and then recede seconds, or minutes before the next one. This went on hour after hour and day after day. The only things that changed were the increasing intensity, length and exhaustion.

 I tried to protect our kids from Jonny's pain. But kids are smart. They sense the unsaid and worry about the unexplained. So clarity about where Jonny was upto became a priority and we tried to keep them in the loop with the fast changing landscape.They came often to visit at the hospital when Jonny was admitted for 2 weeks. They  googled trigeminal neuralgia and watched  brain surgeries
(microvascular decompression**) on Youtube. They  felt empowered in being able to support Jonny and I within their abilities.

Use an on line community site to keep everyone updated and a schedule so that they know how they can help with meals /groceries/playdates etc.

As Jonny's health deteriorated, the concern of our family and friends all over the world,  increased. I wanted to keep everyone updated. But the onus of knowing their email addresses and making sure everyone was included, was on me. I was exhausted and overwhelmed with loving texts, calls, emails and visits and could not respond to each and every one. I also knew that brain surgery that had been set for a month later needed to be moved forward as quickly as possible. With all this in mind, two days before Jonny was admitted to hospital for pain that had spiraled  out of control, dear friends came over and helped me set up a page at Lotsahelpinghands. 

Here I could post an update of Jonny's progress and it was up to our friends to sign up to receive them. They could also leave messages for us and see a schedule of errands that we created for the months ahead. The pressure was off me and many of our wonderful communities around the world who wanted to keep in touch and  help, now had a way of doing so.

Research, Research, Research

We found reliable information on hospital websites -in the case of Trigeminal Neuralgia-Johns Hopkins, The Mayo Clinic, Seattle, National Institutes Of Health and Pittsburgh were excellent.

We read clinical studies from the USA and Japan,

We joined support groups on line. There are many people on these sites with access to resources, treatments  their stories and a huge amount of support. It's really good to know you are not alone particularly if the illness you are dealing with is not well known or easy to pronounce. Certainly it is also reassuring to interact with people who know first hand what the pain, struggles, setbacks and successes are really like.

 The reality is that although no two caregiving situations are alike, caregivers have many of the same struggles.And since often nothing seems to go according to plan, it's useful to know that following your instincts and finding a way to accept help does mean you have found ways to help yourself after all, even if you never consulted a Tips For Caregivers list. 

As for what I do next. Well that's another story entirely.

Thank you to all of you  who look out for the caregivers in your communities.

Gilly

Part 3 is here -What Does Recovery Look Like? 

Part 4 is here -Caregiver -Take a Break

*Taken from The Johns Hopkins Website

"Trigeminal Neuralgia is an extremely painful condition usually involving one side of the face. It usually occurs spontaneously. It has a characteristic feeling of “shock-like” pain which travels through the face in a matter of seconds, but can occur in a repetitive fashion. Sometimes it is triggered by specific things ,mostly it starts and stops for no reason and an episode can last from minutes to hours at any one time.
The intensity of the pain is exceptional, and it is felt to be more severe than experiencing a heart attack, passing a kidney stone, or even having a baby. There is no other pain quite like this.

Trigeminal neuralgia can be very active for a time, and then seem to disappear, sometimes for long periods, but always recurs later, often with more intensity. We also know that the most commonly accepted theory of what causes trigeminal neuralgia is vascular compression. There are blood vessels that travel with the nerve, and if they cause pressure on the nerve or irritate it, pain can occur.


**Microvascular Decompression - This is the most permanent and curative procedure that exists today for treatment of trigeminal neuralgia. It is usually offered to patients who are in reasonably good health and are not too advanced in age (70 years is a usual cut-off age). This is invasive brain surgery, and takes about four hours in the operating room under general anesthesia."

For more information  visit The Facial Pain Association website  fpa-support.ning.com or Living With Trigeminal Neuralgia site www.livingwithtn.org. They are excellent resources for anyone wanting to find out more about this horrendous condition.

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Thank you! 

 Please email me at gilly@bringingbooksofcomfort.org or leave a comment on this post below. I'd love to have your feedback. 

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