Monday, August 27, 2012

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.)


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.


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 or Living With Trigeminal Neuralgia site They are excellent resources for anyone wanting to find out more about this horrendous condition.

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  1. What a nightmare. It would be interesting to read a n article about what to do when the caregiving comes to an end. Maybe you should write it? Obviously it is different depending on the reason.

    1. Yes it was a nightmare which at times, did not seem to have an endpoint. Thankfully a year on we are in a much better place. I agree the next step for a caregiver without a job would be a good topic. When I've worked it out I'll be able to write about it!

  2. Gilly, it sounds like a nightmare of a journey for you and your family. My pain, thankfully, is nothing like Jonny's. I have constant bad pain, but not many of the lightening bolt shocks as he had. So your job as a carer must have been horrendous, but I am sure you coped with it well, and gave him love and care he needed. When I go through particularly bad spells, I don't envy my husband. He would do anything to take that pain away, but knows that nothing really does.
    I always say that Ian suffers from my pain as much as me. I'm sure your husband would say the same about you.
    Gilly, I think you could write your own "caregiver's guidebook", but I don't think you would be including leisure time to paint. I think any free time you had, you must have been so exhausted, I think painting would have been the last thing on your mind. You used the exact words that I would use....follow your instincts. They are nearly always correct. And to try to remember that as well as carer, you are still the person's husband/wife/sister/daughter etc. Pain takes away so many things, but try not to let it take that initial relationship away.
    I better stop....think I'm starting to ramble a bit.

  3. Liz, I am glad that you do not have the pain I have described in this post. However I have also seen firsthand how debilitating and exhausting constant pain is; to have and to watch.

    I think you are right about not having time to paint! To be fair some of the tips were obviously more applicable long term caregivers and those looking after loved ones with Alzheimers. In those situations I think carving out time, hobbies, interests and respite is very important and perhaps more realistic as a new routine sets in.We never got to that routine point and with kids at home any time I had I tried to give to them.

    I agree that remembering you are a spouse as well as caregiver is really important. I think it's hard with a spouse because the balance of responsibility shifts when you take on the caregiving role and the person you would normally discuss issues with,is not necessarily in a position to partner with you in the same way.

    Thanks for all your thoughts and ideas.Definitely a lot to think about.