Ask BR: How Can I Mentally Prepare To Become My Wife’s Primary Caregiver After Her Neurodegenerative Disease Diagnosis?

Dear Belleruth,

Your cancer treatment CDs were given to me eight years ago when I was undergoing chemotherapy. It took many times listening to it before the stars aligned and the desired effect occurred, releasing any concerns I had about the process. I purchased several other titles after that.

Now, I have a different life milestone to face.

I always figured that my health issues would result in me predeceasing my wife.

She was recently diagnosed with ALS. It hasn't been noticeably interfering with her speech, breathing or swallowing, but I need to be prepared to provide the support she needs as her physical abilities and overall health decline and she proceeds into the death process. The ALS has been slow enough that it took a year to decline enough to be a firm diagnosis, so we probably have 3 to 7 more years together. But I need to be toughened up so that I can be more comfortable with my new role as caregiver.

I scanned the audio library and didn't see an offering that looked directly on point.

What would you suggest to help program my subconscious and prepare me to keep my emotions in check so that I can provide the emotional and physical support she will need as she continues to lose her physical abilities, becomes helpless and eventually dies?

Thanks,
Daniel

Hi Daniel, 

I’m sorry you and your wife have to deal with this challenging neurodegenerative illness, and I salute your proactive desire to do whatever you can to prepare for what lies ahead.

You’re right that we don’t have anything in our library that precisely addresses this. Of course, any kind of mindfulness practice would help – it’s a brilliant way to deal with suffering. Because the solution is not so much to “toughen up”, but to stay present and observe your experience without judgment, which results in keeping your heart open to whatever extent you can. (It’s actually an effective anti-burnout strategy.)

So really, any of our mindfulness practices will be a help. You might want to listen to one of Bodhipaksa’s superb meditations to see how his voice and manner affect you. I’d start with Harnessing the Power of Kindness.

And toward the end of her life I would suggest the two of you listening together to our Hospice and Palliative Care imagery.

I also think that the last track of the Successful Relationships imagery could be a real resource during this time. These are the paired exercises, where you take turns sitting one behind the other, both facing in the same direction. The person in the back focuses on a tender, vulnerable spot on their partner’s back (like the hollow in the back of the neck), and just opens their heart to feelings of lovingkindness for that spot they’re meditating on, then places a hand on the back of the person and imagines that the warmth gathering in the heart is moving up into the shoulder, down the arm to the hand and into the back of their partner. It may sound hokey, but as people follow this imagery their hands become very warm (hot, even) and both participants become infused with a feeling of loving kindness and connection. (I’ve done this in large workshops and seminars and it almost never fails. It delivers a sense of calm but inspired uplift, and I can see this doing you both a lot of good – for people who have difficulty breathing, this can be as soothing and calming as breathwork). 

This also reminds me to mention something I hear a lot from people, and certainly know from my own experience… that one good thing about knowing what’s ahead is that often it inspires the most wonderful, memorable, heartfelt, loving conversations, reflections, and shared moments, as well as opportunities for planning, learning what your spouse wants in terms of quality of life, DNR or ‘do not resuscitate’ orders, maybe even whom she wants to speak at her funeral, or her wishes for you or your children after she’s gone – all of which will be a comfort. So do use the time you have – and you should have plenty – to gain clarity on issues important to you both.

I hope you’ll avail yourself of the services of visiting nurses, home health care, social workers, physical & occupational therapists and hospice workers to help you with the technical, logistical, equipment, and medical issues that will come up at different stages of his care.

I also think it would be good if you could find a safe space to talk about yourself and what you’re going through, and what you can expect next - whether that’s a close friend, a pastor, an ALS support group, a counselor, a virtual chat room – or all of the above! – but someplace you just can be yourself, tell the truth, and share what this is doing to you.

Because, make no mistake: dealing with the helplessness of watching the suffering of anyone, let alone someone you dearly love, is brutal, and you won’t always look like the perfect, loving hero in a Hallmark Story of the Week.  ALS is relentless, exhausting, frustrating, scary and heartbreaking, and at times you’ll probably get angry, shut down, self-pitying, scared, ready to throw in the towel and/or run away from home. Expect it and have someone ready to remind you that of course you feel that way, you’re human, and to please cut yourself some slack.

All best,

Belleruth