When Adults with ADHD Become Caregivers

“When the average ADHDer gets hit with the news that their life partner—and frequently, the point of stability in the marriage—is ill or terminally ill, more than the relationship has been threatened. Not only are we facing the loss of someone we love—and when an ADHDer loves, it goes deep—our whole stability is threatened.”

So began an e-mail from my friend Tricia, written in response to my request for advice for James, a reader of this blog. He had written to ask me how to best help care for his ill partner without letting his ADHD symptoms thwart his best intentions.  I quickly responded with my best off-the-cuff advice, but then I turned to a real expert: Tricia.

James’ was a timely e-mail, because even though Tricia’s beloved husband had just passed away, she was already turning her thoughts to this important topic:  How to help prepare the adult with ADHD who suddenly becomes the caregiver to an ill partner, a charge that can involve immense organizational skills, dealing with physicians’s sometimes prickly egos, hospital rules, conflicting advice from specialists and, oh, all the things that the partner used to do, such as bill-paying and other logistics?  Not to mention dealing with personal grief reactions and a frightfully shortening window of time together.

Stay tuned for updates on Tricia’s efforts. For now, here is James’ initial question followed by my advice and then Tricia’s.   We all welcome your comments and insights.

Hello Gina

This may seem weird but I’m not sure where else to turn. I am a 42 year old male with ADHD. My wife was recently diagnosed with multiple sclerosis and I feel as though at times I could handle things in a more mature manner but I know I don’t. I want to be as supportive and helpful to her as possible and be less self absorbed. I’ve thought maybe a therapist can help me with some of this but I know a lot of my behavior is ADHD related.

I love your book. At first, reading it hit me like a brick because I never was aware of how having ADHD affected those closest to me. I used to see my ADHD as a gift until I saw a lecture by Russell Barkley that stated otherwise. Any suggestions or ideas you have would be greatly appreciated

Thank You

James

Gina’s response:

Dear James,

I’m sorry to hear about your wife’s diagnosis but am touched by your desire to be helpful to her.

I know what you’re asking but first please indulge me in other info that might be helpful.

Vitamin D and M.S.

One thing I’ve learned in years of toiling in the ADHD trenches, where so many physical conditions are co-existing (hypertension, diabetes, etc.):   Always rule out other, simpler causes of conditions.  Sometimes the physicians just aren’t as smart as we’d like them to be.

I’ve read quite a bit about m.s. and know that sometimes it can be misdiagnosed.  I see that you live pretty far up north, for example, so  I hope you can encourage your wife to get her Vitamin D levels checked and consider supplements (capsules) or even a sun lamp in winter.  The wonderful thing about Vitamin D deficiency is that it is easy/cheap to detect and easy/cheap to rectify.

http://www.webmd.com/multiple-sclerosis/news/20090428/high-doses-vitamin-d-cut-ms-relapses

Here’s the non-profit Vitamin D council’s website page on ms and Vitamin D deficiency:

http://www.vitamindcouncil.org/researchMS.shtml

Now for your question.  Here’s my best ideas for now:

1. Optimize your medical treatment and health habits

The main thing is to optimize your medical treatment as much as possible for as many hours as possible.    If you have my book, re-read those chapters on medication.   Ask your doctor for extra help, explaining that you really need to step up your game due to your wife’s illness (but also for yourself!).

That also means eating a good diet, cutting out the caffeine, and getting regular sleep and exercise.   So many of the poor lifestyle habits that people with late-diagnosis ADHD have developed can intensify their symptoms.

2. Start with the two most helpful things she would like you to do

Ask your wife to name the TWO top things that you could do that would help her the most.

Focus on just those two and master them. Then, with that confidence under your belt in a few weeks, may focus on adding another one. This might be more realistic than somehow, overnight, turning yourself into Florence Nightengale. Talk about mind-numbing pressure!

Putting myself in her shoes, I imagine having these few things she can rely upon would ease her stress (and yours) and give you both some optimism.

3. Externalize your “cues” as much as possible.

Remember to “externalize” support as much as possible. That  means writing things down, posting notes or even big signs on the wall to remind you of whatever it is she’d like for you to help with.

This is what Dr. Barkley  emphasizes  in his new book , Taking Charge of Adult ADHD: EXTERNALIZING.  Don’t try to keep too much in your head at once.  Don’t count on remembering it. Put it into physical form, in an obvious place where you can’t help but notice it.

For example, your wife asks for you to keep the kitchen clean.  Write a big sign with a checklist of what “keeping the kitchen” means — e.g. wash dishes, empty dishwasher, wipe counters.     Don’t rely on remembering it.

That’s just an example. You might have an easy time in the kitchen.   And please know I am not condescending to you.   Year ago, I finally learned that my husband really could not remember how to load the dishwasher when it was empty — what went where????  So, I posted a photo of the full dishwasher!  He got it!  And he’s a PhD scientist — no dummy!  :-)

I hope this helps!

g

Tricia’s response:

Whooo boy!

When the average ADHDer gets hit with the news that their life partner—and frequently, the point of stability in the marriage— is ill or terminally ill, more than the relationship has been threatened.  Not only are we facing the loss of someone we love—and when an ADHDer loves, it goes DEEP—our whole stability is threatened.

In order to understand this, we have to recognize it and talk it through.  And oddly, a therapist isn’t the best person for this job—unless they understand the dynamic of the ADHD/non-ADHD relationship.

Here’s the twist:  Very often, the ADHDer/non-ADHDer don’t recognize that this particular interdependency has developed.

ADHD isn’t a gift.  I will NEVER be heard to say it’s a gift.  But it CAN be an asset, depending on the
ADHDer’s particular idiosyncrasies.  In my case, I became more aware of current thinking in the oncologic community around treatment than did Mike’s oncologist, who frequently berated me for “reading the Internet”.  I frequently berated him for not being aware of the content of the medical journals he subscribed to.  Because I was aware of current trending, I quizzed him with a blowtorch every time I saw him.

When we fired him in August, he didn’t question it at all.  He knew that being in the same room with me would not end well.

I can still recite in excruciating detail the entirety of Mike’s medical record, down to the color of socks a particular doctor was wearing on any given day.  I can tell you what chemo he received, what the infusion rate was, and what additional medications he received.  I can tell you the exact day that he began to experience peripheral neuropathy and the second I knew he was cognitively impaired beyond “chemo brain”.  My sister swears this is akin to a savant talent.  I don’t think so.  When you have an ADHDers attention, you usually have ALL their attention.

Tenacity becomes a requirement (as you well know) when dealing with any doctor or medical group. The fact that I can make a pit bull look like a shirker was a real help as we wended our way through the oncological maze.

The ability to tune out ridiculous idiots is essential for maintaining one’s sanity.

In short, James simply needs to “play to his strengths” and recognize that he can truly be a key player in his wife’s treatment.  That alone will help to level the playing field and keep him from feeling like he is constantly grasping for a lifeline.  It will also help him to see in a concrete manner what he is bringing to the table.  I was lucky.  When Mike was first given the news about his cancer and where we realistically were, he took my hand and said, “It’s you and me, Babe.  We’ll do this as a team.”  We did.

I KNEW there was a need to speak to the ADHD caregiver!

(((hugs)))
Tricia

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