What happens when an adult with ADHD 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 hangs in the balance. 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, who has ADHD and speaks from first-hand experience. She responded to my request for advice on this topic. James, an ADHD Roller Coaster blog reader, had 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 Tricia for in-the-trenches expertise.
James’ was a timely e-mail. 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. We might seldom think about it. But this can mark a dramatic shift.
Think about al that it involves — immense organizational skills but also dealing with conflicting advice from multiple physicians, hospital rules, following care instructions once back home…. Oh, and all the things that the ill 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.
ADHD Partner James Asks Gina For Advice
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 Responds to James
I do my best to be helpful. (Remember, this was in 2010! I’ve learned a lot more since then but I still find this sound advice!)
Dear James,
I’m sorry to hear about your wife’s diagnosis but am touched by your desire to be helpful to her.
As to 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, maybe focus on adding another one. This might be more realistic than somehow, overnight, turning yourself into Florence Nightingale. 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
ADHD Partner Tricia Responds to James
Tricia took a different tack in responding to James:
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
- Tell you what chemo he received, what the infusion rate was, and what additional medications he received.
- Recall 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 ADHDer’s 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
Have you been in this situation? Do you have advice and insights to offer others? Please share.
—Gina Pera
I was diagnosed with Severe Adult Adhd about 10 years ago not long after getting married a 2nd time. My darling husband was diagnosed with asbestos on his lungs & went downhill last year which was really tough as in Spain, Family are in Australia. W tried to stay positive & laughed a lot. He died in a hospice with me by his side January 9th 2022.. I have moved to a new area . I miss him heaps but know that he is asleep in death awaiting a resurrection back on earth soon xo
Dear Kris,
And all that happened during COVID. Please accept my condolences and best wishes for these next chapters of your life.
Thanks for your comment.
Gina
My husband has ALS. I have ADHD that has recently gotten much worse since his diagnosis and the birth of our daughter – both 3yrars ago. The number of tiny constant tasks I need to remember are completely impossible for me. He is physically and emotionally suffering all the time directly related to me spacing out or forgetting something he needs. He doesn’t believe that ADHD is the problem. He tells me all the time that I am just a bad person and to stop using ADHD as an excuse. I haven’t been properly treated yet (hope to very soon) but in the meantime we are kryptonite to eachother – my ADHD induced stress makes his symptoms worse and his constant criticism makes my ADHD worse. What’s one thing I could share with him to read or listen to that might impact his thinking?
Hi Molly,
I sympathize with your situation. Having a husband with ALS and a three-year-old would be difficult for the most “organized mind.”
I believe it behooves you to maximize ADHD strategies, now. That means optimizing medication treatment and organizational strategies.
Primarily, this will help YOU, in helping you better manage your life and emotions, in giving your husband less fodder for criticism, and perhaps most of all, once symptoms start improving, that will be the biggest piece of evidence your husband could ever have that ADHD is real.
You are the one who must break this logjam, imho. Your husband is dealing with an extremely serious neuro-degenerative disease for which, last I checked, there’s little in the way of treatment.
For your welfare and the welfare of your child, at the very least, you owe it to yourself to address your ADHD challenges. That is something you can control. That is what will help you day in day out, over many years.
Good luck,
Gina
Wow…I’m amazed…
Why?
I was finally diagnosed with ADD, after being treated for clinical depression (Dysthimia, with some narcisstic & OCD tendencies”) since I was 15. I am now 40.
In my early 20s, a psychiatrist who jumped on the Prozac bandwagon did the only helpful thing he had done ever.
Life changed, I felt “normal” for the first time since age 11 was able to organize things without thinking SO hard about each and every item…It was utterly heavenly…I finally felt I could realize my dreams, I only had to work at accomplishing them. All was great.
But that only lasted for about 8 months or so, then slowly started to decline…and with it, my organization, life, relationship, business, etc.
It was initially my own persistance last year, and through internet research I figured it out myself, and finally a local heath unit nurse referred me to a Psychiatrist, who after doing his tests agreed fully with the diagnosis I had arrived at, and Ritalin was perscribed.
Still working on it, and am now taking Methylphenidate, which has allowed me to see that I no longer have to just “cope.” I am self employed in a business in which I NEED to be highly organized, dealing with lots of, and aquiring lots of, “stuff”.
There were periods of times were I was very organized, but, as anyone who knows ADD, it always seems to fall apart at some juncture. Organization for me = making good money, paying bills…until the decline of the ability to stay organized. I know I am very good at what I do, but the ADD and the results make me question that all too often, and, well, the self-esteem has taken lots of blows though the years.
The other amazing thing was reading the letter from James, it was like I had written it, except that it has never been a “gift” as far as I am concerned. (I love being well organized…but I am rarely ever organized.)
My wife was also diagnosed with MS about a year or so ago, and we were also only just married a year prior to that. It has been a struggle, and still is. I am hoping that applying the suggestions I have seen here, etc, that things will get better. I can see a discussion between the wife and I about the whole thing, coming up in the future.
I/we are a work in progress….!
Several thoughts on this. Gina, as also the youngest in my family, the prize now is to send them cards on their birthdays and say, “I am STILL younger.”
As for cognitive dependency, I find myself reading those accounts with a painful envy. Some of us, with ADD, are still the one on whom other family members depend, cognitively and otherwise. It would be so swell to be able to hand the organizational reins to someone else. It would be a relief. I believe I am going to have to be a widow in an empty nest to ever be able to get an actual handle on my life again.
Lastly, I took care of my aging/dying mother for something over three years. It was emotionally hard but cognitively not hard. As Tricia said, if one can focus, one can FOCUS. Some of us are inattentive; others of us are hyperattentive. Since my cognitive filter is inferior, I notice everything (whether I wish to, or not). I was able to discern subtle changes in my mother’s condition and I was always more accurate at their interpretation than anyone else in her sphere. Exquisite sensitivity can be a handicap, but in this situation it was useful. However, I was so much more aware of the emotional implications to her, for example, of nurses wading into her room without an introduction (she could hardly see), that I was in pain myself a lot of the time.
The management might have been the least of it. It was during that time, though, that the extraordinary demands of my life overwhelmed my capacity to compensate for faulty brain function, and I was finally diagnosed with ADD.
Lisa, I am so sorry that you had that experience. You’re right- ADHD doesn’t make you incapable or incompetent.
My guess is that sibling never questioned their own pre-conceived ideas. Perhaps, it would be a good idea to sit down with that family member and have the conversation about what your abilities ARE.
My bi-polar sister isn’t capable of living on her own. But she manages my father with Alzheimer’s like nothing I have ever seen. Anyone calling her incapable solely because of her BPD is opening the door for a spirited rebuttal, I can tell you.
I won’t promise you will change that sibling’s mind. I do think that you will feel better for having the conversation, and just possibly, they might think twice before deciding that you CAN’T do something just because of the ADHD.
Thank you James.
I would bet that you have a greater ability to be a strong partner in your wife’s care than you give yourself credit for. Even you said that you have buried your strengths for so long that you no longer know what they are. There is a whole lot of truth there.
Mike did something that I didn’t understand the value of until later. He simply assumed that I would be able to manage. Don’t get me wrong- he knew better than to hand me responsibility for our financial life, but the things that he needed from me, he simply *assumed* I would handle. He would tell me frequently- especially when I was in frustration melt-down- “But Sweetheart, I know you can do this. You’re already doing it. You’re doing a fine job.”
There is a certain power that comes from having someone believe in you- and tell you about it. I don’t know that I can say precisely what it is, I just know that hearing his confidence made ME more confident. Today, that is something I treasure.
Gina is absolutely spot on. Yes, you need to talk about how you FEEL. But you also need to reach out for the practical help you need too.
When I could see that we were going to be engaging Hospice sooner than later, I reached out to a terribly organized neighbor and asked for help. Partly because I knew that she wouldn’t drop it until I finished- at least enough that we could easily set up care for him downstairs. Because we didn’t use it often, our living/dining room had become a dumping ground. It needed to be cleared and quickly.
Four hours later with this wonderful lady, and I had space. Was it perfect? Nope. That wasn’t the look we were going for. She left me organized enough that I could pick at the task as I had time. THAT alone was a great gift.
From my perspective, you need to figure out WHAT you need to do. What are the practical things? Is it taking on a household chore or taking on organizing her medical file or stepping in to make meals? Sit down together and figure out what the practicals are.
From the emotional side, start having conversations that are necessary. Get in the habit of it. Share a box of Kleenex and talk about it. You have ADHD and some of those conversations are going to really challenge your attention. I had them with a bean bag in my lap. Whatever works for you to enable you to be present.
What I learned was that I was a whole lot more capable than I gave myself credit for. I am going to bet that you have a similar experience.
My mom was in a position where she needed a caregiver for about 6 months. We happen to be very close, so I just assumed I’d be her caregiver, but that’s not what happened.
Basically, another sibling immediately took over the job as my mom’s caregiver because they thought I was incapable of doing the job. “If you can’t even hold a job, how can you take care of someone else?” “If you’re not even living on my own, how can you take care of someone else?” “If you can’t make ‘adult’ decisions, how can you take care of someone else?” The list goes on.
I do understand on a certain level why my sibling did what they did, but I do resent the way I was treated. Having ADHD does not make one a child, though sometimes my decision-making skills might have made people question that. It does not make one incapable, either.
I’ve been receiving treatment (medication and therapy/coaching) and my ADHD has improved significantly. I hope that through ADHD education and advocacy people will not be so naive as my sibling.
Hi Lisa,
Thanks for sharing your story.
I’m sorry to hear that your siblings weren’t as kind as they could have been.
What I’ve found in my life is that, if you aren’t in close contact with siblings, they tend to pigeonhole you based on past behavior (when you were in close contact). Being the baby of 7 children, I think I will always be seen as the baby – even when I’m 70. 😉
Gina
Amazing post. I should point out that I’m at work so I haven’t had a chance to read the whole thing.Oddly my wife was just put on high doses of vitamin D. I am still planning on seeing a therapist who handles ADHD because I need to learn coping tools.I also need to learn what my strengths are because I have buried them for so long from being criticized for the way I am.I’m at work so I haven’t had a chance to read the whole post
Thank you everyone for your time with this and Tricia I am sorry for your loss
James
Hi James,
I’m glad to hear about the Vitamin D. If your wife is low, maybe you should get tested, too. Vit D deficiency can affect mood, brain function, etc. My husband grew up in Canada, and when he was finally tested, his level was 17!!! Far below the desired average of 50 or more.
As for therapy, one leading ADHD expert, psychologist Kathleen Nadeau, says that the way for people with ADHD to build self-esteem is to have success.
It might be that, instead of therapy, you could start with a professional organizer who understands ADHD. Then you could get help with practical systems that support you.
My point is that sometimes “talking” about the issues must be accompanied by practical support in one’s daily life (with keeping track of time, getting organized, following routines, etc.)
g
The course of my life made me a caregiver, long before I knew of my ADHD. As a woman, it’s not as noted, I was weird, besides.
My magnificent husband, was very late diagnosed with P.P. Multiple Sclerosis. This is being found more common in the military medical personnel, during our Gulf history. His diagnosis came nearly 2 years after our Daughter was born.
He masked his troubles, in early years with diet. Once the diagnosis was made, we recognized nearly 18 years of evidence. DMT, is in place now, but it could have helped so much more, with an earlier placement.
Here I am, even more in love than ever. I try to let him keep his daily energy for his own projects. A shower taking most of the precious ‘spoons’ of energy. I have never been a manager, and he has never wanted help- so we keep on as best we can, worry about our daughter, too.
My heart goes out to James. I have no wisdom for certain- but I know how it feels when facts go forgotten by loved ones. How quiet and kind you have to keep when everyone wants to boost their immune system with all the newest nutrients and tonics.
I see it as love, but keeping hope isn’t something that makes a lot of sense. Get well cards aren’t kind to us. Meant well, self- care urgings come to me even with pain. I have aged decades and my daughter is only 5. Blessings to the carers, and to their loved one, often uneasy with trust. So much is being learned lately about all autoimmune. I pray some special brain can make sense of it all. Isn’t that why our brains are all so different? ().
Dear Jacky,
I feel for you both. These chronic illnesses can be so devastating, in every way.
You say you “have no wisdom for certain” but you seem very wise to me—and very loving.
I can only imagine what it’s like to get all the free advice about supplements, etc……people with ADHD get that a lot, too.
And yes, being told to “take care of yourself” when you are mustering all your energy to keep daughter and husband afloat must feel cruel at times. Even if not intended.
I know some very special brains are working on these diseases. My husband is one of them, with cancer.
I wish the best for you and your family.
thanks,
g
Thank you Dr Parker!
I am a layperson despite some nursing experience many years ago. ER. Who knew?
When Mike was first diagnosed, I looked EVERYWHERE and couldn’t find one single thing that spoke to the challenges of ADHD and (a) primary caregiving and (b) all the mass of *stuff* I was going through.
It wasn’t enough that I was facing the loss of my best friend, companion, lover, spouse. I was also losing the person who had made it possible for me to look functional- even on my worst days. I was losing the person who allowed me to play to my own strengths while he took care of things that baffle me… like finances and getting places on time. He was my rock, my rudder.
In the weeks that he has been gone, I KNOW instinctively that, while I might have something of a handle on this, I have places where I have totally lost the plot. How many people look at a checkbook and burst into tears?
Part of that is normal grieving. Not all of it.
The difficulty is that NO ONE talks about this. I personally own some fifty or sixty books about ADHD. NOT ONE tells me a darned thing about how to manage what you refer to as ‘Cognitive Dependency”. (I just knew there was a name for it!)
The killer is that this is something that no one knows anything about or is not comfortable in discussing.
We need information. More, better information.
I was diagnosed with ADHD in 1967. There has not been a time in my life when I didn’t know I had it. I was re-diagnosed in 2003. Yep, still there, right where I left it. I was born at the tail of the baby boom. My peers- all those Boomers are aging. If the statistics are correct, around 5% have ADHD.
The discussion of ADHD and the way we experience grief, loss, AND being a primary caregiver needs to start BEFORE we discover that we’ve missed something.
I’ll put the soapbox away now…
Stay on your soapbox, Tricia! It’s an important one.
It’s actually an issue I’ve been advocating about for many years, though indirectly.
Tricia, you and Mike were obviously blessed to have each other. And I’m sure you “compensated” for him in many ways, too. 🙂
But I often think about those people with ADHD who are trapped in unhappy or even abusive relationships because they depend on their mates for life’s logistics.
When my husband was first diagnosed, in 1999, the clinic said, “We usually suggest that our patients with ADHD have partners who are well-organized and supportive.”
First, I was gobsmacked. They were saying that I was part of his treatment, that I had to keep doing all the “hard tedious stuff” for him, even as he thwarted my best efforts right and left? Didn’t they know I was flat-out exhausted and my brain barely chugging along?
Next, I was dumbfounded. That’s the best they can do for their patients with ADHD? What about single people not yet in a relationship? That should be part of their relationship goal: finding someone to compensate for their unaddressed ADHD challenges? As if it’s not hard enough to find a compatible mate, they want to start off a relationship on that litmus test and unequal footing?
And what if their love object has ADHD, too? Or did the clinic offer a dating service, matching organized types with their ADHD clients? Maybe there was even insurance reimbursement. 😉
It made no sense to me. And I can assure you, that clinic giving my husband Adderall and platitudes was nothing short of a disaster. So it’s not like they weren’t actually looking to me to do all the heavy lifting.
For everyone’s sake, but especially the person with ADHD, the treatment goal should be optimizing function, in my humble opinion. Good treatment gives the person with ADHD the ability to choose a mate, choose a job, choose a vocation based on their fullest capacity, not based on challenges that might very well respond to treatment (if only it were better treatment).
OF COURSE, the partners of adults with ADHD must “get it” and try to meet their partners halfway. Of course, tasks and responsibilities can be divvied up with each person’s strengths/weaknesses in mind. But, to my mind, when a clinician or coach encourages this kind of dependency, it’s a diversion from the client noticing that they are not getting the kind of treatment they deserve.
talk about soapboxes……see what a complex issue you’ve presented us with, Tricia? 😉
g,
At the risk of sounding way too ‘big picture’ when the issues are so personal: Tricia almost said it and it does need saying a bit more explicitly, so that those with ADHD can conceptualize what they are up against with tragedy like this – think of “Cognitive Dependency” as separate from emotional dependency associated with grief and loss.
Recovery from cognitive dependency, as you are discussing so explicitly, takes a somewhat different turn, and if understood, can help manage the emotional pain of the potential or real loss because they are really two different challenges with different recovery activities.
Grief is more psychological with feelings and mental tricks that occur over time that can ultimately find resolution through understanding grief stages. Many I see who suffer the loss in childhood of an “Executive function” parent have the hardest time recovering from that loss because they didn’t recognize their own executive function/ADHD issues in the first place.
If your PFC is lost and you don’t know that you have skills and interventions to recover from that loss you can feel seriously handicapped on a functional level for a lifetime. The loss is even more personal because of the feeling of deep insufficiency that arises form the cognitive changes that take place.
The good news: with modern insights and treatment strategies that include a full range of balanced interventions the PFC can come back, and the handicap, previously unrecognized, can be significantly corrected.
cp
Thanks so much, Dr. Parker, for your perspective. Your depth and breadth of knowledge and empathy, not to mention your generosity in sharing, never cease to amaze me…..
g