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AVM Survivors Network

More on the topic of needing help and actually getting it

#1

So, I want to get input from the individual and collective wisdom of the group. This follows up on the post that Merl wrote and the one that I wrote about how I suck at asking for help let alone even admitting that I need it.

A couple of thoughts - to me there are two different types of help - professional and personal. I have no problem asking for professional help - Doctor, PA, RN, PT, SLP, psychiatrist, Counselor - they are in the business of helping, so I have no issue telling them, “this is what is happening and I need help with that.”

It’s the personal ones that I have more of a problem. Asking my 17 year old to do something because I can’t. Not getting everything done that my wife wanted because my headaches and brain fog were too bad that day. Those type of things. That’s where the problem lies.

So here’s an idea I want input on from you all before I approach my better half with it. I’m thinking I want to approach her and say basically that I want to work up a great big “activities” list. All things that would need to be done at home, or running errands or whatever. Not all done today - but a collection of possible ones.

Then we’d go through that list and classify them all either as “can’t do that at all”. “Can do with help”, “can do it but it will take longer” and “can do it like normal.”

We’d go through and eventually agree with how to classify each thing. And then we’d have a working list so she knows if something she’s asking me to do is something I can do or something I can’t and if I can, do I need another set of hands with it or can I do it myself? Even simple things - like, she’ll come home from work and mention, “I switched Sunday’s shift with next Friday so I can hear Isaac’s gospel choir on Sunday.” To her, that’s enough of a “reminder” for me to change it on my calendar. It’s not.

Hopefully that would help mis communications - confusion and hurt feelings?

Tell me what you think,

Thanks!

TJ

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#2

That is pretty much what I do with my wife everything’s in a calendar on my tablet or on a list in the living room and once a week I sit down with my wife and say what do you need done tomorrow or the next few days or in the next week or sometime this month and we kind of prioritize them.
if I come across something that is going to be tricky I’ll tell her and and this one I’m going to need your help; open communication and accepting my shortcomings is a big part of getting through it… it doesn’t mean I like having to ask for help but I know if I don’t, the burden would fall completely on my wife and I’m not willing to accept that.

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#3

Hi TJ:

It’s a B---- asking for help! As much as I hate it, there are times I have to ask. It’s only me and my Husband, and he has been an absolute gem through my AVM journey. Even so, we’ve had a few disagreements, misunderstandings, mix-ups, schedule clashes, and don’t-treat-me-like-I’m-retarded moments. What gets us through is … love. If he didn’t love me and I didn’t love him, we would have left each other at the same time, on the same day, in the same car! I need him and he needs me. We also rely on calendars to keep it all straight. We review the calendar a couple times a week, because I forget sometimes. I talk to him about my strengths and weaknesses; what I can do easily; what I can do with & without his help. I learned a long time ago not to criticize him for doing things I used to do better. I hate his eggs, but I eat them. He misses spots when cleaning the bathroom, but I ain’t complaining. My meat loaf is way better than his so I gladly make it for him. Having this AVM has brought us closer than ever. Things are different for us, but we make it work because we have to. There are no close family members to call on. We have friends who would help, but we call on them sparingly, if at all. When your headaches are bad and the fog is heavy, your Brain is telling you to REST. Everything is different now and your wife & son don’t want different, they want the old TJ back. I think that your idea to talk to your wife about all the things you can and cannot do to keep the household running, is a good one. She knows that you are limited when it comes to certain things. However, remember she is scared and angry at the AVM, not angry with you. Talk to her over a dish of her favorite ice cream and you will surely have her attention. Wishing you all the best.

Sharon D…

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#4

Sorry TJ I missed this post somewhere.
AND
I must agree with you. Asking for professional help can be a little easier then personal help. My wife is amazing, how she puts up with me I’ll never know. I’ve often told her when she signed the marriage papers it was a life sentence, little did I know how true that statement was.

We used to have conversations in the morning, she’d drive out of the gate and I’d think ‘Now what was it I was supposed to do?’, I’d remember somethings (or see them and think ‘Ohh I should do that’) then she’d come home and find the primary thing she wanted done, wasn’t. DOH. I started using me work diary.

As others have stated LISTS, LISTS AND MORE LISTS. When she was working, she’d leave and I’d start trying to get everything on her list done. She’s come home and find me comatose in bed clutching my head in agony. She’d then give me the third degree about doing too much. With me, not working, being home all day, to be honest I felt pretty useless. I was trying to prove I still ‘could’, to both of us, but if I’m honest, primarily to myself. Well, I soon learnt that I couldn’t. Ouch, wasn’t that a hard pill to swallow (and some days still is). So she made the lists smaller.

Part of my problem is that I do not like leaving tasks 1/2 done. If I start I like to finish, I’ve got so many 1/2 done jobs it scary. But if I can complete the task that day, it’s all done. But if I’m 1/2 way through a task and get me a killer headache, I have to stop. I am s.l.o.w.l.y. learning this thing called ‘pacing’ (and I don’t meaning pacing back and forth LOL). I have to pace myself and OHH that is SO difficult, because it is so foreign. Using my lists again, when the task is done, I give it a tick with a tail. When the task is 1/2 done it gets 1/2 a tick, no tail. But the task has been started so I try to look at that as a bit of a win. If I’m honest again, I’m a little annoyed I hadn’t finished the whole task, but it is still on my list, so I haven’t completely failed. I do still have a bit of an issue with that, but my wife isn’t working anymore so she pulls me up if she can see I’m trying to do a bit too much. Damn gestapo LOL .

I think part of the problem for me is that whilst I’m busy, I’m OK. But when I stop the day crashes down on top of me. I can push myself all day, today. But come tomorrow if I’ve over done it, ohh nasty, nasty, nasty. I think part of my problem is can never tell when enough is enough or enough is too much. Things can fluctuate so much, so I have no level, no median to guide by and that’s hard.

I like your idea TJ. But, from a hard learnt experience, don’t over do it. If she has 3 things on her list, but you’ve only got 2 done. Be happy with it.
Sit down and have a family conversation around ‘understanding’ why Dad/husband may need a hand. Our pain, our exhaustion(both physical and mental) cannot be seen by others (I learnt to mask mine (or so I thought), she can see through my masquerades now. Damn it.) but this is where we need to learn to say ‘Help’

TJ, I found this so difficult as for me I’ve been brought up as the MAN. A man’s role is ‘strength’ I had none. A man’s role is ‘focus’, I had none. A man’s role is to do and I couldn’t. Then she’s come home and do it all herself. Which made it even worse for me. We needed to sit down and have a conversation.

Look, I won’t say it’s a prefect working model, needs constant review. But it’s better than it was and I do eventually get things done with my lists (I think :gulp:) LOL.

Merl from the Moderator Support Team

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#5

Sometimes I forget things so quickly. Like from picking up a pen to write something on a pad. My wife gets angry when I need to interrupt if something is THAT important. Other times, she’ll get off the phone and ask what I needed, I don’t recall.

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#6

I just need to shout out in support of @Sharon_A_Dawkins and Merl. I start reading Merl’s posts and, even though I can’t see who wrote it until I get to the end, I can tell!

Double :heart: to Sharon for your advice and :heart: to Merl for consistency! I love you all. amor vincit omnia.

Richard

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