Denial.......? Fear?

[timer lady]

Thank you for listening; for the shoulder to lean on. husband & I are still sorting all this out. husband does want this done - struggles with the term "chronic" versus acute versus terminal.

He knows it's not terminal or acute; the chronic part has been long enough. For an intelligent man, he's very good a staying clueless. And I don't mean this in a mean or harsh way.

We spent time talking last night - he's pushing me to do more because of the upcoming trip to my family's house. "He" feels that if we are going to make a 300 mile trip I should be much stronger. The doctors feel it will be good for me emotionally to see my dad (whom I haven't seen in over a year) & to just get away. It will take more work to accomodate various issues but it will be a good boost to my well being.

husband disagrees. Unless I'm totally mended we shouldn't be going anywhere.

And - he wants to fix this & can't. He feels helpless, scared.

Thank you again - I'm going to save this thread for myself & share it with husband when I feel he's ready.

 

[Wiped Out]

Linda,
Sorry I'm getting in late on this. I'm sorry husband is struggling and that it is causing you added stress. I do think if at all possible a visit to your dad's would be great for you-I know how close you are. Gentle hugs.

 

[Marguerite]

Linda, I have a message for husband (you too, a bit, but I think you already know this) -

When somebody becomes ill, they tend to go into 'illness' mode. They rest, take it easy. They wait to get well. Life is on hold.

As time goes on, life passes by. The person who is ill has a choice - to stay in 'illness' mode, or to try to do what they can within their limitations. This is a steep learning curve because it is at this stage that the person makes mistakes. In trying to get on with life, you can sometimes do too much, by telling yourself, "I'm not going to make ANY allowances for this rotten disability which is interfering with my life."
And the person crashes due to failing to adapt appropriately.

If you get this far and are still willing to try, you begin to adapt. But adapting means making SOME allowances, but still not letting the disability control your life. It requires balance. With time you become better at it.

The patient's family often gets stuck at 'illness' mode, insisting that if they only do all the things we should do when acutely ill, we will get better. "You're doing to much, we have to take it easy, no wonder you're ill it's self-inflicted."
Or they go into denial - "You've been lying around for months, you aren't getting better and we ALL know that if you were really ill then a good rest and a few weeks would make all the difference; so there probably is nothing wrong with you, never has been, but laziness."
Or they oscillate between the two.

When loved ones are over-protective I think they are trying to send a message of "I care about you, I'm scared for you, I want things back the way they were before."

But life has changed. While we've been ill, life has moved on.

It comes back to our choice - to stay in 'illness' mode until we get better, or to "take up your bed and walk".

My choice - to live as much as I can, as best as I can, within my new limitations. husband has had to learn to accept this. difficult child 1 calls it "Black Knight Syndrome" from "Monty Python and the Holy Grail" - the scene where the Black Knight challenges Arthur to a duel and Arthur keeps chopping off the Black Knight's limbs.
" 'Tis but a mere scratch - fight on!" he says, bleeding profusely from a severed arm.
By the time Arthur is finished with him, the Black Knight has lost all his limbs and is screaming after a departing Arthur, "Come back here! Don't run away! You coward! Come back here, I'll BITE you to death!"

It's not really like that in my head, I do rest when I need to. I've learned to pace myself. husband has learned to not help me up if I fall.

A helping hand is all very well, but it's nowhere near as steady as a wall or a chair. When a doctor examines me and then tries to help me up, I have to tell him not to. I have my own methods which work for me - a helping hand is hard for me to use properly, it wobbles ever so slightly.

Linda, husband has to know that you are the one in your body, you are the one who has to make the decisions balancing your emotional needs with your physical limitations. If you do this trip it will be tiring. You will need to rest more for a while. But if you do not do this trip (and are therefore more rested physically) how much will you regret emotionally, and perhaps blame husband if you missed your last chance to visit with your father?

If/when you suffer the physical consequences of the trip, husband is going to need to do more to help you. At some level he is afraid of this and also resenting it. He probably feels a bit guilty about it, but he is within his rights to feel this way. The anger shouldn't be directed at you, though, but at Life. It happens. We have to live it anyway.

It's very hard for our husbands to watch us pushing ourselves too hard, knowing we will be suffering for our actions. It's even harder for them to let us do it. But it has to be left to us to make the decisions - our brains are still functioning well enough to at least do this much!

I know my husband is going to see this. He may even post in his own right, his point of view on this. I think that would also be useful for your husband.

Hang in there. I think your husband is just being himself - a bloke who cares about you very much and is worried. He has to learn to step back and let you try.

Marg

 

[Jena]

hi

i just wanted to offer you a hug as well and to say that yes it does sound like complete frustration on his part. also because he loves you he wants you well and is afraid that your not there yet. we all have to vent sometimes and remember we always unfortunately hurt the ones we love the most.

and yes he does care, if he did not care and love you he would not get so irritated and upset by it all.

it can be so hard sometimes i know listening to others thoughts on your behaviors or progress or lack thereof and you seeing it totally different. just be patient with him and yourself if you can.......

hugs to you

Jenn

 

[dreamer]

I am not sure if I said this. I know when I was starting to feel better, it occured to me, I was getting all kinds of "advice" on what would be "best for me" It was horrible, to me. I then began to wonder if difficult child felt that way about all the input SHE always had with HER issues?
Something else I noticed was that my family and the people around me seemed to think I was still going to demand everything be done the exact same way to the same standards I always did things. They were resistant to helping with things becuz they kept thinking they would not do them to my previous standards and satisfaction.....and they alsokept thinking I was going to wake up one morning and do everything magically, with no difficulty. BUT I KNEW I could no longer DO everything. There was simply NO WAY. So- they had no idea how our new ways were going to be, actually, neither did I. But this kept them nervous and off kilter and unsure. Pre illness I could be superwoman and post illness, I was not. Pre illness I yelled a LOT and demanded perfection in everyhting. Dureing recovery, I began to see we were all going to be miserable if I was angry when they did not help as much as I thought they should or do things they way I always did them. We were all going to be miserable if I did not understand that some things did not mean the same to them, and I could use my energies being frustrated and angry, or I could learn to accept the help they could give, at the level they could give it, the way THEY did things. Since I could not do everything, they did do somethings, and in order to encourage them to do more....I had to learn to accept such things as how they put the dishes in the cabinets, how they made hamburgers, rather than trying to get them to do those things MY way. easy child would get the mail in, eventually, maybe not as soon as it came like I used to do, - it might now be after she took her shower for work. difficult child might not put a load of wa sh in at bedtime like I used to- she might put it in in the morning. I always made spaghetti on Tuesday, but now someetimes the kids make dinner and sometimes we have Omlets on Tuesday. Whether that is how I would do things, I had to learn that it is OK.
If I do something and over do things, we are now adjusted to the idea that I might be pretty useless the next day. It does not mean I do not DO those things, it just means we assess things and figure out if it is going to work out if I AM not productive for a bit after.
I had to learn to pace myself, and make allowances and settle in to this new way things are. husband and kids may not like it so much, becuz they were used to me doing EVERYTHING, but as they began to see that this is how it now must be, they have gradually learned to cope. We call it our "New Normal" and that way it kinda no longer seems so scary. Or something.

 

[timer lady]

One of my biggest fears has been falling into the "sick role". Marg, you make very valid points. It's been a balancing act here since last July - too many changes to quickly; then no changes at all. A waiting game - tension over who is to do what & why.

husband & I had a long conversation tonight & I expect as long as we continue to communicate life will be at the very least tolerable. I don't want resentment on the part of either of us. I don't want comparisons. I don't care how the dishes get put away - if I can't do it today & husband does I appreciate it.

And husband is frightened. Frustrated. We're to be celebrating our 20th this coming September & he'd been looking forward to some kind of getaway. The 2 of us alone. It's a ways off - we still have the Mayo appointment.

dreamer, valid points in the art of flexibility. I know that I've had to really learn that with the tweedles; now more so in the running of my household & especially when asking for help in running the household. A dish out of place will not make or break us. A pizza ordered in versus a home cooked meal - again the same.

'To all the prayers & hugs thank you. I expect a bumpy ride for the next couple of months, at the very least.

 

[Marguerite]

Linda - for your anniversary celebration, just put a bookmark in the away trip. We've had to do that a lot. In the meantime, do something quiet and gentle, just for you two. There have been times when husband & I took a very tranquil and informal approach - I remember my birthday a few weeks after easy child was born, we had planned to go out to a fireworks display at the local school but I was too tired. So he ordered Chinese takeaway and we sat on cushions on the floor, in the dark and in our pyjamas, eating Chinese and watching the fireworks through the window, those we could see over the tops of the trees. It was so peaceful, we had a few minutes while the baby slept. When she woke it was easy for me to feed her (I was breastfeeding) while we continued our moonlight indoor picnic in front of the picture window.

After our 15th anniversary, husband's parents minded the kids and we had a weekend in the city in a motel, finding last-minute tickets to various live shows (it was pot-luck, but an adventure). We saw "Rocky Horror Show" live in the theatre next door; it starred Gina Riley as Janet. She is in the US at the moment, working as Executive Producer n a US version of "Kath and Kim", an Aussie sit-com. She was staying in our hotel, we went up to our floor in the same lift as her.

We've managed something like that only twice in our married life, but each time it was fun. Most of the time we just arrange a special dinner together, just for us, on the night itself. Usually it's at home, sometimes all we can do is arrange to sit together with our door shut while kids pound on the other side, totally unregarded for a time, while we just talk. Or we've gone for a walk late at night after the kids are in bed.

As long as we get some "us" time, the trip or special celebration takes place when it fits into our schedule better.

Enjoy your anniversary however it happens. Maybe when you're at Mayo you can have an evening just for yourselves.

Marg

 

[Fran]

Linda, I'm sure that the burden he carries of the house and worry about you are overwhelming. If I recall, he had some mood issues a few years back. His refusal to believe the professionals or even visit with the professionals is worrisome.
I don't believe he is thinking clearly. In addition, even if he was there are limits to what you can do in a day and limits to what he can do in a day. Maybe he has reached his threshold.