Ugh! Just frustrated!

[shelleynshaggy]

Sorry - another vent!

Okay - so I am at my parents house today - 1st time my dad and I have been alone since all this started. He is telling me about his upcoming surgery consult (hip replacement). Well - to make this as short as possible - dad ends up saying "well I hope they make him better!" I just looked at him - I know my mouth was hanging open - I said Dad - he isn't going to get better - they are just trying to slow this down - he has changed so much in just a few months.

My dad replies really? Then starts talking about how he really "liked" Jim! I keep saying he gets about as much of this as Jim does - but now I know it. I told him - dad there are 50 conditions on SSI's "list" and he definately has one possibly two of those diseases - dad: "oh, wow." AAAARRRGGGHHH! :-x

 

[indigosd]

I can so completely identify! My Dad is exactly the same way. I will give him a little wiggle room since he is 84 1/2 years old and lives on his own. lol These are just a few of his statements this past week. "He looks so good. Maybe it is a misdiagnosis..." "Can he come out and put my storm windows up and take out the ac unit?" "Do you think he will get that tractor fixed?" "Are you sure that he has ALS?" "So, do you think you will be hunting next year?" I think some of it is that he [my Dad] is in denial. The other problem is that DH just doesn't "LOOK" sick. The third problem is that I don't whine and cry poor me so I don't think that it has really hit home as reality for my Dad. Yes, frustrating and aggravating.

 

[Katie C]

Shelley.. .we're finding that with glen's boss! When I let him know that Glen would be going on disability he sent me an e-mail saying "I'm so sorry Glen's condition isn't improving." Then today when Glen and Kev were in cleaning out Glen's desk and picking up his personal stuff, boss stops by and says "we need to set up a time for your annual review." Now that the disability is approved and Glen's definitly not returning, I'll be sending Mr Immediate Supervisor some study links!

 

[Zaphoon]

Isn't it wonderful that we can feel and be crappy without looking crappy? Makes me smile!

I have a few people that see me and put that long look on their face when they ask, "How are you doing?" I tell them I'm just motoring right along and smile really big for them.

Some days I feel bad and other days I feel worse. Some days, not so bad, almost good! Those are the days I start off by using PZ's Happy Pills! You can mix them with coffee, tea, milk or the fruit juice of your choice!

I think I'll write a jingle on my PLS experience. Something light and snappy that makes you want to tap your toes (only you can't tap your toes because they won't tap anymore).

Too much coffee again today.

Zaphoon

 

[cukita99]

i used to get mad every time my dad would tell me to say yes when he ask me something. he will tell me, i know you can talk if you want. now i just ignore him. he is 83 so no point trying to waste my energy.

 

[brooksea]

Hey Shelley! I can relate. My mother has finally realized my husband isn't going to get better. But, while she was in an assisted living facility she would tell me stuff like like I hope he gets better or maybe he'll feel better soon. She now understands that this is not possible.

Hang in there!

 

[lisaann1170]

My dad is the one with ALS and he says things like, "when I get better..." or "when I can move around a bit more..." I don't correct him. Either he gets it and is saying this to make himself feel better or he doesn't get it and I'm not sure there's a point in correcting him.

My co-workers are extremely intelligent people (college professors of all disciplines) and I'm constantly asked if my dad has improved. Perhaps we all have a difference perspective on "improvement."

 

[tdamess]

my son has als and my husband would not believe it at first , then he would go around saying i can't believe this .and go back to not believing it . he now believes it after billy couldn't pull back the bow with the arrow and has now given the bow and arrow to my husband...now he says billy couldn't pull the bow back , .. in shock ... so now my hubby knows it's true and he is very sad in side now as my hubby is not a man with acceptance of such an awful disease to a young healthy strong man (boy to me ) ...so , denial or hope must be some people's way to accept over time all at once might be too much for them

 

[LauraW]

Oh wow, can I ever relate. Everytime we go to the clinic Dad thinks Mom is going to come home totally cured. He keeps trying to get her to walk instead of going out in the wheelchair...I don't think he'll ever "get" it.

 

[Pidge]

I know what you mean my son got a very nice get well card the other day from a family member. The card reads praying for your quick recovery & peace during this difficult time. Other cards he has received sound like sympathy cards like he is already dead. These are from well educated people. We just have to grow thick skin & remember everyone means well & they really don't know what to say, and many are in denial. Also we somtimes "I know this isn't very nice & don't tell anyone" but we sit around & make fun of the people who sent the cards we get a few laughs.

 

[wacked]

I was recently told by a friend "We're all dying, it's just that your husband is going to get there sooner." I have to remind myself that there are no words that can make any of this better. Some are just a little more crass than others. We've received wonderful notes from other friends that remind me I should do the same.

 

[Gelthling]

I get the "we're all dying, she just knows it sooner than the rest of us" about my mum all the time. My uncle's both used to make her talk even when she was struggling, trying to keep her voice working...though mum was diagnosed with extreme depression for a year before they really figured out what was wrong.

Now, I have an uncle that doesn't talk to anyone for hours after he has visited mum and thinks he should be the one getting the sympathy because he is older than his sister and he is loosing her - the other thinks she should be in a home so that we can just visit, my 4 year old doesn't like visiting her nan because nan is scary as she cant talk...and I'm just trying to make mum as happy as possible before her time does come. Mum herself is in denial and is just taking things a day at a time and hates it when someone asks how she's going..she wouldnt respod to emails asking after her health, only the ones that people spoke about normal stuff.

On the other hand, she has 3 friends who visit her every fortnight, helped clean fridges and the house etc...their more helpful and caring than most of our family! Without these girls, my mum would be a mess!

 

[tdamess]

who say's one of us wont go first ...anything can happen...so, they may go sooner than us is not necessarily true ...