Rant - pals only please

[texastc]

I know too, pals...but like goose, I'm sorry too. And, I'm a guy/fixer too...but I understand. I felt like that too in the beginning, but not to the yelling point...no place for that. It is terrible, on both sides...but I always told myself, the terribleness I felt was nothing to what Tracy felt...and you feel. Like I said, I'm so sorry. I wish there was no ALS, no pals or cals.

tc

 

[sleepy]

I have run out of thanks, but I am grateful to all of you that responded. It does help to know I'm not alone. It sucks that everyone feels bad, but misery loves company I guess.

Kim your response broke my heart. I can't imagine still juggling the expectations that are on you. There would be tears.

 

[faithandlove]

Wow! I so needed to read what everyone else with ALS is going through. I'm just sorry you are.

Yesterday I took a shower and I was alone, and could not get up from the chair. I sat for about a 1/2 hour and then I mustered the strength to get up. I knew my husband would not be able to get me up. We have a Hoyer lift but it is downstairs. I got dressed, and was done for the day. No more strength.

Today I woke up with a cold, and feel horrible. I got up at 6am and then went back to bed until 1pm. I asked my husband to fix me some soup, and he said yes, but then totally forgot about it. By 2pm I was starving and thirsty. I had to ask him again, and he got up and fixed just the soup - nothing to drink. I had to ask him for ice water and I know he was not happy about that. He forgets to feed me a lot. Food is not a huge priority to him. I hate that I have to ask him, but that's the way it is.

My husband is insisting on living in this two-story house, and he believes he can take care of me. He is disabled having had three back surgeries, and has permanent nerve damage to his left leg (drop foot). Our house is beautiful and I want him to have this wonderful house when I am gone, but something has got to change when I get my motorized wheelchair. I have to be able to get around the house, so some of the furniture has to go. I'm waiting for him to see this for himself once I get it.
.
But, yes, I hear that I'm not a burden. Damn it! I am a pain in the ass, and I hate being this way.

Don't worry about me, though, I have long-term care insurance, and I'm seeing a nurse this week. I have a lot of support, and I will be vocal about my situation and what I need. My husband just does not think like me. I take care of problems before they happen, and he takes care of problems when they occur. I can't take care of anything anymore, so I have to abide by his way of thinking and know that problems will get taken care of eventually.

Hugs,
Deb

 

[BlueandGold]

Things are certainly changing between my wife and I since my progression has sped up. Before, I was doing 99% of everything myself. Around December, when I had my peg surgery I went down hill very fast.

Now, I can't pull the stopper out of the top of my tube, I can't put the syringe in the tube, I can't even get a single intelligible word out, I cannot climb the stairs, I can't open any type of bottle, I can't open anything that is enclosed in paper or plastic (like I can't open a pack of gauze). I'm still taking a shower myself. What is strange I don't do too bad washing myself but drying myself is a nightmare. I used to use a big terry cloth robe and it was perfect; now I can't even lift the robe. By the time I dry myself off with the towel, I am dripping with sweat.

I can tell my wife is getting more frustrated with the daily meds routine - once at 7:00 am and once at 11:00 pm. She says in August she is going to alter her work schedule and work 9:30 to 3:30. So she will leave the house at 8:30 am instead of 7:15. The hope is this will allow her to help me shower and dry off. I've been begging her to take FMLA, even though it is unpaid, so we can have some quality time together but she won't do it. Worried about being gone for 3 months. She is in the brokerage industry. If she is frustrated now, what's going to happen when things really get bad. I love life, I love my wife and my sons, I adore my siblings and my mom and dad. I don't want to leave them. I want to see as much of my grand babies as possible. Yet, I can't shake this overwhelming hope that I'll go to sleep one evening and move on. My wife is not going to be able to be a caregiver, at least not the kind that is required toward the later stages.

I try with all my being to be positive but watching my wife of 31 years begin to have a change in her personality just rips my heart out.

Vince

 

[sleepy]

Yep Deb - I think for me the big struggle is accepting that it will happen when it happens and trying to be zen about it. I was so independent, I wouldn't complain that something wasn't done, I'd just do it. My dependence itches in a spot I can't scratch.

 

[faithandlove]

Vince,

I certainly understand.

I actually pray that I go to sleep and not wake up, and I love life too. Just not life like it is now. I have four grandchildren, 12, 10, and two 8 years old. I want to,see them grow up, and I would love to hold great-grandbabies.

Except on this forum, I never complain. I'm glad we have this outlet for our anger and frustrations.

Hugs,
Deb

 

[sleepy]

Vince and Deb - me too. I want to be here as long as I can for my kids, but I fear the impact of a protracted bad death on them, my husband and me...

A shower, and drying, used to wipe me out for the day and now I have someone to come in every day to wash and dress me. Hard to get used to but I am glad it's not another thing I have to ask for and wait and feel guilt about.

I think the wise words above were to just focus on today. I will try harder.

 

[tripete]

"drying myself is a nightmare"

Ditto

I love taking showers but not anymore.

 

[chally]

Totally agree with Pete! Bitterness& anger suck!

 

[azgirl]

Bitterness and anger will not scratch this itch on my eyebrow!
They are only a waste of precious time

 

[KimT]

I hesitated to post this but it still haunts me a month later.

My ex-husband (I've done many things for him since we split up in 2008 and we remained friends at a distance) said he wanted to help and he actually did a few things. I found out it was all because he "wanted to get back together." Not because he loved me but because he "wanted to learn how to love somebody." Those are his exact words. He lacks empathy and, when we were together, I allowed him to go years without work. He had the stamina to play golf all day long but only worked when he was "inspired." I allowed him to drive all my friends away with his judgmental and odd ways. I ALLOWED THIS. When I told him I couldn't work on an intimate relationship with him, he e-mailed me and said, "You brought this on yourself. All you've ever done is worried about your health and you allowed it to afflict you." He said many other hurtful things in the e-mail implying that I could just "refuse to have Meniere's Disease for all those years" (even though I never missed work with it and the horrible vertigo I suffered from it) Now, he believes I brought THIS on myself.

I've given him a pass because I believe he is mentally ill (and so does every doctor he has seen for whatever reason.)

My response to his e-mail was "thank you for letting me know how you feel." He immediately wrote back saying "it's not how I feel. It is what I believe." I didn't take the bait.

Two weeks passed. Then I got an e-mail asking me if I really meant everything I said?????

A week later (last night) I got an e-mail asking for advice about his credit card. I did politely answer the letter.

This surge of interest isn't about love. It isn't about friendship. It isn't about doing the right thing for someone who has done so much for you. It's about $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$

I've spend many sessions in counseling and worked through this but it has become raw again and I only have myself to blame. I honestly thought he wanted to help but his help was based on everyone else in my life going away and instead of attempting to control a strong woman, I would be an easier mark now.

 

[Michellesews]

This just makes me want to
Reach out, hug you like crazy and say, you definitely have him figured out. Does he expect to be the beneficiary on your insurance? So sad, most behaviors simply require that you follow the money. I'm CALS to my husband and reading all these posts makes me want to be more careful to be loving and never show the slightest irritation. I cry..a lot...and that upsets him as well. I'm going to have to do better.

 

[faithandlove]

Kim,

I admire you for posting this. You deserve only the best, and your ex-husband does not fit that category. Surround yourself with good, caring people. You're going through enough, and you need positive energy not negative.

I know exactly what you are going through because my father was the same way, and my mother put up with his selfishness until she died at the age of 58 of a heart attack. My father lived until he was 92 in a nursing home. In fact, he died this year, and it was a relief. The stories I could tell of his abuse. Thank God I married a good man.

A big hug to you,
Deb

 

[ShiftKicker]

While I do not suffer from severe limitations as yet, this has been my biggest fear. I have seen small signs of it as I slowly reduced the amount of housework and chores I've managed and resentful comments are made about what hasn't been done yet or recently, or "How come you never...anymore". I fear for the days where someone will actually have to "do" for me.

I am (or was) the "caretaker" in my family. The one who always made sure everything was OK for everyone else and spent most of my energy being a parent and responsive caregiver for those around me. It was notable (in retrospect) how many people dropped off when I no longer made the effort to socialize, do favours, care for and follow up on others when they were struggling. Several people in my family and social group have been hurt because I am not the one to initiate contact on a daily or weekly basis. My absence was noted, but instead of contacting me to find out how I was doing, there was resentment. While one part of me wants to complain and tell people I'm struggling, the other part fears the response. The whole "You look great!" thing drives me nuts and feels accusatory. I may look great, but I don't FEEL great.

Kim, I feel for you. Your ex (to make a totally unasked for judgement here) sounds like real piece of work. Good for you for disengaging. It is a real eye opener when the motivations of those we have provided for in the past are laid bare. Regardless of why people respond the way they do, it can be so deeply hurtful and personally injurious to receive the responses you have. I have nothing more to add other than, they suck, you are awesome, and I would wish that everyone here who is struggling with peoples' resentment of them didn't have to receive such a terribly unempathetic response to a terminal or life limiting disease.

Fiona

 

[BlueandGold]

If they had an ALS Sanatarium in a beautiful tranquil location with genuine caring staff, I believe I would spare my family what is coming and go there. Unfortunately all we have is long term care facilities with staff that knows nothing about our disease.

Vince