Drained

Status
Not open for further replies.

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
147
Reason
CALS
Diagnosis
1/2015
Country
US
State
TX
City
Houston
Thank you. Sometimes I think the mental torment is the worst. It has been a rough week and it's only Wednesday. There seems to be some difference between what I was told the aide can do when I hired the agency and what she actually can do. Hope to sort that out tomorrow, but it's always something. Can't catch a break.
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
147
Reason
CALS
Diagnosis
1/2015
Country
US
State
TX
City
Houston
Resolved issue with the aide and she worked out well last Thursday. I took ya'lls advice and took some time for myself.
Was nervous about the aide, even though I liked her, that will pass I hope.

Hope you don't mind a little rant. I really have no one who understands what this is like. Everyone tells me I am so strong and doing a good job, but that is not what I feel like inside. I am so tired all the time. Still really trying to bring some quality of life into every day for him and think I am succeeding but it is so exhausting managing everything all the time. The mental part and worry is the worst of it I think. Constant adaptation as you all know.

Last week my husband rolled over my bad foot when I was setting up his computer for him with his wheelchair, I was worried it was broken again, but it seems ok today, thank goodness. Not the first time he has accidently hit me with the wheelchair. I have talked to him about it and not to move until I tell him too but that just makes him angry for some reason.
We get along fine for the most part, but sometimes I feel like I am walking on eggshells, I don't want my memories to be of him being angry or us arguing. We were both very independent people before this. He is such a strong positive person in general and I can't imagine the frustration he must feel.
I just want to say that you all are an inspiration to me and all you handle every day.
 

Avocado

Active member
Joined
Oct 8, 2017
Messages
44
Reason
CALS
Diagnosis
02/2017
Country
AUS
State
Western australia
City
Perth
Annie- no one here minds a good rant in the least (in fact I think it’s encouraged!) and you won’t find anywhere where people better understand what you are going through.

I’m glad the aide is working out and very happy you took a little time for yourself. It’s so hard to do and so important.

It’s all so physically and emotionally exhausting. You are doing great even though it’s hard to feel that way. Hang in there!

Hugs!
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
729
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
City
Stuttgart
Success with the aide, that's good news. Takes a bit of time to develop complete trust.

Your rant is in good company here. I completely understand. It's weird being called strong and feeling weak. Probably it's like this: while you spend all your energy and strenght it's highly visible for others. They see what you do and and deal with daily. But once that energy is put into tasks and patience and coping you're, right, drained. That's it. You are strong and to regain that strenght you have to reload your batteries in any way that is becoming to you. The time for yourself (or friends or pets or stranger or anything other than what drained you in the first place) part, that's the way. You go, girl!

I could imagine him get angry when told to sit tight, as that's what the disease is dictating his body. This is an exeption though, those wheelchairs are friggin' tanks and it HURTS. I screamed at helpful strangers when trying to board a subway not to touch that thing or they might get hurt. No stopping them. The guy who delivered the wheelchair to my PALS recommended to turn it off everytime someone hovers over him or he's sitting at a table in order to not accidentially rearranging the furniture or your bone structure. Safety first.
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
617
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
City
X
I'm right there with you. People will say what a good job I'm doing, but I don't feel that way. I also get exhausted managing everything. You sound much like my DH and I. We were both very independent people with interests of our own. Being so "bound" to each other all the time is hard. We bicker now more than we ever did. I do find that when I can get away for a bit, I feel better. I have an aide 2x a week for a few hours. I'm still trying to figure out how to balance the errands with me time.

And the wheelchair! My DH is having a lot of trouble with his hands and arms. Last time we were at clinic, he asked the wheelchair rep to make the joystick more sensitive so that he could move it better. What an adventure that has been. He has run over my foot, run into one doorway so hard that he bent the controller almost to a 90 degree angle, and broke the Permobil cupholder that took three months to get right off. ARGH!!!! I got the controller back to a decent angle again, ordered a new cupholder (found out that Permobil uses a RAM Mount and just adds their attachment for the arm) and had the tech come out today to re-adjust the sensitivity of the joystick.

Hang in there! Hugs.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,377
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Rant away - we sure do get it. I always found the emotional drain was far worse than 'doing' the stuff to care for Chris.

I think that you are incredibly strong because you are still there doing it, despite your deep exhaustion. Did you know that a lot of people just walk away? I've seen it happen both with ALS and with many other diseases. Too hard, I'm out, and the partner walks. Incredible!

For me that was important - I knew and acknowledged to myself every day that I was choosing to stay and do this. I was not trapped, I didn't 'have' to do it, I did it because I loved him.

Being able to rant to others who were doing the same was the thing that allowed me to keep going each day and not fall in the heap that I felt was about to happen :)
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
147
Reason
CALS
Diagnosis
1/2015
Country
US
State
TX
City
Houston
Thank you all for those words of encouragement . It means so much, especially since it turned out to be a very difficult day. And it may be a difficult week. One of my kids is having a hard time with panic attacks. Trying to help her through them.

Thanks for pointing out we are doing this because we love our cals. I hadn’t really thought about the fact that people leave before, although I knew it happens. Knowing I am making the choice to do this does make it better some how.
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
147
Reason
CALS
Diagnosis
1/2015
Country
US
State
TX
City
Houston
Feeling more blue than usual today. My oldest DD is starting her new job in a different state after graduating and is already there. She is engaged to her college sweetheart and called this weekend and is starting to look for her dress today. I obviously can't travel without months of advance planning and it is what is is, I know there is no solution. I had thought she would shop here, but it makes more sense for her to shop where she lives, what with fitting, etc. and she can't take time off from her new job, the wedding will be here however. I can't talk about how I feel with my husband or family and friends as don't want to make anyone feel worse than they already do about the situation, my husband is an only child so there is no help there and my family and friends have already been very supportive.

I have made a list of things to be grateful for so I look at it when I am feeling like this. I know that even though insurance denied us, we are lucky to be able to afford help a few hours a week one day. There are lots of things to be grateful for, but sometimes a feel so overwhelmingly sad.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,377
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
That will be hard having her so far away with all the planning. Is her fiance there with her or does he live near you?

Maybe she can do facetime or some other video calls with you, or at least send you photos of dresses she tries on or items she looks at so you are involved?

You do need to talk it out and vent somewhere - holding in these deep and totally valid feelings is really unhealthy.
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
617
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
City
X
I was thinking along the same lines as Tillie - maybe Facetime or Skype with her during her shopping? Not the same as being there, but I think she'd probably like you "there" too, even if it has to be virtually.
 

MVFinVA

Distinguished member
Joined
Sep 5, 2017
Messages
116
Reason
Lost a loved one
Diagnosis
05/2017
Country
US
State
VA
City
S
Oh I'm so sorry!! (((HUGS))) I understand! My oldest DD and her husband are expecting twins, our first grandbabies. What a blessing! But they live 3 hours away and I won't be there when they arrive and I will in all likelihood have to wait for them to come to us. Which will be awhile. In normal circumstances I would hop in the car and be there for the birth. I'd also be available to help after. I just have to keep focusing on what a happy gift they are in the midst of a terrible trial, not on what I won't have. But it does make me sad.
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
147
Reason
CALS
Diagnosis
1/2015
Country
US
State
TX
City
Houston
Twins! How exciting, I don't have grandchildren, but have heard from my friends it is wonderful.

My daughter sent me pictures in advance of several dresses/styles she found on the Internet and Intold her which ones I liked. As it turned out we were on the same page. She then sent me pictures from the bridal salon of ones she was trying on and picked one that is just stunning and was one of the ones I originally liked. I had tears in my eyes. Yes, I would have loved to be there, and we had some technology issues, of course, but the pictures were lovely and she took the time to put her hair up and the consultant put flowers in her hair so she looked beautiful. You are right, it is a bright spot in this otherwise heartbreaking time. And as my daughter said, it is 2018 not 1918 and we are lucky to have the technology to do this. I was multitasking, looking at pictures and feeding my husband. When he would take a bite I would turn to look at the screen and comment.

On another note, we had a windstorm Sunday and I went out to 'batten down the hactches', and something flew in my eye, after flushing it, etc. after two nights it's still there. I may have to go to urgent care tonight when my daughter gets home from work. Who would have ever thought, trying to leave the house just to go to the doctor would be a luxury.
 

MVFinVA

Distinguished member
Joined
Sep 5, 2017
Messages
116
Reason
Lost a loved one
Diagnosis
05/2017
Country
US
State
VA
City
S
I'm so glad you were able to take part in the dress selection! Your daughter is so right about technology! I am so grateful for it, especially FaceTime/Skype:) My younger daughter, 23, has been living with us during a gap year between undergrad and grad school. What a blessing it has been! It was planned before the diagnosis and it has been so wonderful to have her around. She leaves next month to move literally half-way across the country to go into the Army and attend a three year doctoral program. What a fantastic opportunity for her - paid to go to free grad school, and job security! We are so excited for her, but I will miss her so much:( I am counting on calls and FaceTime sessions to stay in touch.

Hope you can get your eye situation taken care of smoothly and swiftly!
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
147
Reason
CALS
Diagnosis
1/2015
Country
US
State
TX
City
Houston
Thanks. My youngest daughter is home from the summer from college and it has been so great to have her around in the evenings. I know what you mean. I will miss her when she goes back, but we will keep in touch with FaceTime, etc.

My eye is finally better, what a relief. My neighbors were power washing their house during the windstorm and I think it was a piece of stucco.

The aide I have on Thursdays is working out, although she will be on vacation for three weeks soon, about the time my daughter goes back to school. I was able to get so much done in those few hours, groceries, washed the car, went to dr., even bought a new pair of more comfortable cushiony shoes to wear around the house everyday. What a difference, It reminds me of when I was working my way through college as a waitress and was on my feet all the time, wish I had thought of it before now. I thought my shoes and slippers were comfortable but I would have never waited tables wearing them.

I showed my husband how to do the text to speech application on his computer, his speech is getting worse, and he picked it up pretty quickly. Now I am trying to figure out some kind of bell or call button he can hit with his foot when he wakes up as sometimes I get up in the middle of the night and go out to the couch, which isn't far, but I drop off around dawn and so far have been awake when he wakes up, but worry that exhaustion may win,
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
147
Reason
CALS
Diagnosis
1/2015
Country
US
State
TX
City
Houston
Yesterday was our anniversary. My daughter stopped for takeout after work so I wouldn’t have to cook.

The evening was rough, however. My husband was having problems. Several cough assists, suctions and using the nebulizer before we got in under control. He feels better today, thankfully. I always feel like I m waiting for the other shoe to drop and I hate the worry I see in my daughters face.
 
Status
Not open for further replies.
Top