Break me into pieces why don't you

[Tom's Support]

Took Katie to the ALS meeting last night. Reported there that a lot changed over the last month, they wanted to know if Tom was more compliant.
I said need generates a lot of things, for instance he is more clingey, and uses the suction machine himself, but he still resists things.

What an understatement!
It seems I am to be punished for going out to the useless meeting. I got quite a blast when I got home.

While I was out mom called (not sure if it was mine or his) , my sister called -- clarified it was Holly and the nurse called too. She will be here Wed. at 1

So now the tirade on what the hell etc... and what is the nurse for anyway?
I said I wanted to talk to her about communication devices.

GLARE!~!

He is not using any such stuff and bla bla bla bla......
I said, OK Mr. independant. Lets see how you do on your own.
I can't understand you so what now?
He said stop listening. Really? That is an option? Cool, cause that will free up a LOT of my time. If I am not helping with showers, getting dressed, organizing his day, making the coffee, repairing broken dentures, going to get meds, cleaning the equipment, ewwww, meeting with nurses etc. then all I will have to do is get up, go to work, come home, make supper and go to bed. Oh, and when I get there I can sleep. SWEET!


I am still going to get the com. aid from the nurse.
She is still going to come every wednesday.
I am still getting the air on Dec. 13.

But what ever it is he needs, he can get himself. ( on Wednesday)
Bugger! Why does this have to be so hard? Oh, ya FTD.
I really hate being glared at, despised and criticized
I hate demands that when answered are thanked for with contempt.
I wish I was something other than the enemy.
The thought "Is THIS what Christ's life was like?" crosses my mind regularly.
If so, and I think is is closer than most humans will experience, I don't think even Christians are giving Jesus enough credit.

 

[Gentleman Jim]

Julie,

You may or may not have read the post where I related somewhat to what you are going
through. My pal used to get very angry with his son. Grab him by the arms and communicate
with his eyes.
One day he did this in front of me. We were in Charleston S.C.. It was the middle of the night.
His son was helping him to the bathroom. After dropping his dad, he came and woke me up to come
help.

My pal was having a fit with his son. I looked him straight in the eyes. I said, if you don't stop this,
I will go back in my room and will not come out till Friday when we go home. (We were on vacation)
Eddie was smart. He knew he was dependent on me. The truth is, I meant it.

If you don't get that straight with your pal, with your children, your boss, whom ever, you will
always be trying to appease them. The word appease means. You feed the alligator so he will
eat you last.

In most situations, it is not that black and white, I know that, however, we teach people how
we want to be treated. (Dr. Phil) So, lay down some laws that you both can live with.

I had some care givers that would run everytime Eddie honked his horn. I told them, don't get
started doing that. Finish what you are doing and then see what he needs. If you are eating
your lunch, just say you will be there shortly. It is not like the vent machines is going off.

We took very good care of Eddie. They were all women. For the sensitive, stop right here.
But, I am male. I even made sure they adjusted his nuts to make him comfortable. Yes, we
did have a few laughs over it, but men know, it is very uncomfortable if your nuts are being
crushed between your legs. If you cannot move to do it. It also helps to go to the bathroom.
O, I hope that will be valuable info for some of you.

Just reading your post Julie, my heart goes out to you. All, cals and pals can work together,
either willing or out of necessity. You said it quite proper.

Hugs,

Jim

 

[tammyg]

I am so sorry you are going through this. It sounds like he is very insecure, depressed, why me? sounds like he envy's you being to go do things that don't include him..He figured if he don't go with the program, other things will not happen to his body. And you know men (most)in general wonder if you are out with someone else getting your needs satified. They don't realize we have NO ENERGY for any of that stuff.
I can't imagine what it like emotionally. The glares...You are able to go out, do stuff and he can't. He has to realize you need support too, It;s like he has this disease and you don't, but you are the one suffering. You just need to explain, that you need this for YOU. It helps to talk to others going through the same as you are. That this is hard for you too and you need support he cannot give you. It sounds like it gives you insight on up coming needs. Tell, him You Love him and you and other people want to hear every word he says and it is very hard to try and understand what he is saying and you hate having him to repeat it. Stay Strong....

 

[joni51]

Wow he sounds like my husband, it is a constant fuss every day over using the things he needs...BiPap, nebalizer, ect... It is hard enough with the disease, but when they fight you every step of the way...Yep work, go home work at home til the next morning, mostly with no sleep

 

[Barbie]

I am so sorry you are getting this on top of everything else. My husband doesn't have FTD, but definitely had a personality change for the worse as well. I will tell you, I put him on Neudexta and it has really made a difference in his "meanness" . It is a miracle drug in my opinion. Over all, my sweet husband came back, with only an occasional mood swing back to jerk. I don't know if it helps with FTD moodiness or not. My husband fights every piece of equipment and help as well-- I get it, and he refuses to use it and that is that. If he chooses not to use some equipment, it is his choice. But the nurse is for you--she will be there to support you as well so put your foot down on that.

 

[hn7609]

My hats off to all who are able to provide care for PALS. You have earned a special place in heaven for what you do. I am still fairly new with this disease and luckily so far I am still able to care for myself. I am concerned that my wife is already on overload with working full time, caring for the kids, & house. Unfortunately now that I can hardly walk I can't do very much to help her out anymore. She plans on caring for me till the end but I'm worried what it will do to her. I can't bring myself to put her and the kids thru the ordeal that's about to come.

Hang in there Julie I hope that you can find a way.

 

[joni51]

Bill I am sure your wife loves you, and and as Cals no matter how tired or frustrated we get, we do it because we Love our Pals. She will do the same.

 

[Mrs C]

My PALS gets grumpy when I do my once a week happy hour...well, too dang bad cuz that is ALL I do other than be at work or at home...and his daughter is here with him during that time. GET OVER IT. As hard as it is for them to admit they need us, it is just as hard for us to admit they can't do without us. We don't want that. We want them to not need us....as much as we want this to be just one big horrible nightmare! We want our lives BACK! But that is not the path fate has chosen for us unfortunately. Therefore, we do what we can, when we can. Tolerate as best we can, love easy and free, and forgive ourselves as well as our PALS. remember this: communicate, validate, and appreciate the gift of love you all have for each other...for there is no greater gift than love.

 

[Tom's Support]

Thanks all. This encouragement is the best medicine to help a tired cal get through the tasking.
Poor Tom, I gave him a reminder day. Yesterday I left for work before he got out of bed. He can dress himself but it takes 30 minutes. He can't shower, but going one smelly day won't hurt. He can make a very messy coffee. He can get his mom to prepare his food. All of this being one grand inconvenience for him and the others he has to call.
Last night I did not get home from work until 7:30 pm. (Kids at home by 3 and making supper etc.) A co-operative pal asked for help going to bed. I am grateful for the small win.
Today will show its own colours of gratitude or glare or somewhere in between.

 

[tammyg]

Let him glare away. Maybe he will appreciate you a little bit now. How can he be mad after you work so hard to support him and your family. They take it out of the ones they love most.I guess he can't do stuff and you can and it make him a little bitter. Believe me my dad had his own "Sign Language", eye rolls and glares too.
Like you say, another cornerstone, men have always been "the rock" of the family. Now he can't do that and depends on people. This I think is a bitter pill for a man to swallow.
I read in another post about meds that can help this, you might have to sneek it in him though,It sounds like he fights everything(scared) Maybe let him know, he is making you more depressed, that you have enough on your plate, and if he don't start treating you like the wonderful person you are, appreciate you. Let him know he has the disease and you are the one suffering toooo. you might get a full time nurse.
Hang in there. Hot bath , 2 glasses of wine and a candle do wonders. Try and find time to do this, it does wonders

 

[Tom's Support]

Thanks Tammy. I know about the bath and wine. Drowning this out with alcohol has been a bit of a blessing, but to my detriment, my daughter freaks whenever I reach for a glass. She is very depressed too and last night I was trying to talk her into coming to the doctor to get medication. No Way! OK, another stubborn one.
Prior to this, while I am trying to renegotiate the mortgage with the bank manager I am also texting her with please don't kill yourself until I get home to say goodbye. In the manager's office. While the manager is photocopying the tax records of my business.
My life is absolutely insane. If I weren't living it I would think it more likely a dream. It is too far fetched to even be good book material!
My daughter wants to get a puppy to have some joy and love in the house when she comes home from school. A simple request, yes, but Tom wants to be in control of this as well and only wants a basset hound and we must wait until he finds just the right one. We've been waiting 11 months. I wonder if adding yet another mouth to feed, not to mention more chaos is exactly the right thing to do.
I also know that I will be the chief caregiver of yet another member of our house and do I really want that added commitment right now? We are already a zoo with two ferrets, two birds, a tank of fish, Tom, my own two kids and a future daughter in law who moved in to help out........
Forget the glasses of wine, I need a keg.

 

[Katie C]

Ok.... we got a puppy right before Glen got his diagnosis. SuggestionON'T Puppies are like new babies and take lots of time and energy that You may not have to give right now.

And if Katie is truly that depressed... I would make going to the doctor non-negotiable. I know that's hard... I had to do it with my then 22 year old. I am convinced to this day that it saved his life. Put up with the glares, the stomps, the tantrums, the name-calling...just get her butt in the car and get her there.

Hang in there...we get it.

 

[Barbie]

I just got on a low dose of anti-depressant myself last month--I feel soooooooo much better and able to handle things. I don't know why I resisted for so long. (oh yea--because I was depressed!)

 

[Tom's Support]

Exactly. Been there myself and for some reason was able to leave meds!?!?
I don't get it, but I am with fuller faculties now on my own. Yea meds!
I will never forget the day I drove myself to emerg. I screamed all the way from work to there then walked in, sat down and said help. now.
I got it too. whew!