Pity Party coming on!

[Barbie]

I think we call that a cowboy catheter...we have one and have used it a couple of times. I think the urinal is easier to deal with and cleaner too (when I am not pouring it on him in the middle of the night). I like the idea of a non-spill one. makes me think of the old roach hotel commercials: pee checks in but it doesn't check out.

 

[affected]

The non spill one was nearly 4 times the price of regular ones.

The lovely lady serving even said, here come with me, took me out to the staff room and opened the packet and we tested it out at the tap.

I stood there looking at the price tag and thinking of stripping a bed and washing someone down and changing them in the middle of the night because I was dumb enough to tip it. Or coming in to find that a hired carer had tipped it in the bed and not cleaned him up. or, well it didn't have to go on to find a third scenario, I just went, yes please I'll have that one.

Wonder how long til he actually lets us use it, you wouldn't believe the amount of stuff we get that then goes into storage, even though he just 'has' to have it, until he gets it. FTD gotta love it!

 

[barneyswife]

Good Morning,
We went out for dinner last night at my best friends. (one of Barneys many cousins) It was lovely..... until....I looked over and stopped Barney from feeding their cat a wad of semi-chewed food. I nudged him and held out my hand under the table and this giant warm lump was deposited in my hand. Great that he did not just spit it out on the plate.
It was so nice to get out!
Hugs
Linda

 

[Santa joe]

I was able to get out yesterday. Wow I needed that. Walmart is my to go place. It's not far from the house. I had hired someone to come in and sit with hubby once a week. She was vent trained and I didn't have to take out a second mortgage to pay her. Well! Called her 2 weeks ago to confirm the time for my weekly outing. I waited and waited on the scheduled day. Guess what? She never showed up. I called her and went straight to VM. Have not heard another word from her. One of our church members heard about my situation and volunteered to come over. She is a RN. Whether she felt pity or wanted to be kind, I was able to get out a couple of hours. Now I'm on the search for someone else. It's always something!

 

[barneyswife]

So happy you got out Debbie. My big out is tomorrow and I am driving over to my moms. It is about an hour and half from here so it will allow some positive me time. Our friend is coming over to be with Barney and I honestly think he is just as excited as I am.
It is amazing how valuable our time away is.
Hugs
Linda

 

[affected]

Hope you had a great trip out Linda, and so great that yours was nice Santa Joe. I need one of them I think.

I can't type the details, but I am just having a quick private pity party over being verbally abused yet again today. Just when I thought the FTD was a bit settled, no we have a big week in many ways and I realise I can enjoy the good days, but never relax or think it has gone away or it hits ya just that bit harder!

 

[barneyswife]

Oh Tillie, I am so sorry!
I read somewhere that our poor mates no longer have the ability to feel any empathy? This is not the man that you married and I know that is the hardest part. The FTD part always seems to be lingering in that dark little corner in their brain just waiting to strike out.
Private pity parties are definitely important to our sanity. ( I have been questioning my own lately)
This disease is all wrong.
When "WE" were diagnosed I thought maybe the FTD part would be a blessing for Barney as he would not realize what was happening to the rest of him. I have to believe this for him but....... it does not have to make life h... for the rest of us.
So who do you think has this disease?
Hugs
Linda

 

[Santa joe]

Linda and Tillie - I haven't had to deal with FTD issues yet. I know when he gets aggravated, disgusted, mad,whatever, he takes it out on me. Now that he can no longer speak, I can see the look on his face. You are so right Linda. We are in this together. The next time I talk about ALS, I'm going to say WE have ALS.

 

[Pkmado]

I hear you on the interpreter. I just sent out an email to my Pals friends. They stop by randomly hang out and drink beer with my guy. Never less than once a week. His speech is just becoming so hard to understand. I told them to buddy up and visit and chat to each other and include Phil with eye contact and nods. I told them how valuable those visits are. So three guys pull up with beer and chatted away. My pals did not have to exhaust himself trying to talk. Not everyone has such good friends. However his brother who lives less than 5 miles away has not been seen for about a year now.

 

[Santa joe]

Don't get me started on my PALS family. That's a whole new thread.......my family on the other hand are wonderful to him. They treat and feel like he is their big brother. When the time comes, I hope I can hold my tongue with his crazy family.- probably not. I feel sorry for him.

 

[Santa joe]

Hey y'all, wanted to share a story. My friend who is very honest and outspoken, called me last night. She wanted to tell me she saw the article about us in the paper. Sunday paper and in color. She says "Joe looks real good but you look like Hell". I responded "well! at least one of us looks good". Wanted to cry, laughed instead. Thinking about doing away with mirrors, I'll just wait and let others tell me how bad I look. And the party goes on.

 

[Ronnie& sissy]

This party I think I can join! Tilley, my hubby once yelled so long at me for folding his bread around a hot dog wrong! A hot dog! But I don't know how to react, I've never heard of this FTD thing before, ( we have only been diagnosed a year and 4 months) but he too has the breathing issues, and his voice is being so effected. And I just spoke with the dr. And he's telling me if he starts choking whole eating/drinking we need to look into a feeding tube? This is all way to fast, don't know if I can handle it. And the bathroom at night, we get up at 1 and three to pee, but he insists on standing, ( so ya know that means me lifting and holding him up) I too but a no spill, but that was a no go! So then 5 rolls around we pee again then work time for me... Just so tired, but on the other hand I feel soo guilty even typing this, because he can't help it either, and ....... Great, now crying.... I just am not sure how to handle any of this.... I just love him so much.

 

[Santa joe]

Sissy - so sorry you are going thru this journey/nightmare but welcome to the party. It's a good place to vent and laugh.

 

[Barbie]

OK ladies, this pity party is getting to be a wallow...

Everyone...chin up, shoulders back, wipe your tears and repeat after me: " I am a warrior. I will kick a$$ and take names."

IMHO, a VERY important thing that every CALS needs to do is take time away from their PALS. it is not a sign of weakness or lack of love. mental and physical breaks are necessary so we can be at our best when we are with them. And going to work is not enough--it needs to be down time.

Every week if possible, even if just a few hours. It is work to schedule it, but you need to because it is worth it. be honest with family or friends and tell them that you need time away. if you can find 4 people to rotate weeks--they only have to come over once a month for gosh sakes. you could get a haircut, go shopping, play a game of golf, go out to dinner, or go to their house and take a nap!

I have done this. Honest. You know that I have been a CALS for a very long time. I was just about at my breaking point after the first 2 years...not a single break, crying all the time, guilt, sorrow, no help, husband angry and it was tough times like all of you face now. I will be honest, I started wishing I was dead so I could escape from everything. Thank goodness I realized that I had to make changes because my family needed me and my husband deserved better. I got on anti-depressants, started looking at home health care, talked with a therapist, and talked to my kids and they agreed to join together to care for him one night a week. two teens and two preteenagers so not the best caregivers, but they could feed him and clean him up and watch a movie with him and keep him entertained and call 911 if they screwed up...

he was not happy with me going out and let me know every week! but, he started seeing the change in me, and he started to accept it. I still do it to this day--and it is even harder to schedule the kids now that they are older but my weekly Yoga class is worth it, and if I get invited to a happy hour or a shopping trip I go and don't feel guilt. I was even able to have 2 weekends away since then!

All I am saying is that you know your circumstances so you have to be creative and don't find reasons why not, find ways to make it happen.

Lecture over.

 

[zoohouse]

Can't argue with you Barbie, because everything you say rings true. In my quiet times I wonder why it is that I can scrub my husband from head to toe, give him manicures and pedicures, cut his hair and take time to put anti frizz in it, but I don't have the energy to do more than put my hair in a pony tail. I use to have the nicest nails, and have my hair up or down a different way every day. When I start to resent my life I know I don't have anyone else to blame but myself. Last night I went out to get groceries on my own,(husband asked if he could come along, but I declined) and after getting them sat in the car and enjoyed eating a chocolate bar really slowly and watched the people coming and going.
I have a 2001 Acura that I bought brand new and it is a joy to drive even to this day. It is like an old friend as I have had it through a divorce, and loss of a brother, and many other difficult times. I don't get to drive it much anymore as I usually have my husband with me so have to take the van, but last night I just sat there talking to my old friend who again is with me through another tough time. I enjoyed the quiet, and the short freedom from responsibility. I have always been a bit of a loner, mostly because I lack the gate that stops me from saying what ever comes into my head, and then regret it later. But on the forum I can type it out and read it, then go; are you nuts? and erase it. I have always had the problem of speaking too quickly, or moving too quickly for my coordination, so I am often bruised.
The neighbor across the street goes to the same church as us, and works out of his house. He has offered to come over, and I think I will take him up on it and go to a ladies study group. I miss doing that, and I always had a hard time doing it with my shift work, and now I don't have that getting in the way.
Thanks Barbie for the prod.
Paulette