Such a naive cals

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ruthiep

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Feb 28, 2011
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174
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Loved one DX
Diagnosis
01/2011
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US
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AL
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I'm shocked at how naive I've been as the wife of a PALS. Even though my husband is doing good and apparently slow progressing (not bragging), I'm shocked at how much this disease has impacted our day-to-day life. Scoot will be retiring at the end of this year and I continue to work full time while trying to maintain household crud....UGGH! He's progressing nonetheless and I'm left to pick up ALL the slack. I get tired. There are simply things he can no longer do~ We finally had a "come to Jesus meeting" over the yard work when he thought I should learn to edge the front and back yard with a weed eater! I finally had to tell him-HELL NO"! We CAN afford somebody to do the yard and I absolutely was not doing it. I don't mind picking up the slack to a point...., however! Despite joining this forum right after he was diagnosed, I still feel like I'm clueless! Once again, I wanna send out kuddos to those that have walked before me on this path and those that are journeying with me! I know I'm strong and will be able to handle what's ahead, but it's scary and daunting nonetheless! Hugs and luv to all!

Ruth
 
Welcome to Big Girls Panty Club!
 
Yeah. Pull those panties up way high!

Just know that your panties or priorities are not gonna be his. It will probably irritate the hell out of him that it's not being done the way he would, whether you hire someone or you do it yourself. Not only will you have to take care of his previous "duties," you will also eventually have to take care of his every need. You will "become" him.

I didn't have time to figure out how to do yard work (besides cutting the lawn). Now I do and I have found tools that I can handle. Forget the gas powered monsters and thank God for the inter.net!

I agree! HIRE someone to do what is too much for you! It still gets done, doesn't it?

I wish you the best! We are here for you!
 
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Oh Ruthie! My husband's favorite sentance is "we can do it ourselves" ...it makes my blood boil. because he could do something 5 years ago I was supose to do it now. I like what cj said--you will "become" him.

I admit, I did try to do all the things he wanted me to do, and sometimes the kids still do (when I am not home to intervene). now I just put my foot down--I am one person and so are you. you do the best you can anddon't feel bad about hiring help.

Hang in there girl!
 
Ruthie,

Hire the yard man and hire a housekeeping service. I did retire this summer and I am busier now than when I was working....my new duties include medical management.. Appts, schedules, pt, medicine supervision, ordering supplies, bandaging, massage, navigating the VA, UCSF, daily bathing needs... Add to that: dishes, clothes folding, putting them away, dog training and babysitting marvelous Maddie so he can see her frequently, lawyers appt while we finalize legal and financial issues, and I can't forget taking him with me everywhere Because he doesn't like to be alone for more than an hour, chauffeuring, poop duty, trash duty and mess clean up.....we had a session with the therapist who finally got him to understand that I still have a full time job. He will continue to pay for the gardener and housekeeper since he doesn't want to hire a caretaker. Thank goodness his sister will be here sat/sun so I can get away overnight. The roller coaster is picking up speed!

Hugs,
Jen
 
you will "become" him - very true. And trying to be 'you' will get harder and harder. First two years were a party for us, looking back from where we are today...Preserve energy, much more is to come...
 
Get as much help as you can afford. That is the one thing I would do differently. I would have gotten people to come in and help me, earlier rather than later.
 
Ruthie you hire someone for those things if you can afford it. You are tired! Love you hon
 
We can do it ourselves is my husbands mantra to. Yes...we could..when we were younger...when we were stronger. Now we cant. I agree with everyone else. If you can afford it hire it out. Remember your time is worth something to.
 
Ruthie- I can understand completely what you are going through. My mom was diagnosed a little over 2 years ago and it was pretty aggressive. She lost her speech first and the physical part has deteriorated to the point where she can't do anything for herself anymore. We have to lift her from the wheelchair to go to the bathroom (she will not use a catheter) and everything else. We hired an aide through an agency, but the three that we found so far were horrible. I don't know what to do. I am at my wit's end. My mom was the one who took care of the yard and everything else. My dad is here, but he works from home and seems to be out of town more now than ever before. That leaves me and my aunt to take care of her when he isn't here. They hired me to work for the company but it seems like he really hired me to take care of her because he is never around. I don't know what to do. I have a brother but he has a wife and 3 kids so he doesn't seem to have to do as much as I do. I love my mother and I know she would do the same for me, but I feel so guilty when I take the day off for myself. It is really taking a toll on me and him. If there is anyone in the MD area that knows of an agency that does home aides, I would love to get the number. The agency we got can't even find aides that can lift my mom. Kind of a necessary thing at this point!
 
Joni, I am so sorry to hear about Bruce. I don't know you or him, have never been on this site before, but I am praying for you and I know he is looking down at you and smiling...and walking...and laughing
 
As many know it wasn't until after Glen passed that I realized how much damage I had done to myself physically thinking I could "do it myself." Now... I CAN'T do most of it, and while Kev picks up the slack around his school/work/girlfriend times, we jokingly have a "staff". Cleaning lady comes every other week...does floors, bathrooms, etc. Pool man and gardener come weekly. Dog poop guy also comes weekly, and makes a point to stop and chat. Feels good to know someone is checking in on me! The house looks better than it has in years, and I no longer get nasty notes from the city about how bad my house looks! It really is a great gift to give yourself!
 
Ruthie - get all the help you can whether it means hiring somebody or having friends come by to help with things. There's always so much to do - some "man" jobs and some "lady" jobs is how I put it. And when we do it all and more, it's tough. You're doing an amazing job taking care of your husband and everything else. Good job! Yasmin.
 
Ruthie, I am so glad you posted this. I was just lamenting a few days ago how far Dean has progressed in the past year. We are getting ready to move and I'm doing it all. He sits in his recliner and watches TV and naps. I know he would like to be helping me but he knows he can't. We have professional movers coming to move everything. After reading your post, I'm going to make some changes. I'm going to quit doing it all myself! First priority is maid service every other week (thanks Katie). I'm going to hire a LPN one day a month (has to be LPN because of feeding through the tube) to give me a day to just get away, shopping, hair, nails, movie, whatever! Ruthie & Katie, you inspired me! Thank you. Ruthie, I hope you can follow through and do for yourself as well. As fulltime caregivers, we deserve it! Don't let anyone ever tell you we don't.
 
My dad is also in the "we can do it ourselves" group, or at least we were.

The first year of dad's diagnosis I was plowing all the snow cutting all the grass doing all the maintanance of the house etc. Now I find mowing the grass relaxing so I continue to do that. We are hireing somone to take care of the snow and my brother helps me with the maintanance of the house.
My duties inside have also expanded I do amost everything for my dad except take him to the bathroom. Mom and I pooled our pocket money and hired a lady to come in and vacume once every 2 weeks. We do the basic things but she does a deep down cleaning. It took us a while to realize that we couldn't do everything. And don't worry your not the only clueless one out there. We are all on a learning curve when it comes to ALS.... everyone's on that curve, because this disease is like no other.
 
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