Feeling hopeless/helpless/useless

[kelly]

work camp

I totally agree about having family and friends help around the house. We joke that our house used to be called the Ragan Resort...now it is Ragan work camp. Amazingly all our neighbors pitched in and mulched our whole yard and pitched in for a lawn service for the summer. Thankful for small miracles everyday. Also, thought it was so interesting about the life insurance..would be a huge relief to reduce our mortgage. It is a small policy..but every little bit helps. for all the other caregivers....I finally have had to say yes to help. I hate it..but it really has reduced some of the stress that occurs on a daily basis. Fondly, Kelly

 

[checkmat2]

thank you

Great idea, I will use them.

christina:-D

Christine- if I had a steady stream of visitors I'd put them all to work. :-D I'd start out small, like having them prepare the PAL's meal or bring some milk and bread on theier way over. But before long they'd be doing his laundry or taking the kids for the afternoon. Any that were still willing to hang out after that, I'd hand them some cleaning or gardening gloves! :-D

Better yet, I'd start by asking the very next visitor to stop and get some take-out to feed everybody. You might want to keep these guys around. Someday you will need to teach a couple of them how to clean a vent or feed via a tube. Maybe you should ask hubby who he wants to do some of this.

 

[checkmat2]

Wow

Everyone has wonderful ideas and has helped me to feel so much better, today I had a better day.....My husband had to go to his Mother's for the day, because our electricty was out for the day and he is on oxygen 24/7.......so they all visited him over to her house...and this evening our good friend, who we have not seen in a while come over to visit but was willing to help out around the kitchen.......thank you all.

Christina

Rather than viewing his family as the enemy (don't take me wrong, I've got the same issues with some able bodied in-laws too!), I would try to picture them as people that are just clueless as what to do about their poor brother, son, etc... I then would play the scene as follows:

Oh, "Jane," I just so surely wished that when you came over next you would bring some of "Joe's" favorite ______ for all of us! That would be ever so wonderful! And I know"Joe " would be so appreciative for your loving way! If only the other family members were as thoughtful as you!

I would do this to every single one of 'em...and change it up to include chores and errands. Let the party begin! Soon you will be seeing less and less of them. Only the ones truly interested in his well being will remain steadfast. (unless they are total jerks) and I would hope some of them really are interested in your husbands well being.

Well, just a thought!

 

[checkmat2]

Thank you

That is going to be my next project.........and then payoff some bills....maybe then I won't have to see my house.

Christina

Checkmat2 - Absolutely, I think you should follow up with your insurance company...you may want to even skip your agent because s/he may not even have any experience with this type of request. If you feel the need to supply your insurance company with reasons then all the reasons everyone has listed are precisely the reasons you should state in your request...and then some. Of course, it's sensible to pay off/down mortages, etc. but the insurance company cannot tell you what you can spend it on...you can get your advance and go on a vacation to Hawaii, if you want! It does not make any difference what you want the money for. You will have to supply the letter/documentation from your doctor...and then it should be a done deal. The way ALS works everything is a "guess-timate" - make your lives less stressful and apply for the money and put a plan in motion. Good luck.

Louie
Former CALS to husband, Jeff (Grumpy Old Coach): 7-5-2007

 

[nurburch]

living in the same boat

Hi! CJ,Andrea, Christy, Christina,

Wow, what an eye opener.....I am so thankful for this wonderful forum to learn about
ways to help with the daily stress of ALS. I am so going to look into the ins idea. My
husband was DX in nov 06 and has steadily progessed to wc bound and no monments, but still can eat ok. He is on his bipap at nite, but I have noticed slight changes in his
breathing. It is good to know we are not alone in this terrible jouney that is ALS. My
husband too paid into his own pension and cannot get disability or ssi, but was appr.
for medicare. He was a deputy who is now dependant on me and our three kids (15,13,9). What a rough road for us all. I go to work at nite and cry to relieve the
stress. I thought that I was the only person who has issues with not accepting help....my friend has suggested hospice, but I as a nurse wasn't ready for that.
Are you all to trying to maintain some sense of reg routine for your kids? I have
the jobs of wife, mother, driver, worker, and friend to others. Iknow I need some
time for myself, but that is difficult to do. I too wish we could all get together to
talk, visit, but this will be wonderful. Are any of you trying the lithium with rilutek?
I am afraid to start that at this stage of progression. I have read where it increase
changes? Any thoughts would be appreicated. thank you once again for sharing
your lumps and bumps in the road. May you all recieve may blessings you deserve.

Sheryl wife of scottie.

 

[lisamk]

It is so upsetting reading these posts sometimes. I can't believe how unbelievably awful and unfair this disease is. I know we are only supposed to get what we can handle, but sometimes it is so overwhelming. Whimsy, I am so sorry for what you are going through and all of the other caregivers out there. There really aren't any words. I just wanted to tell you that the Hospice homecare was a God Send for my mother. I hope that you look into it and it helps you. We too, were not aware that hospice had a division that was for ongoing care rather than helping people through the final stages. They would come in 1 hour, 3 times a week to do various things. It wasn't so much WHAT they did as just having someone else there to relieve some of the duties and also the social aspect ended up being VERY good for my father. They were very good at understanding him because they are used to dealing with people with various ailments.

My father has ALS,. going on 10 years now so it was a slow progression, but he sounds to be at the same degree or alittle worse than your husband currently. He no longer to lift his arms so he must be fed each meal, can no longer go to the bathroom without assistance or walk so he is confined to a wheelchair. We can barely understand him and it is VERY difficult on my mother from an emotional and physical standpoint. I live less than a mile and try to help as much as possible, but she catches the brunt of it. He gets angry and frustrated very often. And it is getting to a point where she is not sure she can physically do it any longer. She is carrying a tremendous weight and feels terribly guilty. I guess no matter how much you do for someone, you feel it is never enough. Each step takes adjustment. I cried when I read about you crying while changing his bedside cammode. While I can't relate on the caregiver level, I can relate on watching someone you love deteriorate while feeling helpless. I can remember crying quietly everytime there was a noticable change. At first when he was walking but having difficulty, he had various falls requiring stitches , bruises, black eyes and broken ribs. Then when swallowing became and issue, he would choke all of the time. Seeing him struggle to lift an arm just to scratch an itch or blow his nose...all of those little things we all take for granted. Everytime some part of him is taken away, it's like a knife in my heart. Now all he can do is sit and it's a struggle for him to even move his fingers to operate the electric wheelchair. Its difficult enough watching something terrible happen to a loved one and it's even more difficult to have to be the sole caregiver to that person as well. It's an overwhelming duty and I hope you listen to the very excellent advice given and make sure you take care of YOU as well. Reach out and take hold of any help that is offered. When people offer to help, they usually really WANT to help, just don't know what to do so if you are lucky enough to have any friends or close relatives who say they want to help, give them something to do. They will feel good about doing it as well. God Bless - Lisa

 

[checkmat2]

Nice to know you are in my boat or all of our boats

I just wanted to share, I too worked for the Sheriff's Dept......I trained Newbees....I am currently trying to back, I currently work for the CA. court system, it does pay as well as the SO does, so if and when it is going to be my responsibility to pay all of the bill including the mortage, I want to not be stressed over money.

Christina
Hi Christy......and Andrea and CJ

Hi! CJ,Andrea, Christy, Christina,

Wow, what an eye opener.....I am so thankful for this wonderful forum to learn about
ways to help with the daily stress of ALS. I am so going to look into the ins idea. My
husband was DX in nov 06 and has steadily progessed to wc bound and no monments, but still can eat ok. He is on his bipap at nite, but I have noticed slight changes in his
breathing. It is good to know we are not alone in this terrible jouney that is ALS. My
husband too paid into his own pension and cannot get disability or ssi, but was appr.
for medicare. He was a deputy who is now dependant on me and our three kids (15,13,9). What a rough road for us all. I go to work at nite and cry to relieve the
stress. I thought that I was the only person who has issues with not accepting help....my friend has suggested hospice, but I as a nurse wasn't ready for that.
Are you all to trying to maintain some sense of reg routine for your kids? I have
the jobs of wife, mother, driver, worker, and friend to others. Iknow I need some
time for myself, but that is difficult to do. I too wish we could all get together to
talk, visit, but this will be wonderful. Are any of you trying the lithium with rilutek?
I am afraid to start that at this stage of progression. I have read where it increase
changes? Any thoughts would be appreicated. thank you once again for sharing
your lumps and bumps in the road. May you all recieve may blessings you deserve.

Sheryl wife of scottie.

 

[JACKIEMAX]

to all caregivers from jackiemax

i think God led me to the forum this morn. i have not been on in a good while now. i have been bogged down with self pity, feeling helpless and hopeless, and feeling that i had no help from anyone, that none of mine or his family had a clue what we were going through, etc. etc. and then i come to the caregiver's sec. of this forum and read my thoughts over and over in this, esp. with whimsy's beginning feelings and the following answers from other caregivers.

my husband's drs told me months ago that he would only live 'maybe' a year, then they said 'a few months', then a 'few weeks', and now he is bedfast, cannot feed himself, has to wear diapers and use a urinal which he can barely hold now, and it seems i am constantly changing and cleaning him, putting water and prune juice in his peg tube, feeding him, etc etc.

yes, he'd do it for me, and he's not a burden. but i get soooo tired and am exhausted most of the time. his quality of life is nothing, and now, i guess i have to say, neither is mine. thank all of you for sharing your identical thoughts as they have helped me this morning.

jackiemax

 

[gagirl]

Count those blessings

I fully believe that God has brought us all together on this forum. Even though I would not wish this monster disease on anyone, it is so comforting to know that there are people out there having the same emotions and experiences as I am. I mourn daily for the life that my husband and I have worked so hard to plan for that will never be. And if I try and think too far past then next day, I become an emotional wreck fearing what will happen to us through this journey and what will happen to me when I wake up alone one day. But I have a strong faith that God, friends and family will see me through this. And I know why God chose my husband to experience this. God wants the good ones, so I understand because I want him too. And I know that he will be healed the day God takes him. When ever you feel overwhelmed or down, dig deep and look for the positive in every situation. This is life and life is hard. Believe it or not, this is not pushiment, it's a journey and only God holds the master plan. He knows what we want, and unfortunatley it's not always what is in His plan so he will send what we need to do what we have to do.
Love, strength, and support to all you care givers like me.
Windy

 

[brooksea]

jackie

You hang in there woman!

Don't you get so down! Know that there are others thinking about ALL of us...

I wish I could come up there and give you a BIG HUG!

Reality knocks on the door one day and we have to answer it! But, we don't have to give ourselves over to it! We have to fight for everything and I mean everything!

Please let us know how you are doing and don't stay away from the forum, we need you girl!

 

[checkmat2]

HI Jackie

Nice to hear from you.......Hi to all and Christy, Andrea, and CJ.....

Jackie,

This is a great place to start, sorry to hear about your husband....mine has ALS tooo...he is 45 years old and on bipap machine during the night and ventaltor during the day.....things this week seem to be kinda better......we just found out on May 7 regarding his condition.....it's hard but keep coming back to us and venting, it's a great place to be.

Christina CALS for George

i think God led me to the forum this morn. i have not been on in a good while now. i have been bogged down with self pity, feeling helpless and hopeless, and feeling that i had no help from anyone, that none of mine or his family had a clue what we were going through, etc. etc. and then i come to the caregiver's sec. of this forum and read my thoughts over and over in this, esp. with whimsy's beginning feelings and the following answers from other caregivers.

my husband's drs told me months ago that he would only live 'maybe' a year, then they said 'a few months', then a 'few weeks', and now he is bedfast, cannot feed himself, has to wear diapers and use a urinal which he can barely hold now, and it seems i am constantly changing and cleaning him, putting water and prune juice in his peg tube, feeding him, etc etc.

yes, he'd do it for me, and he's not a burden. but i get soooo tired and am exhausted most of the time. his quality of life is nothing, and now, i guess i have to say, neither is mine. thank all of you for sharing your identical thoughts as they have helped me this morning.

jackiemax

 

[beaner1]

Hello to Jackie and all other caregivers.
We can all relate to the "tired, exhausted and depressed" - I think every single one of us feels the same way - please know you're not alone! I try and read this forum at least once a week - I don't feel so alone afterwards. Hang in there Jackie (and everyone else!) - we're all here for you, and my thoughts and prayers go out to you.
Beaner

 

[whimsy_1971]

Hi all

Just want to stop in and see how everyone's is doing.

It's been a rough few days here. Finally got my husband to the ALS Clinic in St. Louis.

I will say this there were some very nice people there. We meet this wonderful man named Alex. He helped me unload my husband and wheeled him into the Dr. Office for me, and then helped me get him back into the vehicle and then put the wheel chair in the back of our vehicle, and even put my bags in there too.

We have never had that much help. I have had people staring at us when we are trying to get into our vehicle instead of asking do u need anything. By the time we get him in we are both out of breath covered in sweet and almost in tears. It is amazing how someone like that can make your day go so much easier. I could not thank him enough. He responded to us in the kindest words ever. He said he does this in memory of his brother. I almost lost it. I just wanted to rap my arms around him and give him a big o hug.

When we visted the other branch there was no one there to help, no valet parking(which by the way was only 3 dollars, cant beat that). Heck I had to get David out then push him inside of building then go back to vehicle and then park it almost a block away then walk back and find Dave and then do that all over again when we were finished.

It is the little things that mean so much to us. It's to bad there not more of that out there with the kindness I felt that Alex had.

I hope your everyone's spriits are up today and I hope everyone is doing ok at leat for this day and hopefully for many more.
I hold all of you close to my heart. I am so glad to have you all here.

 

[brooksea]

You are right Christy! It is the little things that mean so much! And most of the time they come from people you barely know.

I'm glad you had a better experience at the new facility!

Wishing us all good thoughts!:mrgreen:

 

[checkmat2]

Hello to all

Hello, CJ, Christy, Andrea and Jackie......everyone else.

Well today my middle son graduated Middle school.....my husband did make it to the graduation....he even had his air off for most of the day....that was big.

Love ya all
Christina