Caregiver Support... really?

[Pandora]

I know that I will probley be jumped on for saying this, But I need to vent about a few things.

1. Is there really a "Caregiver Support fourm?" i.e. Caregivers only?

2. I sometimes feel I can't speak about the issues going on in my home due to not wanting to bring about PALS fears.

3. "Get well cards" really piss me off.

4. People who offer to help, then sit on my couch and suck up my AC, and not lift a finger to do anything to help, better off with out your distraction.

5. Socical Security won't speak to me about my husband and they can not understand him on the phone, so I have to have him deemed incompetent? B.S. And PoA is not something they take.

6. Family members who are too stupid to live, and too selfish to see what really is being done, everyday, evey moment.. and not by them.

7. When people say, "Oh you don't work, must be nice." Really... not work? I'm not sure what else you would call it, maybe slavery? How does that grab ya?

8. The friends that said, anything you need, give me a call. I call, and they are too busy or not at home, or really just advoiding my call.

Just a few things that have been on my mind....

 

[catcaniac]

Pandora,

Obviously you do live in the real caregiver world. You are not alone. Almost all of your statements are something I feel almost every day. I was just thinking the same thing. My husband's family has literally hundreds of friends who say all the time, "Let me know if we can do anything to help." Not only is there only son completely helpless and dying with this awful disease, their only other local relative (my husband's grandpa) is in the end stages of Alzheimers. When we had the hurricane last week, my father-in-law and son asked for help to clean up the businesses, numerous lots we have and the three house yards between us. Guess what! Everyone disappeared. I, like you, hate it when people say, "Well, I hope he gets better." Really, do they know anything about our daily lives and what ALS has in store for our PALS? I now do work out of the home but I would say that it is not as exhausting as being a caregiver 24/7 was a month ago. I just try to remember that people can never understand until they walk a mile in your shoes. Hang in there and know that you are not alone and the rest of us do understand your trials and tribulations. We also know that "helpful people" are usually quite "unhelpful and somewhat of a burden."

 

[LauraW]

I totally feel your frustration. That "list" of family members who wanted to help when Mom was first diagnosed...yeah well, there is only 1 person who helps...occasionally! AND the people who sit on my couch and suck up my ac also expect lunch and coffee but never bring anything over. Right, I don't have a job either. This is the only place I can vent. I do get what you mean by not offending PALS but I find the PALS on here to be understanding and offering a bit of insight. I have been wanting to start a "caregiver" support group and my local ALS Org is helping me but they want to "combine" it with PALS. That is not ok with me! I am not going to bring my mother to a group where I need support for "me". I think I am going to try to start my own for all caregivers!

 

[TomsSIL]

I hear you! I've been in the caregiver world for only a few months, but it might as well be longer. It's constant, overwhelming and maddening. Everyone who offered to help hasn't. We've had the people from the church try to tell Tom that if he just accepted Jesus into his heart, he'd be healed. His former boss said that he would give him his vacation pay and hasn't. It goes on and on. It's like swimming in quicksand, isn't it?

 

[Jane]

You sure find out real quick who you can really count on when you become the caregiver. Laura a support group is a great idea. When I was doing the group I found that it was difficult for caregivers to come to meetings without PALS cause who is going to care for them, not the people who said just call if I can help!
One idea might be to set aside time during the meeting to divide the group into caregivers and PALS and give each group time to talk and then bring group back together. ONe other thing that might work is to plan just one meeting periodicaly for CALS only, takes a lot of planning time for CALS to get care for PALS set up.
Good Luck with the group it is really needed even if it must remain a group of CALS and PALS

 

[wles]

I so totally agree with everything you have said. I too hesitate to say anything on this forum because of what the PALS might think. I wouldn't want my PALS knowing what I was venting about. I wish some of my friends who say call if you need anything, would just call me and ask how are you...I don't have time to be calling and I really don't even know what to ask for.

 

[caldona]

LauraW you are a way to nice there would be no lunch and no coffee if get thirsty there is always water. My xhusbands nephew brings stuff into us my family or my present husband family so far doesn't do anything my sister lives 12 miles from me Wal Marts is two blocks from me and it's probably been more than a month since I saw her then it was a few minutes she calls about once every two weeks and when she leaves she will say well sis I hope you get to feeling better my three brothers are not much different they are all within one hour from me. Isn't family great. I think they don't have to accept what they don't see.

 

[Barbie]

I suggested to our local ALS chapter that they have two meetings at once--one for the pals and one for the cals. Then if the pals needs you you are only across the hall. I agree--you can not always open up for fear of offending and perhaps a pals feels the same way. I am sure they would like to complain about us too! (didn't happen but I thought it was a good idea)

It is a shame that family especially drops out of sight for pals and cals--is it our society that is so afraid of death and suffering that we have to run away just when people need you the most?

 

[sadiemae]

There is a Caregiver Support group on F B. It is a "closed" group, so no one but members see it. It is by invitation only, if interested, give me a PM with your F B info, and I will "invite" you in.

 

[HelenL]

My local MDA ALS group divides the CALS and PALS at our meetings, and we come together for a few minutes at the end. You're right, you don't want to hurt someone's feelings for venting, but you NEED to vent!

On a similar note, I just read a great article in the Reader's Digest called "The Quiet Crisis" by Jonathan Rauch... it was first printed in The Atlantic... great story, but multiply it by 10 for caring for someone our ages not just the elderly. I think this link may work if you want to read it.
Articles by Jonathan Rauch: <b

 

[Tom's Support]

Thanks for saying it.
I agree that the fear of death is a big suppressant for any type of help. Friends don't call because they are afraid of not understanding, like being afraid of being stupid. I usually try to sit in on visits so I can translate, but Tom takes offense -- they are HIS friends, not MY friends and I am to leave them alone. Oh, brother! The ones that do call in are awesome. What they are willing to give is entertainment for Tom and that buys me time to actually DO stuff -- shop, housekeep etc. this is priceless to me.
As for the rest of it, I am hoping to actually have a life after.
As for family, well -- everyone is very busy running their own lives, I get it. Or, they are in denial.
I almost laughed, Tom's sister saw him at Christmas and went home and cried for days. "He is so thin and frail"
PU-LEASE!
Where have you been?
You are awesome, you have understanding here; you haven't been jumped on yet because we all get it, we all live it.
Walk in peace (or pieces depending on the day)

 

[Jason's Dream]

Thank you for saying all the stuff I have been feeling.

The other day his Aunt Becky (which we haven't seen since the birthday party back in May we invited her too) actually visits for the first time in AGES.. said "He looks good"... she of course, talking to me like he isn't in the room... second... he looks good? He is on oxyen, can't speak to you, can't lift his hand to push his glasses up on his nose, can't feed himself and chokes with food and drink, has to have morphene 3+ times if I make the monumental task to have us go on date... yet, he looks good? Are you out of your mind?

I love the question, "Is he any better?" or "How is he doing?"... How do you think he is doing? No, he isn't getting any better.. its called dying folks, there isn't any better.. this is it. I mean, really?

So his grandpa (which hasn't shown up in months, has someone come with him to hold his hand cause its too hard on him), and his Aunt Becky has also shown up after months of being MIA.. they both ask, anything we can do... REALLY? Look at the weight we are burdened with DAILY, we have a household of 5 to feed, 2 house payments, 2 car payments, his hygiene products dont grow on trees, you know he loves to read books on his nook which costs money, i am buying flowers to put in his room and movies for him to watch that also costs money, the wipes to wipe his butt costs money, not to mention taking care of our children... but you don't offer your money or your time... As if it isn't readily apparent, and of course, I am not going to be begging from people that don't care about HIM, or make it about HIM... I tell them, visit more.. yeah yeah, nod nod, wink wink, will do that... and yet they won't visit for MONTHS.. well get this peeps... by the time you guys think to visit again, he's gonna be dead! I don't have time to hold your hand through all this.. freaking grow a pair and be there for him... here his Grandpa raised him.. you have a scared young man in there facing death... you don't think he might want you to be there?

Sorry, in the worst mood right now...

We are now into September.. today being the last holiday of a Summer that has come and gone and I haven't had a chance to enjoy one iota of it.... not to mention September , well... back in May his ALS doc said, based on his progression, he thought 4-6 more months life expectancy... that would bring that to September-November.. now understand my funk? Its like we have had this dress rehearsal all this time and now it close to the final curtain and my heart is breaking, yet it still is hard all the time being in a holding pattern.

Right now I wish I had a basic room with umpteen things I could just throw at a wall and smash and break things... I'm soo angry and no.. no one gets it.

I don't know who I am anymore, or why I bother.

Today was Labor day and there is no hospice?... I don't get this... when do us LABORERS get a day off?.... and if anything, shouldn't hospice have more people on staff to make sure that the hospice patients enjoy thier final holidays and thier families actually get some relief?

Sorry,.. must have been dreaming.. won't be doing that again anytime soon, thats for sure.

 

[Iloveocean]

I believe there is a form you fill out for Social Security. We did it over the phone but I know you can mail it in also. That way you can have access to your husband's information and make changes etc.

 

[Jason's Dream]

As far as SS and being considered the payee (due to them not recognizing POA), its a little more involved then that:

They give you a paper, then they fax a paper to the PALs doctor to sign saying the PAL isn't competitant to be the payee that the doctor then faxes back to SS. Once they get that paper back, then they send you another paper you take to your bank, and either the bank notes on your account that you are the payee, or you have to set up a new bank account for this. Once you do that, then the original paper they handed you, you can fill out the bank and account information and turn that in, then they send you something stating that they now consider you to be your PALs payee.

Hope this helps.

~ Becca

 

[susanf]

You are all saints. I told my husband expect nothing from anyone. When I brought my Preemie daughter home with a heart monitor 12 years ago, not one person called to see if I needed anything. I doubt they'll lift a finger to take care of me.