Status
Not open for further replies.

KSALScaregiver

New member
Joined
May 24, 2012
Messages
4
Reason
Loved one DX
Diagnosis
07/2008
Country
US
State
Kansas
City
Ft Scott
Hi guys, my partner was diagnosed with ALS almost 4 years ago. It was slow moving in the beginning but has really progressed in the last year. Forcing him to a wheel chair full time. His attitude towards others has went down hill, it is becoming a lot to take... He has two teenage (19 & 16) from a previous marriage and I have a 5 yr old daughter from a previous relationship. All of the children live with us along with his 50yr old sister who has been out of work for the last 8 mts.

I have quit my job and took a dramitic pay cut plus lost all of my benefits to stay home and care for him. I am now working for a home care facility, being paid to take care of him. I am paid for 40 hrs a week but work 24/7. After doing this for almost a year, I am starting to get very burnt out.

Is anyone else in a similar situation? and if so how do you deal. I despiratly need some help in coping and the closest support group is 2 1/2 hours away. With no other help caring for him that makes it impossible to go! PLEASE HELP!
 
Dear Caregiver,

It can be difficult to justify taking a personal break while your PALS is not ever able to take a break. For me, I justified my down time as recharging and being able to provide better care and attention after taking some alone time. If I didn't make this time for myself, it would have never happened. No one offered, I just had to plan it in advance with my PALS first, and then with other family members.

Start making a mental list of all the things you have to do and then put it on paper. Ask the other family members what they can do on the list to help out. Put their name on THE list by their new task and rejoice a little. Get the ball rolling and get those that help to shame the slackers. Difficult situations may demand some "tuff love". I wish I could offer more advice. I wish you some rest, Roger
 
Thank you Roger for the advice I appreciate it! I am in need of something! What makes me so mad is that, his sister and children think that since I am paid to take care of him that means I have to do it all of the time. And it is not just the care for him it is the cooking the house work the shoping, the errands. Everything! I go to bed at 12-1 every morning am woke u at least 1-5 times thru the night and am awake by 8 normally 7 am every day. The other house hold members go to their rooms around 9-10 and do not re appear untill approx 12-1 then next day then they come out get something to eat or drink and dissapear again. The most any of them help with him is to give him a drink or scratch what ever itches. It makes you think hell is freezing over if one of them feed him something.

Sorry I don't mean to be hateful, I am just filled with anger and frustration. We are struggling to survive on my pay check and his SSI check while they all lounge around and do not help. I feel like I can not even go get a second job to help financially because no one can help him. I am the only person in the house that can help him use the restroom, and the only one strong enought to move him from one place to the other. If I am gone or take a day for my self, once in the last two months, I was gone all day he stayed in the same chair for 10+ hours and did not use the restroom untill I got home.

Even when I have asked the kids or his sister to help, it takes them 3+ days to do anything. by then the trash is overflowing, or the grass is a foot tall and I end up doing it myself. My partner tells me to let them do it but how long do you wait? I have tried to wait them out, as a "tuff love" There was not one clean dish in our house. Their fix, wash what they wanted to use and put it back in the sink for the next person. So much for that... What did waiting get me?... a heaping sink of week old dishes! Yeah ME! lol

I have asked to set up a schedule so we could trade off nights of sleeping and what not, but everyone has an excuse as to why they can not stay up or even sleep in the same room with him. So again that falls on me. I know that he tries not to wake me up, but I still hear all of his frustiration sighs and movments, and outburst when he is trying to move or change the chanel on the tv. Yet I am tired an wore out and am expected to be this happy chipper smiling person the next day, when it all starts over. I feel like I am not allowed to have any frusteration or anger toward all of this, and am made to feel quilty when it shows.

I am looking for some much needed help!
 
Sounds like it's time for a family meeting! What is to prevent the 50 year old sister that is leaching off of YOU from helping? What about the 19 year old, is he/she in school? Both of them, at the very least should be handling the shopping, cleaning and house maintenance.

Can you call your ALSA and ask them to visit your home to explain to these people that you should not have to do 24/7/365 when they are capable of helping? What if you lived in a state where you could not get paid as a spouse for caregiving? Where would you all be then?

You are taking on more than you can handle and you WILL burn out. What about hospice, have you looked into that possibility?

Families! Most of us can relate with your story.
 
sounds like you are living with some very ungrateful and awful people. I am so sorry you are in that situation, but you need to take charge and don't let them take advantage of you and your partner.

The first thing I thought was what about his sister...geez. I don't mean to scare you, but are you married to your partner? if not, you could lose everything to his sister and kids if he does not have a will or made arrangements for your protection.

I would say they are definitely in denial about what is going on. You need to lay the law down now because sister it is not gonna get easier! Sis needs to either get out or get busy with his care or getting a job. I can't believe you are talking about getting a second job when their are unproductive adults in the house! And I am including the 19 and 16 yr old in that group.

YOu need to have a family meeting, tell everyone you are at your limit. His sis and oldest kid can take one day a week of care and one night also so you can rest. In my family, I like to cook so I do that every day even though I work. But my kids do the kitchen clean up every day. you should do that too or make all three of them take a night in the kitchen as well, maybe if each of them cooks and does the clean up afterward one night a week it will help out. OUr family does the house clean up together--we all do it as a group and the whole house is spic n span in about an hour. Even your 5 yr old can help with that. the older three can also do all the grocery shopping. And in our house, everybody does their own laundry. We don't sort by type, we sort by person.

You are the glue holding that family together, but you need help. If the sis and the 19 yo don't see that--they need to leave. seriously. I am pulling for you.
 
LOL Brooksea! great minds think alike!
 
My first thought was why isn't the sister helping in his care? Not to mention the kids helping out more with cooking, cleaning and shopping, driving, etc. Get a family meeting, with a schedule of chores and who does them each day. I'm really just OUTRAGED at his sister not helping. I understand the kids to some degree, but she is an adult and should be working as a team with you and her brother, not just parked on her butt!

As a matter of fact, I'm about to implement a schedule as well around here, as there's always an excuse for doing it "later."

Good luck, and stick to your guns! And if you aren't married to your partner, you better make sure that things are taken care of properly.
 
KSALScaregiver, it just really sounds like you are being used. What does your pALS have to say about all of this? Can he communicate?

Like Barbie and Helen said, you need to look out for yourself, as far as the will, etc... Wouldn't that be icing on the cake if you were left homeless and jobless...
 
Thanks guys! Atlease I know that I am not CRAZY when you all are telling me stuff that I have been feeling for a while. The thing is just getting the others to understand it and getting my partner to back me up on it! He seems to let a lot ride and tell me not to worry about it because he can no longer get up and o anything about it. So in return I just get to eat it.

As far as the Sister she just this week has started a job, and if I have any suggestions or ask her to do anything she does the complete opp. She hates me and is only living here because she has no where else to go. I know it sounds awful but if I had my way she would have been out on her bum quite some time ago. BUT she and his children are all my parnter has left so I try very hard to bite my tounge and get along. If I am talking funny it is because my tounge is getting short! lol. Her and I's diffrences came one night when she had been drinking which she can not handle and proceded to rant and rave for about 20min calling her brother a retard and telling him to get up and lift his hands knowing he could not. I tried to stay out of it and let them have their sibling rilvery but after 20min I could not take it I didn't say a word but picked up her beer and dumped it out she got physical and I pushed her she landed on her rear about 4 times and she has hated me since. In her eyes I had no right to get involved. So that is a big part as why I get no help from her because she looks at it that if she helps care for her brother she is helping me and she is dead set against that. And when she is lazy and non helpful so are the kids. I have a little more control over them but not much. And the attitude you get when you do ask them to do some thing is sometimes more than I can take. It is easier to do it myself and be mad about it than to deal with the attitude and the argument of the whole house.

As far as me and my partner we are not technically married, we are common law, we have filed taxes together and lived together for over a year, but have never had a ceremony. And yes I am not looking forward to the mess that will come when he passes, because it will not matter what is on paper or what he has set up if I am to get or if I say anything she is going to fight me tooth and nail. It is not going to be a peaceful deal. And I am not a fighter, I am too passive when it comes to these things.

When it comes to the others helping.... His sister has borrowed too much money in the time she was off so she is still not going to help financailly even when she does start getting paid because she owes too many other people money... those are her words, and she is to tired to go to the store or cook when she gets home from work then she has to go feed her horse. And the kids always seem to find things to do with their friends or go burrie themselves in their rooms, even if you ask them to come out and sit with him so you can go to the store or go outside and mow, as soon as he shuts his eyes they think he is asleep and they leave, so when I come back he is sitting in the living room by himself. Most of the time wiggling to scratch something or wanting to change the chanel, turn up the TV and cant, so then he is frusterated and guess who gets the blunt of anger.... When you ask them to go to the store they don't know what you want, or they can't remember the pin # for the debit card... the list is too long you just go...

Are all familys like this or just this one. I LOVE my partner but with all the anger and frusteration on both of our parts plus trying to deal and keep my cool with all of the other it is definatly taking its tole on our relationship. There are days, and they are starting to become more often, I just want to walk out the door and never look back. I have considered geting my own place and just coming over on my duty hours and letting the rest of them deal with the rest. But then when I look at the big picture the only person I am punishing is my partner. But after typing that maybe it would make him stand behind me a little more, forcing them to step up.

I have to say I am really thankful for being directed to this site to get some of this off my chest, and be able to get some positive responce and putting some more brain power in the brainstorm as to what I can do! I appreciat you guys already! THANK YOU!
 
How do you spell doormat? Oh yeah, your picture is next to the definition in the dictionary. Tell the sis that now that she's working, that's great! And she is now going to pay at least X amount of week to help pay the bills. Oh, and there's the door if you don't want to help out around the house. You LIVE here, you HELP out. That's it. Children need to do their chores, make a list and let them pick which 3 they will do each week. And make them do it! I find turning off the cable, internet, and taking away ipods and computers helps tremendously when they don't want to comply. Be encouraging and help team with them at first, but let it be known that you're helping them at first.

Also, you need to get a social worker to come out to your house and sit down with all of you. There's a hurricane blowing through your house emotionally... Does he go to an ALS clinic? They should have someone that can help. If not through there, then through your town?

I've helped lots of people by letting them stay with me while they needed help... somelu worked out with us, others didn't, and I told them they had a month or 2 to find a new place. If 19 year old is working, then s/he should be paying room and board as well. Even if it's only $25/week, unless they're in school full time.

Good luck and start making up that chore list!
 
KSALS, your plate is definately full. I am so sorry for all the heartache and grief these ungrateful people are putting you through. I agree with CJ, and Barbie & Helen...they NEED to help or get the heck out!...You have enough to deal with with your partner and they are making things so much wrose for you, You need to watch out for you, you need to get help or surely you will burnout and be of no use to even yourself. I will keep you in my prayers, and hope this will take a turn for the better and you can get some help soon. {HUG}
 
Well, it's your choice, but that may be a good idea about just being there for your duty hours. Perhaps you could get a room at one of those extended stay motels for a month.

As far as that sister goes, I would call the Kansas Dept on Aging and report abuse. She is out and out abusing her brother AND you! This could end very tragically.

http://www.agingkansas.org/LongTermCare/LCE/hotlines.html
 
Hi there! I am in Holland so i can't be of any help if it comes to support groups etc i wish i could! Remember you are important and deserve all support! You are important! First take care of yourself! I just want to show support, take care, wish i could help!

Anja
 
Honestly, I understand you want to help the one you love but you are in a mess and you NEED to stand up for yourself. Iwouldnot doubt sis is staying just so she can take the house and throw you and your daughter out when her brother dies. she is probably poisoning his kids against you. It is wrong of you to think they can just take everything no matter what. Don't be weak, you and your partner need to see a lawyer and get everything set up to protect you. if he is not willing to do that--well, I would definitely say adios to that family Now.

I know how upset you are and it is clear in your post that you are a caring and giving person but there no reason for things to be so out of whack in your home. Your last post sounds llike you are making excuses for them. As the "wife" you will always do the most in the caregiving dept., but why let them destroy you and abuse you? YOU have to take charge and make things right. YOU have to clean house and start by throwing out sister. If she can afford to feed and board a horse, she can afford to feed and board herself. stand up for your self ! Be a warrior!
 
I am in total agreement with Barbie...Amen to that!
 
Status
Not open for further replies.
Back
Top