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GRM2008

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Jun 29, 2008
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32
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Lost a loved one
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US
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NY
City
Massapequa
I joined this site when Mom was first diagnosed in June of 08...she is 72......i haven't posted since that year......this disease has just steamrolled itself into our lives....i feel the need to connect with others experiencing it too, and maybe even help someone else? i am so very stressed.....i am the oldest of 3 daughters, we are very close....i just turned 50......we all work full time, and have young children, and the closest of us lives 45 minutes from mom...i am 2 hours away....i am divorced, the other husbands work weekends......we are blessed in that Mom and her partner (not married, but let's call him StepDad) have some financial resources (he has more) to hire a caregiver during the week...but we go on weekends to save them money and because Mom needs us there...StepDad is disabled, so he cannot care for her, nor she for him (although she had been HIS primary caregiver until ALS struck)......they never married, because StepDad's adult children would never have allowed it.....you know, money issues, etc.....Mom never pushed for marriage, or any of his money, she just wanted companionship and love...there has always been resentment on the side of StepDad's kids toward us, over the fact that their Father and my Mother purchased a home together.....and yet, these adult children have good lives, earn nice livings, no one is struggling....their Dad owns a beautiful vacation home that they go to every summer, all summer, with their kids and spouses....and StepDad buries his head in the sand when they are cold to my Mom and us, and Mom doesn't demand the respect she deserves......so when ALS hit, what began as going there on weekends, every weekend, for moral support and initially with shopping, cleaning, for them as Mom's limbs weakened, has become full blown caregiving with 2 of us needed there every weekend to help move her, bathe her, feed her, do the laundry, clean, etc.,........we are learning to use the hoyer, and mom is on a ventilator......but even though we are "only" there on weekends, it is taking its toll on us physically and emotionally because of our jobs, our kids, and the responsibilities we have in our own homes.......having to relocate kids, pets, etc. every weekend.......but we don't complain (only on this site!), we go and give Mom our support and care every weekend, as well as serving meals to our Stepfather, doing his laundry, changing his sheets, etc.....here's where i want to scream: StepDad's kids are resentful that their Dad is helping to pay for the caregiver (who takes care of their Father too, not just Mom) because they think "Dad doesn't need the help"... they are clueless as to what he needs (they never come up to help), and now they say my sisters and i should be there MORE to save their Father money! HELP! i'm so angry.....
 
That is a very sad situation with the other kids only being concerned about the money. Ignore them as best you can.

In the eyes of the law it makes no diference if they are married or not, they are a couple. You do what you have to in order to take care of mum and stepdad. The other kids will just have to accept that.

My heart goes out to you!
 
Thanks. I appreciate your response. I know that we should not be concerned with what people THINK we should or could be doing for our Mother. No one else is walking in our shoes. What matters is that Mom knows that we are doing the best we can, and that's all we can do! It's so frustrating to have to deal with people who are clueless and yet seem to have all the answers! I hope you have what you need for your journey here. Thanks again.
 
Oh that is a rotten situation! People always shock me! I know it is hard, but you already have a full plate, so dont waste your time being angry hun. To you, THEY should not exist. Just go about your lives doing what you are doing. You must be tired too. Can you at least get help in there on 1 day of the weekend to give yourself a break? Or a full weekend a month? I can hear the exhaustion in your words hun. Gotta take care of yourself so you can take better care of mom and step-dad. I am guessing that he never stood up for your mom around his kids because he just didnt know what to say. They sound like really strong personalities. Ug, you poor thing! You know though, you are the lucky one because you are getting the chance to spend more time with mom. When their dad dies, the ONLY thing they will have is the money, and not any memories of spending a lot of quality time together. What they sadly don't realize is that the time together is priceless.
Hang in there!
Kari
 
It is amazing how many families cause heartache, either through indifference or through meanness. We beat that issue to death regularly here. But every time one hears another story it takes your breath away.
You can only pretend they never existed and do not exist. Ignore their meanness and try not to have contact with them at all and get on with the wonderful job you are all doin for your mother. Yes, it is hard, but that is the nature of the beast. You have the right to be proud of living with that problem and overcoming it out of love for your mother.
Do not give those others the power to make you angry or sad. Cut them out of your horizon
Love
Irismarie
 
Thanks for all the input....so many people on this site have a much tougher time than i do and now i feel guilty for venting.............I know that it would be great to get more help on the weekends and we do have family that pitch in about once a month on a Sunday afternoon....the problem we have is that as it is now, Mom thinks that because we "only have to do weekends", it's not really that tough for us .........we usually arrive Sat. afternoon and stay until Sunday around dinner, so that 24/hour period saves them a day of caregiving costs......others might look at our situation and say "well, you are only there from Saturday afternoon until Sunday at dinner" but what people don't realize, nor does Mom, is that the process of being there Sat. afternoon starts early on Sat. morning when we try to get our own things done (because of having full time jobs and kids), then we do shopping, cooking, then pack the car, and then for me, drive 2 hours to get there in traffic, usually....at times, when me or my sisters (who live 45 mins away) have gotten there a bit later than usual, Mom will comment about it.....she doesn't understand the hoops we are jumping through to manage this constant weekend schedule of caregiving for 2 of us to always be there.....once when we tried to discuss the situation with Mom (about getting more help on the weekends), she got upset and said "I don't want people to think that my girls aren't taking care of me".....and she has done so much for us all our lives, how can we possibly need help caring for her?......so we are caught between wanting to give her what she needs from us, and then feeling resentful, and then feeling guilty for feeling resentful!............it's so tough to manage these emotions....
 
GRM2008
I have no answers, just symapthy. From reading your post it seems your are doing everything you can so don't be too hard on yourselve. Your Mom is very furturnate to have loving, caring daughters who will go out of their way to be of such great help. Not everyone will do that as is evident by your stepDad's kids. ALS takes it's toll on everyone. It's not just about your Mom or you. You have your own family to think about and their well being. You can only do what you can do and you are doing more than most. You are doing a great job! Sending you nothing but the very best wishes.

Jim
 
GRM2008 ALS IS A FAMILY DISEASE! You have every right to be frustrated, resentful, overwhelmed, angry and exhausted. We all cycle through those emotions. :] The other issue is that "sometimes" PALS become very self centered [I have faced this a time or two with my sweet husband] and they simply need a reality check. My personal opinion is that with most terminal diseases it just lends itself to going within and their world becomes very narrowed. You will need to find a way to take care of yourself or you will be burned out. Is there any possibility that you and your sister can have your Mom come and stay with you on alternate weeks or weekends? I know that is a stretch but still, then the responsibility of the care of her partner becomes the responsibility of his children. That should open up their eyes! It is a huge undertaking for you to do this every weekend!

Families....as irismarie stated above are a constant source of pain and difficulty for many of us. It gets even muddier when there are "steps" involved. I soul understand that part of it. I won't even waste my time telling you about my horrible step children. HORRIBLE! My advice is to not give them a second thought, TAKE CARE OF YOURSELF and your family first, your Mom next-let go of the guilt and make every effort to find a way to compromise so that you all have quality of life. Why should you care about saving money for this man's children? Girl, SPEND IT! I bet if you refuse to go every weekend he will find someone to cover! sending you courage this morning from the Prairie!
 
Thanks for the feedback.....i feel as if no one really knows what we are experiencing except other families dealing with ALS.........the problem with transporting mom to any of our homes is that our homes cannot accommodate her -- we don't have hospital beds, we cannot drive her anywhere unless we rent a wheelchair accessible van (and that gets expensive), our homes are just not equipped for her wheelchair (no ramps or wider doorways) and also would need to transport her ventilator, cough assist, etc.............and i'd still have to travel to my sisters houses or they to me............so the best thing is for mom to be in her home, i just wish we could have a caregiver in place for the weekend so that if we each have something we need to do with our kids at home, we could choose when to travel out there to Mom's instead of being locked in to a schedule every weekend...i might have to figure out a way to do this, because it is taking its toll on me....not to mention gas, tolls, and the wear and tear on my car!.........i have constant fatigue, my back hurts, i wake up depressed and stressed and stay that way all day...........i am now starting to get a little concerned about my own health......
 
GRM2008, could you share your name? I feel so silly typing GRM2008-maybe it is Gina?! Sweetie, get on the phone TODAY and make arrangements to spend his MONEY and get someone to cover the weekends! How about the agency that you use during the week-get them to increase the hours. My advice would be different if they could not afford it but TAKE BACK YOUR POWER and save your life. How long have you and your sister been taking care of their Dad? For free I bet! They may need to step up to the plate or understand that the money will be spent. If they do not give your Momma appropriate TLC IF THEY cover weekends, call in Adult Social Services on them! Guilt is self imposed so do not even go there. Go ahead , pick up the phone and do it and enjoy next weekend and sleep in at your own home :] I am sending you a double dose of Courage!
 
Hi, you can call me "G" ......thanks..........i love your approach!......problem is, even StepDad has directly suggested to me that my sisters and begin to come on Fridays in addition to Saturdays!...i sort of choked on my coffee and did not respond, i was too stunned to say outright "i'm sorry, that is not possible"..........he's totally clueless........here's the killer: he has a beautiful summer home that would net him about $6,000 a WEEK if he rented it for one week!....but he doesn't rent it because then his (adult) children are inconvenienced and have to vacate earlier (after being there already for about 6-7 weeks).........this angers me......couldn't he do that for my mom?.but i say nothing........yet my sisters and i are supposed to do MORE to save money?...........if i was to make arrangements for additional caregiving, adding to the expenses, that would cause an uproar and i don't want Mom to be stressed! i am thinking that i can afford to have someone there for a few hours more, maybe on Sunday afternoon, so that my sisters and I can get back to our homes earlier.....i have a more financially secure situation than they do despite being a single parent.........maybe we can at least be back home for Sunday dinner and have the evening to prepare for the work week..............i have to take some action, i've had enough.....
 
...the heart of the matter is that StepDad and his kids think that he doesn't really need the care, so he is essentially contributing to the cost of care just for Mom (and tapping into their inheritance, of course)....they don't realize how good he has it, and if we were to have a home health care agency assess the needs of their household, he would be counted as a second person in need of care!.......he needs a walker, he cannot stand without one!.....he has meals prepared, laundry done, bed made, etc.....how would he do this on his own?..and the home is always spotless!...........of course my mother's needs are way more extensive, but they are partners, they have been together for 15 years and Mom has cared for him for many, many years with his disabilities and other issues (colostomy)..............so this idea that now helping our Mom financially is a problem for their family is very distressing........the main thing is to have him and his kids see what care is involved for HIM too!....Our caregiver during the week is like family to us, she had a conversation with StepDad's obnoxious son and told him that they should come up to the house and be there from 8:30 a.m thru the entire day and see what is being done for their Father, and that we (mom's daughters) do it on weekends for him!....this son is just so clueless........and a very forceful personality....he has called my sister and basically does all the talking, doesn't let anyone else get a word in edgewise....but my sister lost it with him on the phone recently when he made this recent suggestion that "we" should be doing more for "our" mother........oh, i'm just so angry again and i didn't want to go there.....
 
G! Let that anger go, after reading all of this I am angry for you! A lot of people who are wealthy, (and I know A LOT) it seems like they are very loose with their money on the luxury things, but when it comes to other things they watch every single nickle. Thats typical and I dont know why. I would want to get a separate assessment in writing for step-dad and what his needs are as far as care and present it to the spoiled rotten kids of his. Tell them if they would prefer, you will take care of moms needs on the weekends, and they can take care of his! I know, wishful thinking. I am guessing they feel that you "owe" them since step-dad is picking up the tab for mom. Bastards! Sorry. I am angry now too. I wouldnt pick up the phone when one of those brats call. Let them leave a message, prepare yourself mentally and only answer things that are emergent. Otherwise ignore them! No need to talk to them. Get some help. You are burning out hun. You and your sisters are great daughters. Your mom is under the influence of step-dad who is under the influence of his kids. Your mom knows you love her. Dont let ANYONE make you feel guilty. Know your limits and follow them. You have kids too. You said you are a single mom, but you do have some money. Can you take some time off from work and go and take a breather just you and the kids?
I am sending BOTH you and your sis a big hug! You are doing the best you can, and it is a lot. Give yourselves credit hun!
~Hugs, Kari
 
"G" go there! YOU NEED TO GO THERE! That sanctimonious SOB needs a visit from the MONKEY'S!

Ok, I am taking deep breaths and calming the monks....

So let's see if I am understanding this correctly;
1. They have cohabited for 15 years. In most states that would qualify as a common law marriage and guarantee her the same rights as a wife. You could always use that angle if need be in negotiating with the slimy son.
2. Does this man love your Mom? Then he needs to put that love in action ASAP!
3. Is it just my imagination or are he and his children just USING you and your sister as FREE DOMESTIC and MEDICAL ATTENDANTS?
4. NO PARENT expects or wants their children to sacrifice their own lives, their well being or that of their grandchildren for them.
[exception is the man that your Momma made a choice to love] oh, the stupid choices we make when we love....been there and done that!
5. Do you and your sister have the same free assess to the beautiful summer home? I think you need to book a block of time-maybe all summer and take your Mom and the man there! HA HA HA I know it isn't realistic but sure made me feel better just thinking about it.
6. Those money grubbing poor excuse for human beings that the man spawned are just blood suckers of life. You know that you can not reason with a blood sucker so DO NOT TALK TO THEM.
7. You and your sister need to sit down and make a plan and then sit down with the man and your Momma and that is all there is to that.
That plan is only about them hiring assistance EVERY weekend and you will come and visit when you are able. VISIT is the key word here and do not budge. They are demanding way tooooo much from the two of you. I would also tell the man that he needs to tell his spawn to play nice or not to speak to you. Unless of course he has shared the big inheritance with your Mom, you and your sister?! I bet he hasn't made one provision for your Mom or you. Right?

Do I need to send the Monkey's?! hugs to you and you and your sister are doing soul much-BE PROUD! BE POWERFUL!
 
I had been thinking about a response to this G, but I see Kay Marie pretty much covered all the bases in her last post!

Look in your heart and go with your gut! Your mom is dying, for God's sake! This isn't about anybody but her, not your mom's partner and certainly not his kids! Who knows how long she has? Do you want to spend that time running around like a chicken with your head cut off, or do you want to spend quality time with her? Screw the rich kids. Who died and made them god? Go ahead with a home assessment!

One thing I've learned with ALS: Speak up and demand what is needed or you will never get it! Believe me, it's the truth!
 
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