I need to vent

[jayswife]

I just need to vent and no one else will understand. I will try to keep this short.

Jay's sister came up from Texas for two weeks to "help". I was really sick for one of the weeks. She did not help. Our caregiver, Valerie, told her she needs to step up because I'm very sick. She said she came to help do laundry and wash dishes but she can't lift Jay because her knee is bad and she won't suction his mouth because she's scared.

This lady has me so angry. Her definition of doing laundry is bringing the clothes to the basement and leaving them on top of the dryer. She's eaten all my food and mind you when she cooks it's for herself and no one else. She's asked for rides when I was sick and had no regard for me. She asked me to cook for her when I was making Jay an omelette. Can you believe the nerve?

The only thing she has done is eat all the food and complain that I didn't have lunch meat in the house, take two showers a day, leave the fans running in the room when she leaves which was quite often, and annoy the heck out of me. When I say something to her she gets an attitude and sits upstairs and is nasty. She's leaving tomorrow and it can't come quick enough.

The other night when I'm getting Jay ready for bed she shouts downstairs and asks me to leave a clean sheet for her because she has bites on her back and it must be from the bed. I almost lost it. I don't have bugs in my house. How dare her?

On top of all this, Jay's son is 27. He never graduated high school, does not have his license and works about 14 hours a week. He has had drug problems in the past and also has some mental issues - not sure the extent because Jay won't talk to me about it. 5 months is the longest he has held a job. He lives with his mom's mother in a retirement community and just moved his girlfriend in and she works at the same place and has the same amount of hours per week.

He never really lived with Jay because with Jay there were rules. You go to school and work, etc. So he always went back to his grandmother. He goes months without seeing Jay. They were supposed to be over yesterday at 9 am and told Jay they would make him pancakes for breakfast. They showed up at 1:30 and didn't even call to tell us. Good think I didn't tell our caregiver to take the day off.

My brother gave Jay a $50 gift card for father's day and he went and gave it to his son. And for the third time last night he said he wants his son and his girlfriend to move in. Again I said no. We cannot afford two adults. He said that they'll have to take care of themselves. They can't afford to. I understand he may want his son around but not to move in. My house is not large and they would always be home. They argue all the time and have had problems at his grandmother's house because of it.

Yes, they help with Jay when they actually show up. But again, we can't afford it. I'm trying to explain that all bills will go up. They can't afford food and I can't afford to feed them. I'm so angry I didn't even want to look at him last night. I just don't know what to do.

 

[Narrowminded]

Jays - I am so sorry for what you have been dealing with. It is doubly hard when it's family because in one sense we expect them to understand. Then when they actually "show up", they don't even try. They're still guests in the house. I don't have any good advise for you, just know I'm praying for you and I totally get it.

(((hugs)))

Sue

 

[affected]

It's really tough when family are so disrespectful, I had a bunch of stuff happen that was so similar.

You should put your foot down, there is no reason for you to pander to them when you are already stretched thin. I think it's a matter of finding a way to be firm and set boundaries, but not being nasty about it. Making it clear that this is how you need things.

Would you mind updating your profile to add the date of diagnosis? I can never remember all the little details so those bits of information beside each post are really helpful to me

 

[Nuts]

OH NO!!! Seriously??? Honey, you have a right to vent and you MUST put and keep that foot down. Absolutely NO to the son and GF moving in. Period. As for the sister, since she's leaving tomorrow we'll call that lesson that doesn't need to be learned twice. In the future, be very clear with people what they will need to do if they are coming to stay at your house.

I tell everyone that they are hosting themselves. we love to have visitors, but they must entertain themselves, and that includes cooking and cleaning up (cooking for us as well as them). We used to jump through hoops making things perfect for guests, but it's not possible now and those who matter understand.

I'm still steamed about the sister. ARGH.

If Jay presses the matter of the son, remind him that the boy (and he is a 27 year old boy) didn't follow his rules when he was healthy and you don't have the energy to deal with him times two while dealing with ALS. Period. If he presses the point of any of these people staying again, tell him good, they can care for him while you get away for a few days. Period.

Sorry...I ramble when I'm angry.

Big hugs.
Becky

 

[soonerwife]

So frustrating. So dang inconsiderate. The nerve of people really rubs me the wrong way.

So sorry you are having to deal with that crap on top of everything else. Feel free to vent anytime. We will get annoyed right along with you.

I completely agree with the others. No way on letting the son and gf move in. That has trouble written all over it.

 

[scaredwifetx]

You have rights in your own home and I wouldn't let them do this to you. I am sure your PAL doesn't like you bring treated this way either. I would let them all know that taking care of your PAL and YOURSELF is your priority. Let them know if they can't help than they can't be there.

As a matter of fact I would let them know that you can't deal with any extra responsibilities so they will need to figure something else out. This is such a rough time and you don't deserve or need any drama.

 

[lgelb]

I suspect Jay is thinking of cutting his son slack that he didn't before because he is either regretting what has gone before or thinking somehow that having him around will make things better in the future. Or both. Or wanting to act as if.

I would attack those false assumptions directly. Try to get him to talk about what he's feeling and why. If possible, emphasize the people around you that are helping, that are dependable, like your brother, and that they will be rallying around you going forward. That there is a plan, and Jay's son can come by whenever he wants, but that moving in would not work. You can even point out the gap between what was said would happen the other day, and what did happen, and imagine that great a gap with higher stakes than pancakes.

But I agree, there's no wiggle room here. This is the time for tough love for Jay. You married him, period. And I think if you are firm he may secretly be relieved.

Best,
Laurie

 

[jayswife]

Thank you all so much for the support. His sister is leaving this morning and I am beyond happy. Laurie, I agree with what you said about Jay and his feelings about his son. The thing is Jay won't talk to me about his feelings. It's so frustrating. We haven't discussed the situation with his son again. He hasn't been feeling well that past two days. Last night he just kept saying he didn't feel good but couldn't explain what was going on and then he started crying and saying why is this happening to him. He never really complains or says that. But last night he told me that there's going to be some changes around the house. I asked him what he's referring to and he said that we would talk after dinner. I then asked if I was going to be happy about the changes and he said no. Which really made me mad. How can he just decide on something without us having a discussion about it. I told him that we should do it now because my son would be home soon and I didn't want him around when when we talk and obviously disagree. He said that I had a valid point and it's not important and wouldn't say anything further. I'm pretty sure he was referring to his son again. I just don't know what to do if he insists on them moving in. The way I feel is it's them or me. That may sound childish or whatever but that's how I feel. I will not live in a home with them. If its not one thing its another. I feel sick about this.

 

[scaredwifetx]

I am so sorry you are having to deal with this. You have every right to be angry and don't need to apologize here. This is such a touchy and personal situation but I agree with you. You have the right to choose what and who you want in your home and every right to stick to your guns. You are in my thoughts and I wish there was an easy answer. Hugs!

 

[affected]

I hope you can find a time to sit and feel calm to have the discussions that seem to be needed just now.

It's so hard when both have emotions flying about, and the topics are literally life and death.

Does you husband have anyone else he can vent to as well? A friend who sees him, a counsellor or anything?

Sometimes the way ALS robs a person of all control can make them want to grab any opportunity to feel they have some control, and this thing with his son could be something like that, even if he knows in his heart it would not work out well.

If there is any involvement with the fronto-temporal part of the brain, then empathy and executive functions can be affected. This doesn't always mean they have a full blown dementia, but stats I heard at a conference this week were that they now say 2 out of every 3 PALS experience some deterioration in that part of the brain.

For CALS it's really tough as we have our own needs and feelings that are important and valid, but sometimes it does help to step back a little and consider our PALS and look for strategies rather than just let reactions happen. Ha of course it's not a magical world and we bumble along much of the time.

It will be worth discussing with him, but also it doesn't have to happen today, or even tomorrow. Maybe your husband is also a bit uptight after having his sister here and it's tipping him a bit emotionally too, so maybe a couple of days settling is worthwhile. Keep venting and update us as well xx

 

[zoohouse]

As you can see, it is pretty unanimous that taking in your step-son and his girlfriend would be a disaster. Stick to your guns with your husband, and I agree that if he insists, ask him if he wants his son to care for him full time. I had Tim's daughter for a year and paid her to be a helper, and she is a pretty good kid, except that she has never learned how to work. Finally after 3 or 4 warnings she was sent back to live with her mother, I just could not deal with looking after Tim AND his daughter. Our utility bill nearly went down by ½ as did our food bill. I can't tell you how many times I had to go around the house turning off all the lights in the middle the day. We have his son every summer, but because he was only around 11-12 when I met Tim he has learned that I won't tolerate back talk or laziness. I'm sorry you visit with his sister was so difficult, and the back bite comment would have pushed me over the edge. Tim had 4 brothers come to visit 3 weeks ago and they were very good, even going around the house fixing things that I hadn't time to get to. His oldest son came 2 weeks ago and has matured so much, since the last time he came 2 years ago. All in all the visits have been good this time, and that is good because I think it will be the last time that they see him.
Stay strong and come here as often as you need for encouragement and venting.
Paulette

 

[lgelb]

The way I phrased it should have been more either/or.

Either he can talk about his feelings or it's back to son vs. you, but since that sounds harsh, I'd make it more like "Let's have people around us who are positive like X and Y, who will contribute to our lives, let's not make a bad situation worse, but instead let's make as much happiness in our home as we can." And if necessary, "I can't support [son] and [gf] in our house because that will just make our lives harder and make it harder to deal with everything else." The defcon approach is to point out that the people who actually help out will be less likely to do so if they have to deal with freeloaders.

Well, in your words but you get the gist. Paulette has a lot of experience with family gone awry so I would take her advice to heart.