I'm hoping that today will be a better day for my mom. I've been here before, but in many respects it was easier the first time around. I pray that both she and I will have the patience to deal with the sore tongue, eating issues and her persistent fear and negativity. Her being negative is so unlike her, that in itself leaves me feeling a bit confused. Please understand, I am not complaining, I don't quite know what I am feeling...insecure? During the first phase of her tx's she and I both just forged forward. I laughingly referred to her as the Fighting Irish Woman. Now she has become a ball of fear and tears. I have been told she needs to stay home, because of her temp trach...can't help but wonder why the hell it is still there?!? She has it capped more than 3/4 qtrs of the time. I have seen how much she thrives on being with other people, unfortunately, I find myself having difficultly calling people to come by to visit. I am very frustrated with family and friends. VERY upset about it, sure they call once and a while but it's not the same as them offering to drop by. I don't feel very comfortable calling and asking them to come over,I can hear them almost sigh. I haven't asked for a lot from anyone, only my poor kids, dad and Ed. Our (meaning OCF) friend, Jerry, came by on Monday and brought a lovely bouquet for mom...can't tell you how much it meant to her. I don't mean just the flowers of course, the time and the compassion he shared were such a gift. (Thank you Jerry!) I guess I am just going to have to bite the bullet and call people? I really don't want to do that. I have such a bad taste in my mouth right now about even trying to get through a conversation with them. Even when some people have called, all they do is complain about things that really shouldn't be an issue, it's becoming tiring. My grandmother who called constantly, found her way here almost 4 times a wk, has taken to calling and complaining about how her house hasn't been really cleaned since early spring....which was when mom went over and tore everything apart. She's 90 and taking down drapes herself. If something happens to her I am going to go insane. I need to call my mom's brother to tell him about what she is doing, and maybe he can nicely tell her not to call and tell mom about it.
I sound like a horrible person complaining. I know I need help. I will find a way to get through all of this, I always do, especially with help from everyone here.
Thanks for any advice you can offer. I don't know if I have made any sense, hopefully you can read through my craziness. I am in a bad hole, can't see the light, and find myself bearing my teeth a lot. Not at all like me.

Donna--never mind baring your teeth---Go bite those whingeing people.
Get on the phone with mom's brother and also any other friends and relatives she has to hep her out with her house, so she only has GOOD things to talk about!

I know what you mean about not wanting to ring people--you expect they would just want to come by anyway. I used to get so frustrated and upset trying to find subtle ways to ask my sisters and brother when they were coming--in the end, I just had to yell at my older sis on the phone one night and told her it seemed to dad that none of the rest of his family cared for him--he really did feel that way sometimes.

You're not a mean and complaining person, you're a wonderful Caregiver to your mom--which, as you know, she appreciates. You're also supporting your dad and have Eddie and the kids to think about as well--don't be hard on yourself!

As for your mom's negativity--well that happens to us sometimes, and whilst we'd often prefer to have our weeps in private, the just 'get on with it' again, it doesn't always happen that way--and we can't often BE on our own--bit of a see-saw between needing/wanting solitude and company.
And you thought YOU sounded crazy!

Remember to take care of yourself Donna and keep reminding yourself what a great job you're doing!
Thinking of you,

love Brenda
But you're bound to get tired--it's been going on for a long time now

Donna,

Boy was I lucky. My family and friends were all around. I can't even imagine getting thru without them. People are nervous and possibly don't know how to deal with it. You may try calling them and explainng that you know that "they are having a tough time with this" but your Mom really needs everyone to rally here. I would call the "one" that might understand the most, and get them to rally the troops. Bets of luck to you.

Rob

Donna,
We were lucky, I know. People really wanted to come and see my mom, but probably almost just as bad, I had to look at her sisters, family and friends and tell them that she did not want to see them. My mom was pretty negative through the whole thing, and I know when I read your posts I was almost jealous of you that your mom was still interacting so much with you. I honestly called my mom's answering machine one day to hear her voice, since she refused to even try talking after her trache was put in.

Remeber all of those people who said in the beginning "if there is anything I can do to help...", well call them ALL. I am someone who does not like to ask for anything, but my sister adopted the motto, "be careful what you offer" and has taken people up on EVERYTHING. In short, I guess you will only get what you ask for, and you need to ask for help. We have been going through this with our moms for almost the same amount of time. You need a break or it is just going to be more stressful for you both. I am sure everything will get better and think that as soon as the trache comes out your mom will start to get back to herself again. Take care of yourself - the last thing you need is to get sick again.

Amy

Donna,

I think Rob hit it on the head. Most people feel that they won't know what to say or do if they visit. They put this before what Rose really needs. Also, if they haven't seen her since her treatment they might be fearful of what she might look like.

I think she looked great and you should tell people that. Sure she lost some weight, but that shouldn't be a problem for anyone. Like Amy said, call those people that asked if there was anything they can do and tell them that now is the time to do it.

I think things will get much better when the trach is out and she has more freedom to get around out of the house. The Oxford Valley Mall is calling the two of you. You're almost there!!!

Hang on.

Jerry

Thanks Everyone!
I made a few more phone calls, and then one person told another and so on...we have a few people very happy to come by
I called the surgeon's office today, told them my mom is very uncomfortable and her spirits are low. Told her the trach needs to come out so we can go out, she needs to be able to get bck to being normal. The girl I spoke with asked why she isn't going out? I said because at discharge they said to stay home till the trach is removed, as did the visiting nurse. She said mom is allowed to go out, that was supposed to be a temporary order. Not surprisingly, mom cheered up right away! Jerry--she did some major damage at Kohl's today!! She's lost so much weight that her clothes are very large on her.
Thanks so much. Battery is about to die.

Yea Donna, I was going to tell you until I read what you just wrote. I have had a trach for awhile now and I go and do whatever I want so take her out, it wont hurt a thing.

Billy

Dang Donna, I LOVE Kohl's.....me and the girls go there all the time.

Have they told you why your mom still has a trach? And Billy, why do you still have a trach??? I had half my jaw removed and lost my trach before I left the hospital. Just had one third of my tongue removed and didn't even have a trach. I'm just surprised to see the length of time you've had them. Are your docs simply playing it exceptionally safe or do they give you a reason for it still being in there??

no reason given.

the docs, surgeon, mo, ro, all said brachy would be so much easier than her imrt and Erbitux....simply don't agree.

I guess by easier, they just meant quicker!
And, of course, it did come on top of all her other treatment.
Hope she's feeling cheered-up after her shopping trip anyway, and that you'll get a little time to yourself again when the visitors start arriving.

Brenda