Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Im So Irrate


confused

Recommended Posts

confused Community Regular

Ok you all know about my bil being so sick. Well huby just talked to his sister, and she informs him that they want to know what to do when my bil gets out of the hospital. Then she preceded to tell him they will put him in a nursing home. never asked my hubby what he thought, just that is what they decided, and the reason they decided this was cause everyone is to busy with work and their own lives.

My bil has given his shirt off his back for most of this family, either with money or helping remodel their houses and has never asked for anyting in return, and now thwy just want to brush him off to a nursing home. An 42 yr old man in the nursing home when he has a big family. I am so pissed.

I am also pissed cause her my hubby is my bils only full sibling, the sisters are half siters. So hubby should have more of a say so, wouldnt you think?

I told hubby i will drive to the hospital and bring him back here and he can live with us and i will take care of him. crap if im wiling to do this with 5 kids, then why cant anyone else stand up. I told him if for some reason we can not handle it then we will then talk about assited living or something, but only after we try.

I have my cna license and im a hospice volunteer, so i think i can handle it. Plus we have 2 drs across the street and my good frind/cousin is an RN.

I dont know if im more mad they want to put him a nursing home, or that they didtn talk to my hubby first. Hubby was only home for his 30 minute break, so we didnt have too much time to talk about this. But we both did agree we want him here with us.

If anyone reaad all of this, thank you. I just had to get it out.

paula


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gfgypsyqueen Enthusiast

Jeez...isn't family grand! Glad to hear bil will be with your family first. Look at bringing in an afternoon helper (teenager) for the kids if you need a break. Hope he feels better soon. He'll appreciate the love from you and your family.

Ursa Major Collaborator

That is truly awful! He would only deteriorate in a nursing home and doesn't belong there.

You are to be applauded for wanting him to come and live with you, I hope it all works out. You may need some help, though, make sure you plan that in.

confused Community Regular

thank you, I would get some help, cause i know it will be far from easy, but i know he would only die in the nursing home. I was an activites director in the alzhemeirs ward for a over an yr. And i would see so many come in that were not bad off at all and by 6 months they would be gone. I just dont want him to die in a nursing home. Cause i know he will feel abonded and all alone. If the family that lives in the same city he is at, cant even find an hour to help him eat breakfast or lunch, then how will they find time to visit him in a nursing home.

I just cant believe how selfish his family is and how inconsiderate they are. Just a few days they were crying that he was going to die and now we have an chance he wil survive and now no one wants to help him survive. I just dont get it at all.

paula

Cheri A Contributor

Wow, that's so nice of them :(

I'm so glad that your BIL will be going to your house to finish recovering. I'm sure he'll do so much better. (hugs)

jerseyangel Proficient

I'll never understand people--but it really takes a situation like this sometimes for some to show their true colors. <_<

I respect you so much for offering your home and your time/talent to your BIL. I just know it's going to make all the difference for him.

I wish all of you the best, take care :)

ravenwoodglass Mentor

It sounds like he is going to go to the place he needs to be. You are in for a lot of work and extra stress but it sounds like you can handle it. I think it will be good for him to be able to be around the kids, they can make the world much brighter - when they aren't tearing it apart. :) Please be sure to get some respite care set up so you and your husband can have some time together without worries. Try not to be too hard on your relatives. I don't know their situation but taking care of someone who is as sick as he has been is a daunting task. Many can not deal emotionally with it or don't have the knowledge that you do to deal with it. They may have been reluctant to even suggest it to you because you do have children and other responsibilities and they may have not wanted to seem to push you into it. Try to just be glad that you can be there for your BIL, and concentrate on that rather than your anger with them. I hope everything goes well and that he improves.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mama2 Apprentice

I just want to say I really admire your strenght. You , your hubby,and his brother have been through so much, I think that it is really wonderful what you want to do for them. My thoughts are with you and your family.

blueeyedmanda Community Regular

Paula,

It is so nice to see he has a warm person to come to. I agree with Ursa you should be applauded. I would never let me mom or dad go to a nursing home. I am sure there are nice ones out there...but there will never a be a nice enough one for either of my parents. I would gladly take my parents to my home.

It is sad to see how kind and generous he was to everyone and now when he could use the help everyone has deserted him...but you. You are amazing and I commend you. :) Keep us informed.

confused Community Regular

thanks everyone. you all made me cry. But i guess they are talking about putting him in a rehab thing at the hospital. So i dont know what is going to happen. His family continues to leave my hubby out of arrangements and it breaks my heart. They need to stop looking at my hubby as the bb of the family, but i know that day will never come.

My bils health is still up and down, one dr says he is getting better, another says he is not getting better. It is so frustrating for everyone. All we know is he keeps losing more and more weight and that is far from good.

But everyone keep your prayers coming and maybe we will have an miracle.

paula

jerseyangel Proficient

Prayers continuing his way, Paula :)

confused Community Regular
Prayers continuing his way, Paula :)

thanks patti

ravenwoodglass Mentor
thanks everyone. you all made me cry. But i guess they are talking about putting him in a rehab thing at the hospital. So i dont know what is going to happen. His family continues to leave my hubby out of arrangements and it breaks my heart. They need to stop looking at my hubby as the bb of the family, but i know that day will never come.

My bils health is still up and down, one dr says he is getting better, another says he is not getting better. It is so frustrating for everyone. All we know is he keeps losing more and more weight and that is far from good.

But everyone keep your prayers coming and maybe we will have an miracle.

paula

Would there be a suitable rehab unit closer to you? Or even between the locations? That might enable your family to be there to oversee his care and lift his spirits. Rehab can be very beneficial to people and may be the medically needed next step in his recovery. Also if the rehab unit is close enough your husbands active participation in his brothers care might help change the way the rest of his family views him. There is often a period after rehab where he may need your continued support to continue to improve. Miracles do happen, I have had the joy of being part of one with a TBI student. Prayers will continue of course for both your BIL and your family. He is so lucky to have you.

confused Community Regular

There is really nothing between here and there that would be suitable. We do have an awesome one here but it is inside the nursing home.

Right now i guess it is about insurance and money. He tried to get ssi, was denied, tried to get medicare and also denied. So now its just trying to figure out who will end up paying for it all. I guess they are trying to make him indegient(sp). But who knows. We gave money for his insurance but not sure what was ever done with that either. Or if they might have canelled him, you know how insurance companies are.

Our newphew went to see him yesterday and said he looks very very bad. Hubby and I jsut dont think bil has the will to fight to go on.

Hopefully if we dont get too much snow, we will be heading up tommorow when hubby gets off work. I just need to be up there and get some asnwers ourselves, instead of getting bits and pieces from every one else.

paula

ptkds Community Regular

Paula,

I remember you saying that your dh was the only full blood relative? Is that right? If it is, then he has a right to tell the dr's and nurses to only call him. The other's can be removed from the "call list". You guys may even be able to get a power of attorney or something like that. That would insure that all of your bil's medical discisions have to be approved by your dh. I have to go, but you should look into trying to do this. Then nothing can be done against your dh's wishes.

ptkds

Fiddle-Faddle Community Regular
Would there be a suitable rehab unit closer to you? Or even between the locations? That might enable your family to be there to oversee his care and lift his spirits. Rehab can be very beneficial to people and may be the medically needed next step in his recovery. Also if the rehab unit is close enough your husbands active participation in his brothers care might help change the way the rest of his family views him. There is often a period after rehab where he may need your continued support to continue to improve. Miracles do happen, I have had the joy of being part of one with a TBI student. Prayers will continue of course for both your BIL and your family. He is so lucky to have you.

I was going to suggest this, too. My grandfather was put in a nursing home after a stroke--but my mother searched long and hard to find one that actually did rehab instead of just shunting him off to die.

They began PT and OT the day he arrived. Within a week, they had him up and kneading bread.

Some nursing homes have critical care abililty, and they do physical therapy that even a trained nurse can't do. If there is any chance that your bil can benefit from rehab (sorry, I don't know his situation), then, unpleasant as it may sound, he might benefit more from being somewhere where he would get it all day rather than at home where his basic needs would be met with far more love and care, but he wouldn't have access to as much PT, OT, and speech therapy if he needs that, too.

You are in a very difficult position, and I hope things work out well for your bil. Is there a patient advocate at the hospital he has been at?

confused Community Regular

Well yesterday we fouind out that the dr wants to met with the whole family, well the siblings and the newphew with power of attorny. At first my hubby was like i cant get the day off of work. So i threw a fit and he called his job and got the day off lol. So on monday we are going, the kids dont have school cause of columbus day, so it is going to work out perfect. Tonight we are going to make an list of questions we want to ask, cause i know we will forget once the dr walks in lol. From last i heard they want to put him in the rehab part as soon as next week. As of now what hubby and I plan on doing is, letthing him go to the rehab, for about 6 months, then we will bring him here to live with us. The drs feel it will take 2 yrs to get him better. But at least they feel like he will get better. We will be bringing this up on monday. We will let the newphew continue to have power just cause he lives there, but we will state we want a phone call for every little thing that they do to him.

They said he will have to have speech therapy, occupational therapy, physical therapy and learn to do every thing all over again. So we have a long road ahead of us, but tg he is still kinda young.

thanks everyone+

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,894
    • Most Online (within 30 mins)
      7,748

    Lois Morelli
    Newest Member
    Lois Morelli
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      knitty kitty brought up something that also occurred to me. Namely, the reason you don't like bread and pasta may be that your body has been instinctively telling you, "this is harming me" and so you avoid it. Cake, on the other hand, has less gluten and lots of other goodies like sugar and butter and chocolate that mask what gluten there is.
    • knitty kitty
      @Shining My Light, While you're trying to decide on your next steps on your journey, I suggest you have a DNA test to look for Celiac genes.  Your genes don't change, so you do not have to be eating gluten for it.  If you have even one Celiac gene, it's more likely to be celiac disease, than NCGS.  TTg antibodies do not occur in NCGS.   There are different amounts of gluten in different breeds of wheat.  Wheat used for cookies and cakes and tortillas do not contain as much gluten as wheat used for bread and pizza crust.  Look at the crumb in cakes and tortillas.  There's only small bubbles. Gluten is in the matrix forming those bubbles.  Compare those to the big bubbly holes in artisan bread and chewy pizza crust.  To get those big holes, more stretchy elastic gluten is used.   You are subconsciously avoiding those types of foods with large amounts of serious gluten in them.  Consider including these types of high gluten foods in your gluten challenge before your antibody retest and endoscopy.  Keep a food mood poo'd journal to record how symptoms change.   Anxiety, headaches and joint pain are symptoms of Celiac that occur outside the digestive tract, these are extraintestinal symptoms of celiac disease. "Could I really possibly follow a gluten free life as close as I follow Jesus?"    Yes, He's been my constant companion and guide on this journey which has brought us to the forum so we can help others on their journeys.   References: Celiac Disease: Extraintestinal Manifestations and Associated Conditions https://pmc.ncbi.nlm.nih.gov/articles/PMC6895422/ Psychiatric and Neurological Manifestations of Celiac Disease in Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC9984242/#:~:text=celiac disease%2C a multiorgan disorder with,life [21%2C22].
    • lehum
      Thanks for sharing this! You contacted them specifically about their certified gluten-free products, or which products specifically?  So out of all the finished batches of nuts, they only test one?! That seems suboptimally safe... Maybe I will have to try Tierra Farms too...
    • trents
      Also, concerning your apprehension about family pushback, you might relate to this:   
    • Alibu
      MY BIOPSY WAS NEGATIVE!!!  HOW?? Obviously I'm thrilled it was negative, but I'm so confused now.  
×
×
  • Create New...