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Old 07-23-2007, 08:37 AM   #1
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When do you know it's time to call Hospice?

My grandma just turned 91. She was in the hospital last week for what we thought was a TIA, but none of the tests they did were able to confirm it. I'm not sure what they did to her, but ever since she got home, she has literally been bedridden. She has only gotten out of bed to use the bathroom.

My entire family is completely at a loss. Before she went in the hospital, she would often complain of being tired and/or weak, but she was still perky enough to sit up in her chair or to go into her tv room and watch some tv. Now, she literally stays in bed all day and all night.

It's like she is giving up and doesn't want to deal anymore. I mean I guess it's possible. She's 91 after all, she's not young anymore. And perhaps she is just tired of fighting it. But she was NEVER like this until she was in the hospital last week. I've never seen her stay in bed so much, even when she had pneumonia a couple of years ago!

I keep telling my dad that's it's time to call hospice. He doesn't want to accept the fact that she is not getting better. He and my mom have already said they're never taking her back to the hospital again after what happened this last time, and if that's the case, then it's time to make that call. I don't want to face the fact that she's dying either, in fact it's one of the most painful things I've had to see. Just 5 years ago she was still in good spirits, walking around the house, doing stuff, going outside and looking at the garden and everything. But now it's like she can't hardly lift her head off the pillow!

My boyfriend thinks it's partly psychological and that maybe some of this weakness she is feeling is all in her head. That's certainly possible, especially since all of her tests at the hospital didn't indicate anything out of the ordinary. She didn't have a TIA, she didn't have a heart attack, nothing has really changed in the last 2 weeks except for the two nights she spent in the hospital. But that's not enough to make her bedridden!

So when I ask her why she thinks she feels weak and why she doesn't get out of bed, she tells me it's her age. She keeps saying her age is the reason why she feels so weak. But then I argue with her and tell her that she was never like this before going in the hospital, she said she doesn't remember! She literally thinks her age is causing her to be bedridden!

I'm totally at a loss. My parents are just as clueless as I am, and I feel terrible pushing them on this. But I think we need to all just face the fact that she's not getting well. It's time to take some action, and that means calling for hospice! What else can we do? We don't have any other options! We refuse to stuff her in a nursing home where they are just going to treat her like crap, she's better off at home with the family. But as far as the care we provide her, we can only do so much. I think we need some home healthcare and she needs the type of care a hospice worker can provide. I don't think we can let this go much longer.

Does anyone have any insight about hospice? And does anyone have any ideas about what to do about my grandma not getting out of bed? Should I try to make her get up and sit in her chair for a little bit? Or would that be worse? I don't even know anymore!

 
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Old 07-23-2007, 10:09 PM   #2
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Re: When do you know it's time to call Hospice?

Wow I can't believe no one has replied to you yet! If it were me, I'd say you were right to call and it's time now. The thing your parents need to understand about Hospice Care is that they can have your g-ma in and then out of the program if she gets better. Granted, at her age, it's not like she would get all that much better, but there's always a chance!

And I sympathize with you about the bad treatment at the hospital. My g-ma just went through a major ordeal where the nurses tried to tie her down and hog tie her to the bed and she doesn't remember what started the whole row. So she is very upset because she wants to know what happened. I'm trying my best to help her remember, but I'm not that good at making people remember stuff.

I think that if your parents won't take the initiative on this then you need to. It's all you can do. If your g-ma was a champion for you in your youth when you needed someone to be your advocate, then this would be a great opportunity to repay her for what she did to help you when you were younger.

Good luck and God Bless your family.

 
Old 07-24-2007, 08:40 AM   #3
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Re: When do you know it's time to call Hospice?

Thanks for your reply. I was beginning to think I was invisible or something because no one was giving me any answers.

Just as an update, the hospice program manager came to speak with my parents and they decided to sign her up. I think it's the right thing to do because she told me that she will never set foot in a hospital again. And I know it will take a lot of pressure off my parents and my brother and I, which will be good.

Thanks for your response. And I wish your grandmother well, also!

 
Old 08-08-2007, 02:13 AM   #4
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Re: When do you know it's time to call Hospice?

in our case, the doctor knew it was time and put my mom in hospice(she just died on monday)they are really great people, in my opinion, they are angels here on earth. my mom's last hours were spent pain free with a host of her favorite people close by. the hospice people were almost invisable. when i say that i mean they never got in the way, never offered an opinion unless we asked,never did anything that was not discussed first,but made my mom's passing much easier on us and her........
my thoughts are with you(as much as they can be,as we are preparing my mom's memoral service for today)
Danny

 
Old 09-07-2007, 12:52 PM   #5
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Re: When do you know it's time to call Hospice?

Hi,

It will be time to call Hospice when you and your family members are unable to care for the person that is terminally ill. We called hospice for my Father 2.5 years ago because we were unable to care for him at home, we could not lift him up out of bed, he could not walk, and we could not bath him. First they came to the house in FL then a week went by and he got worse where he had to be sent to a hospice facility. I spent a month there in hospice with him, left home to do this. Hopsice is a wonderful place when you need assistance like this they also provide counseling if you need it.

 
Old 09-07-2007, 06:28 PM   #6
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Re: When do you know it's time to call Hospice?

Just wanted to say having just been through hospice with my husband who was terminally ill with cancer..that hospice isnt exactly like it used to be...
I think a time ago, hospice wasnt called until someone had just days left...
also hospice can be at home or at a hospice facility

now you can start Hospice as soon as the Dr gives a 6 month terminal diagnosis and signs them in. Hospice is mainly for terminal patients after they have stopped any curative treatments. They are there to help the patient and family go through the dying/grieving process. If you find the right hospice they can be a godsend. We unfortunately had a bad one until just about 9 hours before my husband died when we switched to a different one... too long of a story...I just wish we had had them all along..it would have been sooo much better...but at least he died the way he wanted to at home and not in pain!

 
Old 09-09-2007, 09:56 AM   #7
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Re: When do you know it's time to call Hospice?

It doesn't even have to be "6 mos or less." Simply having a life threatening condition (which lying in bed 24/7 is due to complications from inactivity) is enough to qualify for hospice. Definitely call!

Best wishes at this difficult time.

 
Old 10-11-2007, 12:38 PM   #8
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Re: When do you know it's time to call Hospice?

We just found out that my 53 year old brother who has lung cancer that has spread to his liver may have between 3-6 months if no further treatment is used (He's been through Chemo and used Tarceva). Any treatment it sounds right now will be experimental. The Dr. mentioned hospice to us but right now he is able to get around and take care of himself. Is it too early for them to come in to help out or should we wait until he can no longer care for himself? He turns to me for advice in every decision he makes and I want to help him out as much as I can.

Caring Sister

 
Old 10-11-2007, 06:29 PM   #9
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Re: When do you know it's time to call Hospice?

dj...
I am sorry about your brother....as my post stated I went through hospice with my husband who was 47 and died of LC....

If your brother is not going to pursue any more "curative" treatments...chemo radiation etc...than you may want to call them and speak to them...
if you find a good hospice..they can be a great resource to the families as well... I have received info on counselling etc.... While your brother is able to take care of himself, they can just come by 1-2 times a week to take vitals and get what ever meds he needs...that way he doesnt have to go to the doctors office.....
I would really reccommend you do it sooner than later..that way they will already know him and his situation and you really never know how fast things will happen I am sorry to say... My husband was diagnosed in March...told 6 months... he was on oxygen 3 months later and died at 4 months (exactly 3 months ago today)... it was very quick...
I truly hope that things go well for your brother and I am sorry that you/he and your family are being put through this.....

 
Old 10-12-2007, 05:56 AM   #10
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Re: When do you know it's time to call Hospice?

Thanks for the advice. My brother was released from the hospital yesterday from having pneumonia. I am more confused now than before because now as of last night he says his doctor said that there are more options out there for him, whereas on Tuesday the doctor told our family that there really wasn't much else that can be done because he's not in the best of health (pneumonia from aspirating, swallowing problems from radiation on his throat from head and neck cancer one year ago, blood clot in one leg and has had a quintuple by-pass 7 years ago). He is also on a feeding tube. The doctor even mentioned a living will and the hospice. They are now talking about some kind of chemo through a cathater. I am not familar with that. And he goes for a bronchiscope (sp) on Monday or Tuesday because something is lighting up on the CT scan they just did. Not sure if it's another tumor in his neck or not. He's 6'2 and 130 pounds at the most. I don't know that he can take much more on his body. He lives with our mother and she's 77 years old, in pretty good health, but has a bad back. I really need to speak with someone from hospice just to see what they have to say. I'm sorry for your loss but it's really nice that you come on this board and help those out, like myself, who are now going through what you did. I feel lost on what to do and what to believe. Sometimes I think they are using him for experimental purposes. And last night he told me he's not ready to die. I'm afraid the chemo might kill him faster than if he did nothing. We almost lost him twice when he was on chemo the first time. Sorry I rambled on so much but this is all new to me and I'm pretty much the one that has to take care of everything once he gets to where he can't do it himself. I'm afraid once he starts with something else than that will be the end for him but it's his decision to make, not mine. I just want him not to suffer.

 
Old 10-14-2007, 11:49 AM   #11
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Re: When do you know it's time to call Hospice?

I can totally understand your concern...I truly believe that my husband might have passed even sooner if he had done chemo...
however...what I decided is that I have to let him do this the way he wants...I told him...if you want to go thorugh treatment and try we will do that...if you dont..then I wont push you. His oncologist was kind of the same...I think she realized it wouldnt help that much but if he wanted to try...she would support that as long as she could see it wasnt hurting him...
but he was too sick and I dont think he wanted to risk...waht quality he had..
he hated the whole medical thing and drs... he was happy to be at home with me during the last months and just having the nurse come by 1-2 times a week to check on him....
I think that is a good idea to speak with hospice and get all your options.you could also look into palliative care..this is similar to hospice but you can do this while still pursuing treatment..I am sorry you are having to deal with all of this... it certainly isnt easy...and it makes you feel pretty helpless... like I said in my case the only thing I could actually do is respect what he wanted..no matter what..and make him as comfortable and happy as I could.

strength to you and your family
Cindy

 
Old 10-19-2007, 06:27 AM   #12
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Re: When do you know it's time to call Hospice?

Cindy,

Thanks for the caring words and the advice. My brother had his scope on Monday and the doctor said he found no tumors in his neck but took some samples to biopsy to make sure nothing is there. He said he thinks he can fix his swallowing problem from the radiation. That makes him feel really good. I guess now comes the decision on whether to try another chemo or not but that's a decision that he will make on his own. I will keep you updated on what we find out. Again, thanks for responding. This board is really nice. Some of my friends just don't understand what I'm going through so this gives me a place to let out my feelings and find out what others have gone through and also know that I'm not the only one out there that has had to face this type of situation.

DJ

 
Old 10-21-2007, 10:21 PM   #13
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Re: When do you know it's time to call Hospice?

When my Mom was so sick from the COPD, her Doctor suggested we call in Hospice and let them take over and that they could keep her out of pain and that she would not have to go back to the Doctors office again. Well Hospice came out and talked to my Mom and I and Mom signed the paper work for them to take care of her and she was living with me. I will say this, Hospice is the best thing that there is when a person hasn't really gotten any options left. They are also there for the family too. They never let my Mom be in pain which they showed me how to give her drugs to her but I had always heard that when they died from COPD that it was not a pretty sight to see. i can honestly say that my Mom was in no pain at all, she just started that death rattle and I called the Hospice Nurse and she came to our house that night around 10:30 and my Mom passed away at 11:20 very peacefully. I had prayed and prayed for God to not let her suffer and my prayers was answered. Hospice is the only way to go when there is no other option and you know there days are numbered. They were so nice to me and my family.

I would like to say I am sorry to all of you that is dealing with this! It is hard, but put it in the hands of the Hospice workers and you won't go wrong but find a good company.

My thoughts and prayers go out to you all!

 
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