How does one know when it's time for Hospice to be called in?

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My mother is 96 years old. She had a stroke almost 11 years ago. This past February, we found out that she had a blockage in her intestine, and it turned out to be Stage 2 cancer. It was removed, and we spent the next month moving from the hospital into a long term care hospital where she remained for a month. When we left there, we went to a 'Rapid Recovery Unit' at a local nursing home, which offered skilled nursing services and rehab. We were only there five days, when she went back into the hospital complaining of breathing issues. She had a build up of fluid, due to CHF and that was tended to in her hospital stay and we were discharged after 4 days into another nursing home (she didn't like the first one) for skilled nursing and rehab. When she didn't want to participate with the rehab unit, we were switched from the Medicare days of skilled nursing into a paying patient with 'custodial care'. She still has some wounds that need dressing, but since they are skin tears and not pressure wounds, we lost our Medicare days. Now, she is always miserable....last night, she yelled all night, and I feel really bad not only for her, but her poor room mate who is losing a lot of sleep. I spent the entire morning with her this morning, as she kept asking for help, such as water, changing position.....but nothing that I could do would make her happy. I pray for patience every day for myself and peace for her, but I am on the verge of losing it, as there is nothing that I can do to satisfy her or make her comfortable. This morning after multiple attempts to satisfy her, I finally went to the nurse and told her that she needed something either for pain or anxiety...I wasn't sure which, as she only seems to be in pain when she is moved. The fact that she always wants someone to move her, of course, contributes to any pain that she is experiencing. Her doctor saw her about a week ago, but he showed up on one of her better days, and I was not there when he came. I am at my wits end. One nurse tells me that she's just spoiled. Another seems to care and show compassion, but she also can't stand by Mamma's bedside hour upon hour tending to her every need. This morning, I timed her after moving her legs for her....it took exactly 15 seconds for her to tell me to move them again! I've been going every morning to help with her breakfast, and usually spend a couple of hours with her, then go home for a period to tend to my own business. I usually return before her evening meal and help her eat and clean her dentures before heading back home. I am not young anymore (just crossed over to 69) and this is a hard schedule for me to keep up with. Instead of getting easier, it seems that her needs (or demands) just escalate. If I was making her comfortable, or happy, perhaps I wouldn't feel so hopeless, but nothing seems to work for her anymore. I actually stood by her bed from 8:15AM to 11:15AM this morning, and not one task that I performed kept her content or comfortable for more than a few minutes....some even less! Her quality of life is pretty much all gone. I bring books and magazines, offer to help her work puzzles...bring photographs to show her, but she seems to find no pleasure in any of it. She claims that she does not want her tv there, and since she rarely watched it at home, I haven't attempted to bring it in. She is no longer interested in the news and weather forecasts, and basically, that's all she watched before. I am at my wit's end...is it time for Hospice? Her doctor claims that her fluid retention and wounds are mostly due to her diet. She never wants to eat protein, and he says that's what she needs for healing and for strength. Her main activity has become lying in bed and yelling for 'help'. I am beginning to feel the same way....I desperately need HELP in figuring out how to cope and what can be done to give her some quality of life. In all honesty, my quality of iife is mostly gone, too, as I spend most of my time attending to her needs. Will someone throw me a lifeline, please??? I just don't know what to do anymore...

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Meowskerat so sorry for your loss, I hope you are able to find peace in that you did everything you could for mother's comfort. Tears are very good for healing so let them come out. As Garden Artist said there will be many anniversaries that come up and trigger memories. The first year is the most difficult when there is an empty chair at the table. hopefully the pain will fade as new events take their place. God Bless You.
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Meowserkat, I'm so sorry to learn of your mother's passing. I do understand the intense release of emotions - in caregiving I think so many emotions are set aside or subordinated until a time comes when they can be released.

As to going through a caregiving process for, then once again finding themselves, yes, that is possible. It's also possible to "find" oneself during the process, but it takes a lot of effort to create a balance. Once that rediscovery process starts, the fatigue and anxiety begin to melt away, energy returns, and so does more emotional calm.

But there's another aspect that can continue for years, and that's the subconscious memories, especially at the time of the deceased one's birthday, death, and Christmas.
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Blonddi, so sorry that you are having such a hard time. You are right about the stress. I had gotten to the point where my emotions were so flat lined, that I didn't cry anymore. Since Mamma passed away last night, it's like the flood gates opened...all the pent up emotions of the last few years keep streaming down my face. My heart goes out to you, because when you are the only child (I was, too) there is no one to lean on, or fall back on if you are sick yourself. So, hang in there...keep in touch and let us help you carry the load. Sometimes, it helps to know that other's share the same experiences. At this point, I would like to hear if anyone has been through the caregiving process for years and has been able to come out of it and find themselves again. Hang in there, Blonddi...I will come back and check to see how you are doing.
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my mom is in a rehab facility and she had two major strokes, I called hospice, but it's all about the money, I never hear anything from them, but I do know of the medicines prescribed, and for what. she has caught two or three infections, from the two facilities......it tears you down, and it is killing me I am the only child, and my mom isn't talking or moving, and I'm constantly asking them is she in any pain. .....you know the caregivers are usually to get sick (stroke, heart attack, and different other ailments) due to the stress we are put through.....I just pray all the time that she is in no pain. You got to take some kind of time out for yourself, before you lose it, really if you look at it, it is out of our hands, only in GOD hands now......I even have to keep repeating this to myself, because I am so sad and cry all the time, but not as much as I did when it first happened.....stay strong and keep in touch
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And BTW, you can still stay in touch. Let us know how you're doing.
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My deepest sympathies to you. It's been a long journey. Good luck to you.
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My mother passed away last night. I only hope she found the peace that she couldn't seem to find during her illness. Thank those of you who were kind enough to send in replies to my question. I appreciate all of your efforts, and still have to say that this website is a lifeline to those of us who need guidance during that caregiving phase. I"ve been taking care of my mother for so long, I'm wondering how to refind my former self.
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I really wish I could offer some encouraging words, as it's so clear that you're trying as much as you can and your mother is not cooperating. Please know that I write this sincerely and most certainly not as a criticism, because I've been in a similar situation and unfortunately reached the point of exasperation before I stood up and drew some boundaries.

Your devotion to your mother is so admirable. But I think she's exploiting that. Given the amount of time you're there, she knows she can rely on that fact.

Although it may be hard if not impossible given your caring nature, start limiting the time you spend with her. (1) Not only do you both need some down time, but (2) she can expect to act out for x number of hours while you're there.

Start cutting back your hours and even making them more spontaneous. Don't be as reliably punctual.

She's frustrated and angry about her situation, and she'll take it out on you because she knows she can get away with it. I think it's that way with caregivers - the family generally bears the brunt of the anger and frustration.

If she could recover from a malignant intestinal blockage, I'd say she's one very strong woman. And that also suggests she's going to fight for what she wants, and probably get it.

Start putting some distance between yourselves, don't be available so much, and if she becomes nasty, politely say that you're very hurt and just need to be away for awhile. Then leave, hard as it may be. I had to do that once and agonized over it all day long, but eventually realized it was the best thing I could do.

At some point I considered changing my screen names to something like Clydesdale, FamilyMule, or WorkHorse. Then I finally realized I'm the only who can do something to change the situation. As long as I'm available, I'm vulnerable.

So I began setting boundaries, defining what I would do and won't do, and hard as it was, I stuck to it. It's finally working out better now. I only wish I had figured out that I need to take a stand years ago.

I hope you can try to disengage enough to get some rest and a fresh perspective. Otherwise, you're going to end up frustrated, fatigued, exhausted and angry.

Good luck and best wishes.
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Thank you, txcamper for your heartfelt suggestions. I have tried protein supplements...to the point of standing by her bed for hours just to get one Nepro down her. She refuses Ensure and when she was home I was able to get some Boost down her with the addition of ice cream and frozen berries, but don't have that at my disposal now that she is in NH care. They have tried some other protein supplements, but she refuses most things that are good for her. I, like you, thought that getting her out among others would be a good thing, but the two times we have tried bringing her into the 'common areas' she became agitated and even cried both times, wanting only to stay in her room. Today is the 2 month anniversary of her being there, and she has yet to make friends with her room mate, who is a lovely, generous lady. So far, the doctor has prescribed Xanax (prn) for anxiety and Tramadol (prn) for pain. We only give them when it's really needed, but I know if she were in Hospice care, I've been told by the nurses that they have other medications that aren't prescribed on the NH level, just by Hospice. I've held back on getting her in, so that if she came down with some other illness, that she could still be treated. However, after an awful time like we had all morning, I'm beginning to second guess that concern and wonder if palliative care wouldn't give her a better quality of life for the time she has left.
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She has been treated for anxiety and for depression in the last few months, but to no avail. We live in a smaller community and I haven't heard of any geriatric psychiatrists in our area. She is in no condition to be moved to a larger city where we might find one. She no longer sits in a regular wheelchair anymore. When she is up, she sits in what they are calling a 'geri-chair' which I suppose is for geriatric patients who are no longer mobile. I can no longer handle her weight, as she doesn't handle any of her body weight herself anymore. All I need to know is how to improve her quality of life for the time she has left, and how to know when it's time to call in Hospice.
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