How does one know when it's time for Hospice to be called in?
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...
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.
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.
When you alter her position, do you pad her bones with pillows or rolled up sheets? Get the aides to show you the important locations for padding, maybe that will increase her comfort level.
Does she need to stay in bed all the time? If she could be placed in a wheelchair or even a Gerichair and rolled out into the lobby or, maybe on good days outside, maybe that would help. You know a change in scenery can help our moods, maybe it can help her.
Ask the doctor for some medicine to help her. I know there are side effects for everything, but sometimes the need outweighs the side effects.
I am so sorry that your mother is having this issue. She is miserable, and it seems as though nothing you can do helps her. That has to be frustrating and depressing, too. Just as a thought, has anyone checked to see if the cancer has metastasized to her bones?
Bless you for being the caring daughter that you are.