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Mom is 83. She has atrial fibrillation which has apparently resulted in small strokes and central sleep apnea. She has declined for two years. A more rapid decline began late last year when she began having what seemed temporary delerium episodes with urinary retention. She had to start home urinary catheters and was prone to frequent infections. She became weaker and about two months ago, was unable to walk without assistance and was forgetful that she couldn't walk by herself. About six weeks ago, she tried walking when I stepped out of the room, and fell and bruised her hip. Two days later, a home health care nurse said her heartbeat was rapid and erratic, and later that day she fainted while I was helping her to sit up in bed. She went to the ER and spent four days in the hospital while they got her electrolytes corrected, and treated a UTI. She barely ate or drank while in the hospital. She was terribly weak at the end of her stay. The doctors recommended a stay in rehab, but she insisted she wanted to go home. So, she came home with me to my home that we've shared for nine years. She sometimes forgets where she is, or doesn't recognize it. She has a foley catheter. At first, I could move her with her assisting, between her bed, wheelchair, and lounge chair. It got to where I lift her entire weight and she can't assist. I watch her in the daytime, and my sister at night, and we use a camera and phone app to observe her when we can't be in the room. The last week, she has slept more, and ate and drank less. Now, she sleeps around the clock, except for brief periods. We try to give her medications, but she is not always strong enough to take them, or she sometimes seems unable to sit up, open her mouth, or swallow. We try to give her food and drink, but she either doesn't want much, or any at all, or can't swallow. Her communication varies, from a short mostly lucid conversation to not being able to talk. She is under Hospice care, with a nurse coming once a week and someone giving her baths. Her regular doctor told her he could no longer see her if she didn't go to rehab following the hospital, so her doctor of 35+ years is out of the picture. The Hospice people are nice, and answer questions but I still feel uncertain. Am I doing all I can for her? I feel guilty when I see her sleeping her time away and I can't help her, give her anything that will make her better, or even talk to her like I used to. I talk to her, but she can't talk the same as before, and has confusion. Hospice told me not to force food, water or medicine, and I would not want to force anything on her. However, I fell guilty and helpless. My sister and I are exhausted, yet we would re-double our efforts if it could make a difference or make her any happier or more comfortable. We are both so scared of losing her. So, what do you other caregivers think?

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At one point, I talked about my fear of my parents dying with their estate planner.

He told me that they WOULD die. That it was when and not if. OH. I managed not to be shocked until after he left.

Sure, I knew that. But surely, not now, not yet...well, it turned out they had only a couple of years left at that point. It sounds like your mom probably has less than that. Sleep means she's comfortable, and hospice means its time to give the meds that make her feel or function better and skip the rest. You sound like you are taking awesomely good care of her, and I hope you get the chance to say the things that matter - maybe even hear some back - and make a few more sweet memories of your time together. Those little lucid spells are a wonderful gift sometimes.

My best memory of my moms time in hospice was when we got her up and I wheeled her around the garden and she even liked the flowers, plus she ate almost a whole piece of pizza with us just the day before she passed on. Do I still feel mad at her for not taking better care of herself or moving more and eating less and living into her eighties or nineties instead of passing on at 79 after 3 year of being pretty much helpless and in care? You betcha. Do I miss her? Yeah. Will I ever get over it? Not the way most people think, in terms of forgetting, but in terms of forgiving and healing inside, its a long ongoing process, regrets and hindsights may linger but yeah, you will most likely eventually do OK. And your story sounds like you should not have much to regret; you have stood by her and been with her all along, and there is not much better comfort than that.
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Your mom is on hospice care. That means a doctor examined her and/or examined her medical records, and determined that most people in her condition with her ailments would die within 6 months. This is obviously just an educated opinion. No one can say for sure when another person will day. (My mother was placed on hospice care with the idea she might not live out the week. Three months later she was discharged from the program because she made a dramatic improvement.) But my point is, it is likely that your mother is dying. That is a huge concept to wrap your mind around.

In a sense you are helpless, but you certainly are not guilty. None of this is your fault. None of this is due to your failure to discover a miracle cure.

What you can help with, and it sounds like you are doing it, is to assure Mom by your presence that you are there for her, that you love her, and that she is important in your life. You can offer (but not push) food and beverages. You can make sure she is comfortable. You can use the drugs hospice has provided to keep her out of pain. All those things are a great help.

Hospice is for the family as well as the patient. A social worker and/or a chaplain is available to discuss your mom's situation with you and your sister. I understand being scared of losing her. It is the natural order of things that parents die before their children; that children face the loss of their parents. Even if your mother were to get remarkably better now, it is most likely that you will lose her at some point. You have a great opportunity now to talk about this with professionals who are experienced in end-of-life situations. Take advantage of this.

Hugs to you and your sister. Your mother is lucky to have you with her at this juncture in her life.
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JimE, your Mom is very tired because she's not getting enough exercise, that is why the doctors had recommended rehab after her hospital stay. It is understandable that an elder would rather come home, and it is hard to tell them *no*. Usually when one refuses to go into rehab the hospital would recommend a physical therapist to come to the house. Was that offered? If not, check with the Case Manager at the hospital to see if that is still available.
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Speak with hospice and their doctor and ask directly if this is just how it is and her body is starting to shut down.. They can't tell you when, but they should be able to confirm what you are seeing and whether or not this is temporary or how it is going to be.

It sounds to me like her body is just worn out and she will spend more time sleeping than awake. You and sis seem to have been wonderful caregivers and made her last years comfortable and in a family atmosphere.
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