My mother (age 77) has lived with me and my husband for a year with advanced stage C.O.P.D. We did not think she would make it this long. The challenge has been that at whatever level of capability she had, she would refuse help and feign independence. Therefore, we would have to do things for her anyway, which caused her to be resentful or we would "sneak" in to do things for her, while she was in another part of the house. She identifies so much with independence she does not graciously accept help, which takes the fun out of helping. Note to self: accept help graciously. That said, I have loved having my Mom in my house, knowing she is safe and being able to enjoy her good days. A few weeks ago, she stopped all medication and treatment (including the 24/7 oxygen), and cut down her water intake to 4-6 oz. a day. She eats very little and only because I put it right in front of her (intake is maybe a small piece of pie and grapes one day; half a tamale the next day). The palliative doctor and nurse are aware of this and wanted to put her on hospice, even though she still would have months of life (if she were fully compliant). My Mom will not communicate AT ALL why she is doing this, but this has started a decline into dying (of course). I discussed the psychiatric aspects of this decision with the doctor, since Mom seems to be having some low level of psychoses or dementia. Previously, she had no dementia so it could be related to oxygen deprivation now that she is off her oxygen. However, before she stopped treatment and medication, she exhibited what seemed to be a psychotic break, similar to several such episodes she had in her life with a diagnoses of schizoaffective disorder. At this late stage of her disease, the medical team did not opt for psychiatric evaluation in a hospital (against her will). I agree with this, as she would struggle against that. As it is, she has refused any medication for depression or for the psychosis. This has been very upsetting, as I would like to have her with us longer. I have read online about elders refusing to eat and drink and that it could be a natural consequence of the body beginning to shut down its systems to prepare for death OR it could be a form of self-euthanizing. There is even an acronym: VSED (voluntarily stopping eating and drinking). Three weeks have gone by. She is still moving around the house, although she moans quite a bit from the labored breathing. She has lost a lot of weight, but had some extra so she is only now what I would consider "thin", not emaciated yet. It is difficult to see someone "wither away." I DO encourage her to eat and drink. The doctor said no "that will prolong her process of dying." The nurse said, yes "encourage her and keep the hope she may change course." Mom tolerates a little encouragement to eat, but basically seems to be annoyed by it. She says little and explains nothing.
The current problem is this: The same way she refused help at every phase of her illness to "do it herself", she is refusing hospice. She is refusing to have someone (including me) help her bathe. She is on week 3 and still comes out 2-3 times a day to sit and sip a little water and eat 6 bites of whatever. She is making it to the bathroom with great effort. At some point soon, she will be only able to stay in bed. I'm sure she will refuse help at that point as well. She can be very mean about it and has sent nurses away from palliative care. If she refuses to see the nurse tomorrow, they will cancel her palliative care and I will be completely on my own. When she is too weak to refuse, I will hire help. In the meantime, she has worn the same thing for 2 weeks and has not washed herself. I am allowing her as much peace as possible. She refuses to see family. I admit them in my home, nonetheless and let her decide to come out to see them or not. She is much annoyed at me for this. All of this is very emotionally draining, even though I have been encouraged (by some) to let her die the way that she wants. If dying is premature, its by a few months and maybe will allow her less malingering from her primary illness (C.O.P.D.)
My need is to keep her on palliative care so that we can easily transition to hospice through the same agency. Can I or should I insist to her that she must see the nurse? Should I encourage her to eat and drink? Is it most compassionate to just allow, allow, allow for her own end-of-life process? Do I allow her the solitude she seems to want or do I keep "sitting with her" with no sign that she likes it?
Thank you for reading!
We didn't force food and water on my father. We found that he liked finger foods better than full meals. Heavy food was hard on him. He did like cookies, snack cakes, ice cream treats, strawberries -- simple finger foods. He wasn't fond of drinking things, I believe because he didn't want to make extra trips to the bathroom. He would drink a bit, though, if we kept a bottle of water, soda, or ginger ale near his chair.
My father's body finally failed and we called 911 to take him to the ER. He passed in the hospital after four days. If he had lived, we would have moved him into skilled nursing care to continue his life. We did what we could do for him. When someone decides it is time to give up, we are left to watch and suffer while they go down. My greatest comfort was to remind myself that it was in God's hands now, so to let myself rest from the guilt I was feeling of not being able to help.
LadeeC
My good thoughts and prayers to you that it all works for the best tomorrow. I lost my dad 5 years ago today and had the opposite problem. My dad was in hospice and asking for his wife, my mom, to visit and she wouldn't go. None of this stuff makes sense for a lot of people. Lots of denial and grief all the way around. It's painful to witness and endure, and I mean ENDURE. I loved your comment about your mom surrendering to the love! I know your frustration and send you huge ((hugs))! Living in the moment is important, but disease or mental illness can rob us of the very thing we need the most. It is so very sad.
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