At home Mom stopped eating, but said no to hospice. Now what?

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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!

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A question: in your case, does Palliative care equate Hospice? If not, changing over to Hospice Care may be one of your solutions. Honestly, they don't question much of anything, and I've had the nurse just stand in the doorway and check Dad when he didn't want to see anyone. This can work if you have her POA for healthcare, and she's been determined to have dementia to the point of being unable to make legal and medical decisions. I'm on round two of Hospice, this year. First, with my dad, and now with Edna. After they stop eating, it doesn't take long for the loss of nutrition to effect the brain (remember, it's as much of a muscle as all the others in the body) to the point they really can't make "rational" decisions. I'm inclined to think that deciding not to eat as a method of exit is actually one of the least painful ways to go .. it's so slow, there's virtually no direct pain associated with it ... and she'll begin to sleep more and more, which will make ministering to her easier. Hang in there. Hold onto the love.

LadeeC
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Thank you, Pam. Yes, I will ask her. Good answer! We have the forms filled out, no intervention except for the nebulizer, bipap, IV. But, she may have decided no on all of it since then. I will check in with her. The good news is that we think she does not have a cold.
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niyah, ask her what she wants. If she says no hospital , then do not call 911. Get the MOLST form for your state and go over it with her. Our mom said no feeding tubes, no IV, no more ER, no machines of any kind. She just wanted nature to take it's course and to have pain meds when needed.
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Thank you everybody for your valuable, caring responses. It really keeps me going. Its so easy to feel alone while around a loved person declining. Mom is losing weight and she may have caught a cold. I hope not. I would rather see her steady decline from lack of food and water, than see her struggle with breathing to the end. If she gets bronchitis, would I call 911 and hospitalize? She is on about day 25 of the minimal eating and going off oxygen and meds. I have been surprised at her relative level of comfort, but a cold will put her in a different situation.
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Thank you Meow1941; I sent you a private message. Everything you wrote helped! Heidi73, thank you for the description. I think those small group homes are really valuable. There is one just like that in the house next to my house. I was ready to place Mom there; they just happened to get an opening. That was 3 days before she stopped treatment and meals. (She is still eating finger foods through the day but under 300 calories). We don't think she will do better at the home next door; she declined going. She wants to stay "home."
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Niyah321oki: My mom is in kind of a group home. The woman runs it and lives in the home herself with her family and there are a total of four residents. In this case the lady who runs it has her husband and young son living there (the residents love the kid, too, as he's kind of a happy ball of energy, but not a pain). My mom has dementia but it's not super progressed yet, but in this place they get checked regularly that their blood sugars are OK, their meds are taken, etc. They have a group setting but can relax and watch TV, play games. My mom even got to cook dinner for everyone one night, so they try and let people do stuff they enjoy, and keep a bit active. At first my mom was mad, blaming the woman who runs the home, but now she blames me. So she's sort of adapted at the home. Occasionally she'll want to leave or whatever, but I think she is somehow more polite (most days) because she's not related to anyone in the home. (My mom has issues with her whole family.) It's nothing fancy, but just sort of feels like a home. No bad smells of pee or anything. It's more a case of my mom may enjoy it there if she gives it a chance. And I can now be the bad guy from afar.
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I went though almost the exact thing with my mom who was on oxygen for 3-4 years and stopped all schizoaffective disorder meds, but kept her oxygen on, she also had severe C.O.P.D. She would be mean to the nurse, and O yes she did refuse service, But she also was on pain medication and I would tell her i would give her 1 after she sees the nurse and that the nurse only wants to listen to her heart and lungs and that's all I did not tell my mom about hospice because of her schizophrenia I just told her the nurse was here or coming weather she liked it or not but bribing her with her pain pill helped greatly, My mom got so mean towards her end stages that she would tell me she hated me, but I knew she didn't, as for showers my mom couldn't because the hot water air would put her out of breath so she stopped and was just trying to hand wash till she was out of breath, she wouldn't let any body help either she felt independent also, But while in hospital on morphine, my sister and I took it in our hands to wash her up every section of her body including her private parts and Trust me I know she felt dirty and didn't want to stink dying. Oh she looked good with hair done, body cleaned, New johnnies About after a week she had passed. She weighed 80 pounds, I can relate to you on so many levels, I know it's hard but it does sound like the same with my mom she had giving up and didn't care anymore and just wanted to leave this world. you might try tricking her or just telling her as it is and that is what is needed in her condition, I wish you all the best, I know how draining it was for me because she was up all though the night and only took very short naps during the day I was on my toes 24/7, I know at that age which my mom was 71, it's hard to have to tell your mother what to do instead of her telling you what to do, but try telling her they just want to check her heart and it will only take a few minutes I wish you again the best I know how hard it is to deal with a loved 1, Try to stay healthy for yourself I know it's easier said then done.
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Thank you Sunnygirl! Heidi73, read through this please, I have a question for you at the end. I really appreciate what you said Sunnygirl. It was such an "aha" moment reading what you wrote. My husband and I got used to appeasing Mom with her new "acting out" behaviors, we kind of forgot she could go to her room and let us have the kind of receptive environment we want with the household. Somebody needs a time out!

Heidi73, yes, thank you. Your post made me consider reassessing if my home is right for Mom. She has picked up a little on eating and drinking and has not stated an intentional plan toward dying (not that she needs to). So, maybe a neutral staff could help her adjust better than I can. One just hopes there is good staff somewher! Heidi73, what kind of home is your mother in?
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It could be a combination of things: dementia, depression, and so on. My mother is the same age and is in a home right now because she stopped taking her blood pressure medications and wouldn't eat regularly (she's diabetic) and had poor blood sugar readings. It's a tough call. You don't want to prolong someone's life unnecessarily, but you also worry (or hope) that with just the right care they may pep up. My mother is on a new antidepressant, and we're hoping that helps. But sometimes people feel the end is near and prepare in their ways. Time will tell.
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Niyah, since your mom is not operating normally, what if you just let her act out, but retire to her room is she feels like it? Why allow her to kick your sister out of the house? I'm not suggesting that you argue with her or even try to change her conduct. I'm just not understanding how a person who has little to no judgment should rule the household. I would be very compassionate, but not allow the inappropriate behavior to ruin the day or unnecessarily disrupt plans for her caregivers and other concerned family members.
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