If a parent wants to die at home, when the time comes how does one handle illness?

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If a parent wants to die at home, when the time comes how does one handle illness?

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What if a parent becomes sick with vomiting, but doesn't want doctors or hospitals to be involved?

Care Decisions End of Life

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First consideration: are they competent? If they are they have the right to make choices, but of course you do not need to enable them.
Have they seen a doctor in the past - any idea of what might be wrong? Not just flu is it?
I don't know if you could report them to APS for self-neglect...Do you have medical POA, do they have a health directive, or similar document specifying their treatment decisions?

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She has type 2 diabetes, had her thyroid removed which she took meds for, and was taking a medicine for a mild heart issue. She stopped meds about 2 1/2 years ago, and felt better without them. She doesn't want to take meds. She used to be a nurse, so she knows what she needs. She just recently started vomiting and not wanting to eat. she ate some soup today, and she seemed better, then got sick again. This has been going on for about two weeks, off and on. We asked her today if we could take to to the ER to see whats wrong, she flatly said no. No doctors, no hospitals, no outside care. She just wants to die at home when its her time. Would never betray her by reporting her for self-neglect! These are her wishes, she stated them years ago and still feels the same. She has written it down on a form, but its never been "legalized" and she said that is all she needs or wants to do.

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Does the person have a terminal illness? If so, they can go on Hospice in their home. People have a right to die like they want.

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She does not actually have a terminal illness. She has type 2 diabetes, had her thyroid removed which she took meds for, and was taking a medicine for a mild heart issue. She stopped meds about 2 1/2 years ago, and felt better without them. She doesn't want to take meds. She used to be a nurse, so she knows what she needs. She just recently started vomiting and not wanting to eat. she ate some soup today, and she seemed better, then got sick again. This has been going on for about two weeks, off and on. We asked her today if we could take to to the ER to see whats wrong, she flatly said no. No doctors, no hospitals, no outside care. She just wants to die at home when its her time. This is very difficult to deal with, with her feeling so badly. She is 82 years old.

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Your profile says you are caring for an elderly lady friend. It really would be more helpful if you could give more info.

Is she chronically sick? Or have any gastric/intestinal problems?
Does she have any family and appointed a POA?
How old is she?
Does she have a terminal illness?
Does she suffer with any dementia?
Does she have a POLST on file with any hospital?

If she is mentally competent, she has the right not to use medical care of any kind. As difficult as that may be, it's the law. Maybe you can use over the counter medications to relieve certain medical problems like nausea, constipation, allergies, etc.

There are various home remedies for nausea (mint tea or mint aromatherapy, ginger tea or candy, inhale lemon oil, saltine crackers, Pepto Bismol, Kaopectate, Dramamine or Coke syrup (medication called Emetrol) can make you feel better.

Don't lie flat but be propped up somewhat. Try to sleep on the left side. Eat small, bland meals. Avoid strong smells and get a bit of fresh air. Some folks use vitamin B6 supplement when nauseated.

No smoking, coffee, spicy food or alcohol.

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This IS a person very close to me. She was doing well up until the last week. Her son is taking care, he even had to quit his job to do so, making it difficult for himself. He nursed her back from death basically (she was VERY bad off emotionally & physically) two and a half years ago. The daughter had left her to die basically. Nevertheless, she specifically does not want any help. We asked if we could take her to the ER today, she refused. What then? She is mentally competent, very much so.

I've found all the foods she should eat and avoid. She doesn't smoke, drink or eat spicy foods. She has her meals prepared for her every single day, healthy ingredients. She wont take any supplements Or medicine. She actually got much better NOT taking prescribed meds for diabetes and thyroid. She is so skinny now, she doesn't even display Type 2 diabetes. She used to be a NURSE herself, so she knows what should be done. Shes been on broth now, crackers, sipping water. Today she took a turn for the worse. She is just lying down. She eats ginger almost on a daily basis. I may try the Emetrol, thank you for the suggestions.

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My mother felt the same, and I was with her at my home and then in her flat for the last four weeks until she died. Her GP was a moral support for me and no pressure for her to go back to hospital. We didn’t need many GP visits, it was well understood that she was dying. I made two or three phone calls for advice to the local equivalent of hospice - I didn't even know how to make the bed with her in it when I started! I found that people were kind and helpful once they were clear what was happening.

My mother’s cancer metastasised to her abdomen and she had frequent bowel movements but very little nausea – probably much the same level of cleaning up. It was very helpful to have the doctor for medications, particularly for morphine in the final stages which might otherwise have been quite painful. The local pharmacist was also helpful, with a home delivery service and fuss-free sympathy. There are no ‘wrong’ decisions unless they cause pain, so there is nothing to be afraid of in a home death, but I would suggest that you have a sensible GP who is prepared to home visit when needed. It also makes the death certificate straightforward if the doctor knows what is happening.

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Thank you for sharing your loss and experience. I appreciate your candor and concern. God bless you.

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Hospice should be called in after a referral by her physician. That is the best way

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It's still a heavy load of work.
I had so little time to just be with my husband as he died.
The phone kept ringing, or hospice people came and went, or I had to keep the oxygen machinery clean, change the bed, do the laundry, prep food and clean up, bed bath him, give meds, and keep him comfortable as much as possible.
To leave the house to buy groceries or do any outside necessary activity I had to time it to the hospice visits or get the 4 hr a week volunteer to stay with him. He didn't want anyone there who wasn't absolutely necessary and it was heck of a problem.
We were private people and didn't have a lot of friends he was comfortable with to ask for help. No family in this retirement area, either. If they had been here, they all would have been working and mostly unavailable anyway. i was lucky one sister was with me when he died. She just took over so I had time to cry.

It was a long term stress that left me exhausted from lack of sleep, no rest breaks to speak of, no opportunity to refresh if I'd had the freedom for it.
Hospice was a help w/ medical care, but i have thought ever since that there had to be a better way. Wish I knew what it was, aside from overriding his wishes and sending him to a hospital so others would do all many care functions and he and i could hold hands and just be together with our memories and our love in his last hours.

My plans for my end do not even entertain the idea of home care. I will get myself into a hospital or die quickly by whatever means available. Those will be my best ways.

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I would call hospice. They keep the patient comfortable. I don't know what I would have done without them. They had a nurse come in for my Mom, prescribed any meds she needed through a hospice doctor, and made sure she was comfortable, and they sent a couple of ladies that would bathe Mom and change sheets etc. a couple times a week. My Mom was completely bedridden so hospice was a Godsend for us. Things got easier once they came on board.

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I agree 100%. Hospice was so incredibly helpful when my sister was dying of emphysema. I made the referral myself, as her caregiver, by just phoning them. They took care of the rest. The physicians in her life had to specify that there was no cure and that she was not going to get better, and then she needed to accept this. I also don't know what I would have done without them. I was her only caregiver and had no idea what to do. I'm so grateful to them, and to Medicare for paying for their services.

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Contact Hospice.
Once a person refuses treatment for a "life limiting condition" the person is probably Hospice eligible.
And do not call just 1 Hospice call a few and "interview" them. Just like you would research a new doctor for yourself, buy a car, or book a vacation package you need to compare what they have to offer. Look at reviews then make a decision. Many times people do not have the option to pick and choose but if you can do so.

Hospice can make keeping your loved one at home possible with the right equipment and supplies. Having a Nurse come in at least 1 time a week, a CNA a few times a week, and the availability of a Social Worker, Chaplain, other therapies as well as volunteers that can come in and help.
And the choice to go on Hospice is not a permanent one if they or you decide later that this was the wrong choice you can go off Hospice at any time. And you can go back on if you so desire.

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I would promise her, cross my heart, that I would fiercely support her right to stay at home and refuse all unwanted treatment on condition that she allowed me to telephone for medical advice.

You could point out, too, that wanting to be allowed to die with dignity, not being poked with needles or forced into hospital, should not mean that she has to put up with vomiting and feeling terrible. Symptoms like this can be treated just as well at home.

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Thank you very much for this

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If you can find one in your area, a true Palliative Care team can help your mother going forward. Their focus is on comfort care and while hospice is one type of palliative care it is not the only type.

I recently asked for a Palliative Care consult for someone and was told that only happens at the end of life. So some places still only have hospice services available under the palliative care umbrella. However, Palliative care has been expanded to cover chronic non life threatening illnesses in some areas of the country. Medical professionals help you weigh the pros and cons of various medical interventions with the goals that you, the patient, set. Maybe you will be lucky enough to have that available to you.

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Thank you for this suggestion and the experience you provided. ~_~Very helpful, and I thank you very much!

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I would really suggest that hospice be involved. And because of a totally different reason than what the others have posted - their points are very valid. My concern is that if someone dies at home, the police or EMS and the coroner will have to be involved in order for the body to be removed. Unless there exists hospice or palliative care on file with an already in place MD evaluation & orders, it will likely have to be looked at as suspicious circumstances for death.

If you benefit from the death in any way, could be a minefield for you.

You are not actually a family member, right? She’s a neighbor?
So where is this persons family in all this?

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This IS a person very close to me. She was doing well up until the last week. Her son is taking care, he even had to quit his job to do so, making it difficult for himself. He nursed her back from death basically (she was VERY bad off emotionally & physically) two and a half years ago. The daughter had left her to die basically. Nevertheless, she specifically does not want any help. We asked if we could take her to the ER today, she refused. What then?

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Call the ER no matter what and then they decided to send a parent to the hospice. I know you want to respect their wishes, but you cannot help them alone.

My dad wanted to die at home as well. My dad’s caregiver and I had to call the ambulance to take my dad to the hospital because he was hurting badly and then we found out that he was dying of advanced lungs cancer. He ended up going to the the hospice room until he died three days later.

I did not like it at first, but I’m glad that I did it because it was a right thing to do.

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He's at peace now

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When my mother was dying we kept her at home and hospice came to us. She had been in the hospital and there was nothing to be done but make her comfortable. A social worker at the hospital set us up with hospice, they came to the house with medicine and supplies, visits from a home health aid to bathe mom and change sheets and anything else needed. They would come and check on her, see if we needed more meds or supplies and the morning she died we called them, a nurse was sent to declare death and then they contacted the funeral home to pick her up. A DNR is required so if someone panics and calls emergency service they will not resuscitate, after all hospice is there to let the person die comfortably and for family comfort and protection from over zealous family.

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Home Hospice.

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Hello toco. I can only imagine if One were to die due to old age and sickness there would be noting so comforting or beautiful than to die in Ones own bed at home with those Who She or He loves by their side. Consider it Your last gift to grant their final wish. Yes I agree with all of the Carers Who have answered Your question, get Hospice involved and invite them into Your home to Care for and to ensure Your Parent is granted a pain free and peaceful end to their very long and beautiful Life. I wish You and Your Parent so much peace.

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Thank you for the kind words.

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My mother was diagnosed with metastatic lung cancer 10 years ago; the cancer had spread to her bones and liver. My mother had hospice care at home as my sister and I wanted it that way. My mother went very peacefully the following week, and I know my mother is at peace now; my sister and I just wanted to let nature take its course. Should something happen to me, I have requested to die with dignity

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Something else Hospice is a godsend for, that I have not seen mentioned here: medicine. When my DH was dying, it was impossible to get the quantity of pain medicine he needed without Hospice involvement. It wasn’t massive doses - but it was more than commonly subscribed which made the pharmacy refuse to fill it. Once Hospice arrived, no more restrictions. The number one thing you want to do is keep the person pain free, as their final days count down. Best of luck, dear, and God Bless.

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That is so true. When Hospice told me that it would probably be only a week or so until my sister died, they provided excellent painkiller(s) so she wouldn't suffer. She was pain free as her final days counted down. Well said, Becky T. I can't recommend Hospice services more highly.

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is Hospice involved? if not get them quickly to help with this sort of thing. I have a parent at home as well and before they are sick they say what the wishes are and it sounds just wonderful to peacefully die at home but sometimes the reality of that is not very pretty or peaceful

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Your replies have been very helpful and welcomed. I thank you.

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The caregiver's needs matter too, and having to deal with distressing physical symptoms without any avenue to seek help or advice is a recipe for major anxiety and doubt. Tell your parent that although you respect their decision to die at home you can't do it all on your own.... reference that adage about putting on your own oxygen mask before helping others, if you burn out they will end up exactly where they don't want to be.

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HOSPICE... make sure you get a nurse that you are compatible with, it makes that difficult journey, so much easier, than what l ever thought possible!💝 Hospice, Social Worker, and for me, God holding my hand.

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You'll have to get Hospice care.

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I would contact Hospice explain to patient you can’t do it alone
Don’t give in and follow throughI had to do that with my husband
He just accepted things and he was able to die at home as he wanted

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What happens when the patient hasn't been to a physician in years? Without a referral, from what I have researched, the patient cannot have Hospice come to the home. What can one do then, if the person wants no doctors or medicines to stay alive?

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Toco, how is the lady's son doing? This must be incredibly stressful and upsetting for him. What's his point of view?

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Thank you for asking. When she is hurting, because he feels helpless, he is beside himself wondering what to do . He stayed over at her house last night because he was afraid she may need assistance (They allowed HIS son (24) to move in there a year ago, and he isn't much help. He does work, but he is more of a problem than any assist. He needed a place to live, she did not feel safe alone at night, so he moved in). My fiance, her son, has helped her for the past 2 1/2 years, keeping her clean, brushing her LONG hair, cooking her meals, playing her card game with her, watching TV and movies with her, etc. He is an avid fisherman and he completely stopped fishing in order to care for her. She told him he was a good son, which meant a lot to him, as he was closer to his late father than to her. They did not have much of a relationship till now. My fiance wishes his mom would let him bring someone in to check on her, maybe at least alleviate her pain. She just flatly wants no one there, and I was looking at her OLD papers that state the same. She filled out a H.E.L.P. form and she has felt this way since before this form, last dated in 2002.

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Poor man.

I had an aunt with a similar attitude; and, actually, a not dissimilar family set-up. Her grandson stayed with her on and off - needed the roof over his head, truth be told, though he did also give her help and company, he wasn't a bad lad - and she had made sensible preparations many years ahead by moving into a self-contained apartment within a facility.

However. What none of us knew, because she went to some lengths to conceal it, was that she had been diagnosed with Chronic Myeloid Leukaemia. This is a disease which can be controlled for quite a long time but inevitably, eventually, shifts into an acute, lethal phase.

Aunt was determined to stay in control. She was also a retired doctor, and so knew what she would have to control, so to speak. Her plan was that she would die at home without interference.

And had she not allowed her DIL to bring two little great-grandchildren to stay with her over Christmas, aunt would have got her wish. It would have been hideous, terrifying and painful, but she'd have got it.

DIL, who had no nursing experience beyond standard family matters, complied with aunt's refusal to accept any medical or nursing help right up until a massive haematemesis. At this point I happened to ring with Christmas greetings, and DIL told me apologetically that she had insisted aunt let her call for help - bearing in mind this was the first I'd heard of it I couldn't understand what she was being so apologetic about. An ambulance arrived, aunt was taken to hospital, she was stabilised, she lived for a few days which included time with her son who had come from overseas to be with her, and she died peacefully on New Year's Day - in hospital.

The moral of the story for your fiancé and his mother is this. If the lady wishes to die unmolested at home, an aim which I can entirely understand, the way to do that is to accept help at home and have your end-of-life support ready in place. If she continues to fly solo, there is likely to come a point where the symptoms become so frightening or so painful that she will crash; and the result of that will be the *opposite* of what she wants.

It is also, of course, quite possible that what is causing her pain right now is not what she fears. Nurse she may be, but qualified diagnostician she is not. Obviously I wouldn't say that to her! - not unless you want a poke in the eye, anyway - but it might be worth arguing that finding out where she stands is not at all the same thing as changing her position.

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Another comment from me, even though I have already commented about Hospice care.
I have to say that Hospice is nice...however, the experience I have had is VERY limited with them. as in, their service has been much LESS than I thought it would be. Our nurse is very non chalant and while I am watching my elderly mother actively die they are telling me (on the telephone) it looks like I am doing everything right and haven't even popped in to see if my mother or myself need anything during this critical time. I have found private care CNAs or experienced end of life caregivers are actually a MUST have at this point. Watching someone die is not a TV moment- close your eyes, etc. It is gut wrenching, up and down, and all sorts of symptoms and behaviors that will send any caregiver into a tail spin. Yes on the Hospice, but always have a plan B to fall back on.

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toco8560: If a person hasn't been to a physician in years (and I know a lot of people who are not "doctor persons"), ask for a Hospice evaluation.

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From what I have read, Hospice is usually a very good idea. However it is not essential - please read my own experience in the second post on this site. And it does seem as though sometimes Hospice doesn't work out as well as it should - people being a bit too pushy, and a bit too omni-present - read the experience in the answer before my own early post. Perhaps see what the lady wants, and give her the option of trying hospice but cancelling it if she would prefer more peace and quiet at home. However make sure that you have some way to get a morphine driver if there is a lot of pain at the end, as my mother and I did through her GP.

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If a parent wants to die at home, when the time comes how does one handle illness?

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