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Hello


First let me say English is not my native language, so excuse me for any errors.


My mom is 89, she is at home, where I have someone taking care of her , until I get back home every day, she is at the latest stage of dementia (not Alzheimer's), and for the last 4 or 5 weeks she has been deteriorating her condition very quickly to a point that now, I believe she would not live more than few weeks.


All the signs are there :


Refuses to eat and drink, ( even with subcutaneous hydration she tends to dehydrate)


diminished urine output ( almost only at night)


she now sleeps about 16 hours a day


when she is awake, her look is distant and withdrawn


Hard to medicate as she constantly refuses food or liquids


blood pressure seems to have lowered, even without some of her high blood pressure pills


general state is very frail and not responsive


A couple of days ago , she was dehydrated again, and before I knew if the sudden deterioration in her health was caused by an infection, rather than the natural process of her body letting go, I decided on the insertion of a feeding tube. I have just gotten the results of urine and blood tests, and there is NO urinary tract infection, and the blood test indicates a very high "sedimentation Rate"


I will go to her doctor and try to understand if this is an irreversible medical decision, and the steps I should follow now (I have to say I do not trust doctors much)


She has only been for 2 days on a feeding tube, but now that I know that she has not an urinary tract infection, what do you think I should do?


Continue with feeding tube or not? IV hydration ?


She has been for the last 2 months on subcutaneus hydration, wich gives her about 500ml serum a day, should I continue at least with that ?


I Love my mother so much, and it breaks my heart to witness her constant decline, but I dont want to cause her any pain, and discomfort by trying to "help" her.


Did you have similar experiences with your loved ones ? What did you do?


Thank you all

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This is going to come across as terribly blunt so imagine I'm putting my arm around you as I say it - Everything I have read about IV hydration and feeding tubes in advanced dementia tells me that at best they will buy a few extra months of very poor quality life, the dear woman is 89 years old and seems to be clearly demonstrating that she is ready to go. I'm sorry.
Helpful Answer (16)
Reply to cwillie
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If you are in the United States, ask for a hospice evaluation. Hospice services specialise in end-of-life care and they are the best people to help you with these terribly difficult decisions.

If you are not in the United States, if you wouldn't mind telling us what country or region you're in perhaps we can help find the nearest thing to hospice.

The thing about treatments such as hydration and feeding is that, while not painful, they are burdensome for the patient. Her body is gradually closing down its functions, and yet we are keeping them going by artificial means. At the same time, withdrawal of these life support treatments can feel like a terrible thing to do: as though we are giving up, or even worse "killing" our parent.

So the best thing to do is be guided by professionals who understand the natural processes in full and can help you decide what is truly in your mother's best interests. Whatever happens, it should be possible to ensure that your mother is comfortable, not afraid and free of pain.
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Reply to Countrymouse
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A feeding tube is reversible but...
Please do not do a feeding tube.
It can be confusing and many with Dementia will pull them out either the nasal one of the one that is placed into the stomach.
When a person is reaching the end of life the requirement for food lessens and to give food when the body is not using it can do more harm than good. The body will, as it slows down stop digesting the food so it may accumulate in the stomach or intestines causing discomfort possibly impaction that may require surgery.
Just hold her hand, tell her that you love her and she has nothing to worry about.

At this point what I wanted for my Husband was just that he be at peace, no discomfort. He was no longer the Loving, Vibrant, Funny, man that I had fallen in love with 35 years before. I told him I would be alright and that it was OK for him to go...
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Reply to Grandma1954
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Hello. I do not know the answer to your question. I just want you to know that your question and your situation touched my heart and I wish your mother a peaceful passing, and I pray that your love for your mother will comfort and sustain you at this difficult time. Know that you have done all you could for her, and that is all that truly counts. Peace to you.
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Reply to DesertGrl53
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CP, I had the same reaction that CWillie did to your post.

I understand that you are sad that your mother's health has declined. Did you and she have conversations prior to her illness about what she wanted done or not done at the end? Would she have wanted to live this way?

Is Hospice available in your area? Having a Hospice evaluation might give you valuable insight into better ways to maintain your mother's comfort right now.

((((hugs))))))
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Reply to BarbBrooklyn
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My mother did have a feeding tube for reasons different than your mother. But there was a point where it became clear that she was not communicating with us anymore, not digesting the food, and declining in general. The decision was made to not feed her any longer, there was no argument about the decision, the doctor, staff at the nursing home, and our family all agreed. The tube was used from that point on to keep her hydrated and she peacefully passed away in two weeks. So in answer to your questions, the feeding is definitely not an irreversible decision, and keeping her hydrated is a kindness. Our doctors told us the body can easily go without food but dehydration is a painful way to die and it doesn’t take a full amount of hydration to keep a person comfortable. Blessings to you as you go through this, I remember it too well and it’s just never easy
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Reply to Daughterof1930
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Thank you all, for your input. You have helped me so much.
I wouldnt imagine that the responses would be so overwhealming against feeding tubes in late stage dementia. All of you believe that at this stage is much better to let the natural course of life happen, rather than try to counter it, wich I now understand, after all it is a irreversible condition, and it only gets worse, so what would be the point of forcing the continious suffering.

I will seek help from hospice profesionals as you said CountryMouse, and thanks for your contacts, I will use them.

DeeAnna, the links you sent were so enlightning, I read them all, specialy the one from "americanhospice". Some times I had to stop reading and cryed, and I still need to find a way to accept within myself.
It is probably in our genetics to preserve the life of our loved ones, but I I know I will find a way to cope with it

All the best for you all
Carlos
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Reply to cpampas
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Cpampas, based on what I glean from some articles online, there are three types of palliative care within the Portuguese health care system, ranging from independent PCUs (Palliative Care Units, which are essentially hospices) to hospital based palliative care to home based teams.

Does the NNICC mean anything to you? "National Network of Integrated Continuous Care" it stands for, apparently, and this network is responsible for providing hospice services.

You could also look online for charities that offer support for end of life care.

Who is providing the caregiver? Is that a nursing agency or is the caregiver someone you hired yourself? Does the person have nursing skills?

The trouble with artificial hydration is that if your mother's kidneys are not functioning it is no good loading extra water into her.

Talk to your doctor, ask about palliative care or hospice services, and don't be afraid to be pushy. I'm very sorry you're going through this. I hope you get some help very quickly.
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Reply to Countrymouse
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Your mother is in what we call active dying. Her body is shutting down. I know this is a difficult time but my suggestion is to reach out to your local hospice organization. They are there for your mom and for you! God Bless you for being her care advocate!
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Reply to Conniebohager
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If she were in hospice, they would NOT have put in a feeding tube, but instead given her morphine to ease her transition. (Although I suspect the morphine is more for the benefit of the family than the patient). A lack of interest in food and drink is Nature's way of dying. It is hard on the caregivers, but the person dying is better off than being forced to have feeding tubes, shots, etc. Sometimes you just have to let go and let God (if you are religious). No one lives forever. What would you want for yourself? I have told everyone in my family my wishes.
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Reply to Arleeda
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