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when she is awake, her look is distant and withdrawn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
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.
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...
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))))))
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
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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