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when she is awake, her look is distant and withdrawn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 your mother has a living will stating that she does not want extraordinary measures taken to prolong her life, then you will want to respect that.
If you have the power of attorney, I think It is helpful to try to put yourself in the place of your mother, and try to imagine how she must be feeling. Being hooked up to tubes is uncomfortable at best and can contribute to the likelihood of infection (and possibly a miserable and painful death by sepsis) as well as create a feeling of claustrophobia for some.
I know what a terribly difficult time this is; in fact, it may possibly be the hardest thing that you ever have to experience. It is heartbreaking and emotionally and intellectually difficult to arrive at what you feel is the best decision, but with guidance from physicians and perhaps even a good attorney, with your love and sincere desire to do the right thing, you can walk through this knowing that you gave it everything you had.
She did not eat for FOUR months and lost about 50 lbs, and she is only about 5' 2". (she needed to lose about 30 lbs, though). The nursing staff and I tried to feed her anything and everything, including all the liquid supplements. She would eat little teeny bites and quit after only eating 5% of her food. Her hearing was bad. She had UTI's.
EVERYone thought she was a goner but me. Even a home health nurse told me it was time to put her in hospice. I thought it was just a bump in the road in part because she was fine before the stroke.
I had scheduled a Peg tube in March due to her poor eating and hydration, but the surgeon who put a stint in her carotid artery said it wasn't necessary and then another doc told me negative stories about the tubes getting infected or being pulled out or getting backed up. And she had periods of regaining her appetite. So, I cancelled the tube.
After Mom's 2nd hospital visit for dehydration, I had her admitted to a rehab facility, thinking they could do a better job of keeping her hydrated AND would get her mobile again and well-fed. They did none of that in the 6 weeks she was there, and the stay gave my disturbed niece an opportunity to repeatedly fill Mom's head with the notion that I didn't want her anymore.
So, I brought her home and had the tube put in a week later.
She magically got her appetite back just 2 days prior to the tube and hasn't lost it in the 6 months since.
Now I wish I'd done the tube sooner! She still doesn't have a good thirst drive, so it allows me to make up for that. I don't put food in it at all since her appetite has resumed, which is pretty amazing since she has had a hiatal hernia for years, which affects her ability to digest.
I had a PT coming to the house and she's back walking (with walker), laughing, talking on the phone, reading the newspaper, watching tv, and going with me to the grocery store.
Since Mom didn't have dementia before all this, the circumstances are different from yours but somewhat similar. I'm not trying to give you false hope; I just wanted to relay my positive experience.
Even though she fights to speak, she has made it clear for years "NO STUPID TUBES". When God is ready for me, I'm going to leave this pain. She has a do not recuscitate form on file. She's told me she is ready to go. So, My family will honor her wishes to be creamated and her ashes returned to her birth home in the mountains of Oklahoma. She was a special lady who was active to the point of over doing it but, her gardens and cooking are legendary in our area. She will be missed by everyone. She wants to see her mom and other loved ones.
So yes, I feel your pain, the guilt of wishing they would live forever but for everything thing there is a season. May our parents seasons end peacefullyl
This is such a bumpy road we are all on. It seems you have received your answers. I tend to agree with your distrust of the medical people but have also found if you look hard enough there are some good people out there. It's unfortunate no one educated you prior to the tube going in. I was going to suggest an organization called Curadux which helps in complex situations by having access to experts and helping to review options and the best decisions. Take comfort in knowing you are not alone. There is a great group of people here and I think we keep in each other in thought...take care...
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
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...
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.
I am from Portugal and I believe paliative care institutions in my country are not even close to what you have in the U.S. or other european countries. As so many suggested I will have a profesional to evaluate my mother´s situation.
daughter of1930, you said your doctor told you that "the body can easily go without food but dehydration is a painful way to die" .
This was also my plan, to hydrate her, subcutaneously or with the feeding tube, but no food, but I have also heard that there is no pain when dying dehydrated, in fact some say there is a kind of peaceful feeling.
Mom and I never talked about what she wanted me to do in a situation like this, so I just want her not to suffer, I would prefer her to go sooner but in peace.
Please let me know if you have any other thoughts about this, or experiences you would like to share
Thanks a lot
https://www.alz.org/national/documents/brochure_endoflifedecisions.pdf
"END-OF-LIFE DECISIONS HONORING THE WISHES OF A PERSON WITH ALZHEIMER’S DISEASE"
https://americanhospice.org/caregiving/artificial-nutrition-and-hydration-at-the-end-of-life-beneficial-or-harmful/
"Artificial Nutrition and Hydration at the End of Life: Beneficial or Harmful?" By Cheryl Arenella MD, MPH
https://www.verywellhealth.com/artificial-nutrition-and-hydration-1132312
"Artificial Nutrition and Hydration: Feeding Tubes and IV's at the End of Life"
https://www.caring.com/articles/end-stage-dementia
"Caring for Late Severe End Stage Dementia: A Caregiver's Guide"
https://www.medicalnewstoday.com/articles/320794.php
"What are the signs that someone is close to death?"
https://www.kevinmd.com/blog/2012/02/ready-death.html
"How to get ready for death"
Praying that God will guide you. {{Hugs}}
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.
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))))))