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My mother 67 now had a Brain stroke that left side completely paralyzed. She lost her speech too. We had her on tracheostomy initially and then ryles tube. Now she is on Peg tube. Doctor has asked us not to feed her anything via mouth or she will aspirate and can be fatal. Everytime I eat my meal here I think of her. Its very upsetting to see her like that



The reason I'm writing is > She is undergoing lot of pain. When the physio therapist comes everyday, she cries with pain and her left arm aches a lot. Her overall reaction has become much less. She used to actively wave before but now she is very weak and just keeps looking at us without any response.



She has 24/7 homecare and we all live away. My heart just breaks seeing her, sometimes I feel we are just holding her by feeding her food. I wonder if she wants to live longer. I personally feel she is going through a lot of pain everyday. I dont really know if I have a question here or not, just so not fair she is going through this

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As you don't ask us any questions, I won't give you any opinions, other than to say, as a nurse all my life, I agree with your suppositions and your beliefs about what your Mother is going through.
Has your mother ever expressed what her wishes would be in circumstances like this would be with any members of your family?.. Has your family spoken with a doctor re prognosis? Has there been any suggestions about the availability of palliative or hospice care for the future?
Did your Mother have an advanced directive? Did her advance directive give any instructions on what she would wish for for a quality of life? Having been a nurse mine is very explicit about what I would not accept or want including tube feedings, dialysis, etc. I recommend that everyone of every age make out such a document and amends with their choices, making it clear to family members.
I am very sorry. I can well imagine your heartbreak and grief.
What are your families feelings now regarding any questions of intubation, or resuscitation, in the future. While feeding tubes will put off some of these decisions by some days or some weeks, these decisions will come.
As to pain, yes, the muscles and limbs contact, ligaments shorten and tighten, and manipulation of these limbs is then very painful.
Unfortunately fairness isn't a part of life. I am so sorry for your grief, and for your anticipatory grief. The only good thing I have ever known of long term disability of this type is that it does ready family to "let go", and in fact at times has family literally praying for the release and peace of the person they love. My heart goes out to you. I wish the best for you and for your Mom.
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I’m so sorry your family is going through this. Our family walked this road and know it’s so very hard. My mom had a stroke from a bleed very unexpectedly. She slept for 3 solid weeks after it and awoke completely unable to do anything, meaning literally anything. She had a team of doctors who very much encouraged us to let a feeding tube to placed temporarily so she could recover in rehab. They told us there was great hope of recovery. In rehab, she tried valiantly but made no progress. She spent 4 years in a nursing home unable to do even the smallest thing, but completely mentally intact. It remains the cruelest thing I’ve ever witnessed. There was never a time we thought to stop feeding her, it may have been different if she weren’t awake, aware, and present mentally. But to starve a person is very hard to decide. It would have been much kinder if the stroke had been fatal. We were blessed that mom received good and compassionate care, but there’s no doubt it was a nightmare for her. I don’t have advice, just know the pain of it and wish you both peace
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This is why everyone should have a conversation about this and have their wishes documented. For my family, it's no tubes of any kind. No ventilation or feeding tubes. After a certain age, the chances of fully recovering off of ventilation are low and shrink to slim the older someone gets. For us, living permanently with tubes is no way to live.
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There has been a lot of research about PEGs (see, for example, New England Journal of Medicine) that conclude they don't have a positive impact on morbidity/mortality. This is why we refused to have one put in for my sister, who could not eat due to seizures AND WHERE THE CONDITION WAS IRREVERSIBLE. PEGs work best for patients like accident victims who are expected to have a chance for recovery. Or a stroke patient who is expected to be able to eat normally once they have sufficient PT/OT.

Do you think that you should call hospice in? One of their strengths is managing pain and evaluating whether a patient has much chance of turning around.

I know how difficult and emotionally devastating this is to you...I've been "there" and no one should have to go through it...the person who is sick or their loved ones.
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Sum123: I am sorry that your mother suffered a stroke a such a young age. My late mother suffered an ischemic stroke at 94 years of age. My mother was placed on palliative care. Perhaps you should investigate this for YOUR dear mother. Prayers sent. It is especially difficult when your mother is non verbal; I know.
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Your mother is still quite young, so hopefully with lots of physical, occupational and speech therapy she should be able to regain some of what she has lost. Please make sure that all of therapies are in place as that will be the only way she will have a fighting chance.
And just because she has a feeding tube now, doesn't mean that it will be permanent.
My husband had a massive stroke when he was 48 years old, which left him unable to walk, talk, read, write and completely paralyzed on his right side. He also initially required a feeding tube as well.
After much therapy, he was able to walk again with the help of a brace, talk in short sentences and words, however never regained his ability to read or write other than his name. But the feeding tube was removed a week or so after it was placed in his stomach, so don't give up hope there.
Again please make sure that she has all the necessary therapies in place, and let her know that she's going to have to work very hard to be able to regain some of what she's lost. It's now going to be up to her whether or not she wants to fight to regain what's been lost. Hopefully she will have the willpower.
I wish you and your mother the very best.
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You may want to have her evaluated for Hospice palliative care, once her physicians have provided prognosis for recovery. At only 67, your mother is young for such a debilitating state. Not knowing the length or extent of her illness, she may be unable to rally back. A Hospice nurse will be able to tell you the level of pain she is in and advise you of options to insure your mother is comfortable.
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Talk to her doctor about arranging palliative care consult and a hospice care consult. Palliative care will address the pain and discomfort issues you mention. Hospice can deal with issues of end of life. Having experts in each of these areas advise you - and the rest of the family - should help with developing a plan of care for the life she now has.
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When did the stroke happen? I'm sorry your mother is having to go through this.
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I'm sorry you have to witness the debilitating state your mom is in. First addressing the physical pain and discomfort that she is experiencing would be beneficial. My mom had a tracheostomy and peg tube as well. Both are beneficial considering the trach helps with breathing and the peg helps with those who are unable to take in nutrition by mouth. My mom also had encephalopathy along with a host of other things, and I exercised her body and mind. If she couldn't lift her legs or arms, I would do it for her just to ensure the range of motion. Her brain was overactive at times and I found continuing the things she loved helped her recover speech and mobility. If your mom likes music then play her favorite songs.... if she likes the outdoors put her in a wheelchair if she's immobile, and take her out if possible, and if she loves movies and shows then keep the television on. Let her know life can still be lived despite her present circumstances. Most importantly fervently pray and be happy and full of life. Energy transfers and when you're positive, entertaining, and bringing a smile to her face, you'll be surprised what can happen as a result. I'm hoping her caregivers have the type of love and energy your mom needs to be around. God bless!!
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