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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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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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.
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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