When I worked at a hospital there was one patient that the parents . . .

[frankly_fedup2]

would not let go of. She had Downs Syndrome and was almost 40 years old. However, she could not breathe on her own. She could not eat or drink for herself anymore. I'm not sure if she had had a stroke or if this was just the continuing life of someone with Downs Syndrome. I have read they usually live into their 20's but not much passed that.

I would have to go past her room several times a day. I would look in every time I passed and she was just sitting in the bed. She had the ventilator taped up her nose and down her throat. She could not move as they had her hands tied down. All that would move was her eyes and they were always as big as saucers.

I remember doing several reports but everyone of them seemed to come from a different doctor caring for her. It seems the mother and father refused to believe that their child would die if allowed to. How she is suffering day after day after day. When the physician would tell the family that they strongly suggested that the family allow them to remove the respirator, the family would get angry with that physician and would tell the hospital administration that they wanted another physician for their daughter. The same process went on through about six of our local doctors. Finally, the last doctor, after the family refused to remove the tubes yet again, decided to transfer the woman to another hospital that he hoped would show them that there was no hope for their daughter.

I never found out what happened; however, I hoped they finally let her go. It was a sad site to see this person just lying in that bed day after day after day with no enjoyment of life whatsoever.

[knowbody0]

1. they did this to my mother

she died after 10 days.

[frankly_fedup2]

8. I'm sorry that she had to continue to suffer for 10 more days. That . . .

had to be very hard for all of you involved. Was it a feeding tube or a ventilator?

The reason I ask is because my ex-mother-in-law was dying of CHF (congestive heart failure) and was suffocating to death. Since I worked in the hospital, and her son was my first husband, every time she would rip her clothes off, they would call me. I knew she was doing this because she felt she could breathe better without them; however, I had to tell her and force her in a way to put her clothes back on.

It was horrible to visit with her. However, my ex-husband, his brothers, and his father had kept her on full-code status. Even after being told death was imminent and she was suffering. I could not grasp them doing this when they could see she was suffering.

It was about 10-14 days before she passed. I had remarried, however, I had a son from my first marriage and she was my son's grandmother. I told my son to come with me to the hospital one day to visit because she was dying and he should visit her or he would regret it. When he walked in that room, even with her suffering, that was the first time I saw her smile. Her grandson visiting her, even with all she was going through, gave her a moment of peace.

I had always let my son visit that side of his family. His father would take him to see his grandparents as well as I continued in a relationship with my ex-mother-in-law. She was a good, and very kind woman, and at times I have missed her. However, I know she is not suffering anymore.

[Selatius]

2. This story illustrates how gray this territory is

Sometimes the answer is not obvious, and any decision is probably going to result in a lot of self-doubt and pain.

[leanin_green]

4. I agree, there's no way to know what is at work in these cases.

[mondo joe]

9. There isn't one right answer. Just a personal answer.

That's why the personal choices should be paramount.

[cynatnite]

3. The parents of a 12 year old girl with brain tumor

removed life support because it had left her brain dead. After several weeks of life support and various doctors told them there was no hope, they decided it was the best for her. I heard one of the parents tell a nurse they love her too much to keep her in such a way.

I've never forgotten that. I remember going home and telling my husband to let me go if I should ever be in such a state. We made promises to each other.

[frankly_fedup2]

7. That is the only good that is coming out of this horrible invasion . . .

of this family's privacy, and that is people are going to ask their doctors about "Living Wills" as well as "Advanced Directives."

Those two documents as well as a Will (after death) with instructions is one of the greatest gifts a family member can leave their loved ones.

Hopefully, this will get people talking and taking action.

[dflprincess]

5. A little off topic but,

Down Syndrome people are often born with heart defects which is why they used to die at a fairly early age. Advancements in heart care allows them to live longer. My mom's aunt had Down Syndrome and lived into her early 60s before she died of heart failure. She was very high functioning and had always lived with one of her sisters who kept her at home right up until the end so she was able to die peacefully.

[frankly_fedup2]

6. I read that the majority did die before they could become old; however,

I had forgotten it was due to heart problems. I have met several people with Downs Syndrome who will stand and have a very good conversation with, (at the Special Olympics), except for the obvious physical appearance, it would have been hard to tell from the conversation that they had any mental impairment.

[LisaL]

10. Nowdays, they can even do plastic surgery on someone

with Down syndrome, to make them appear more normal.

[Blue Diadem]

11. Downs kids are being educated now and that has

helped tremendously in furthering their development. Years ago, parents were advised to put them in institutions. Some people still are afraid or feel awkward around them because they don't understand.

My sister had Downs and functioned at a young child stage. She never received formal education but was still able to work for a county industry.

I found a lot of ignorance and misinformation in the medical community. We had one Dr. say we should stop seeking treatment since she was born a vegetable and another said taking care of her was distasteful. We had an awful time getting her admitted when she became seriously ill. Some of the staff didn't realize they could speak to her and instruct her on things to do.

[dflprincess]

12. This sounds a lot like my mom's aunt

She was born in 1901 and my great-grandparents refused to follow the conventional advice to "put her away". She was the 11th of 12 children. My grandmother was about 5 years older than her and told me once how she and another sister treated her and their youngest sister that was born in 1902 practically like dolls (probably giving her the early stimulation Downs babies need). She never received any formal education, but was included when the other kids played school and did pick up some reading and writing from that. She was able to cook a little and help around the house and, when my mom and her siblings were little, she was able to babysit them. Thankfully, she always had a home with their eldest sister. She probably had the best life a Downs person could have at the time.