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Old 11-27-2003, 01:46 PM
Join Date: Dec 2001
Posts: 1,587
My Dad had a Massive Stroke - I need advice please...

My Dad had a Massive stroke a 8 days ago. The DR's say if there are no signs of improvement by now, there will not be any at all.

He can open his eyes and look at you, turn his head and his left arm and leg. He is breathing on his own but he cannot swallow or speak (at least the DR's say that but I cannot tell because he has the feeding tube down his throat).

The DR's say that if his family chooses to keep him alive this way, that they will insert a permanent feeding tube into his stomach and he will have to live in a convalescent home for as long as he lives. They said that even the best convalescent home doesn't give great care because all they are responsible for is keeping you clean.

In my heart I think he is "there," but no one really knows for sure. I've asked him questions and he has responded with long blinks like I asked for, but sometimes he doesn't do anything at all.

Our choice is to have the feeding tube inserted and he will go to a convalescent home, or they can take the feeding tube out, put him on heavy sedation drugs, and he will die peacefully.

I don't know what to do. I don't want to let him go if he is mentally there, but he cannot answer what his wishes are. I don't want to live the rest of my life wondering, what if we gave him one more week?

I know in my heart he would not want to live this way, but now that he is in this situation, what if he does?

I would appreciate anyone's advice and prayers.

Thank you.
Old 11-27-2003, 01:55 PM
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Join Date: Apr 2000
Location: Slithering on the hull
Posts: 25,797
My condolences. It is a hard thing you are faced with.

Did your father have a living will, or express his feelings at all about what to do in this sort of situation? If so, please honor his wishes. If not, then I suppose the remaining family members need to decide what is right. That's a very personal decision and I hope your family can come together and decide what they feel is right for your father.

Best wishes,
Old 11-27-2003, 02:11 PM
Join Date: Sep 2001
Location: Alabama, USA
Posts: 4,317
Tough one there. My sister and I had to stand in a hospital parking lot and decide about our mom. We both knew she'd not want to continue like they said she'd be.

We told them to pull the plug, and they did. FWIW, I've never second guessed or regretted that decision, but at the time it was very hard to do.

Peace to you at this time.
Old 11-27-2003, 02:19 PM
Join Date: Jul 2002
Location: Lost in time
Posts: 752
I can't offer advice, but I send you all my best wishes. Trust yourself.
Old 11-27-2003, 02:26 PM
Join Date: Mar 2000
Posts: 8,820
I am so sorry.
My father is almost 89, and this makes me think I'd better appreciate him now.

Living wills are so important. I dont even think my father has one.

(am praying)
Old 11-27-2003, 02:30 PM
Join Date: Dec 2002
Location: Rocky Mountains
Posts: 4,958
Been there. Qadgop is quite right.

Same thing happened to my grandfather. He lived for nine years, about, after the feeding tube was inserted. He about died in a nursing home, so my grandmother took him home and converted a bedroom into, basically, a hospital room. Had someone to sit up with him at night, a registered nurse on call, and so on.

In time, she came to realize that there wasn't much of anything left of him... but she could not bring herself to "kill" her husband by going through the legalities and nonsense involved in having the feeding tube removed.

Assuming he left no "living will," or other documents stating his wishes under such circumstances, do what you need to do, and take the time you need to consider what to do. All of you, your whole family. This isn't something you'll all agree on, most likely, and reaching consensus will likely take a while.

There's no hurry. Do what you gotta.
Old 11-27-2003, 02:44 PM
Join Date: Dec 2001
Posts: 1,587
Thank you.

He did not have a living will. My step-mother said they only talked about it once and that he said he would not want to be kept alive by machines. I believe he would of said that.

On Tuesday we are meeting with all of his DR's and they are going to spell it out for us. Then we will have to make the decision.

I think my biggest fear is that they want to put in the feeding tube so they can transfer him out of ICU. But they won't do that if we decide to let him go because it's surgery and trauma to his body. So basically they want us to make the choice as soon as possible. I just don't know if 2 weeks is enough time to show any signs of recovery or not.

vanilla, it's true. You just never know when the last time you get to talk to your loved one will be. Take that time now to tell him you love him. Thank you for your prayers.
Old 11-27-2003, 03:27 PM
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Join Date: Sep 1999
Location: far away from the SDMB
Posts: 6,610
Here's wishing all possible comfort and strength to you, dreamer. You, your dad and family are confronted with one of the hardest situations around.
A formal living will would have made things as neat and tidy as they could be under the circumstances. (Though even with a living will the doubts and emotions wouldn't have been much easier.) Lacking one, my guess is your best guidance your knowledge of your father and his spoken opinion.
It's hellishly hard; I went through very similar situations with both of my parents at the end of their lives. Resuscitate again, prolong life how long through what measures to what kind of "life", not knowing how aware they were and nowhere remotely enough time to sort out the impossible.
In the end my sister and I went with our instincts and knowledge of our parents. We chose not to resuscitate again and no heroic measures to prolong physical life. Part of our decision was there was no hope--none--that they could ever get better. The best medicine could do was possibly maintain their dire, fragile status quo for a while, prolonging their inevitable downward spiral into death. We chose to let them go.
I'm so sorry, dreamer. It's hellishly painful but maybe it'll help to remember that the decison isn't between life and death. Death is inescapable for everybody. It's more a question of whether it's time to let your Dad's life end, based on his life would be like otherwise.
I'm not arguing to let your father go. His and your situation may be completely different; medically, emotionally and spiritually. The only thing that counts is what feels right for him, you and your family. No matter what, best wishes to all of you. I'm keeping you in my thoughts.

Old 11-27-2003, 03:36 PM
Join Date: Feb 2001
Location: Seattle
Posts: 2,270
Dreamer, you and your family have my prayers too. What a shitty world this is, sometimes. Hang in there.
Old 11-27-2003, 03:38 PM
Join Date: Sep 2003
Location: usa
Posts: 4,799
I am sorry that you are facing this terrible situation.
I would suggest doing some of your own research on stroke recovery, to make sure that you agree with the doctors' view on his prognosis. They may indeed be right, but I know from personal experience that doctors sometimes underestimate what a patient is capable of.
Years ago, my dad had a pretty major stroke (not quite as severe as your dad's, but still very disabling). He slowly improved over months, not just weeks. Initially the doctors told us that he would never be able to walk again. When he first started moving his leg again in the hospital, the docs said that it was just a "reflex". However, in the long run, my dad did start controlling that leg again and could walk with a cane. He was never 100% back to normal, but he did better than the doctors had expected.
I don't know if your dad's situation is anything like my dad's was, but from that situation (among several others), I learned that doctors are not infallible. Try to educate yourself from a few other medical sources before making such a major decision.
You and your dad will be in my thoughts and prayers. I hope that you make a decision you feel at peace with.
Old 11-27-2003, 04:12 PM
Join Date: Nov 2001
Posts: 8,223
I'm so sorry about your dad. What I'm about to write may sound somewhat harsh, and I don't mean it that way. This is just a harsh sort of situation, and there's no way to really soften this kind of discussion.

Has your dad made any improvement at all? If not, odds are pretty good the doctors are right. It's not a sure thing, of course; there's no such critter in medicine. Sometimes people recover against all odds, and sometimes people die against all odds. And, of course, doctors are just people, and all people are flat-out wrong from time to time. Still, if a stroke patient hasn't made any recovery at all in over a week, the odds aren't good for him to ever make any recovery.

This is a horrible decision to have to make. You say he wouldn't have wanted to live this way, but you're afraid he might have changed his mind. You also mention him responding to questions sometimes with blinks. Maybe you should ask him if he wants you to put the permanent tube in, with one long blink for yes, and two long blinks for no. If he answers, you know what to do. If he doesn't answer, I think then you'll probably still know what to do.

Unfortunately, what you want and how you feel about letting him go can't enter into this decision. It's not your life, or your death, so your feelings aren't really a consideration. It's all about him and what he wants, or (if he can't communicate what he currently wants) what he would have wanted.
Old 11-27-2003, 04:17 PM
Join Date: Dec 2001
Posts: 1,587
I've searched around the web but haven't come up with very much. I did find this other
Health Message Board, but for some odd reason it won't let me register.

My Dad is an amputee so he only has his one left leg, which he has moved a little here and there. He also has diabetes (which is why he lost his leg) and phenomena. If he could use his leg again there would be no way for him to walk because his right side is paralyzed, or it seems to be now.

This is the worst thing I've ever thought I would have to do. I wish God would take him peacefully so we wouldn't have to make this decision.

Thank you so much for your advice and prayers and if you know of any sites with stroke information, please let me know.
Old 11-27-2003, 04:23 PM
Join Date: Dec 2001
Posts: 1,587
Originally posted by CrazyCatLady

Has your dad made any improvement at all?
Well, when he first came into the hospital he could not open his eyes or turn his head. Now his eyes are fully open for long periods of time, he looks around, moves his head around, and responds to pain. Yesterday he grabbed the side of the railing with a lot of strength in his left arm, which I had not seen him do before.

You also mention him responding to questions sometimes with blinks. Maybe you should ask him if he wants you to put the permanent tube in, with one long blink for yes, and two long blinks for no. If he answers, you know what to do. If he doesn't answer, I think then you'll probably still know what to do.
I've tried that. He gave me the long blink when I asked him if he knew he had a stroke. He gave me the long blink when I asked him if he wanted us to take the tubes out of his throat. But when I asked him if he wanted us to let him go, I didn't get a response. I will try again though. It's hard because he fades in and out of sleep. The DR's say that's because he does not get enough REM sleep with the nurses and commotion 24/7.
Old 11-27-2003, 05:01 PM
Join Date: Jul 2002
Location: West Missouristan
Posts: 211
Oh, Dreamer...I am sorry you have to deal with this...

I am a critical care RN w/ 20-plus years experience. (Mrs. Eggerhaus is also an RN, with several years of rehab experience.) Back when I was a baby nurse we were taught that long-term CVA (stroke) prognosis needs to be looked at six-months post event. As far as I know, that hasn't changed. If dad is moving and responding to commands he should be getting physical therapy of some kind. If he's not, insist that he get a PT consult and a consult from a rehab doctor! The feeding tube in his belly will be needed so he can 'eat' without aspirating (food going down the wrong pipe) if he cannot swallow properly. Make sure he's had a swallow study to verify that he is an aspirator.

My strongest advice would be to watch dad for six months. What he has then will probably be all he'll ever get back. When he gets out of ICU he should go to a rehab unit...if he has rehab that's why you need that PT consult and visit from a rehab doc.

Hope this helps. Have a blessed Thanksgiving.
Old 11-27-2003, 06:04 PM
Join Date: Mar 2003
Location: Calgary Alberta (Canada)
Posts: 992
Dreamer, my thoughts and prayers are with you.

My Dad had a series of severe strokes during an operation that was intended to prevent such strokes.

Initially, he was partially paralized on his right side, could not walk, nor feed himself, nor speak intelligibly <spelling?>. It was a miracle he survived at all, as he had also arrested on the table.

Yet with good therapy, he was able to learn to walk again, feed himself, talk, although not necessarily converse, and be relatively independant. He had 9 pretty good years after that.

The neurologists explained to us that the therapy could get him to use parts of his brain that were previouly unused to learn to do these things again, and to replace to a certain extent the parts that were damaged by the stroke. The progress was very slow at first, but accelerated as we went along. Most of the progress took place 3 months after the event and onward.

If you do decide not to withold feeding, may I suggest that in addition to all the therapy, that you make sure your Dad gets lots of mental / verbal stimulation, i.e. lots of people talking to him as though he's there, touching his hands and face, and encouraging him to fight on, and to get better. Even a TV or radio tuned to a favourite channel can provide lots of stimulation when you're not there.

Perhaps you can try the blink once for yes, twice for no, means of communicating, but you have probbly tried that already.

Speaking from experience (albeit Canadian experience) if he does go to a long term facility, your family will have to visit him often, and make sure that he gets the care and stimulation he needs. I'm afraid that the patients who don't get a lot of attention from their family often don't get a lot of attention from the staff either. Don't alienate the staff, as they could retaliate against your Dad. Bring them little presents and learn their names. Offer to help them care for your Dad by doing small things like small grooming tasks, etc.

Also, allow me to offer you some advice about taking care of yourself, regardless of what you decide. When one is distraught over a loved one's health crisis, it's often the case that doing things for yourself can lead to feeling guilty, or to feeling like you are somehow betraying your Dad, and that you have a duty to fell bad all the time. Please believe me that it's OK for you to take some time for yourself, to rest, to eat if you can (whatever you like, forget calories for the next month) and even to spend some time with your friends. It's OK, if you can, to laugh at a funny story of a buddy/GF's date gone wrong, or a funny movie, and forget about your troubles for a while. You are recharging your emotional batteries to be better able to care for your Dad, or for your family.

It's also OK for you to cry, to feel it isn't fair, to be angry, and to want to break things. Pillows and matresses make great punching bags. Make sure you have some friends or loved ones with whom it's OK to cry, or to rant. Please don't try to "be strong" in front of everybody.

Finally, if you are so inclined, you can pray for guidance, for strength, for peace for you and yours.

{{Big warm botherly hug}}
Old 11-28-2003, 12:52 AM
Join Date: Sep 2001
Location: Chicago 'Burbs
Posts: 5,457
I have no advice, but offer my best wishes for you and your family through this difficult time. Whatever decisions you make, you will make out of love - just be sure you are getting good medical information. It's not even remotely a waste of time to get second, third, even fifth and sixth opinions.
Old 11-28-2003, 02:00 AM
Join Date: Dec 2002
Location: Voting anti-obamanation
Posts: 10,300
Best wishes for strength and wisdom, Dreamer.

Should you wish to learn the account of one who suffered a stroke, read 'My Year Off' by Robert McCrum.

No decision will be easy, yet I'd offer that understanding will afford reassurance in the weeks and months to come. Be well.
Crows. Keeping our highways clear of roadkill for over 80 years
Old 11-29-2003, 08:58 PM
Join Date: May 1999
Location: Somewhere in the Middle.
Posts: 21,387
dreamer I am so sorry to hear this awful news.

Can your Dad communicate through blinking at all. Once for yes. Two for No.

Have to gotten a second opinion?

There's no hurry. Do what you gotta.
Well said. This situation, regretfully, does not go away over night or with the wave of a magic wand. Exhaust your resources and see what happens with your father and his condition. Waiting a couple of days-weeks-months ( which blur together after awhile in a fog that never seems to lift.) will only help you ( I would think) make a more informed judgement call that no one should ever be put in that position to make.

I am truly sorry for what you are enduring.
Old 11-30-2003, 12:52 AM
Join Date: Nov 2000
Location: Chicago
Posts: 166
I'm really sorry to hear about this. I know how hard this can be as I have been through a similar situation.

My Mom has had 2 strokes over the past couple years. From what you've described it sounds like she showed improvement quicker however. She started out paralized on her right side, unable to eat & could only say a couple words.

From what her doctors said, most of the improvement would be in the first 3 months, which was about right.

She walks & eats fine now, but she's still unable to use the right words to say what she wants to most of the time (which is called aphasia).

She started out at one hospital & was then transferred to a better hospital that offered speech, physical & occupational therapy. Unless your Dad is in a top notch hospital, I would seek at least a second opinion from a good neurologist or someone who specializes in strokes.

I would also suggest reading Trupa's post a second time. My family was emotionally drained by these events & it made my Mom's recovery that much harder.

I truly hope he becomes well enough to recieve good therapy. If a second or third opinion does not give hope for this, then take your time & try to determine if your Dad would want to go on this way.

Best of luck & God bless.
Old 11-30-2003, 09:39 AM
Join Date: Aug 2000
Location: Middle TN
Posts: 4,394
No advice, unfortunately, except to echo all the folks who said to listen to your heart. I am so sorry you and your family are in this situation. You mentioned a stepmother--are there other family members as well? What do they think?

All the best to you as you live through this very hard time.
Old 11-30-2003, 11:33 AM
Join Date: Dec 2001
Posts: 1,587
Thank you all again for your thoughts and prayers.

Brynda yes, there is also his Sister and my Brother as well. No one knows the exact answer. We see him day after day just lying there with no signs of improvement. One day he is fully awake and looking around and then the next it seems like he is suffering and having a difficult time breathing.

I know he hates this.

We are meeting with 3 of his DR's on Tuesday morning so that's 3 different opinions. I am hoping they go over everything with us, including tests, x-rays, etc.

Shirley Ujest, I've tried so many times to communicate like that and sometimes he answers and sometimes he gives me a blank stare. In my heart I think he's there, but I don't know if I will ever be 100% sure.

I know my Dad was not happy with his life before this happened. I've been hearing many stories about the few weeks before this. My stepmother said he fell a few weeks ago and hit his head. His motor skills were affected because he told her he could not dial the phone or when he reached for a glass he completely missed it with his hand. I have some resentment towards my stepmother for not dragging him to the DR right then, but she says he did not want to go. Then I heard from my brother that last time he went to visit him, he offered him his diabetes medication and said he did not want to take it anymore (My brother is a diabetic and they take the same meds). They both said that he looked like he hadn't showered in a while and just seemed very depressed. I knew he had been unhappy in his living situation and I tried to help him, but I think he gave up.

The day that he had the stroke my stepmother found him at 9am lying on the ground. He used to always get up during the night and go outside to smoke (he was a heavy smoker all his life). No one knows how long he laid there and the DR's say that if you don't bring a stroke patient in for care within 3 hours, then the chances for recovery drop significantly.

So that's where we are. I'm still praying for a miracle or for peace in the decision that has to be made.
Old 11-30-2003, 02:46 PM
Join Date: Dec 1999
Location: Virginia
Posts: 560
dreamer, I'm sorry for what you are going through. I do know first hand though. My Mom is in a nursing home right now, with that feeding tube in her stomach. March will be five years. Some days I know I made the right decision, other days I wonder. When this first happen she was in a coma for two weeks. They told us she would never come out of it. We decided to have the machines turned off. She started breathing and came out of the coma. They were giving us all of these options and things were so confusing. I had a nurse take me aside and told me all they were doing was getting her ready for a nursing home. With a feeding tube she could live for years. What kind of quality of life was that?? I had other family members and a very heartbroken dad. They all wanted everything done to save her, to keep her alive. I guess in my heart I did too. Being that I am the only daughter it all fell on me. Dad was in his 80's at the time. Mom had some good days at first. Then we had some bad. It went back and forth for months. Now it's bad again. There never has been happy times. I have an 87 year old dad that don't understand why he can't give her something to drink or eat. He will even sneak things in to her. I have been through hell. Dad is with her every morning. I sit at night. Trust me!! it's hell. Many nights I leave crying. I think I'm there now more for him than her. I'm getting to where I don't even feel like it's my mom anymore. I think maybe that's how I deal with it. Somedays I think she knows me. Others I'm not sure. I don't know what to think anymore. I have two very frail people on my hands. Oh, the other family..... no one else wants to deal with it. In my heart what choice do I have? it's Mom and Dad.... I'm only 48, during this I lost my greatest friend. My husband had a massive heart attack. I don't know what is harder. Losing someone fast, with no good-byes. Or watching that someone die slowly everyday. God bless you my friend on that path before you...
Old 11-30-2003, 03:50 PM
Join Date: Mar 2002
Location: Central NC
Posts: 4,656
dreamer, you have my sympathy and my best wishes. I can honestly say that I know what you're going through.

At the end of August, just after our twentieth wedding anniversary, my wife started having spells of disorientation. She started spending more and more time in bed, and became more and more lethargic. Blood tests showed excess calcium in her system, which the doctor said could be causing the lethargy. She was admitted to the hospital and after a week of tests and treatment was sent back home. Her condition continued to deteriorate; she stopped eating, taking her medicine, or doing her exercises (she is diabetic and was diagnosed with Parkinson's over a year ago).

When she started coughing and vomiting she was readmitted to the hospital. It was found that she had excess fluid buildup in her brain, and that she was not swallowing properly (food was as likely to go into her lungs as into her stomach); a feeding tube was installed so she could be hydrated and fed. After her blood chemistry and physical condition were stabilised and there was no mental improvement, a shunt was installed to drain the excess fluid. There was no discernable change, even after they tried giving her drugs to stimulate brain activity; she would open her eyes and look in my direction if I said her name, and squeeze my hand, but that was it. Since there was nothing else they could do, she had to be discharged from the hospital.

As I type this she is laying in a hospital bed in our living room. The hospice people have provided me with everything I need to take care of her. Three times a day she is given medicine and food through a tube. Since she came home she has become more responsive. She answers when I ask her questions (although sometimes her answers don't make sense) and every so often she speaks or laughs, sometimes in response to something on the TV and sometimes just out of the blue. Unfortunately, she still has spells when she is obviously disoriented; she will suddenly say something like "Where are they?" or "Why are you doing this?" or nonsensical phrases.

The diagnosis seems to be Parkinson's based dementia, and I have been told there is no reversal now that she's reached this stage. She will continue to have good days and bad days, but eventually the bad days will outnumber the good. I have been given information on living wills, DNR orders, etc. I have also been assured that if it is decided to "withhold nourishment" there will be no pain.

Years ago we had discussed our feelings on the subject of either of us being kept alive when there was no sign of mental activity or no hope of recovery. If she were totally unresponsive I would have no qualms about letting her go, as I know that is what she would want. But while she is still occasionally capable of smiling at me and saying "I love you" I keep telling myself that there's still hope.
Old 11-30-2003, 04:57 PM
Join Date: Jun 1999
Location: City of Angels
Posts: 14,849
Dreamer, you have my empathy, because I faced an almost identical situation 5 years ago with my older sister.

She had a stroke in the summer of 97 that left her severely impaired but not demented. The details don't matter, because 6 months later she had another stroke. The second one left her in a condition not that much different than your father's. She was obviously quite aware of us, she was able to weep and to make sounds, nod or shake her head to questions, clutch our hands, accept a kiss, reach for a hug. She could not swallow, however, and that meant she could not eat or drink, and a feeding tube would be required to keep her alive.

We were fortunate in that she had left behind an extremely detailed and specific medical directive that she had filled out two years earlier, and pretty much every answer was "let me die". She also struggled and fought when they attempted to give her a tube, and was also able to grunt and shake her head when asked directly if she wanted it. When asked if she understood the consequences of her refusal, she nodded.

So we took her home, the hospice people came, they provided us with morphine patches for her, and we held vigil while she slowly died. It actually didn't take very long, about 36 hours, most of which was spent in a coma.

I am eternally grateful I was able to be with her as she left this earth, and that she was able to go when she wanted to.

All this to say...I wish you the best. And I advise you to do everything you can to determine your father's wishes. And don't hesitate to be completely direct and honest with him out of your own squeamishness. You wont' be doing him any favors.

good luck.
Old 11-30-2003, 06:10 PM
Charter Member
Join Date: Jan 2000
Location: Oregon
Posts: 1,609
Lots of good repiles and great advice here, but I'd like to add one thought -

Every case is unique.

Somebody else's experience may parallel yours at first and then diverge widely. Slight differences in original conditions may make huge differences in outcomes.

My own father had a massive stroke (I saw the CAT scan, and it looked as if a third of his brain were affected) that left him unable to speak and right-side paralyzed. Eventually he was able to walk short distances with a cane, but never regained any use in his right arm. (He had some shoulder movement, but that's all).

His improvement could be graphed as a very slow, flat curve. He probably peaked in recovery somewhere around two years later. He was able to feed himself with his left hand, walk short distances with a cane, and say a few words (most of them profane, a common occurance with regained speech, I was told. You can get a lot of meaning in a good expletive with the proper inflection). He could clearly understand what was going on and answer yes/no questions correctly, laugh at the right places in a TV program, etc. And while he understood words, could not articulate them. But he could draw pictures of what he was talking about. Not very detailed drawings - they were with his left hand, and he had been right-handed - but good enough for someone, particulrly mom who was familiar with everything, to guess the meaning, with a fair degree of accuracy. He would nod vigorously when your guess was right.

After the two years of improvements, he had a series of smaller strokes and declined. Seven years later he lost the ability to swallow and a PEG tube was inserted. He lived two years beyond that, getting nourishment from the feeding tube.

Aside from early training at a top-notch stroke rehabilitation center, he lived at home, and my mom took care of him. She had the help of visiting physical therapy nurses, and a home health care nurse who could give injections, monitor vitals, etc.

Ultimately, he died at home, the place he had lived in for over forty years and remodeled extensively.

We never had the need to resort to any kind of heroic measures or life-support decisions, and it was fairly easy to see that his quality of life was such that he was willing to stick around, and thoroughly enjoyed attending graduations and weddings of his grandchildren.

I would re-emphasize Eggerhaus' emphasis on a PT evaluation and waiting six months. Give him a chance, if possible. Stroke recovery in our case was S-L-O-W and in very small increments. We are glad to have had his company, however limited, for 9 years after his stroke.

(I am struck that this is the third time the 9 year figure has come up in this thread. While not a statistically significant figure, it's intriguing nonetheless.)
Old 11-30-2003, 06:48 PM
Join Date: Dec 2001
Posts: 1,587
Thank you for sharing your experiences. I'm so very sorry for anyone who has had to go through anything like this.

Stoid, if I may ask, how does hospice work? Right now my Dad is covered by Kaiser and they said once he is released from the hospital, if we decide to give him the feeding tube, they will not pay for anything else. If we do decide to let him go, they said they will pay for custodial/nursing home care until he is gone.

What do you do if you don't have the money to pay for a nursing home? My Dad is a veteran but I don't know if they help either?

Any suggestions?
Old 11-30-2003, 07:40 PM
Join Date: Jun 1999
Location: City of Angels
Posts: 14,849
I don't know much about payment except this: my sister was not insured and she was on permanent disability. The hospice care we received was excellent, in home care. They provided a hospital bed, and nurses came 3 times a day i think to check her progress. (at one point a few hours before she died her blood pressure was down to something over zero! i didn't know that was possible...) If I recall correctly they even helped us bathe her.

She was in Las Vegas at the time, I'm sure things are different everywhere. If you decide to let him go, it won't take long and it isn't very costly, I'm sure.

Really, best of luck.
Old 11-30-2003, 08:17 PM
Join Date: Mar 2002
Location: Central NC
Posts: 4,656
Our health insurance is Blue Cross; they do not cover nursing home stays but they do cover hospice care. In fact, I just received a letter from them verifying that the outpatient hospice care we are receiving has been deemed Medically Necessary (although "this does not constitute a guarantee of benefits"). After my wife's first hospitalization we were advised to consider a nursing home, but since our insurance didn't cover it the only way to do so would have been to get her qualified for state Public Assistance. I was looking into this when she went back to the hospital and found that it is possible that she could have qualified even though I am working. The Veterans Administration has a webside,, which has info on health care benefits available to veterans.

In our case the hospice arranged for delivery of a hospital bed and all needed supplies, sent a nurse to the house on the day my wife was discharged to instruct me on her needed care and answer any questions. They also have a nurse visit weekly to monitor her condition and arrange for any further supplies or medication. They also have counselling and social services staff available if needed.
Old 11-30-2003, 09:15 PM
Join Date: Aug 2000
Location: Middle TN
Posts: 4,394
[brief hijack]Lurkmeister, you have both my sympathy and respect. It is clear you love your wife; I cannot imagine how hard these last few months have been. [/hijack]
Old 12-01-2003, 02:18 PM
Charter Member
Join Date: Apr 1999
Posts: 22,407
Dreamer, you have my deepest sympathies. My family had a similar tragedy, so I know what you are going through.

First, be aware of assistance you can get before making any decisions. Most large hospitals have social workers on staff who can help you sort through your insurance coverage, whether your father can qualiy for Medicaid or veteran's benefits and all the other paperwork you'll need to go through.

Secondly, you and your family must determine what to do. The doctors have their opinions, but they should not try to talk you into one course of action or another. What you should ask of them is their reasonable judgment about what can happen in similar situations.

When my father suffered a massive stroke, my sisters and I had a conference with all the doctors associated with his case (the social worker pulled together that meeting for us.) We then spnet the rest of the day trying to pull all the opinions together and ended up writing a 7-page set of instructions about what we did and did not want for my father's care. It was very tough on us, and required us to consider every contingency, even though we agreed that my father would not want "to be kept on a machine."

There are many possible choices for you to make, ranging from the most aggressive treatments medical technology has, through simple "do not resuscitate" requests, to allowing infections or pneumonia to take their course, to withdrawing nutrition.

As you have already learned, it's not as easy as following your head, or heart. For every compelling reason you can find to make a decision, there are equally compelling reasons for making a different decision.

I do not claim to recommend a course of action for you, but I can assure you, by considering all the possibilities, you'll be able to sleep better at night with your decision. My sister was at my father's bedside when his heart stopped. She was in the position of having to make the final decision, but it was easier for her because we had thought about what might happen, and had planned for it. Simply knowing that her conscience was clear made the whole process worth it for us.
Old 12-01-2003, 03:16 PM
Charter Member
Join Date: Nov 2001
Location: Milwaukee
Posts: 2,720
My heart goes out to you dreamer, and to the many others who have posted here to share their sad stories.

There is a lot of good advice here. For you, perhaps the most important is the comment that every case is unique. For the reader, the most important is to have a living will drawn up for your parents (and if your children are 18 and are unmarried, have a living will drawn up for each of them too).

I've gone through similar experiences with my parents.

My father had a pretty bad stroke about 6 years ago. Not as massive as your father however. He made little to no recovery in the first month, then gradual improvement over the next 3-4 months. To this day he is not completely recovered. He is still aphasic to some degree. He struggles to find the right words. Sometimes he finds them, sometimes not. For a man who was quite gregarious his entire life, this has been as difficult psychologically as physically.

After his stroke, my two brothers and I decided this was a warning shot across the bow regarding a Will and Power of Attorney documents. So we got everything all wrapped up neat and tidy, with detailed instructions about heroic life sustaining measures.

My mother got very ill about a year ago, and died about three months later. Her last months were spent in a hospital, and when they could not come up with any more reasons to keep her there, we were extremely fortunate to find an excellent hospice. She spent her last three weeks in the most wonderful care one could hope for.

Our anguish for her was eased by the clear instructions we had collectively agreed upon when she was lucid. It was particularly helpful to my father, who at first resisted the notion of withholding a feeding tube ("I can't do that. It'd be like killing her."), but came around when we again explained "Dad, look right here; she clearly indicated she didn't want to be kept alive that way." He then reluctantly agreed.

I'm convinced if we hadn't had that living will, my dad would've forced the feeding tube.

Given that you don't have the living will, it is important for the whole family to agree about future medical care decisions. You have my sympathy. It is a heart wrenching situation.
Old 12-01-2003, 03:43 PM
Join Date: Sep 2001
Location: Happyland
Posts: 12,606
My thoughts are with you and your family Dreamer.
Old 12-01-2003, 09:41 PM
Join Date: Mar 2001
Posts: 1,631
Sending out more thoughts and prayers for you dreamer and LurkMeister, wishing I had more to offer...
Old 12-01-2003, 10:10 PM
Charter Member
Join Date: Jan 2000
Location: Oregon
Posts: 1,609
Some experience with hospice here. Both for my father and my wife.

With the caution that it may work differently in your state or location, here's how it worked for us.
1. Insurance paid hospice 100% with no deductible and not a quibble. It is far, far, far cheaper for them to do this than to spend potentially tens or even hundereds of thousands of dollars on extreme life-prolonging therapies.
2. Hospice provided a hospital bed for use in our home, all necessary supplies, equipment and instructions. Visits by ministers or counselors were also offered for free as options.
3. The people involved were absolute saints - with warm personalities, lots of experience, and they stopped by every day, or more often if needed
4. Generally, hospice will not get involved unless a doctor has said officially that in the doctor's best medical opinion, the patient has less than six months to live.
5. All of this took place in two small Oregon towns - one of 12,000 population and one of 4,000 population. Neither had its own facility, so all the care was at home, but that's what we would have chosen anyway.

Also, they were able to arrainge for respite care, so that none of us would suffer caretaker's burnout.

I can't say enough good about hospice where we are. Again, that may differe by location.

Good luck, and God bless.
Old 12-01-2003, 10:45 PM
Join Date: Aug 2000
Location: In the mountains
Posts: 7,939
My great-grandmother was on outpatient hospice for the last few months of her life, and was on an inpatient unit for the two days prior to her death. (Last Tuesday. She was only sick for a few days. *sniffle*) She was 102! She'd had a living will for years and had made it VERY clear to us what she wanted. None of us ever argued with Grandmother. Even now I'd hesitate to, in case she came back to haunt me!

Hospice can be a wonderful thing. From all reports, they were simply wonderful to her for those last couple of days. Grandmother got what she wanted; a peaceful death. And a pretty quick one as well, though they had no control over THAT.

Among all the options in this situation, I would DEFINITELY consider hospice.

My thoughts are with you and your family...
Old 12-01-2003, 10:54 PM
Join Date: May 1999
Location: Somewhere in the Middle.
Posts: 21,387
lurkmeister words fail for what you are going through.

Hospice nurses are possibly the only proof of living angels I've ever witnessed.
Old 12-02-2003, 08:47 AM
Charter Member
Join Date: Nov 2001
Location: Milwaukee
Posts: 2,720
I'm just going to briefly pop back in there to reinforce what Hometownboy said about hospice care. Medicare took care of every penny. And with the hospice we were blessed to use, they also had a selection criteria of a six month life expectency. We were able to get my mother into the incredible facility itself, so my father wouldn't be burdened with in-home care at all.

And Shirley Ujest, you said it best regarding hospice nurses. Angels they are. My eyes are welling up with tears as I reflect back.

dreamer, again, I hope the best for your father. But if the worst case scenerio occurs, I highly recommend hospice care. Either in a facility or in-home.
Old 12-02-2003, 09:39 PM
Join Date: Dec 2001
Posts: 1,587
Today my family and I met with the DR's for my Dad. The best they could predict for him would be a life not much better than the one he has now. His Neuro DR said the stroke was so large that he will never be able to speak, and although he has a chance for a little improvement over time, there really won't be much life quality. We had a long talk with his case manager and his other DR's and they all said that the decision to let him go was one they would agree with.

They took the feeding tube out and his respiratory tube out and stopped his insulin. When I first saw him without the tubes in his mouth it was heartbreaking. He looked up at me and I could see terror in his eyes. I immediatley told him not to be afraid and then prayed over him with my family. I prayed that God would show himself to him or let him "see" something that would give him comfort and peace and not be afraid. A few minutes later my Dad looked up at the ceiling and smiled. I talked to him a little while after that and he smiled a few more times. It made me feel better to see that until I realized that it might be the morphine that was causing him to smile. I don't know though, I think for me I'm going to believe it was something else.

They said they will not be giving him any more morphine or pain medication unless he is in distress and needs it. The DR said he could live for 3 weeks like this. He also said he could go into diabetic shock or his kidneys could fail. All I can do is pray that God takes him soon so he nor his family has to suffer and watch him deteriorate.

They are moving him to a convalescent home tomorrow and his insurance will pay for his remaining care.

I am not 100% sure this is the right decision and I hope I can live the rest of my life without regrets. I know beyond a doubt that he would not want to live like this, but he never told me so in his own words.

I don't want to see him suffer. I don't want to watch him die. But I will go sit with him as much as I can because I can't bear to think of him going through this alone.

Thank you to everyone who posted here. Your stories, thoughts, and prayers mean so very much to me and my family. I printed the whole thread out so they could read it. They were impressed with the SDMB and the caring people here, and I am grateful too.

God Bless you all and thank you.
Old 12-02-2003, 10:34 PM
Eve Eve is offline
Join Date: Dec 1999
Posts: 22,064
You did the right thing--certainly what I'd want, and what I'd do for my Mom--but get a second opinion on the "no pain medication" thing . . .
Old 12-02-2003, 11:18 PM
Join Date: Aug 2000
Location: In the mountains
Posts: 7,939
I am so sorry, dreamer. That's about the toughest decision to make that there is, but I'm glad your family was able to pull together and make it.

I hope your dad's death is quick and peaceful.
Old 12-03-2003, 12:27 AM
Join Date: Sep 2003
Location: usa
Posts: 4,799
I'm very sorry too. This is a heart-breaking situation even if this decision is for the best. I will continue to keep you and your family in my thoughts and prayers.
But I have to second what Eve said about pain medication. What harm would it do to keep giving morphine?
Old 12-03-2003, 12:37 AM
Join Date: Dec 2001
Posts: 1,587
They said it was a legal thing. They are not allowed to administer morphine to a person who does not need it or is not in pain. I can't imagine starving to death NOT painful, so I hope they do give it to him soon. The hardest part is seeing him awake and looking around and knowing what is happening to him. I really don't even know whether or not he even knows what's happening himself.

Thanks again for your prayers.
Old 12-03-2003, 08:41 AM
Charter Member
Join Date: Nov 2001
Location: Milwaukee
Posts: 2,720
Thank you for sharing the story of this decision. My heart goes out to you and your family. Through personal experience, I truly know how difficult this is.

If it gives you some peace, I recall the hospice nurses saying that there really is very little pain with "starving to death". (I don't particularly like that phrase, but I am stumped about supplying a better one.) In addition, I found that in my mom's case at least, the doctors and nurses, both in the hospital and in the hospice, were quite lenient with the rules about administering morphine. They never hesitated if there was the least bit concern about discomfort. As I understand it, this is quite a change of attitude from as recently as a few years ago.

Maybe Qadgop could give you a more informed perspective.
Old 12-03-2003, 09:02 AM
Join Date: Dec 1999
Location: Virginia
Posts: 560
dreamer... I'm sitting here with tears reading this, this morning. I applaud you and your family. I know it was so hard to come to this decision. At night while sitting with mom I sometimes wish we had taken that path. It hurts so bad seeing her like this. I can't imagine what it's like for her. God bless you and your family...
Old 12-03-2003, 10:47 AM
Join Date: Dec 2001
Posts: 1,587
(((( Girlbysea )))) You are in my prayers.

Algernon thank you, I will definitely be asking about that when they transfer him and I hope what you say is true with his new nurses.
Old 12-03-2003, 07:19 PM
Join Date: Jun 2000
Location: on the porch
Posts: 7,862
over and over in church services there is a prayer for: "a painless, blameless, and peaceful ending to our lives."

the very difficult decision that you and your family made will provide that. i will keep y'all in my prayers.
Old 12-03-2003, 08:47 PM
Charter Member
Charter Member
Join Date: Sep 1999
Location: far away from the SDMB
Posts: 6,610
You, your family and the doctors have done all loving people can do, dreamer.
As much as you can, don't worry about the medical pros allowing your father to suffer. They work a heartbreaking job but they do it with much compassion. They know your father's condition and they will do everything possible to let him go gently. The terminal care folks who cared for my parents were wonderful to them, and to my sister and I.
By all means stay with you father as much as you can, but please remember to spare some care for yourself as well.
You and your family are staying in my thoughts, dreamer.

Old 12-11-2003, 02:03 PM
Join Date: Dec 2001
Posts: 1,587
I wanted to let you all know that my Dad passed away last Friday night. It took only 3 days after the tubes were taken out so I believe he was ready to go. Now he is at peace and free. I was the last one to see him aware and awake and we had had some special moments together on Thursday morning. I am glad he does not have to linger and suffer anymore. I will miss him so much but I am hopeful I will see him again someday.

Tuesday was his funeral. It was a beautiful military service. There were 3 service men (one woman) who shot their rifles three times and then the song "Taps" was played on a trumpet. There was a beautiful American Flag draped across the casket which was folded so nicely by the service men and given to my stepmother, who in turn gave it to me. The pastor said some very nice words and added some humor about my Dad which made everyone feel at ease. My Dad lived to be 70 and it was his time, he said. We all will go back to the dust from which we came and back to the God that made us and loves us.

The whole time I was imagining my Dad standing to the side under his umbrella (he loved rain) and watching everything that was going on with a smile. He would have been proud. I am proud to have had the honor of knowing him and being his daughter.

Thank you all again, your comments and support have meant so much.
Old 12-11-2003, 02:20 PM
Join Date: Mar 2002
Location: Suburbs of Chicagoland
Posts: 22,337
Thank you for the update. I agree, it does sound like your dad was ready to move on, and hopefully this will help quell any doubts that might remain in your heart. It also sounds like that funeral was the best possible way to send him off.

My dad died when I was in my early 20s, and I learned that you carry on with you in your heart and memories parts of those people. So by sharing a little about your dad with all of us, he has touched us in some small way as well. May you find many occasions in your life to share the lessons your father taught you, and thus keep the best part of him "alive."
Old 12-11-2003, 02:29 PM
Charter Member
Join Date: Nov 2001
Location: Milwaukee
Posts: 2,720
dreamer, thank you for sharing this closing chapter with us.

I am happy for you that you had those special moments with your father before he passed away. I too treasure those last few interactions with my mother before she left us earlier this year.

I am proud of you and your family for making the right, albeit difficult, decision about maintaining the dignity of the end of this life, and not prolonging the suffering.

It is interesting to me how sometimes the most seemingly insignificant thing can trigger a sense of loss, even after the many months that have gone by already. For example, Thanksgiving dinner was OK. But I got choked up when I was washing the dishes afterwards because my mom always dried. I was at first sad. Then I smiled. Such is love.

Thank you again for sharing your story.

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