My Dad had a Massive Stroke - I need advice please...

In My Humble Opinion
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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.

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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…

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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.

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** 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.

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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.)

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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?

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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.

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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, www.va.gov, 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.

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[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]

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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.

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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.

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My thoughts are with you and your family Dreamer.

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Sending out more thoughts and prayers for you dreamer and LurkMeister, wishing I had more to offer…

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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.

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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! :slight_smile:

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…

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lurkmeister words fail for what you are going through.

Hospice nurses are possibly the only proof of living angels I’ve ever witnessed.

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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.

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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.

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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 . . .

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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.