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I just had a breakthrough tonight. As a caregiver, sometimes it gets a bit much with the various phone calls I need to make, doctors or social workers I need to chase down, errands to run. So it's nice to have some success and good news for a change.

 

I found out that my mother has a new attending physician (no one told me that the old one was no longer working with us, so I was leaving messages at the wrong place). And this new doctor seems like a great improvement over the last one. For one thing he spoke with me for about ten minutes on the phone, as I raised questions and concerns. I asked if mom should get an EEG to see how much brain activity she has since her stroke? No, he said she is definitely not brain dead, though she's in a coma. He said the damage is significant and it's unlikely she will ever fully recover -- but that there's always a chance.

 

I mentioned that mom had been getting Ambien, which has been found to awaken people from comas for four hours a day. It doesn't always work, but it seemed worth trying. The doctor wasn't familiar with this use of Ambien. But instead of being threatened, he welcomed the chance to learn new information. He gave me his email so I could send him the link to the "60 Minutes" show about this.

 

I told him that my mom's past doctor never returned my calls or emails, or had time to talk to me. The new doc said he always makes time for his patients. And when I call his number at the office, it will bounce to his cell phone! But this is the best part. Since my brother also recently had a stroke and is in the same nursing center -- he agreed to be the attending physician for BOTH of them. (My brother had a different doctor who was just as frustrating to talk with as my mom's. And trying to reach both of them was driving me batty!) This will streamline the care for Patsy and Clyde quite a bit. I'm so glad I decided to pick up the phone tonight and call him! And thank goodness there are still doctors who care...even when your loved ones are in a nursing home.

 

:Clap-Hands: :cheer: :Zzzz:

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Dwight,

 

That is fantastic news for you, your Mom and brother. Doctors like that are a rare breed for sure but thankfully they are out there.

 

Hope all continues to go well.

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Dwight: :Clap-Hands: :cheer: That is great news and thank you for sharing it with us. It is always a big lift to all when we can hear positive news and that there is HOPE.... there always is hope. Sometimes, I feel families are afraid to raise their voice and be heard because they feel the DR always knows best since he is the one with the Degree, but, in my book, the only perfect Dr. I have is my Heavenly Physician. As a family member, I believe they have the right to be the advocate for their patient who may not be able to speak for themself.

I saw the video of your Mom when she was opening her eyes, Dwight, I feel deep in my heart, she was not in a coma full force. I am not a Professional by any means, but, she seemed to me as if she was not. I am keeping her in my prayers. It will make it a lot easier for you, for sure, to have one Dr for both your Mom and Brother. Hold on to that guy tight, there aren't too many of his caliber out there. Good for you. Your spirits must be as bright as the fireworks that will be out there on July 4th.

Please keep us posted. CONGRATS

Here is my happy news dance just for you: :happydance: :beer:

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Good for you Dwight, I know the feeling and minutes you save on the cell phone!

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Thanks Donna, Jan and Maximum.

 

I knew the folks here could appreciate how this change will make life a bit simpler for me as a caregiver. And hopefully it will improve the care for my mom and bro, now that one doctor can oversee them both. He'll have the big picture of how stroke affects our family.

 

Also I finally got my insurance straightened out so that my doctor can give me an MRI/MRA to check for aneurysms in my noggin too. Hopefully that will happen sometime next week. I know self-care is an important and overlooked aspect of caregiving. And since I am unpartnered, it's all the more important I take care of me. As all of you need to take good care of you. Treat yourselves well! Happy 4th.

 

:out_of_here:

 

Jan, I like the happy news dance!

 

P.S. I'm a novelist and I'm starting to write a new one called THE HOPE STORE. It's set in the near future when hope can be purchased over the counter...for those who have run out.

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Hi Lenny, thanks for your note. Yes, I feel this is good progress having one doctor for both my mom and brother. I also talked to a social worker who will now be my contact for both of them, instead of having two.

 

Hope you're holding down the fort in Canada. The last time I was there was for the Toronto film fest.

 

Dwight

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Hi Dwight.. That is great news that you can coordinate care for you mom and brother.. I am happy this Dr is recepttive.. and Listens.

 

I worked in the Medical Field for many years... There are some Great & caring doctors. unfortunately their are some that develpe the "god" complex.. or.. think they know the best.. and don't listen.

 

Good luck on your new novel. and best wishes to you and your family.

 

Bonnie

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Dwight,

 

So good to hear about the new doctor. That's half the battle. :D

 

I don't believe we've met. My daughter Rachel had a massive stroke on 2/17/06. She was only 22. She is 25 now. She also has CHF. She had a blood clot form in the heart and break off to the brain. She was also born with a growth hormone deficiency. My husband John and I are her caretakers.

 

I applaud you for helping with both your mother and your brother. :Clap-Hands: It can be difficult at times, and so rewarding at others.

 

We live in Southern Illinois. My sister is in the Northwest suburbs of Chicago and my father lived on the South side in Brighten Park. I graduated from McHenry High School in McHenry, Il. Rachel and I came up to a Stroke Convention last year in Hoffman Estates at the Alexian Brothers Hospital.

 

Good luck to you all and I will add you and your family to our prayer list. :hug:

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Dwight,

That is great news. One doctor for both will save you so much time. Plus, you got one that is willing to talk with you. Perfect.

People just do not realize how much time you spend on the phone co-ordinating therapy, doctor's visits, and such. A social worker for both of them is good. This way the doctor and the social worker will know what you are facing.

When my husband had his stroke in Dec. 08 and we were getting ready for discharge. in Feb. 09 . I luckily had my son home for the week and he made alot of the arrangements in setting up doctors visits and rehab for us. I was busy staying at the hospital and doing the transition stuff for preparations to leave. A good book to read is Stronger After Stroke. A good resource for other information.

I have learned that you may need to change therapists if they are not working well with the stroke survivor. You do need to be the advocate. Progress is slow and progressive. I take my husband to the pool every morning. The YMCA has a chair lift that sets you in the water and then lifts you out. Since he cannot walk yet this is essential. We started on the side of the pool. But, just last week, he graduated to walking with a noodle under his arms in 5-5-1/2 feet of water. He trusts me to help him out. In the deeper water it is easier for him to walk. He is able to to simulate a normal type of walk. He gets tired very easily. He says that the shower afer the swim is as stimulating as the swim.

Take care of yourself.

Ruth

I am glad to hear that you are getting yourself checked out. With stroke running in your family..I am sure that that is a wise thing to do. Strokes are preventable.

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Bonnie, thanks for your good wishes for my family and my novel!

 

Lisa, it's nice to meet you. I'm sorry to hear of your daughter's stroke at such a young age. She's lucky to have a loving family to support her.

 

Ruth, yes there's a lot of time on the phone, and filling out paperwork. And since both my mom and brother had strokes this year, it's twice as much work. But having one attending physican and one social worker at the nursing center for both of them should help. I agree that sometimes you have to change doctors. Since my family can't advocate for themselves -- I do it on their behalf. It can be frustrating, but every once in a while the stars line up a bit, like now, and it's rewarding. The caretaking.

 

Since my mom is in a coma, I like to visit her and talk to her. Tell her about my day and how people are still hoping and chanting for her recovery. And that they miss her. On a few occasions, mom opened her eyes and looked around. I caught that on video and shared it with people. And my brother is starting to be able to walk on his own with a walker, so that's progress.

 

I will be having an MRI/MRA on my brain to check for potential aneurysms on July 15th. Since I have normal blood pressure, my guess is they will give me a clean bill of health. And that will be a relief. I'm looking forward to it.

 

Good luck to everyone.

Dwight

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Dwight: I will keep you in my thoughts and prayers for the 15th. Sending positive energy your way.
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Thanks, Jan for sending positive thoughts my way. I think I'll for go my tests with a friend for moral support.

 

It's nice that my post got pinned to the board as an important topic. That's fun. I guess you can never have too much good news in this life..

 

Dwight

 

:Neeeedsleeep: :Speechless:

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  • 4 weeks later...

Here's the update on my family's new doctor. Well, nothing is ever as easy as it seems. It took me almost all of July but finally today I had my first face to face meeting with the new doc. He's a good hearted guy but so busy. In our half hour, he took about eight cell calls. He answered my questions very honestly.

 

The long and short of it is: he doesn't think my mother (who has been in a coma since her cerebral hemorrhage in Jan) will improve much as the stroke was very severe. He doesn't think she'll be able to talk again or walk again. This brings up quality of life issues for me to consider. He suspects that if her ventilator was removed, she would pass away. I know that miracles do happen, but it's good to hear the straight medical point of view.

 

It was my mother's wish not to be kept alive in a vegetative state for years. And on her medical power of attorney form, she checked that box asking that no death-delaying methods be used (I suspect the ventilator and feeding tube might fall into this category). I love my mother more than I can say. But I know she's lived a full life at 82 and that quality of life is very important to her. If anyone has any input on this or has been in a similar position, please let me know your thoughts.

 

So I may be facing some tough decisions sooner than I expected, including hospice and removal of care. I am the power of attorney. As time goes on, I see my mother's health deteriorate some. And she has frequent trips to the hospital for infection and breathing issues. I do worry that she might be suffering too.

 

To make matters even more pressing, Medicare stopped paying for nursing home care this week. The state [Medicaid] will only start paying toward the $15,000 monthly expense once all of mom's assets have been paid over to the state. Surely I will talk to some of my cousins and relatives and friends. I hope I make the right decision. Wish me luck.

 

:rolleyes:

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Dwight: You have been a very loving, devoted Son to your Mom and Brother throughout all of this. My heart truly goes out to you. You do have some "heavy" decisions to make. Your Mother has lived a long life, 82 years. She did make medical decisions before this ever happened from what you have stated. I feel when a person does that, they have their decisions already made beforehand in case of a situation like this.

I know, for me, when I was in the coma and on life support from my Brain Stem Stroke, the medical Professionals told my hubby if I did make it I would be in a vegetative state for the rest of my life and have to live in a nursing home. I am still here. I had a feeding tube and on life support, however, I was about thirty years younger than your Mom. I feel since this is such an important decision Dwight, having your family involved in the decision making would be a good idea, and possibly your Buddhist Mentors/family. Have you seeked a second opinion other than this new Dr? Did this Dr state if you Mom was "Brain Dead" no activity at all? That would be the true answer for me, When my first hubby died of three brain any. they took him off life support once he was Brain Dead,no brain activity at all. I then stayed for hours because since he was in a self induced coma, they had to wait so many hours to pronounce him gone. I stayed holding his hand until that moment. I, personally, would find it hard to take her off life support if she wasn't brain dead. I feel you have exhausted all other options. Dwight, I feel you have looked into every option possible. You see first hand how she is and it has been a long time. I am a firm believer in the thought of: "quality of life vs quantity of life". You have a lot of issues, financially, decisions to make. I know, in my case, I am blessed my Hubby just hung in there, they all told him in their medical opinion, I wouldn't make it, So many nights Wayne was told I wasn't going to make it through the night, and if I did, I would never walk, talk again. I did, though, I am glad he didn't take me off life support. It is a tough situation to be in. I will pray you will have peace with your decision. I will keep you in my thoughts, prayers and send healing and positive energy your way. Please keep us updated.

 

Oh, just a thought that came to me, when I was in the coma and on life support, just to ease your mind Dwight, I truly didn't feel a thing. So, please rest that she probably doesn't feel pain. I am not a Professional, however, I am just sharing my experience.

My heart goes out to you. :friends: You have been there, you have been an active by her side Son, so know you have done all you can. She is in God's loving arms.

***** I reread your last post Dwight and you know what, I had to add this thought to my answer to your post, this new dr you finally got to see face to face, while he took eight cell calls, you stated it was about all within a half hour time frame, I would definitely have a second and third opinion regarding his thoughts on your Mom. I would do nothing without checking all the crossing all your "t's" and dotting all your "i's"

This is a very serious decision you are making. I have only known one person in my cancer ministry, a family that had to turn off life support and it was the hardest thing they ever had to do for their 11 year old son, Chris. I don't want to see you enter into it lightly. Chris was BrainDead.

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Dwight,

 

Sorry to hear about the news you received and I agree that a second opinion may make sense. I have my mom's power of attorney too and we have spoken a lot about what she wants and does not want. I know that this is one of the hardest and most painful choices to ever have to face ( had to go through this with my Dad) but in many ways it is not your choice- it is just your very hard job to figure our her choice and carry it out. 'll be thinking of both of you.

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Dwight,

 

I'm glad you had the opportunity to have a face to face heartfelt talk with this new doc. He confirmed what others have told you before about your Mom if I remember correctly. Miracles can and do happen as many here have proven.

 

As your Mom has stated before all this happened to her she would not want this "quality of life" you do have some diffiicult decisions to make. It's a difficult position to be in as a son and power of attorney. I hope your family will be by your side at this time. My thoughts and prayers are with you.

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hi dwight. i agree with the others to get a 2nd opinion. the dr told you before that your mom did have brain activity. i would verify that now before making any decisions. drs tell family members the worse case scenario about never walking and talking again. there is always hope and yes miracles do happen. esp with you at her side, you are a very loving and devoted son to her. but as you said, you know her decisions she made prior to this event. i do not feel she is suffering. just in a peaceful place, (her coma) which is helping her brain to recover. i too would get family and your support team involved in this decision. i feel jan was alittle strong in saying "you will have to live with yourself", its a decision no one ever wants to make with a loved one. but one that has to be made should she have no brain activity and the machines are truly keeping her alive. when the right time comes, you will know in your heart that its time to let her go and will do the right thing. i only wish you were'nt having to make this decision, but your mom trusted you in doing the right thing for her when that time came. peace and comfort will come into your heart, in doing whatever you must. please keep us updated as you can. your mom has proven to be a real fighter in the battle against stroke. god bless her for that.

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Jan, thank you for your thoughts on this difficult situation. I do think I will see how I can get an second doctor's opinion. Maybe from the doctor who did the initial surgery to release the blood pressure from mom's head after her stroke. (I wonder if I have to clear this with the nursing home's attending doctor, or if he can just come as my guest. I'll ask him if this other doctor if he needs access to medical test results, etc.)

 

I have sent out an email to relatives around the country to let them know the situation. I've asked them to share their recommendations with me. I will probably also speak to a Buddhists leader for guidance on the subject. I know when I have spoken to other doctors, they had said the mom is not brain dead because she can do certain behaviors on her own: like opening her eyes and looking around, she reacts to pain by her facial expression, etc. But I know quality of life has always been important to my mother. My mom would not consider these behaviors enough to qualify as a worthwhile life. And I suspect that the ventilator and feeding tube in the eyes of the law are considered artificial, death-delaying methods (which my mother requested in her will not to be used to prolong her life).

 

Jan, that's good to know that you didn't feel pain when you were in a coma. I appreciate the input from you and other members of StrokeNet. You guys have a unique perspective as survivors and caregivers.

 

Dwight

 

 

 

Dwight: You have been a very loving, devoted Son to your Mom and Brother throughout all of this. My heart truly goes out to you. You do have some "heavy" decisions to make. Your Mother has lived a long life, 82 years. She did make medical decisions before this ever happened from what you have stated. I feel when a person does that, they have their decisions already made beforehand in case of a situation like this.

I know, for me, when I was in the coma and on life support from my Brain Stem Stroke, the medical Professionals told my hubby if I did make it I would be in a vegetative state for the rest of my life and have to live in a nursing home. I am still here. I had a feeding tube and on life support, however, I was about thirty years younger than your Mom. I feel since this is such an important decision Dwight, having your family involved in the decision making would be a good idea, and possibly your

Buddhist Mentors/family. Have you seeked a second opinion other than this new Dr? Did this Dr state if you Mom was "Brain Dead" no activity at all? That would be the true answer for me, When my first hubby died of three brain any. they took him off life support once he was Brain Dead,no brain activity at all. I then stayed for hours because since he was in a self induced coma, they had to wait so many hours to pronounce him gone. I stayed holding his hand until that moment. I, personally, would find it hard to take her off life support if she wasn't brain dead. I feel you have exhausted all other options. Dwight, I feel you have looked into every option possible. You see first hand how she is and it has been a long time. I am a firm believer in the thought of: "quality of life vs quantity of life". You have a lot of issues, financially, decisions to make. I know, in my case, I am blessed my Hubby just hung in there, they all told him in their medical opinion, I wouldn't make it, So many nights Wayne was told I wasn't going to make it through the night, and if I did, I would never walk, talk again. I did, though, I am glad he didn't take me off life support. It is a tough situation to be in. I will pray you will have peace with your decision. I will keep you in my thoughts, prayers and send healing and positive energy your way. Please keep us updated.

 

Oh, just a thought that came to me, when I was in the coma and on life support, just to ease your mind Dwight, I truly didn't feel a thing. So, please rest that she probably doesn't feel pain. I am not a Professional, however, I am just sharing my experience.

My heart goes out to you. :friends: You have been there, you have been an active by her side Son, so know you have done all you can. She is in God's loving arms.

***** I reread your last post Dwight and you know what, I had to add this thought to my answer to your post, this new dr you finally got to see face to face, while he took eight cell calls, you stated it was about all within a half hour time frame, I would definitely have a second and third opinion regarding his thoughts on your Mom. I would do nothing without checking all the crossing all your "t's" and dotting all your "i's"

This is a very serious decision you are making. I have only known one person in my cancer ministry, a family that had to turn off life support and it was the hardest thing they ever had to do for their 11 year old son, Chris. I don't want to see you enter into it lightly. Chris was BrainDead.

 

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MeKelly,

 

Thanks for your note. That's a good point that it's less about a decision that I have to make, and more about being true to carrying out my mother's wishes. Of course, it still puts me in a difficult position. I'm sorry you had to make a similar choice with your father.

 

I suspect my brother would prefer my mother be kept alive indefinitely -- but that is not what my mother requested in her will. As Power of Attorney, I doubt that I could consciously and legally act in contradiction of her wishes. I do know that my mother has lived a very full life and I am at peace with whatever decisions must be made. She is a woman who lived her life without regrets and with much joy. If a second doctor felt she did have a chance to talk and walk again, I would have to rethink things. Though I have talked to other doctors and their opinions range from: "This is as good as she will get" to "You never can predict these things." I guess this is what the Power of Attorney statements means when they say to consider all factors: quality of life, burden of cost, etc. Sorry my note was longer than yours!

 

Dwight

 

 

 

 

 

Dwight,

 

Sorry to hear about the news you received and I agree that a second opinion may make sense. I have my mom's power of attorney too and we have spoken a lot about what she wants and does not want. I know that this is one of the hardest and most painful choices to ever have to face ( had to go through this with my Dad) but in many ways it is not your choice- it is just your very hard job to figure our her choice and carry it out. 'll be thinking of both of you.

 

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Donna,

 

Thank you for sharing your thoughts. Yes it was good to finally put a face to a name for the doctor. I appreciate you reminding me she would not want this "quality of life." It's very important to me that I fulfill her wishes. Since she can no longer act on them herself. If by some miracle, mom is able to recover, I pray her her to manifest that to me in a clear way that I will know. And if no such sign manifests, that will tell me something too.

 

One of my cousins has already replied to my email. His feeling is that the greatest act of love for her is to carry out her wishes as she recorded them. It will be good to hear from my other relatives, my buddhist friends, and the second doctor.

 

Dwight

 

 

 

Dwight,

 

I'm glad you had the opportunity to have a face to face heartfelt talk with this new doc. He confirmed what others have told you before about your Mom if I remember correctly. Miracles can and do happen as many here have proven.

 

As your Mom has stated before all this happened to her she would not want this "quality of life" you do have some diffiicult decisions to make. It's a difficult position to be in as a son and power of attorney. I hope your family will be by your side at this time. My thoughts and prayers are with you.

 

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Dwight: I feel you should be able to bring in any physician, specialist you wish in order to help with doing/making the right course of action/decision for your Mother. When I was in the Rehab, I had three of my personal Physicians come in to visit me and give me their assessment.

If the medical team there has a problem with that, I would wonder about them.

I am happy you sent out an e-mail. You are on top of the situation. You only want what is best for your Mother. Please take care of you. You have a whole family here for you as well. All the best. Please keep us posted.

 

 

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Kimmie,

 

Thanks for your reassurance that when the right time comes, I will know...that it's time to let my mother go. I'm the last one who would want to let her go, but I would not hesitate if it would be in her best interests. I think back to the last time I spoke with her, a few days before the stroke in January. She and I were thinking of going to a movie but decided instead to have lunch nearby. At Italian place. We had calzones and root beer which my mom enjoyed. No deep words were said, but we had a nice time and if that's my last good memory of her -- it's a good one.

 

The other memory I have is of a moment I didn't see. It was the moment of mom's stroke. She was at Borders book store and cafe with two friends. Some details I know from asking her friends. Dorothy said mom had hot coffee, with some whipped cream on top. She like it that way, almost like it was hot chocolate. Then she sat down at a table. I know which table she was sitting at. I've been back there and sat in the cafe. The three friends were talking. At one moment, my mother became silent. Maybe she closed her eyes. Dorothy thought she might have been tired. Then mom's head tilted to one side and they couldn't wake her. That's when they called 911. But if she had to be anywhere when she had the stroke, I'm glad she was where she was. Surrounded by interesting books, sitting with her friends, have her coffee with whipped cream on top.

 

Dwight

 

 

 

hi dwight. i agree with the others to get a 2nd opinion. the dr told you before that your mom did have brain activity. i would verify that now before making any decisions. drs tell family members the worse case scenario about never walking and talking again. there is always hope and yes miracles do happen. esp with you at her side, you are a very loving and devoted son to her. but as you said, you know her decisions she made prior to this event. i do not feel she is suffering. just in a peaceful place, (her coma) which is helping her brain to recover. i too would get family and your support team involved in this decision. i feel jan was alittle strong in saying "you will have to live with yourself", its a decision no one ever wants to make with a loved one. but one that has to be made should she have no brain activity and the machines are truly keeping her alive. when the right time comes, you will know in your heart that its time to let her go and will do the right thing. i only wish you were'nt having to make this decision, but your mom trusted you in doing the right thing for her when that time came. peace and comfort will come into your heart, in doing whatever you must. please keep us updated as you can. your mom has proven to be a real fighter in the battle against stroke. god bless her for that.

 

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Hi Lenny, thanks for your note. Yes, I feel this is good progress having one doctor for both my mom and brother. I also talked to a social worker who will now be my contact for both of them, instead of having two.

 

Hope you're holding down the fort in Canada. The last time I was there was for the Toronto film fest.

 

Dwight

 

 

What a wonderful thing to find out, switched doctors and you didn't even know it, and the plus is he gives a dam for his patients...not many like that out there.

If Lenny doesn't pull his weight up here, I guess I'll have to take charge ;) Yes I've been told the TO film fest is quite a gala, I've been to a few screening of films that were featured there.

 

All the best to Mom and your brother

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Dwight,

I know exactly what you're going through. My father had prostate cancer 5 years ago. I was his power of attorney. He told me that he would try the injections to shrink the cancer, but he was not going through any chemo or radiation. He was of sound mind at the time. He also told me and had a will stating that he too didn't want to be on life support.

 

My father went into heart failure and the doctors asked me at the hospital if they wanted us to do everything possible to save him. Of course, I'm crying and stating yes, do everything you can. He made it, but wasn't doing too well. I consulted with my sister and she agreed with me . After my father came to a few days later he asked me about what happened and he made me promise not to save him the next time. I was so upset, but this was his will.

About a week later my dad looked at Rachel and I and said, "I wont be here much longer". He went into a coma in a couple of hours. The nurse asked me what I wanted to do and I said, "my father says it's time to let him go". That was the hardest decision for me. They made him comfortable and he died 2 days later.

 

We can't tell you what to do Dwight, only tell you what we've been through ourselves. I think deep down inside though, you already know what your decision is. God Bless You. :friends:

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Hi there, just want to let you know I am thinking and praying for you and sending you my positive energy and healing thoughts. Know we are here for you 24/7. Be well. Jan

 

 

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