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Topic The End of the Road Go to previous topic Go to next topic Go to higher level

By annwood On 2007.12.10 11:53
I just feel like interacting with all of you at this time. On Saturday my husband became eveh more confused and I didn't think too much about it. During the night he developed a fever and his urinary output was dark brown. His physician prescribed antibiotics but he had yet to respond. The urine is even darker, the output is decreased, he has some jaundice and he is not awake. I believe he is in system shutdown but am awaiting the Hospice nurse's arrival to confirm this. The priest is coming for the Sacrament of the Sick today. I am grateful that he is in no pain but I do believe he is now dying.

The struggle has been long an difficult. I believe I am prepared but who knows. I have so often wished this was over for him and for me - I am finding that you don't feel that way when the time is near. I wonder what I will do with that hugh void in my life. As difficult as it has been and despite the fact that he was not the man I once knew he was there and that may soon be gone.

I just needed to get this out. I so appreciate all of you beiung there and sharing the stuggle.

By kuttlewis On 2007.12.10 12:15
This is a time for talking to friends and rediscovering your faith. Didn't you plant a lot of roses? Doesn't every plant have a story to tell? The people I know who have died, some quite young, live on in my memory as they were, before their illnesses took them away. I see them dancing, laughing, joking, and teasing me for being in the dumps.

I found this recently and hope it speaks to you:
A Time Comes In Your Life

A time comes in your life when you finally get it. When in the midst of all your fears and insanity, you stop dead in your tracks, and somewhere the voice inside your head cries out ~ ENOUGH!

Enough fighting and crying or struggling to hold on. And, like a child quieting down after a blind tantrum, your sobs begin to subside, you shudder once or twice, you blink back your tears, and through a mantle of wet lashes you begin to look at the world through new eyes. This is your awakening.

You realize that it's time to stop hoping and waiting for something to change or for happiness, safety and security to come galloping over the next horizon. You come to terms with the fact that he is not Prince Charming and you are not Cinderella and that in the real world there aren't always fairy tale endings (or beginnings for that matter). And that any guarantee of "happily ever after" must begin with you; and in the process, a sense of serenity is born of acceptance.

You awaken to the fact that you're not perfect and that not everyone will always love, appreciate or approve of who or what you are ... and that's okay. (They're entitled to their own views and opinions.) And you learn the importance of loving and championing yourself; and in the process a sense of newfound confidence is born of self-approval.

You stop complaining and blaming other people for the things they did to you (or didn't do for you) and you learn that the only thing you can really count on is the unexpected. You learn that people don't always say what they mean or mean what they say, and that not everyone will always be there for you; and that it's not always about you.

So, you learn to stand on your own, and to take care of yourself; and in the process, a sense of safety and security is born of self-reliance.

You stop judging and pointing fingers ... and you begin to accept people as they are, and to overlook their shortcomings and human frailties; and in the process, a sense of peace and contentment is born of forgiveness.

You realize that much of the way you view yourself and the world around you is as a result of all the messages and opinions that have been ingrained into your psyche. And you begin to sift through all that you've been fed about how you should behave, how you should look, and how much you should weigh; what you should wear and where you should shop, and what you should drive; how and where you should live, and what you should do for a living; who you should sleep with, who you should marry, and what you should expect of a marriage; the importance of having and raising children, or what you owe your parents.

You learn to open up to new worlds and different points of view. And you begin reassessing and redefining who you are and what you really stand for. You learn the difference between wanting and needing and you begin to discard the doctrines and values you've outgrown, or should never have bought into to begin with; and in the process you learn to go with your instincts.

You learn that it is truly in giving that we receive. And that there is power and glory in creating and contributing; and you stop maneuvering through life merely as a "consumer" looking for your next fix.

You learn that principles such as honesty and integrity are not the outdated ideals of a bygone era, but the mortar that holds together the foundation upon which you must build a life.

You learn that you don't know everything, it's not your job to save the world ... and that you can't teach a pig to sing.

You learn to distinguish between guilt and responsibility, and the importance of setting boundaries, and learning to say NO.

You learn that the only cross to bear is the one you choose to carry, and that martyrs get burned at the stake.

Then you learn about love. Romantic love and familial love. How to love, how much to give in love, when to stop giving, and when to walk away.

You learn not to project your needs! or your feelings onto a relationship. You learn that you will not be more beautiful, more intelligent, more lovable or important because of the man or woman on your arm or the child that bears your name. You learn to look at relationships as they really are and not as you would have them be.

You stop trying to control people, situations and outcomes. You learn that just as people grow and change, so it is with love...and you learn that you don't have the right to demand love on your terms ... just to make you happy.

And, you learn that alone does not mean lonely. And you look in the mirror and come to terms with the fact that you will never be a size 5 or a perfect 10, and you stop trying to compete with the image inside your head and agonizing over how you "stack up."

You also stop working so hard at putting your feelings aside, smoothing things over and ignoring your needs. You learn that feelings of entitlement are perfectly OK.... And that it is your right to want things and to ask for the things that you want...and that sometimes it is necessary to make demands.

You come to the realization that you deserve to be treated with love, kindness, sensitivity and respect; and you won't settle for less. And, you allow only the hands of a lover who cherishes you to glorify you with his/her touch ... and in the process you internalize the meaning of self-respect.

And you learn that your body really is your temple, and you begin to care for it and treat it with respect. You begin eating a balanced diet, drinking more water and taking more time to exercise.

You learn that fatigue diminishes the spirit and can create doubt and fear. So you take more time to rest.

And, just as food fuels the body, laughter fuels our soul. So you take more time to laugh and to play.

You learn, that for the most part, in life you get what you believe you deserve... and that much of life truly is a self-fulfilling prophecy.

You learn that anything worth achieving is worth working for, and that wishing for something to happen is different from working toward making it happen.

More importantly, you learn that in order to achieve success you need direction, discipline and perseverance. You also learn that no one can do it all alone and that it's OK to risk asking for help.

You learn that the only thing you must truly fear is the great robber baron of all time. FEAR itself.

You learn to step right into and through your fears because you know that whatever happens you can handle it, and to give in to fear is to give away the right to live life on your terms.

And you learn to fight for your life and not to squander it living under a cloud of impending doom. You learn that life isn't always fair, you don't always get what you think you deserve; and that sometimes bad things happen to unsuspecting, good people. On these occasions, you learn not to personalize things.

You learn that God isn't punishing you or failing to answer your prayers. It's just life happening. And you learn to deal with evil in its most primal state ~ the ego. You learn that negative feelings such as anger, envy and resentment must be understood and redirected or they will suffocate the life out of you, and poison the universe that surrounds you.

You learn to admit when you are wrong and to building bridges instead of walls. You learn to be thankful and to take comfort in many of the simple things we take for granted, things that millions of people upon the earth can only dream about: a full refrigerator, clean running water, a soft warm bed, a long hot shower.

Slowly, you begin to take responsibility for yourself by yourself; and you make yourself a promise to never betray yourself and to never, ever, settle for less than your heart's desire.

And you hang a wind chime outside your window so you can listen to the wind. And you make it a point to keep smiling, to keep trusting, and to stay open to every wonderful possibility.

Finally, with courage in your heart and with God by your side you take a stand; you take a deep breath, and you begin to design the life you want to live as best as you can.

Author Unknown

By RhondaM On 2007.12.10 15:47
Annwood...I'm very sorry to hear this because I know it will be difficult, no matter how ready you think you are and how much you want it all to end.

I found that when my dad died, I stood there for a while when they took the oxygen off and pronounced him dead, feeling very much like the mother character (played by Shirley McClain) in Terms of Endearment when her daughter died after a long illness, I felt numb and surreal and I suddenly wanted him back, and I wanted to shout (like the character did) "I'm so stupid, I'm so stupid, I thought I would actually feel relieved!"

You don't feel relieved at first, you feel a deep abyss of sorrow and loss, you want to bring him back at all costs, but the relief and thankfulness comes later after you have had a chance to process it in your head and heart. There is no way to prepare for a loss like this, no matter how much your practical mind tells you that you can or that you are. You just can't. But you will deal with it when it happens, and with time, you will be able to smile as you remember the man he was before PD took him away from you in inches, and you will be glad he is no longer suffering.

Just know that you have done all you could for him, you loved him to the end, and this is the natural progression of life and you will see him again someday.

I'm very sorry and I will lift you up in prayer.

May God Bless,

By Pearly4 On 2007.12.10 18:54
Just know that whatever happens, we are with you.


By annwood On 2007.12.10 20:04
Thanks to all of you. It is so good to know that there is a network of caring people out there for me. Kindness is everywhere. My husband most likely fractured a bone in his hand on Sat when he fell. One of the Hand Surgeons came over tonight and personally put a cast on his hand so that he would be comfortble. Didn't even require a x-ray. The Hospice Nurse told me it would never happen and that we would have to take him to the ER. I am so indebted to this man for making things easier.

I suddenly realize that I will miss him so very much especially in light of the fact that he has required my constant attention for so many months. There is something to the circle of life. My daughter is expecting twin boys in January and they will be named after my husband. I imagine I will be busy helping her for awhile.

By lbellomy On 2007.12.10 20:35
That is such a beautiful cycle of life. Twin boys!!

By colettem On 2007.12.10 22:19
Just want to thank you for your openness over the past months and for sharing all the ups and downs. It has meant a lot to me, I feel like I'm a part of your story even tho it's been just through a computer. May you be strengthened and comforted in the days ahead. And if you can, please continue to let us know how you're doing.

By grazia On 2007.12.11 16:28
Annwood, I dont know if in this moment when I post, your husband is still in life ( because dont think that dying is so easy and simple ), or if he has passed away: I just wanted to add my comment to your message, which is very meaningful. Maybe you all remember some weeks ago, when someone asked our advise about joining her life to the life of a man who had Parkinson disease: many people were very negative about that, stating that a marriage with a PWP would have been kind of suicide. Now your sad post, Annwood, demonstrates the opposite. It shows how our time on earth can be limited , and so our joys and our pains are never endless. It shows that, as exhausting and depressing as it can be, caring for a loved one can give some sense to our life, in fact you wonder what will be your life from now on...I can tell you how it will be: you will probably miss your husband alot, not only the good moments, even the bad ones, you will feel guilty for each minute when you hoped everything could end...And you will feel some comfort only when you will convince yourself that you have loved him with all your heart. I tell you this because I have gone through the same experience with my father : some scars never go away...I wish you strength.

By punky On 2007.12.11 20:23
Annwood, You will miss him dreadfully when he dies but will soon realize that his presence and spirit will remain with you for the rest of your life. My mom died over 50 years ago and I still have her with me. I've buried 6 wonderful brothers I adored and none have left me alone. They are real spirits and move about with me and in me in everything I do. I see my mother in my kids and in grandchildren. I hear her in my children's voices as they care for and love their own kids. I see her in every beautiful sunset and hear her in every beautiful piece of music. I hear a favorite phrase she used or see a movement that reminds me of her or read a passage that makes me think of her wisdom.

One thing I've learned for sure. Our loved ones don't "pass away", or "pass over", Those we love remain very close to us, right inside of us as they cuddle in the deepest, quietest and most loving corners of our heart and soul.

More than the scars and the memories remain. Our loved ones are so much more than memories. We continue to hear them, see them and think of them more often than you can imagine now during this sad time.

By Pick On 2007.12.12 01:19
Hi Annwood,

There's nothing I can say that hasn't already been said by others with more experience and eloquence, except that I can understand your fears. But I think I probably speak for everyone when I say that even though I know only a little bit about you from this forum I have 100% faith in you and confidence that you will get through this. Is it not apparent to everyone by now that you are already a survivor? I'm sure there are days now and will be days in the future when you think you'll never pull through....I hope knowing that you have a "Team Annwood" here who roots and prays for you helps you on those days even if only a little.

With much love and prayers, Pick.

By superdue On 2007.12.12 11:29
Hope and comfort in the future for you.......Sue

By lule On 2007.12.15 07:55
Hi Ann,

Hope your O.K. and that your husband improved. pleasenote that how ev er far we are apart we are with you in prayers. your postings have been very encouraging. -lule

By jockdoc On 2007.12.15 15:44
Dear annwood, Please know that Jock Doc and Barb are daily praying for you and your husband.
Barb is home for the weekend, but must return to hospital on Monday. I have been spending nights at the hospital with her. We now have been there for 42 days. Praying for you Jock Doc and Barb

By sooboo On 2007.12.15 17:30
I am sad to hear this. You are in my thoughts as well. Be kind to yourself.

By annwood On 2007.12.17 23:54
Hi to All My Good Friends. I haven't posted for a few days but do want to thank you for all of the support. My husband is in and out of a coma here at home. The ranting, raving, falling and confusion are gone. He has been on an antibiotic for a urinary track infection and now is sounding like he has some respiratory problems going on despite being on an antibiotic. His physician says this may take awhile because he is a healthy man except for his Parkinsons. That translates to he has a strong heart. This is rough but I believe I am ready. I am fortunate to have caregivers during the night and family around to help. It is too bad this is happening during the holidays but we weren't given a choice in any of this were we? I think of all of you throughout the day and feel comfort from the fact thatyou are out there. I will keep you posted.

By Holly On 2007.12.28 02:29
Hi annwood,

I too am walking down the same road you are. I got hospice involved May 7 with my father. In Oct he got sick from his blood thinner, then started to have brown urine and was treated with antibiotic's. Since then, he sleeps all day and is confused at times. He also has a strong hart and is healty but for the Parkinson's. I was told yesterday that he is starting to have some respiratory problems. When I read your posting it was as if I was writing it. My mother and father have been married 54 years and she too is having a hard time seeing him slip away. We are thankful for hospice, they have realy helped. However, I am still deperate to get as mucn info as I can about what is to come. Thank you for sharing and remember to take care of yourself.

By annwood On 2007.12.28 23:06
Just an update on my hubby. He continues to sleep most of the time. They finally ok'd the Haldol because of his dellusional thoughts, which have become much more vivid. Haldol interfers with the PD medications but I don't think they have been of much use during the past few months. He is very frightened - thinks the ceiling is going to fall on him, someone has been murdered in the house, etc. The Haldol keeps him calm. I am finding that the actual dying process takes some time (not that I want it to hurry). He has not eaten any solid foods for a week but I am able to get some liquids into him throughout the day. His urine output is decreasing, as would be expected, and he has lost a tremendous amount of weight. The Hospice nurse tells me to watch for a loss of color in his skin, blue fingernail beds, breathing which stops for brief periods of time ( apnea) and an inability to cough up the secretions. She did not think he would live until New Years but I think he may.

I find myself sitting by his bed and thinking of what I will do without him. I cry at unexpected times. Christmas was rough and I think about what next Xmas will be like. A great deal of intaspection. I can't imagine a life without PD but realize that will be a reality before long.

I think of all of you and your struggles. There is no doubt that all of us have been dramatically changed by this disease. Time will tell how much.

I will keep you udated

By mylove On 2007.12.29 00:04
My heart and prayers are with you. May you find some peace and comfort in your friends, family and faith, and know that we are thinking of you.

By punky On 2007.12.29 09:29
Your comment about finding out how long it takes to die is right on the mark. The body just doesn't seem to want to give up. Or - and this is more to the point - the mind is busy going over all the wonderful experiences that have filled however many years we've had. I believe your husband is remembering your happy times together and encourage you to take this time to remember also. Please believe that while you're sitting with him, holding his hand, and bringing comfort and peace to him during these final steps, he can feel your love. He's hearing your voice and is comforted and grateful for your presence as you gently accompany him on these last steps of his journey. It's hard to realize now when you're in such pain but I do believe, in time, you'll be ever so grateful you've been blessed with the time to send him on his way.

By kuttlewis On 2007.12.29 09:31
I'm holding your hands, too, annwood.

By grazia On 2007.12.29 10:52
Annwood, my father too, took some time to pass away, meaning that he was considered on the edge of death for more than once, but then, he found somewhere the strength to survive, even if in miserable conditions...He lost his final battle because of a pneumonia due to aspiration, and that was a matter of a couple of days. Your last post has reminded me of when I have been sitting close to his bed for those last days, feeling contredictory feelings, but when finally I saw him quietly aslept forever, the only feeling in my soul was deep sadness and loneliness. I think your next Christmas will surely be a better one, also because few things can be worse than sitting close to a loved one who is dying. But exactly as you have stated, this kind of disease never lets us completely, the proof is given by people like me, who still read and post on this forum, even after everything is over. And its true, it does change our lives and it deprives us of our best energies. But we learn to be sensitive towards others sorrow.
I wish you strength in this difficult moment.

By RhondaM On 2007.12.29 16:56
Like Grazia, I, too, still come here to read and remember and provide whatever little encouragement I can from time to time, even though my dad died in 2003. It is something that will always be a part of me, no matter how long I live. I come here to honor his memory and my love for him.

Annwood, you may think your husband can't hear you, but just seconds before my dad took his last breath, I took his hand and said, "Daddy, it's Rhonda, can you hear me?" and even though he was in a deep coma and in the last seconds of life, he turned his head toward me in a sudden movement that made the nurse beside me jump and grab my arm like it scared her, but it gave me great comfort to know he heard me and knew I was there. I said, "I love you" and he then let out his last breath. I know he heard me. That has given me peace all the days since.

Gee, it's so hard, these last days and hours. My heart goes out to you and others who are going through it. I lift you up in prayer and ask God to give you peace and comfort that only he can.


By Pick On 2008.01.02 13:33
Rhonda, thank you for that beautiful story. It gives me hope that my dad will stop being so angry, even if only for a moment, before he dies.

I can't read this thread without crying. Annwood, I don't know what else to say that hasn't already been said other than I think of you often and remember you and your family in my prayers.

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