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Topic Tell Me Your Experience With Hospice Go to previous topic Go to next topic Go to higher level

By ILoveWil On 2011.07.16 15:23
Dear friends, The doctor today in ICU has brought up the need to put a feeding tube in Wil's stomach, to put in a trake for breathing and to call Hospice into the process now. He really tried to convince me to cancel the Full Life Support order and place a new order to DO NOT RECESCITATE DNR.

What experience have you as caregivers had with PD patient brain wave CT exam to see if the brain is too damaged for them to recover. Only this information would free me to give a DNR order. They are waiting for me to make a decision and I'm feeling that they are getting a little pushy.

What is your advice to me? I would appreciate any information that would make my decision a little bit easier to process. My emotions are on a roller coaster. I know some of you are having the same problem.

Today on my way driving home for a little refreshing, I told the Lord I wanted to go with my Wil....I don't want to stay here any longer. I can't make any of the decisions I'm required to make now. It's too heavy for me. Wil was my rock and I am a strong woman too but today I feel like a wet noodle. I feel weak with the heaviness of it all. Do you ever wish you could go to sleep and not wake up? Today on several occasions I said "God where are you. I can't see you and I can't feel your presence. All of this is too much for me to handle."

I have a wonderful supportive family but today one of my son's got into an argument with me about something he felt angry about 20 yrs ago. It was too much for me to take. Do any of you find that end of life situations and PD stresses in the family sometimes brings up a can of worms. You say Wow where did that comment come from?

Thank you all for your comments and your thoughtful advice. I'm going back to stay the night with my Wil in ICU but I'll be back home tomorrow to read your posts.

By Pearly4 On 2011.07.16 18:24
I have no personal experience with Hospice and DNR orders were in place for my mother (and currently for myself) so didn't feel the need to struggle with the decision. My mother's father had a stroke and was basically comatose - one sister out of 5 insisted on a feeding tube. She then flew home across the country. The other 4 spent a LONG difficult 6 months watching him die, not knowing if he was in pain, hungry, had an itch, whatever -- it was very, very difficult.

I also have no personal experience with Hospice but understand they are wonderful and have heard nothing but good things from the board and others who have used their services.

In the most difficult hospital times with my mother I could only stand and repeat Proverbs 3:5 to myself over and over - "Trust in the Lord with all your heart and lean not to your own understanding." One day I finally understood and felt God's presence and was at peace with whatever he decided and knew he stood with us. I hope that you too find peace and acceptance with what must be decided and believe you will find the strength to go on. You are in my prayers.

By jockdoc On 2011.07.16 20:29
Hi ILovewil, During the last weeks of my Barbs life she chose DNR. She had struggled for nearly 30 years with PD, she tired of her battle. I couldn't argue. Do remember that she could have changed her mind at any time she chose. I held the POA but she was still in charge of her life. It was never a problem, she died quietly after 30 years. Jock Doc

By RhondaM On 2011.07.16 20:45
My mother did not have PD, she had cancer that was terminal and inoperable and untreatable, so she was on hospice care for 10 months with me as her full time caregiver. It was a good experience. She never suffered any pain that was not easily managed, they were always there when I needed them, they helped with every day things like bathing and dressing, they were supportive emotionally and spiritually and medically, whatever Mother needed, they got it sent out to her that very day without waiting for doctors to get around to calling you back or waiting in doctor's offices half a day for a rushed visit. The nurses were wonderful and knowledgable and the whole purpose was her comfort and quality of life and also mine. I can't say enough about them. As for a DNR, there had to be one signed for hospice to take over, and my mother gladly signed it.

With my dad, who did die of PD complications (aspiration pneumonia) in 2003, he also had a DNR because he was in very bad shape and was ready to go. In hindsight, I wish I had had the presence of mind back then to get him on hospice in the nursing home where he was living because I think it would've been good for him and all of us who cared about him, but it happened so fast that we didn't know he was that near the end.

In my opinion, there are many things far worse than death, and living on life support with no hope of recovery is one of them. My mom welcomed death and so did my dad, and though I miss them terribly and grieved hard, it was for me, not for them, for I know where they are and they are not suffering. And when it comes my time to go, I hope to have their attitude and faith and accept it. I think in many cases, our medical community has done too much to prolong life in the terminally ill when it would be better to just let them go naturally.

By jockdoc On 2011.07.16 21:24
One more thing. I'm trying to get qualified to volunteer with Hospice. Twice I have been turned down; I'm still too emotional from my loss.(3 Years) Jock Doc

By KD On 2011.07.16 23:01
Dear ILoveWil, I've experienced hospice with my mom and dad. Both of them were diagnosed with PD but they each passed away from cancer. It was not an easy decision to make - I felt like we were somehow "giving up" but in the end I saw that it was the right thing to do. My dad had always expressed that he didn't want any extraordinary means taken but I was put in the position to make the decision in my mom's case. It was one of the hardest things I've ever done.

Both of my parents were at home at the end and the hospice nurse and home health aide came to visit on a regular basis. They were very caring and provided lots of information. I think the scariest part for me was not knowing what to expect. Both of my parents didn't seem to suffer and they each passed away peacefully.

I can also relate to your feelings of dealing with the burden of making all of the decisions. And there were times when I too wondered where God was. My lowest periods were when I was under lots of stress and I hadn't been eating or sleeping much. Please hang in there and take care of yourself.

My family has always been close as well but the stress of my parents' illness tore us apart at times. At one point, I thought I'd never want to see or have anything to do with my brother - and we'd always been close. He said some really cruel things to me but thank goodness we were able to come back together after my mom passed away. (I know she would have wanted us to make up.) I now realize it was the stress and grief that was causing us to say and do things we would normally never do.

I hope I haven't rambled on too long. Take care. My thoughts and prayers are with you.

*JockDoc - I'm glad you've come back to the forum. I hardly ever post but I've always wanted to tell you that your posts about Barb always touched me. My mom has been gone for three years now and I too, am still trying to get over my loss. I hope you're able to become a hospice volunteer when the time is right for you.

By LOHENGR1N On 2011.07.17 00:22
ILoveWil, What a hard place to be in. What hard choices to have thrust upon You. I don't have any advice to give You or any easy answers. I was my Mothers health proxy and She had a DNR (Heart problems) The last time She was in the Hospital She went into Cardiac arrest and they said they tried to call Me but had been given the wrong number when She was admitted so they resuscitated Her, then got the right number and called me. Several hours later again She arrested and passed. (many years ago) I myself have a DNR and no heroic measures.

During these periods we run a gauntlet of emotions and spinning thoughts rush through our heads. I don't have to write them out here as you already have them popping up or in and out of you mind now. I personally haven't dealt with Hospice, but have had friends who have dealt with them and swear by them for care, kindness, compassion and devotion.

Others have touched on or brought up the quality of life issues which need to be considered in this decision and You brought up a PD patient brain wave CT exam to see if the brain is too damaged for them to recover. As present medical technology now stands We don't recover from the damage Parkinson's Disease does to Our brains. Even with the deep brain stimulation procedures, the underlying Disease still progresses, it still continues killing Our dopamine producing cells. We all hope and pray myself included that somehow, someway we'll get better from this disease. We grasp at straws and hang on tight hoping. But We have no cure, we have no recovery from Parkinson's Disease. We can recover from other ailments which plague us along the way but Our Parkinson's no. I hope I haven't depressed anyone reading this but I thought the CT exam to see if the brain was too damaged to recover might need to be addressed. Please know that Our thoughts and prayers are with You as You wrestle with the hard decisions You are faced with. Sincerely Al.

By poppadum On 2011.07.17 03:49
Dear ILoveWil, when we're all stressed out by situations like yours (ours), right at the time that we should all stand together, we tend to fly off the handle as a reaction to the feeling that we aren't coping. Often things are then said that we don't really mean or we express them in too harsh and exaggerated a way as a reaction to situations we feel are getting out of hand, our own hand.
In Flemish (sort of Dutch) we say "Soup is not eaten as hot as it is served", meaning that we have to wait and let things cool down a bit before we react. Not always easy!

30 years ago my father who was a heart patient and was 57, was resuscitated several times. After the last time he said "You should have left me there. It is good there."
The identical thing happened with his father who was also a heart patient. He too said "It is good there".
While writing this I still feel guilty for having pushed the medical staff to resuscitate Dad. Mum too pushed and pushed. We wanted him with us as long as possible. On hindsight and after a lot of thinking, both my mother and I realized that we were selfish. We let Dad suffer longer because we couldn't let go.
Mum who is now 91 asked me to let her go when here time comes. She wants "no machinery". After a talk with her she has agreed to allowing anything that makes it easier, should she be in distress, as long as it doesn't extend her life.

My husband who has PD is not ready to talk about it yet. He's still capable and eager to help other Parkies and this goal keeps him fighting all the symptoms he battles with. Should his time be up prior to mine, I'll have to love him enough to let him go. I don't want him to suffer any longer just because I cannot bear the thought of being without him.

And yes, I too have hoped on several occasions to "wake up dead" because I felt (and often still feel) so overwhelmed by all the problems thrust on me. I have to keep reminding myself though that it is not up to me to decide. As long as I'm here the Lord has something in mind for me. Unfortunately there are times when I forget about that and I sort of "implode" with self pity. At that point I just want to hide in a dark hole and cry my eyes out, never to surface again, until my whirling thoughts finally reach the point where I realize that hiding and crying is not going to help. I must admit that, having cried (uncontrollably) for a while, it makes me feel "cleaner" in my head.

To remind myself I have stuck notes on the inside of several cupboard/wardrobe doors, saying: "What doesn't kill you makes you stronger" and "love is unselfish" because it is so easy to forget at times when you don't know if you're coming or going.

You have been on in my thoughts a lot. I've been trying to imagine how you feel and what you're going through. I pray that you may be strong and have enough courage to cope.
Big hug.

By karolinakitty On 2011.07.17 08:11
Dear ILoveWil, With my guy being so young, 54, and the fact that his PD is pretty progressed, we have had this discussion many times. DNR, feeding tubes all the like. If he is still in his "right mind" he wants feeding tubes and whatever it takes. If his quality of life won't be there he wants the DNR, no machines and no feeding tube. This is clear to me. It's a hard decision to make, but with his dementia present already we know what the future may hold. My thoughts are with you.

As far as the family issues....ours was a very dysfunctional one...seemed somebody was always mad at somebody and it always lasted for seemed they were "go backers"....go back and remember the time she took my doll, my toy, didn't pay me that $10.....some people live in the past, and always go back to that one time that sticks in their mind. Others seem to wander back in life when it seems death is present. I think you need to just remember Wil for whom you seem him as and others comments and memories need to be put on the back page and forgotten. Nobody is perfect, or we all would be Jesus.... Even their thoughts and bad memories are what they see in their eyes and not always the way it was. Deep down he may be struggling with his own mortality as this too can bring out the bad thoughts in folks....

Again our prayers are with you......

By caregivermary On 2011.07.17 12:11

It is possible Wil has already made the decision to go on his journey. Hospice will help you find this out. They understand the journey better than anyone else. Hospice can actually help someone who hasn't started their journey to recover somewhat. I highly encourage you to request their help.

However, I don't recommend the CT scan, feeding tube, or the breathing assistance for the same reason lowg mentioned regarding the PD brain damage. Also, Hospice will answer your questions regarding these items and I strongly believe you will be able to make a decision you can live with. You can talk with hospice representatives and not hire them for services.

Yesterday, I thought about posting a message to you about your regrets. I bet you have done a lot for your husband over the years and most recently with the dx of PD. Please do not underestimate your love or your compassion-you would not be seeking help now if your were not a compassionate and loving person. Life is short and we all forget everyday should be special. Focus on the things you were able to do for and with your husband and continue to talk to him. Everything I read states that people in a coma can hear. Read, sing , and talk to him.

I will be thinking of you both. Take care.

By janol On 2011.07.17 15:30
Dearest I LOVE Wil,

I had to sign a DNR for my Father. He was in Hospice at home, had lung Cancer. The Hospice people were wonderful.
I was in the hospital room with my Mom when she passed, with 3 nurses at her side. They began to call a "code blue" when I had to tell them no. Mom had a DNR also.

I have NEVER regretted letting them go. They were ill, but had made their decisions and made me aware of them.
I wish everyone would do that !!

Is there any way that you recall Wil telling you of his wishes? Did he ever mention other people, or what other friends thought?

My heart goes out to you, especially with the family problems. They are devastating--- I know ! But things should go back to normal eventually.

My thoughts and prayers and blessings go with you on this journey. Courage and strength, my friend !

By monopoly17 On 2011.07.19 19:01
My husband has PD and dementia. He is at home,for now. It's getting worse everyday. My kids love us and want to be supportive but I think it's really hard to see a man who was very strong to be as weak as he is now. I don't see some of them very much.I'm also disables and have a very hard time taking care of him.He has signed a DNR. We both feel his quality of life is not good and when The Lord takes him home we'll let him go.Don't know if this helps.....I'll pray for both of us.

By ILoveWil On 2011.07.20 15:22
Hello to all of you who have become my dear friends and counsel of Advisors in this path of PD. I have come home from the hospital for a few hours to freshen up and feel a touch of home again. I am with my dear Wil everyday and all night with only a little break to eat something. But yesterday they gave him the surgery of feeding tube in his stomach and today at 4:00pm he will get his first food in 48 hrs thru this tube. We are hoping it will work well. I will continue to try to give him his favorite chocolate ice cream and will hope his tongue can remember how to function and he can swallow. The Rehab Center where Wil was says he is too ill for them to accept him and we are looking for other interium options like Select Services in Knoxville. He is too ill to bring him home too but this is my ultimate goal to let him watch the sunset from our log home porch and feel the gentle mountain breeze with me again.

Last night his I was awakened my chair by his labored breathing. It scared me so I prayed each time for him. This morning it seems easier to breathe. The Lord must get tired of me coming to Him with such desperation pleas.

On my way home I stopped to get gas in my empty tank and on the cement walking in front of me was a little wren. I was touched at seeing this little tiny bird all by itself and I remembered the Scripture saying that if He cares so much for the little sparrow, how much more He cares for me. Then it came to me ...that beautiful song that Ethel Waters sang at the Billy Graham televised crusade in Alabama when I sang for him, "His eye is on the sparrow and I know He watches over me." I was sitting there in my buckskin dress and feathers on the platform in the stadium beside her and Bev Shea, when she said to me "Now honey don't you be scared now, you don't think about yourself, you think about the Lord and you're gonna do alright." It lifted my spirit just to remember this today. We sometimes are so engulfed in our fear, our self pity, or our deep sadness and depression that we forget to keep our eyes on the Lord and just do what we need to do...with all our heart for the one we love...and don't complain. Just keep on keeping on.....

I am so blessed today reading all of your responses and advice to me. I really have appreciated your telling me if your loved one and experiences with them in these difficult situations. Thank you for sharing with me about your hospice experience. It has really helped me not to feel guilty for admitting that I need their help. I cannot thank you enough.

When you have said your heart is with me and you send hugs to me....I really do feel them and you make my heart feel glad again, even for the moment. Thank you all so much. I do count on you.

By arlenecram On 2011.07.20 23:04
I Love Wil --I just went through all this last week. My husband had fallen and developed a brain bleed. He was in SCU in the hospital for two weeks and I was told he would have to have a feeding tube. With the tube---they still gave him 3-6 months. He also had pneumonia and blood clots in both lungs. The Dr said that the brain bleed had compromised his brain. I have 4 grown children and we all met and decided to bring him home and let him die at home. I had hospice come in, but he only lived through the night. That was the hardest decision I have ever made---and I still ask myself if I did the right thing. There will be many lonely times ahead---but my husband is finally free from pain and with his Lord!

By kennyb1043 On 2011.07.25 14:43
I Love Wil, I realize you are in a tough situation and wish there was something I could say to ease your pain. With that said my wife was a hospice nurse for many years. I remember her talking about her paitents on many occasions. Ann really enjoyed being a hospice nurse and working with the families of those needing her services. She was a huge proponent for those in the process of passing. She worked to make sure pain was managed, the patient and family were treated with the utmost respect/dignity and she was huge on quality of life. We have had many conversations concerning those very issues and she believed in DNR orders for those very reasons. Hope this helps. you are in the thoughts and prayers of many.

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