With a heavy heart I post this today. Dh Reno has not eaten anything more than a couple of spoonful's of pureed food in the last 4 days. I have tried to get him to eat and drink something, but he won't even open his mouth for me. He weighs less than 50 kilos now He's been very sleepy for days now. Yesterday he slept all day. DD and I went in around 11am he had been sponged over, dressed and in bed with a winter duvet over him....it's summer here, his room with the door closed, only has a ceiling fan, just the corridor and main open rooms have air-con. He was sweating to the point he and his clothes were wet and he was hot...what's wrong with these cares. They work in the air-con, so cold at times, I take a jacket in with me, but the rooms are hot! They said he had not eaten breakfast, because they couldn't get him to stay awake. I asked a carer what will happen now if he doesn't want to eat...she said, "it depends on what I want to do". Tube / force feed or let him go....so matter of fact in her manner!
I hardly ever see his Dr...he comes in when ever....I'm hoping to see him on Wednesday. The family have had a meeting , we are devastated by this lasted decline....there's just no quality of life left for him now....no response to our efforts to communicate with him. We think it might be time to let him go, end the suffering....they support me all the way, but the final decision is up to me.
I just had to share this with you here....you understand.
So very sad for you Julia, this is so difficult for you and your family. Can you contact palliative care? Perhaps they would come to the nursing home to supervise Renos care for you? I am not sure if they do but it might be worth a phone call. Sending you wishes for strength and courage to see you through yet another heartbreaking time. Love,Cassie.
Cassie, I was hoping you were online. They do palliative care there, they have some nurses that are trained for that. My son and I are going in later today to talk with them and see how he is today.
I can see he has had enough, there's nothing there now, no will to go on, his broken body and the sad look on his face says it all. I find it hard to express my feelings, but I know you all understand how hard it is going down this journey that has only one ending. Thank you
I am sure you know what is the right thing to do even if you heart doesn't agree. None of our spouses want to be on feeding tubes - I know I would not. Prayers for peace with the decisions you are having to make.
Dearest Julia, I am so very very sorry to read of Reno's decline. My heart aches for you ((Hugs)) We should never be faced with these decisions, but then again, only we can make them. We are the only ones who know our loved ones well enough. We know when there is still light in their eyes, when there is quality left, when we just have to keep fighting for them. I believe we also know when it is time to hold them lovingly as we let them go.
Trust your instincts Julia and remember, whatever you do it will be done in love, and that is always the right thing.
Please do consider calling social services and taking them up on whatever help they have to offer you. There is simply no excuse for him being that hot and uncomfortable and I can well imagine how angry and upset this is making you. The very last thing you need right now is to be dealing with idiots with no common sense or compassion! An extra set of eyes to keep and eye on him would be a good thing.
Have you called his doctor? He should be available to talk with you! I will give him a ring if you give me his number..... you have my email Julia, please feel free to write me any time. I wish there was something, anything, I could do to help ease your heartache. I am so very sorry.... ((more hugs))
Charlotte, thank you, I know in my heart he would not want to be tube fed.
Nikki, thank you. His Dr is the Nh Dr...Just comes in once a week when ever, no set time or day. Thank you so much for offering to call him...OMG imagine if you called, what a shock he would get to get a call from the states...I'll have to deal with it. Our son is coming with me today see what we can do about it. thank you so much for your caring and compassion.
I keep thinking he would be saying to me..."if you love me let me go". He would hate being as he is right now. I know it's a roller coaster journey and they can bounce back for a bit longer, but I can't see it this time, it's like he has given up.
Whatever you do from now on Julia, will be the right thing because it is only about love and that will make all your decisions easier. I know that I didn't want my husband to die but I loved him too much to want him to stay and suffer, knowing also that he wouldn't want this life, with no quality and even more pain ahead. Stay close to your family and keep talking to them Julia. We will all be here, watching and waiting with you as well.
That's exactly how I feel Cassie. If there was any hope that he would get better, I would do everything in power to help him. He's been there for us, 52 years, always put me and the kids first...I think the next few days will be the hardest I'll ever have to face. Thank you
Julia, (this is so hard for me to write)... When there has been a great love such as you have with your Reno, and I have with my Lynn.....I believe with all that I am that we will instinctively know when it is time to let them go. Just as we instinctively knew when we had to keep fighting for them. It doesn't matter what anyone says, not friends or family or even doctors... the only thing that matters is what you feel in your heart. There is a reason you have those feelings, trust them and follow them.
I can tell from your comments that you do believe it is time to let him go. You have been a fierce advocate for your beloved Reno! You did your absolute best for him. He knows this too ♥
I will be keeping you, Reno and your family deep in my heart and prayers. Much love my friend ((hugs))
from what I have read and heard a feeding tube will not prolong his life and lower his quality of life. Hydration via IV can also lower the quality of life, as a person dies chemicals are release in the body that provide comfort, hydration goes against that process.
Your family sounds supportive and leaving the final decision to you on what action to take.
Julia, I was in the same place as you are a month ago. When he stopped eating pureed food and didn't take any liquids (only 2 days before he passed); I held him and told him he could go, that I would be alright, that I loved him and always would, but it was time for us both to be released. Each time I said this to him he seemed to relax a little, as his breathing became more shallow. The last time I said it to him he smiled a little, squeezed my hand - and let go. It was a peaceful moment for both of us. Yes, it broke my heart - but now he is free and no more pain.
Thanks, Nikki. It is all about the love as you so very well know. I actually fed my dh by tube for a long time as his diaphragm muscles had weakened due to ALS (motor neurone disease) and it was all good but when he stopped smiling then I knew it was all over and from then on the choices were easy ( no, not easy but clear.) Sadly, Julia's Reno is no longer smiling but I often read that your Lynn is laughing!
cassie said everything. If I face this I will not continue her decline by artificial means where there is no hope of recovery and certainty of further decay. It's very hard.
Oh Julia, my heart hurts that you are going through this. Like everyone else says, you will know what to do when the time comes. My sweet DH isn't quite where yours is, he is still eating. But I can see him slipping away a little bit more each day & I fear that soon I will be making the same decisions that you are. You will be in my thoughts & prayers, Dear Friend.
Julia, This is indeed a stressful and sad time. When my mother came to this end stage, the subjects you mention came up. My dad was a surgeon so he knew well the risks of feeding tubes. My mom's wishes were that this not be done. Both my parents made it clear well before either became ill with what they would and would not want. Presuming your Reno made some comments over the years about what he would want or would not want, that should be of help and comfort as you go forward. The sad truth is feeding tubes will prolong this state in life where there is no hope of cure. I really think your loving heart knows what your dear husband would want and trusts that you will support him in his wishes no matter how difficult it is. You have done a wonderful thing in the way you have cared for your husband. It is a hard hard road no matter what. I wish you peace in making your decisions in the days ahead.
Even though I knew for sure what my dh wishes were it was like a brick in my middle when I told the doctor I would just bring dh home and call hospice. It is never easy, never but I know that it was exactly what my proud husband would have wanted. Julia, so many here really do understand. My prayers for you and your family.
Julia, The last two weeks with DH started like this. All I could do was offer the water. He would turn his head when he had enough. And then after a few days he started chocking on the water. I knew then that I had to stop. I would just moisten a washcloth and put it to his lips. It was the hardest two weeks of my life. But I feel I did the best I could. I did it all with love in my heart for him. I am praying for strength for you.
Julia, my heart grieves with you. You know what the answer is. Letting him go with peace and dignity is your greatest gift of love. As you said, "if you love me, let me go" I am praying for you and Reno for peace and comfort.
Julia, you will know when the time is right for your dear husband. I think its an inner voice that speaks to us. like Nikki says, we know when to advocate and we will know when its time to release, both them and us. wishing you all the best in this loving decision as it will be you who advocates for his best interest one last time. hugs.. divvi
Hi everyone, thank you so much for your love and support. this is so hard, I don't know where to start. We are right into palliative care now, fourth day, no food or fluids. Reno is on morphine, 10 ml 2 hourly. he just seems to be hanging on by a thread. Family are here with me, son who found it hard to come visit has been here all day. Today I had all our 3 kids with us, it was just so precious to be back together as a family reminiscing about how dad taught them life lessons, about the happy days. we are sleeping by his bedside for as long as it takes. I'm sure he knows we are here, every now and then he opens his eyes slightly. He is very calm and peacefull. I have been telling him it Ok, he can go now and see his Mum and dad...The kids will look after me. We don't know how much longer he will go for. Thank you for your prayers and love.
Oh Julia, I know this has to be so difficult for you & your children. Even though we all know the outcome, I'm sure it doesn't seem real until the end is near. You & your family will be in my thoghts & prayers & I also pray for peace & strength for you. (((HUGS)))
Julia, this is indeed the most difficult part of our journey as caregivers to our spouses. I pray for you and your family to have the strength you will need. I am glad you are all together...may you all have peace.
Dear Julia, please pace yourself as you go through this part of the journey. With your family there, I hope you will make sure that you get enough rest and good, nourishing food. Sending you love and prayers. Hugs.
Oh, Julia, if the smiles are gone; it is time. I know how hard it is. There is nothing I ever did in my life that was any harder than letting Lloyd go. It was best for him. I insisted on the least medication possible. I never allowed him to be artificially fed. I just kept the inside of his mouth moist and made sure to move him around. I told Lloyd it was ok to go, too. Spend as much time as you can with him. Get all the touches and kisses you need and store them away in your memory.
Just a quick post to let you know, Reno passed away peacefully with dignity at 1.15am, 1.3.2014. Family all by his side. Sorry I just can't think straight at the moment to write.
My heartfelt appreciation for your love and compassion . Thank you for being here for me. I'll write again later...
I am so sorry, Julia. You did what you set out to do, you gave your dear Reno a dignified and easy death with those who loved him by his side. May that give you comfort in the sad days ahead.
Julia, I am so very, very sorry. Tears are just streaming down my face as I try to write this. I know how deeply you love Reno, such a precious last gift you were able to give him. Keeping you deep in my heart, thoughts and prayers. Much love my friend ((tight hugs))
Oh Julia, my heart hurts for you. Reno is now at peace & it was good that you were all there. My thoughts and prayers are with you and your family. (HUGS)