i need help,advice or whatever you all can offer. it is really been bad here. hospice has come and they have been very supportive and helpful. my dh had a uti? i didn't want him to go to hospital so it was treated at hope with antibotics. he can not urniate now. he had to have a cath inserted,but the nurse took it out hoping he would then be able to go on his on,no such luck,24 hrs later nurse is back to cath him again,this one has to stay in awhile. i am trying to get him to drink as much liquid as i can but it must not be enough,because now his urine is cola colored and very little of it.nurse said he did have an enlarged prostate,she could tell when she inserted the cath. dr started flomax,thinking it possibly might help him to start urinating on his on after several days. i'm thinking that is probably not going to happen. he is barely eating. i have him on boost and ensure. he drinks those okay,he seems to like them,but i have to keep waking him to get him to drink more. he forgets how to suck on a straw and will just try to chew on it. i have to remind him to drink,sometimes it takes a long time and sometimes he just does not finish his drinks.he falls,quivers and shakes,won't stay seated until he is utterly exhausted. as soon as i get him up or seat him on the couch,he's back up to fall,run into something,or just stand still until he will fall,some days he will set and sleep more,i think it is he has just worn himself out. he is somewhere in stage 7. i don't know where,though. he is 53 yrs old with eoad and parkinsons. have any of you experience the dark brown urine from your lo? the nurse said he was probably dehydrating. i pulled on his skin and it laid back down fast. i need the truth from you all,i know it is different for everybody,but i need to know what you all think about how much time we have left.so many of you have been through this and i know you probably think i am crazy and silly to ask such a question from you all,but i know it is getting closer to the end for him and i am trying to hold up and get final dignified arrangements made ahead of time,but it is so hard to do,and i cry so much,i know i has to be done and i want things done right,but i physically ache from the grief and heartache. he has gone downhill so fast and lost weight. please give me some of your guidence. the 1st time the hospice nurse came she said she didn't think it would be very long. i didn't question,how long was she talking about. i know no one can give a real answer to that question,i know it is in god's hands. i guess i am just.... i don't know,searching for something. god bless you all, jav
Oh jav, I am so sorry! I understand the end of the journey is hard prepare for when our LO's are so young. As far as the urine, sounds to me as if he still has a UTI. But please understand I am no medical professional. Just seems like thats about what color my FIL as well as my Dad's urine when they had UTI"s. Honey as far as how much time you have left, that's between him and God. You never know he may bounce back for a few days, weeks or months but then maybe not.
Your not being silly, your not being crazy, your being a loving wife concerned for your LO. The only truth I can offer is that I know you really don't want him to suffer in pain, I can tell by your post that you love him with all your heart and that you will miss him and that your holding out for hope which is understandable but I have to ask, Have you been able to say goodbye? We never know when our LO"s will leave us, but I think being able to say goodbye lets them know that it's ok not to suffer anymore for us. Next please take care of yourself. Sending lot's of thoughts and prayers. Rk
jav, do you have family and friends that can be with you during this time? Not only will they be a comfort for him but it would help you to have other loved ones around. I know that people can't be there 24/7 when the journey may be days, weeks, months down the road, but during times like these having people around who love him and you would be a great comfort. You have been Wonder Women long enough, now it's time to call on support of others to help you both thru this. I wish I could be more help, but as you said it's different for all journeys and we truly don't know. T and P's Rk
jav, you described my mother perfectly in her final days last year. She had the deep colored urine that smelled so bad. quit eating and slept most of the time. We kept giving her pain medication and she said she didn't hurt. She was just wanting to leave this world and go on to her other new world. I stopped all meds except for pain and anxiety. It may take 12 days after he stops eating. Go ahead and mourn his passing while you are there with him. Gather up his buriel clothes and funeral arrangement items so you don't have everything to do at the last minute. I have my husband and my obituaries already basically written as did I have my Moms.
When my husband has his UTI, his urine is always dark brown. The doctors put him on IV Saline with IV antibiotics and it usually clears up in three days. We've had this about 4 times in the past 2 1/2 years. The main thing is to get fluids in him...can you get an in home nurse that can hook up the IV for you. Changing the bag is easy, you can do that after they show you how..but they will probably send a nurse to check on it and flush the line every day. Same for the antiobiotics that are injected into the IV line. The only thing that will cure this is pushing liquids and antiobiotics. Insist on those saline IV's, it will make such a difference...and quickly. That can be done at home...as I said. It was not a sign of pending death in our case (x 4)..it was that AD patients refuse liquids and my husband is the worst of them all. If I can get him to drink 12 ounces a day, I want to celebrate.
Some drugs are more effective when given by IV. When my diverticulitis kicks in, there is no way that my cipro and flagyl will work when taken orally. I've tried several times. I know the difference it makes to bite the bullet, check into the hospital for 72 hours and let the drugs go in through the bloodstream. So much more effective... Same with that UTI because you cannot begin to get him to drink enough fluid to operate his organs AND pee .... All your doctor needs to do is order home IV therapy and it will be in place by noon tomorrow.
Stay strong and you'll be ok. You cannot see us, but we all standing right there beside you...in spirit. That's what we do best. Nancy
Please feel my arms around you during this most difficult time. I cannot imagine what you are going thru, but I'm sitting here crying with you. Your husband is a lucky man to have a devoted wife. Please remember to take care of yourself, sleep when he sleeps and get plenty of nourishment. Please keep us informed as to how you BOTH are doing. Arms around, Susan L
jav. we suffer cronic uti and DH is on daily antibiotics to try to stem the occurences. sometimes it works other times not. at your request i will tell it as i see it, as usual, no sugarcoating-if i were in your spot i would like some honest input-i am not a dr of course but have gone thru countess uti and drama in reference to uti. if your DH is not drinking enough fluids he is dehydrating. the dark brown colored urine is not a good sign. it could mean he is still with uti, but more than likely the infection may have spread to his kidneys and or the passage tubes to them. nancy is right, if you intend to fight the infection then i would take him to the hospital, he sounds like he needs more than you can give him at home, if your intention is to just ease his pain and have hospice to the end then giving IV drips may or maynot be a good idea-your dr should be advised and his input can help you decide if its for comfort now. my son is a dr and i defer to him alot for private info many times during the days my Dh has been ill. he told me s that the shaking that accompanies the uti means fever and severe infection and the more than likely scenario the kidneys are involved. the dark colored urine can mean also that blood is mixed with the urine-either way not at all good. if he is not hydrated enough he will not have urinary output and then the kidneys will be shutting down. this is life threatening of course-if you intend to let him go and no hospital intervention then just make sure hospice is on board with a dr that can give him what he needs to make him comfortable. its so very difficult to be the one making the life/death decisions at this point -my prayers are with you and him, jav. divvi
jav, dear, I am so very, very sorry for what you are going through. It was pain beyond words to watch my young husband die of cancer.
There is no way to know exactly how near the end is, but it appears that his body is shutting down. Dark brown urine can be a sign of liver dysfunction (bile gets into the urine). It is also characteristic of blood in the urine, due to a urinary tract disorder (e.g., bladder stones or kidney infection) or kidney failure.
It is not a good idea to force fluids if the body is starting to shut down. It can create an uncomfortable buildup of fluid in the body, creating pressure and pain; fluid in the lungs making breathing difficult; and fluid in the throat making suctioning necessary.
Since your husband is taking the Boost and Ensure, and your skin test indicates he's not very dehydrated, he is probably getting enough fluids.
If he does become dehydrated, it isn't particularly uncomfortable. The only unpleasant symptoms are a dry mouth and a sense of thirst, both of which can be alleviated with good mouth care and ice chips or sips of water (or dripping a little bit of water into his mouth). So talk with hospice about how to take care of his mouth -- there are some things you can swab his mouth with, I don't remember the details but the nurse will know.
dear jav, ever since I read your post several hours ago I have been trying to think how to articulate what I wanted to say. I just read Sandi's comment to FayeBay on another thread, and it struck me as very likely being appropriate to your very difficult situation, so I've copied it here. I'm not walking in your shoes, but I find myself wondering about the value/purpose of efforts to extend the life of a loved one in stage 7 AD. My heart aches for you, friend.
CommentAuthorSandi CommentTime2 hours ago edited
FayeBay, my husband died at home last year after contracting pneumonia and not eating or drinking for well over a week. To me it was the humane thing to do...he never would have wanted to exist for five years in a fetal position in a hospital bed. In the early stages of his illness he asked me many times to please kill him...he didn't want to live with what was happening to him. If I had the means, I am not sure I wouldn't have opted to humanely end his suffering. I would never allow one of my cats to suffer like my husband did.
If your husband is truly at the end of his life and refusing to eat, have hospice come in to help you take care of him and help you make the decisions. They are a wonderful help and you would know that you are doing the right things.
Tube feeding and force feeding....pumping antibiotics into a dying body....to me these things are torture to a dying soul. There are worse things than death...I do believe end stage Alzheimer's Disease is one of them.
My husband died peacefully, I have the joy of knowing that I made the decisions that I know he would have made for himself.
I agree w/much of what has been written. Please feel that I send you my comfort and support. Whether we want to or not, we all come to the conclusion that we must accept parting with our loved ones, there is no alterative. Think of what you would want for yourself in his place, make things as easy as possible. We can only fight nature for so long, she will have the last word, so give him and yourself comfort and peace. Those of us who have been thru it are standing with you, accept our guidance even tho we understand it is not exactly what you want.
i so appreciate all of the support ,advice and words of comfort from you all. my dh would not want to go on the way he is now. i know that and our children know it too. i along with the support of hospice,will give him all the comfort care i can give. no iv fluids,no heroic measures to keep him here on this earth ,because i am afraid to let him go. it does not make it easy,but he and i talked about life and death years ago and we told each other if anything ever happened to either of us and there was no hope of getting well,the surviver was to make sure not to keep the other alive,just for the sake of a heartbeat or breathing body. there is much more to life than that. my wonderful, vibrant,smiling,joyful,loving,dancing,hugging,kissing,hard working,honest,devoted,precious husband,father to my children,grandfather to my grandbabies, is already gone,only a broken and deteriorating body remains. i will care for him until his last breath on this earth. i will lay down beside him for the last time and think of our lives together and grieve and say goodbye,before i call our children to come see him for the last time. i think it is important for us to each and all to have our time with him. i have thought about it. there are worse things than death and i will not prolong his suffering. nature will take its course. i will leave him in the good lords hands. i don't won't him to go through this torture any longer than he has to. i will not add to this. the hospice nurse did say his kidneys may be shutting down. his urine is somewhat lighter color today. i don't know weather to be happy about that or not. one minute i'm happy that his urine is lighter color,thinking that is a good sign,and the next minute i realize,there are no good signs anymore,that's a thing of the past,and i am so very sad. how do you handle this long constant dying? jav
Dearest jav: Your last post is very telling, you seem to be more at peace. I, too, laid down w/my DH before he left, I held him, took in his smell, felt his heartbeat. He, too, was a man like yours, altho maybe not the dancing part, but such a decent person. We had also talked about what we'd want and agreed no heroic treatments, it had been written down and it was such a comfort for me to know that I did not have to make those decisions. You are doing a loving thing for him.
Jav, I agree with everyone, and as bluedaze suggested, a tribute as beautiful as the one above, should be shared with our family, when you are ready. Know that we are all sending you love and strength as you enter this next challenge.
i wanted to update you all. i didn't know whether to start a new post or just add to this one. our son and i weight dh today. he is down to 132 lbs. the hospice nurse comes tomorrow. she called today and asked about leaving the cath in. if she takes it out and he can't urniate on his on it will have to go back in. i hate to do that to him. she suggests leaving it in. his cheeks are getting sunken in now. should i tell you all,all of this stuff? i don't know. i am so very lonely. i can't talk to my kids about alot of this because they get so upset. my oldest daughter is having panic attacks. i don't want to tell them more than they need or want to know. i feel like dh and i are on a deserted island,surrounded by life,way out in the distance. we are on this island that no one else knows about,and life is just passing us by,leaving us stranded and me so lonely ,heartbroken,and sad.
jav, I am so sorry you are having to go through this. You can vent all you want on this site. We are here to listen and send you cyber husgs. It sounds like his body is shutting down. I am not there to know the situation but from a distance I think it would be best to leave the cath in. Maybe you could ask the nurse what she would do. I had a cath for my Mom her last 2 weeks and it was much easier on both of us. God Bless and keep posting.
Jav, although we all hope we can let our spouses die at home, I'm wondering if maybe he should go to the hospital, to make it perhaps easier on the kids. I forget how old they are. Ask hospice about that too.
Oh Jav, how my heart breaks for you, breathe sweetie, just take it one minute at a time. I'm here, we are all here for you. Let the kids ask questions as they are ready, how old are they? Try talking quietly to him about happy memories, fun times, vacations. Read to him, that helped me when I was alone with my fil at the end of his life here on earth. Just do comforting things. Put lotion on him, comb his hair, play soft music, light a scented candle. Just make your enviornment comfortable for the two of you. Please keep posting, we will be here for you, as you have been for us.
jav, It's such a painful thing to watch, my heart goes out to you. I am sorry your kids are having such a hard time. I don't know how old your kids are and I am sure it's not helping you during all of this. But there is several books that may help your daughter cope with the loss. If you would like the book names email me.............. my email address is in my profile.
Hope your getting some rest. Hopefully while the hospice help is visiting your able to at least walk outside and get a breath of fresh air. Hang in there. Rk
oh god, i don't know what i would do without you all. our children are grown.oldest daughter 31,married with 5 yr old daughter, our son is 28 with a 4 yr old son,our youngest daughter is 25. they are all grown but for the grandbabies,but they hurt so bad. the babies know papa is not going to get well. i have told them that and so have their parents. i hurt so bad,sometimes i just think i can'r hurt any worse,but i know i will,the worst is yet to come. i will keep him at home. it is what he would want. i want to be with him when his spirit leaves his body and soars in boundless glee above us. i want his spirit to see and feel the undieing love i feel for him and always will. we will stay at home till the end. when it is over i will lay his body to rest on our farm,as he wanted ,where he always worked so hard and can finally rest in peace.
Oh, then I agree you should keep him at home. He's only 53; my son at 50 has a 9 year old. I wouldn't want to put her through all those experiences at her age.
Jav - I know how hard this is. My children were also adults & while we want to share our emotions, we know that they have theirs, too. But you have each other, they are staying close, you are blessed. Out g'sons were just leaving their teens and completely aware of what was happening. They, too had their personal sorrows. Keeping him home is best if at all possible. We're with you.
Jav, another thought, read some of our silly jokes to him, it will lighten the mood for you. Even if he doesn't understand doing all these little things will make you feel better and he will sense that. Arms around
Dearest jav, you can tell us anything you want to. We will listen, we do care.
When my first husband was dying, my world narrowed down to just the two of us and just the room he was in. It was like living in a bubble, that nobody else and nothing else could penetrate. Time stopped having any meaning. Just like your deserted island.
Focus on showing your love to your husband, do as Susan says. You will make it through, really you will.