let us know if the scales are tipping in our favor??? great news. and give him the 5lb bag of PB candy to hold when he gets on the scale.? just in case! divvi
well today i broke diet -i ate choc all afternoon so i know how Lynn feels with PB cups! shanteuse,somedays you just have to eat chocolate and not watch! divvi
Great news! Three weeks ago he was down to 95, I got him up to 97.
He started the megace last Friday night, Weighed in today at 101!! So in one week he gained 4 pounds!! Thanking God. :)
The doctor warned that he will not continue to gain at this rate. That he will most likely stop gaining at all. But that it should help him maintain his current weight. I'll take it!! :)
I am so relieved, *Whew. Thank you all for helping me, for listening to me, and for giving me a safe place I could come share and fall apart.
Thank you vickie and divvi ((hugs)) You know I feel like a damn fool...sitting here crying! I didn't cry once when I was so afraid, but now that I know he is going to be ok, can't seem to stop these stupid tears. Go figure.
We have come a long way baby!! Lynn is doing fantastic!! I had to have surgery and I couldn't see him for 6 days, 6 days!!!!! And he did wonderful without me. He eats on his own now and .... drumroll please.. Is back up to 115 pounds!!!
He is truly going to be ok. He is happy, he is peaceful, he is where he needs to be..and I just can't express how much peace I have in my heart now. He thinks he is home there. He is declining in memory and doesn't know if I was there 2 minutes ago, or 6 days ago. I was sooooo afraid he would forget me if I didn't go every day. But when I went in to see him today, it was like I had just been there yesterday. They said when he asked for me they told him I had just left. Bless their hearts.
I did try calling him on the phone, but the poor bugger.. he kept saying Nikki? Nikki?!! why are you inside this thing? Come on out!!! And then he got upset and starting telling people his wife was stuck inside the phone! awwwwwwwwww So, yeah.. I stopped calling lol
Megace, our miracle drug.. whew! What a long hard road this has been!
Nikki, that's wonderful news and I know you are much more at peace now that you've seen he is doing well where he is. I hope you're well on the road to recovery after your surgery and are going to start taking some time for yourself. You're entitled to some fun.
Nikki it is good news to hear Lynn is thriving and doing so well. disappointing to hear you had to cancel your cruise. of course your health comes first. good to hear you are in recovery and doing well! divvi
Thanks guys <3 I have said all along, if Lynn is ok.. I'm ok.
I dont want to get into to too much detail on an open forum, but this was just a pre-surgery to test for more upcoming surgeries. I WILL be ok, it is just that between the recovery time and the type of surgeries I am having my doctor is adamant that I had to cancel the cruise. Big "ol meanie! lol
and, here we are again. Lynn's eating has been my biggest concern for years now.... each time I am faced with the dilemma of a feeding tube, he has rebounded. He is getting over a nasty cold/flu, it is clear he is rebounding wonderfully, but for some reason doesn't want to eat. Oh Lord, here we go again. I can't even count the number of times I have been faced with the tough decision of a feeding tube. I torment myself and just when I get to an answer, which is usually yes, Lynn rebounds and starts eating. Twice this was due to appetite stimulants, and the other times it was because he was sick and simply started feeling better.
This time is a bit different, because he is now so aware and doing well. He has rebounded back to laughing and talking up a storm, but he just doesn't want to eat much. He drinks wonderfully though. He will take the cup of his table and drink by himself, so it isn't that he doesn't want nourishment. But for the last few days as soon as I put the spoon near his mouth, he backed his head away and tightened up his lips. *sigh* It is soooo hard when he can't tell me why!!!
Does his mouth hurt? Is he drawing back because his vision is screwy? Does he not like the thickness of texture of the food? Lord the mind goes on and on......... I have said it before and I will say it again, this is the most difficult part of journey...... knowing he needs to eat, but not knowing why he wont. It is so frigging hard! He has been evaluated, and he is not having trouble with his swallowing. He is not aspirating or anything like that either.
He has lost 7 pounds, weight he can’t afford to lose! But is still taking in a lot of nutritional drinks. He likes the drinks, wants them, and even asks for them. Last week his doctor told me Lynn is NOT actively dying, he is just down from the cold/flu. This morning the same doctor asked me if I was considering a feeding tube. OH God!! Don't make me go through this again....... I was in tears all morning. His doctor feels his quality of life is still enough that it should be considered. He said a death by starvation now would be a long drawn out one because his body is not ready............... Well hell, what kind of a choice is that!!
I watched my uncle die from starvation, it was horrible. I know, I know, they say it is painless, but how much of that is due to the morphine? And I know, I know, they say it usually goes quickly, but that wasn't the case for my uncle.... and it was hard to witness. It still troubles my soul... and I just know I can't live with that memory of Lynn.
At lunch today, Lynn decided to shock us all and ate pretty much 100% of his meal!!! I was so happy and relieved, you just can't imagine. But, for how long? Tonight he only ate 25% of his supper, but did drink. All I can do now is continue to pray that this is just due to his recent illness and that he will start eating again.
nikki i can understand the dilemma . we have days here in these end stages with some very hard choices. i agree its probably from the illness and his body is still adjusting to the infections. i see it here too. just a small not- feeling -well can bring them down so very quickly and the recoup takes a while. i say give it some time and keep giving the nutrition via drinks and see where he responds . you went thru this before i think when he had pneumonia. in his own time he may make a recovery to where he was. its so very hard but in my own mind i have already decided here too no feeding tube. regardless . now ask me how i will go thru with it if the time comes i have no idea. i think you have a power of atty with end life decisions maybe. read it again and then try to follow HIS decisions with an open mind. at this point its about making their wishes first choice and trying to put our own emotions and necessities on the back burner. remember the drs have the obligation to suggest extending life at all cost. its their duty. -i know how hard this is and by no means any easy decisions here. you are lynns advocate and i know you will make choices as he would want. easier said than done right?? (((HUGS)))
Nikki-If you decide to go the feeding tube route it's not as bad as it used to be. Rather than a very uncomfortable tube down the nose a very minor proceedure can insert a thin tube directly into the stomach. I don't think hospice will go alone with this, though. As before-go where your heart takes you.
Thank you for your support and advice as well. *sigh* it is all so hard.
Divvi, things have changed with doctors and their sense of duty since disease like Alzheimer's. Most doctors do not advocate anything to extend life. At least that is what I have found in all of Lynn's illnesses from his pulmonary embolism to his pneumonia. Some are kind, some not, but they have all said it was my choice to treat, or not. This is the first doctor who has suggested a feeding tube. Before it was always me wondering if I should.
I like this doctor. He is retired and he is older, so he "gets" more than a lot of the younger doctors. He is kind, but calls a spade a spade. I need that. He told me bluntly that he would let me know when Lynn was actively dying. I needed to hear that as well. Right now, Lynn is not actively dying. The tests show his heart is strong. He has no other health issues, no high blood pressure, no diabetes, not even high cholesterol, nothing.
To me, he still has quality of life. I have been so worried several time about Lynn's eating, but don't feel comfortable coming even here to talk about it. Mainly because I know most would not put a tube in, and most do not see his life as having quality. When a loved one passes, most say, "they are at peace"
And here is where I am different. Lynn is at peace right now. He isn't suffering at all. He is happy, content, and knows a peace in this world I damn sure never will.
Yes, he is bed bound and he needs total care.... I know these things. But does that mean he isn't a viable human? In my eyes he is! ,....He laughs, he talks, he reads, he can express himself, he is animated, he enjoys activities, he feels emotions and is able to express them... and he still knows me, and loves me. How am I suppose to just give up on him? I can't, and I wont.
If he were suffering, if he were comatose, I wouldn't be saying these things. I would not wish to prolong his life if he was. But this just isn't the case, not right now anyway. Is his quality of life what he would want? No, of course not. Is his quality of life enough to keep fighting for him. In my eyes, yes, without a doubt.
Nora, you advice has helped me through this journey more than you can possibly know! One thing I do know, is Lynn would want me to follow my heart. Maybe not think with my heart, but follow it's gut instinct. And right now it is screaming, I can't watch him starve to death. It would completely and totally destroy me.
I have some more research to do, and my sister has company coming, so I have to go for now, but I will be back later.... I keep hoping I wont have to make this choice, at least not yet. acccccck.... thank you all again, much love ((hugs))
Oh real quick... and yes Nora you are also correct about Hospice. They recently told me Lynn would not re-qualify... Not because of his health, but because of my attitude! I was told I had “too much hope” and because I would still treat Lynn instead of offering just comfort care. Well ok….. So yes, we are parting ways…….
Your DOCTOR said so, and I cannot believe your Lynn can read with this disease, I mean dh is not bedbound but he could not read and watches the same shows over and over, often with the sound off.
I watched as my sister passed a few months ago, of advanced cancer. I learned about palliative care, and how and when to NOT give the tube etc. Even KNOWING she would die soon, it still hurt so bad to see her with no nourishment. Thank God she died only 3 days after they stopped.
The doctor, and you, will know when it is time. All this my opinion of course. God bless you.
Nikki, You need to do what is best for you and your dear Lynn. I find no fault in that. You have a kind heart, with that I am sure you will find the right decision.
Coco, My DH watches the TV with the sound off too.
Nikki, you'll know in yourself when it's time...just do what your heart tells you. That Dr sounds like a nice caring man..and so nice to have him tells you as it is .. It sounds to me Lynn is confortable and happy as he is..and if your happy too, that's all that counts..
Nikki, As you know I lost my husband last week. He had not eaten or drank for 9 days, however, due to his Living Will wishes, I respected him & chose not to insert a feeding tube. Which was very hard to watch....I even question myself if I tried hard enough to get to him drink & eat. I know in my brain that I did, however, my heart still questions. My husband was 60 years old with no other medical problems but dementia, however, he had not spoken for 3 years & was bedridden. He had been losing weight since March, even though he ate, I feel his body just was too tired to fight any longer. After an almost 11 year struggle, I am happy for him that he is whole again & not in a world of confusion any longer. Though I am sad for me & miss him already. Until a couple months ago, I would sit by his bed, ask him to please not leave me. Then one day I realized how selfish I was being, why would I want him to live as he did. I never ask that of him again. I think it would have been very hard had my husband not had the Living Will. Whatever you decide, it is your choice, you know your husband better than anyone else & would know what he would want. Hugs to You!
Yes Nikki, it is your choice to do as you feel is right. I may be facing the same issue soon. DH has lost 40 llbs in the last 4 months and only weighs 136 right now. He refuses to eat and we feel fortunate if he gets 2 spoonfuls of food in his mouth. He also refuses to drink much so there is not much we can do. I question whether I have tried hard enough too Kadee* but he just pushes my hand away or closes his mouth if I try and feed him. I am surprised he still walks around (with a walker) and is not sleeping 24 hours a day. He has to be weak but he won't give in. I don't know how much longer this can go on. 2 of our children live across country and I don't know what to tell them. One is expecting a baby this week and will try and come out as soon as he can. They are concerned but have lives they are living too. Nikki, you are a wonderful wife and I pray that you will have the wisdom to make an informed decision ((((hugs))))
Nikki: Please don't feel like you can't express something that others may have a different opinion on. I don't believe they hold your different opinion in judgment of you. It is just such a personal thing that only the spouse can know what to do in a certain circumstance.
Others may have talked with their spouse before this type of decision is needed and are doing what was requested and/or they may even have changed their mind as time and circumstances progress. We are all supporting you. You have a very special relationship with your husband and I don't believe anyone would fault you for making whatever decision you make.
*tears* what in the world would I do without you guys to share with?? Thank you all so much for replying and trying to help me. It means a lot to me! ♥ My mind is just spinning. I am no closer to an answer, in fact I have more questions than I did before. *sigh*
I called the nursing home and they had trouble tonight getting Lynn to even drink. This is a first, he has always wanted his drinks. They also mentioned that 3 other patients on his side of the wing didn't want drinks or food either. I can't help but wonder, maybe his throat hurts? Maybe they are getting yet another flu going around. I have sooooooooooo many questions, soooo many thoughts and fears......I just can't put them to words right now.
But I do have one big question that I am wondering if some of you may be able to help me with?
How long can one wait to decide on the feeding tube? By that I guess I am asking, how long can they go only eating a little, but drinking fairly well?
Just last week he was eating his usual 50ish %. Then all of a sudden, bam! he doesn't want to eat. Why? I just do not know. I have been so frightened, but not until tonight has fear consumed me. I know this is because though he wasn't eating well, he was at least drinking a good amount. Them telling me tonight he didn't drink much... well, that frightens me and makes me wonder how much time I have to make up my mind.
nikki yes there are always issues that crop up and give us stress huh.? if you think there could be flu going around i think the dr could check his throat/ears for any signs of redness or infection? i spray on occasion the cloroseptic spray down DH mouth if i suspect throat issues here. it deadens the pain if any. and a crushed up tylenol may help if it hurts to swallow? as far as the feeding tube if you go thru with it i think your dr will be the best source for info. my concern if it were me would be how to keep DH from pulling out the tube and the issue of having to maybe use restraints to keep them away from it. i know we just discussed a possible catheter due to ongoing uti and we decided DH would try to pull it out so its a nogo at this point. your best bet would probably be to sit down with dr and list the pros/cons and go from there. i hope you can come up with a solution that helps appease your mind and ease your fears. many of us may have to be in this situation at some point and we know how difficult this becomes to make decisions. hugs and know you have our support whatever you decide. divvi
Nikki..let me take a stab at answering your question. If your DH is in a frail, weakened condition, with severe medical problems, he would become comatose within days with out food or drink. However, he sounds strong without severe medical problems, so he go without food or drink for 2-3 weeks before he becomes comatose. You have time do not let anyone pressure you into a decision. As my DH is beinning to seriously reject food after breakfast, I am very interested in this issue. When I try to get food into him he pushes my hand away as the food is poison and he is nauseated by the sight of it. I have read when a person refuses to eat, we need to find out why. It could be something as simple as not liking the food that is being served, or needing help in eating. It is also possible that the person could be in the early stages of the dying process, where the desire for food and water begins to decrease because the body is beginning to shut down. As you mentioned this is a huge challenge. So hard to see someone reject food. A feeding tube can be inserted which requires minimal surgery and often goes undetected by patient so is not a "pulling out" problem. Every treatment, this one included, has benefits and burdens to a patient, and every intervention must be weighed with those benefits and burdens in mind. Starving is an emotionally loaded word that usually refers to someone who wants food and would eat it if he had some. But a person who has stopped eating and drinking has actually simply begun the natural process of dying. These persons rarely feel hungry and sometimes even the smell or thought of food is nauseating. So as Divvi suggested sit down with MD and discuss. Hope this helps. We are here for you.
I have told my children that if I am at the end of this journey and they have a feeding tube for me I will come back and haunt them. I had a brother in his late twenties that was in a coma for 7 years that did not move or say anything and certainly had no quality of life. My DH and I have expressed that no feeding tubes. I can understand Nikki's feelings because Lynn has shown signs of enjoying life and in that case I could see doing a tube.
another thought - try to actually touch the food to their mouths if you can get it close enough. many times i see with my DH that he doesnt realize its food or to remember to open his mouth . and alot of the time i have to hold his hands down from his face to get him to taste it. if the food touches his lips he responsively opens his mouth. the loss of vision smell and or taste may influence the need to eat as well. also if i see hes reluctant to eat something healhtier i start out with something sweet.. chocolate or icecream usually gets the mouth working long enough to get something down. just a thought. i know we try to devise any and all ways to get food into them. if you use a straw sometimes you have to prime the pump so to speak as they also can forget how to suction the liquid. holding the straw on the end and getting a bit into the mouth reminds them how to suck the liquid most of the time.
Yes Divvi..that works here as well ...if I can just get the taste of food on his tongue sometimes it works like magic. The other straw trick is to moisten one end of the straw and then put that end in his mouth.
((Divvi)) ((scs)) and (bama))....thank you so much for your support, hints, tips and concern. You have no idea how much I needed to talk to someone about this!
He ate and drank! He asked for the drinks and drank them himself!! Thank You God!!
Was a long day....mainly because I didn't sleep last night. I decided to go with the feeding tube if he didn't drink by Monday. I also called one of his children, the one I asked to be co-guardian....he came for a visit Saturday...we talked for the longest time. He agreed we should Lynn wasn't ready to "go" and still had enough quality of life and he wanted feeding tube. And that made me feel better.
Then I looked through his living will....I knew what it said but it has been years since I looked at. There in his own writing under the feeding tube question....he wrote...yes, but no only if my wife feels there is no hope. My wife and family are the most important consideration"
From that and a conversation I remember......Lynn is letting me know it is ok to hold on as long as I need to. .....and as long as he still doing this well, I am full of hope and ready to fight for him.
I will continue to go in twice a day until I know he is out of the woods. I am in tears but will be back later.....thank you, so much! <3
Nikki, I believe you have your answer. If he marked yes to a feeding tube in his Living Will, then I would respect his wishes. As I mentioned I respected my husbands wishes to not use a feeding tube.
Kadee, first let me tell you how happy I am that you are still hanging out with us. So many don't, and who can blame them? I think of you so often, and I pray you are finding some peace ♥
I know I am twisting Lynn's words..... I know when we did those papers he was healthy and of sound mind. When he wrote yes... he meant it as a temporary solution if he could recover. when he said no, he meant if there is no hope. And I know he meant no hope for a full recovery. I am not as selfless as you, I am not ready to let him go. He wrote "no only if my wife feels there is no hope" ... I know full well there is no hope for a full recovery.....but between what he wrote and a conversation we had, I know he was doing as he always has done, putting my needs above his own. He meant when I had no hope. And I haven't reached that point yet......He still knows me, he still loves me, and is able to express that love. I just can't let him go....
If he were suffering, if he was unable to talk, read, laugh, smile...etc etc... then I know I will be strong enough and love him enough to let him go. But now, now is not the time.. I just know it. It's hard to explain.......
Nikki, Follow your heart. Helping someone could never be wrong. And with your Lynn still knowing you and loving you I can fully understand why you would want to help him in any way possible.