I prefer to say Lynn is late stage. Not everyone knows the 7 stages. I do not however like to use the term end stage. Yet, everyone seems to be shoving that term down my throat! When talking to doctors, the nursing home staff, hospice or even Dr Uy, I will say Lynn is late stage or stage 7, and they reply with, well, really he is end stage.
I wonder what purpose it serves to tell me this over and over? It isn’t as if I can possibly be in denial this late in the game. There is not enough sand in the world that I could try to hide my head in. I am painfully aware of all that Lynn can not do.
Hospice refused to recertify Lynn not because of his health, but because of me, they told me…“you have too much hope” Really!!! That just blew me away. Without hope, I have nothing!
In most of the information I have read they talk about the seven stages, none of them have called stage 7 end stage. I guess I have the mind set that “end stage” is actively dying. To me that means the standard 6 months or less. That isn’t the case with Lynn, well, it could be, but no one knows. In fact his doctor told me Lynn is not actively dying.
Yes he is bed bound and needs total care. BUT, he can still talk, he can read, he laughs out loud, smiles, can communicate to a degree. He is eating, has even gained weight. He is happy and able to express that to me. He tells me he loves me every single day. All things I think are absolutely amazing!! All in all, he is holding his own.
What is so wrong with me trying to be happy and enjoy the time we have left together? Why do these medical professionals insist on telling me he is end stage? IS there something different about end stage, verses late stage that I am unaware of?
Thanks for letting me get that off my chest! It happened again today, and I am just flabbergasted as to why…….
I can't know or understand what "too much hope" can possibly mean....From what I have read from you on this forum, and from your photo your inner beauty shines through. You're beautiful, inside and out and surely your Lynn is affected by both whenever you are with him. Probably even when you are not with him.
It is not for me to say how much of holding his own is for you, for himself, or what combination...but you are a beacon of true light and no one should try to take any of that away.
Wow Abby!!! Whatever harm they caused me with their words, you more than made up for with yours! Thank you for your loving and kind words ♥
Hospice told me by too much hope, they meant that I was not ready to give up, I still had a lot of "fight" in me. That I would still treat for things like pneumonia and I would have testing for an event, instead of just offering comfort care. All of that is true. Treatment for pneumonia is a simple pill. An xray can show me if he has had a heart attack, or something like when he had the pulmonary embolism. I can't say no or yes to treatment, if I have no idea what is wrong.
Lynn has rebounded time and time again. He is not ready to give up, so I will fight for him. To me that isn’t denial, it is love. I would not subject him to major surgery or anything like that, but I will do whatever I can to make sure what time he has left is of quality and he is happy.
You know, these same people were so compassionate when I was falling apart and on my knees sobbing. Yet now that I have come to a place of peace, they seem to want to make sure I go back to being a blubbering bundle of misery. I can’t honestly understand it. My Mom said maybe they are just making sure I am “prepared” for the worst…. Perhaps? But there must be a better way …..
I had lost a lot of faith in mankind, you gave me some of that back… thank you ((Abby)) ♥
Nikki, obviously you don't fit the typical mold. I, too love my dh, but when the doc prescribed him Lipitor for cholesterol at or around 200 I said what for? so he can live longer and suffer longer. If the good Lord wants to take him sooner with a heart attack, so be it, I think that would be a blessing to him. Besides, I don't consider 200 high cholesterol at his age. Mine bumps up on 300 most of the time, but that's my total cholesterol, my good cholesterol is off the charts high. So, I ignore them when they suggest such drugs for me, as well. Good thing, too, the main stream has now discovered what the Naturopaths have known for a long time, that drug is a problem. Anyway, I digress - I'm just feeling so chatty tonight.
Back to you, my friend, you are such a good example of being the strong advocate for your mate. If my Herbie was in a facility, I'd probably be like you, too; I get very protective of those I love. And, I'm with you, if they are going to treat for something, it only makes sense to know what it is. You go, girl!! You give me inspiration. Thank you!
It definitely strikes me as off that Hospice would use your attitude as a criteria for certification. Like you, I would think of "end stage" as referring to a relatively short period of time when the patient is actually shutting down.
Nikki-some people can just be idiots!!!!!!!! He is the love of YOUR life not theirs-so pay them no mind,just continue to care for him in the way YOUR HEART tells you to.
Unbelievable! I agree with emily that your attitude should not be used as a criteria for certification. It should be Lynn’s health. When they told you that did you get up in their face & say “WHAT”? I thought hospice was for comfort for the patient & support for the relatives. Anyway, Sweetie, we are here for you. Thanks for sharing that with us. I’m sure there will be more responses to you. Keep your chin up & give Lynn a hug from me! <3
Nikki, you are amazing. It never would have occurred to me to stop them from giving Gord IV or antibiotics for his pneumonia. On the other hand, I would not have allowed surgery unless minor or chemo. Someone who lost their husband recently said they would not allow an IV or antibiotics because the person was dying anyway. To me, it was a matter of hope and his comfort.
Don't let them take away your hope. Don't let them take away your peace. You have impressed me so much with your loving attitude. I wish with all my heart I had been able to be like you. You go girl.
Nikki--here's a guess: I have known several people whose spouses had dementia, were ambulatory (not in Stage 7 yet) and suddenly died. They were told it was a stroke (I'm thinking even a TIA, not a full-blown stroke). Perhaps when the brain is already so compromised, it doesn't take much to cause death in a dementia patient, and this is why the medical personnel use the term "end stage". Although Lynn has made a miraculous rebound, maybe they want you to realize that he is still in a precarious position?
As we all know, the course of dementia is somewhat unpredictable and I think we all need to be prepared to face the worst happening, sometimes without warning. That's one of the things that make this journey so difficult--everything is so imprecise. Maybe some others who had this experience can speak on the subject.
Let's face it, in some ways all our spouses are in the end stage. They were in the end stage from the first day they were dxed. It still boils down to most of us (and only each individual can judge) what the end stage means. There is only one other that we share meaning the of "end stage" with and that is our Creator.
Nikki....I love how you handle your situation. I use to always say to those that were fearful to express their real feelings to the doctors or even suggest the doctor might be wrong....just remember...the doctors are our employees. We pay for their service but that doesn't mean we have to agree or accept what they say and we have the right to fire them at any time.
Thank you all for your replies, I was blowing off steam and have to admit I feel better now.
Judith, I have fired two of Lynn's doctors. In dealing with my health issues Lynn always said "Doctors are PRACTICING medicine, and I sure wish they would stop practicing on you!" He is right of course, they are not God's and some are not worthy of our trust.
In looking over my initial hospice care plan I did find this "Patient or significant other elect hospice care & seek palliative (pain control) rather than curative care." I am thinking that is where the whole too much hope comes in. At the time of their recert I was debating a feeding tube. I would not have kept it in forever, but I had decided if he needed it temporarily to give him the boost I felt he needed, I would have done it. And I did treat pneumonia, and I would send him to the hospital in case of an event. I am guessing that is not within their guidelines of palliative care, and more of a curative care.
I of course do know we are on the last leg of our journey. If Lynn were in a vegetative state, seemingly lost in the "blank stare", his body tortured as much as his mind, if he were in pain or suffering, I would be more than willing to accept comfort care only.
But that just isn't the case. He is happy, content and peaceful. While it is true he can’t walk, he willingly does his range of motion and PT. He can follow simple instructions, like up and down when I am working on different parts of his body to try to ward off atrophy. For late stage, he is doing amazingly well.
Most important to me is that he is able to feel emotions, and he is able to express them. He in some way does still recognize me. His smile upon seeing me clearly lets me know that though he might not know my name, or even what a wife is, he still loves me. He tells me this over and over daily. Kisses and hugs and hand holding. Often he asks me to marry him. When I tell him we are married, he says good!! Maybe we should just get married again so everyone knows.
How does one just “give up” on that? It might not be quality of life in some peoples eyes… but as ((Bak)) pointed out...they are not me and he is not the love of their life. When God wants to call him Home, I am sure He will let me know. Until then, no, I wont just give up, I will hold tightly to my hope, and I plan on treasuring every moment we have together.
Thanks again, I do feel much better today. It is a beautiful day! The sun is shining, the birds are chirping, a perfect day to take my sweetie for a walk ♥ Enjoy your day my friends ((hugs))
I am and will always be your cheerleader, Nikki! I would have never tried Marinol if it hadn't been for you. It has made every day bearable. It's true that I have to do everything for him, but he can still walk. I have started taking him for short walks every day since the weather has improved. BUT when we are alone at night and he wants to snuggle, it is just like old times. The doctor wanted him a nursing home since before Christmas of 2010 and in a wheelchair almost as long. I refuse to do either. He hasn't been able to carry on a conversation for years, but every once in a while he will blurt something out and it tickles me no matter what he says. Yesterday he went downstairs with only a robe on to a living room full of teenagers and I told him he had to go back upstairs. He said plain as day "This is b***sh**!" When he goes, I hope it is in an instant! (((Hugs)))to you, sweetie!!!
nikki you are correct in that the hospice contract lists comfort/pain/pallative actions as the only course of action that would be provided. what is possible is to change your mind if anothe rmore necessary intervention becomes necessary and you can dismiss hospice and back on medicare to get the care you desire. you can 'say' (wink) you agree with the pallative/comfort care and then they cant force you to continue if you decide to pursue more aggressive treatment or intervention. i think most folks dont know there are many substages within the last stage 7. EACH substage within the 7th can last maybe as long as 1.5YEARS before they move to the following subdivision. my DH is stage 7D at this point and holding. hes been here for some time. it goes thru 7F which in my mind IS END STAGE. if may be of benefit to enlighten these folks that by no means is stage 7 really end stage but only the beginning of end stage 7f. if you consider up to 1.5years in each sub stage 7a-7f then you are possibly considering ANOTHER 9YEARS in stages 7. thats a far cry from end of life even if its not in a good position of life and little quality. your lynn has had dramatic improvements and that in itself would probably my in my mind why they arent recertifying at least one major factor. with increase in lbs and eating and general overall demeanor they would say hes not qualifying at this point. he would of course become eligible again if hes starting to decline. the good news is he didnt recert, which means improvement, but the bad news is you dont have hospice help. catch 22. i think you are happy hes improving as are we all. remember you can sign on hospice and agree to only pallative care, but you CAN change your mind at any time , drop hospice and go b ack on medicare and receive any prudent care you want to pursue. if nothing happens that you dont have to have a 'change of heart' :) you stay on hospice and thats that. divvi
ps for those of you in mid stages dont get overwraught hearing about stage 7. most of us will lose our spouses before stage 7 completes. this added time i said of 9yrs is hypothetical of course, their bodies are severely compromised at this point and it would be a rare thing to have them get to stage7f. a good description of each last substage is listed below. http://www.alzinfo.org/clinical-stages-of-alzheimers
this is a very good article about stage 7 and what drs have commented. some will agree some will disagree. i find it sad but true. these choices many of us will have to make. sigh.
I have to admit I know next to nothing about Hospice, certification, etc. Am I correct, Divvi, that you can one or the other? So, you just switch to Hospice when your lo is certified and they take over and Uncle pays Hospice instead of the hospital? I'm sure glad the pros are online here.
I just read the article above, Divvi. I know what my decision would be for myself and that is why dh and I both have living wills. I absolutely do not want to be kept alive artificially if there is no hope of recovery, as in going back to my life of taking care of myself. That feeding tube, I wasn't aware (but I should have been) how painful it is for the patient. Frankly, I think the Living Will relieves the caregiver of the horrible responsibility of making that kind of decision. I have to think that most people have them. Do the doctors just ignore them?
mothert its my understanding you can have hospice in a nursing facility hospital at a hospice hospital or at home. hospice comes to you. they are paid for by medicare or medicaide. medicare pays hospice directly for their services. under hospice care you get recerted after certain time periods. and if you qualify according to the medicare guidelines for dementias, you get certed. once you are on hospice you have 'assigned' your medicare coverage to hospice. hospice is then like your go to for any problem. they decide if you need a hospice approved hospital stay or care. you must RELEASE hospice from your care if you decide you want your loved one to go to a hospital without hospice approval this is so hospice then releases medicare coverage back to you and your medicare/medicaid as normal goes back in force. it is absolutely!!! possible for you to FIRE hospice at ANY TIME and say i want my spouse to have this care or that, and treatment. hospice would release you and you can treat your spouse however you want. hospice does require you to sign you are wanting only comfort pallative care not treatments other than for comfort. they also require a DNR do not resusitate, at least i was asked. if you want alot of testings invasive surgerys or feeding tubes dialysis then hospice more than likely wont approve that and you would release them and go back to your own medicare drs and hospital for that. under my contract i have agreed not to call 911 if DH has an emergency but only hospice. they will decide what should be appropriate care then. because we sign the DNR form if loved one has an emergency event we have decided not to call for paramedics but hospice to initicate pain comfort care only. ie probably pain meds or morphine to ease their passing. at least this is what i know about it. you CAN stop hospice at any time. and just revert back to your same insur coverages. its not a life deal where you cant change your mind. you can have a change of heart at any time. so there is really nothing to fear to sign them up. i am sure others who have hospice will have further input
yes we hopefully ALL have living wills. its imperative to release these decisions from family. we must hope that the person in charge will act accordingly as the patient has stated is whats in question. divvi
Divvi, I had previously read both articles, but did reread them. I think we take what we want from them, I know I do. (smile)
I remember in the earlier stages saying I wont do this or that, something’s I swore I wouldn't do. How naive I was. It is one thing to say it when not faced with it, but quite another when you are actually face to face with these hard choices.
You are correct, you can fire Hospice. And I did that once already. I personally didn't like their whole demeanor, It made me feel they felt Lynn had no value. I have had great experiences with them as well. Sometimes I think it all depends on who you are given. Some are great, some not. Same with everything in life I suppose.
I am not upset that they didn't recertify him as I didn't use their care anyway. We are lucky in that the nursing home can and does provide any care that Hospice could or would. I can see where it would be exceedingly helpful for those who still have their loved one at home. I can also see where it could be helpful for those who cannot visit their loved one often in the nursing home. Between me and the staff all of his needs are being met, so there really is no need to have them involved at all.
Interesting tidbit, when Lynn was in the hospital in 2010 I found out that his living will didn't amount to squat. Because I am his legal guardian, everything fell on me to decide. I was a bit shocked to tell you the truth. Of course I DID use his living will as a guideline on what do to, but it didn't hold any weight with the hospital. It did not help matters that in October when I was facing the feeding tube issue that Lynn had checked yes on his living will, but no on his POA. Ugggggg, not sure why I never caught that before! Such hard choices, and ones only we can make, as we are the ones who have to live with our decision.
Linda, your post made me laugh right out loud. Is so shocking and yes funny when they blurt out thing like that. I too am so grateful for the Marinol results. Because of it Stage 7 has not been the nightmare I feared it would be. I posted a video and some pictures today on facebook of Lynn at a music show today. He was soooo happy! Singing, whistling, tapping his hands and feet, laughing out loud, and the smiles... wow, just effects me deeply to see him so happy!!
Nikki- you are doing just fine.....Your care reminds me of what I went through, and how I fired Hospice twice because of disagreements with them. I followed my heard, and our care for Audrey was a "Power of 3" decision, Each of us had a veto power, and nothing got done unless we all agreed....And it helped to temper my emotions, and keep me focused on my "Hope". My hope was to keep her as functional as possible, comfortable, pain free, surrounded by the things she loved (movies), and just be there at her side. Did I have Hope?? Absolutely! I also treated conditions that I thought would affect her over all well being. UTI infections, bed sores, pheumonia, oxygen if needed etc...Yes I went out and bought an oxygen generator (illegally and without a prescription), and hospice did not like the fact that I did not have a prescription for it....Too bad...It was there and I bought an oxymeter so I could know when she needed the o2. Sometimes you have to bend the rules, disregard the advice of doctors or hospice, and do what you know in your heart is the right thing to do. I also developed a friendship with a gynocologist, who helped me treat the feminine problems (she even made a housecall), and a pain management doctor (who brought me some pain medication). Of course, I know that rules were bent, and that I could possibly be prosecuted or arrested for doing things without "prescriptions". The truth of the matter is that I was ready to defend Audrey with my own life if necessary, and her treatment was in my control and mine alone. Doctors and Hospice were there as an advisory capacity, and they quickly understood my plan of her care. I even went as far as buying a shotgun, and a pistol and I was ready for making a stand. It was a life and death fight, and I was determine to keep her absolutely protected at all costs. Luckily, you did not read about it in the papers, because all went according to plan. Nikki- stick to your guns ( oops not literally, like me), and insist on what you want. You are proving your Love for Lynn, and do not let anyone stop you or interfere with your plan. I loved the video of Lynn, and I am glad that you still are not giving up hope (whatever that means). I can remember my kids playing movies, playing pattycakes, and doing funny skits for my wife...these were precious because they never gave up hope...(yeah we knew she would not survive), but we had the "hope" that she would live each day as best as she could. I admire you Nikki- and know that what you are doing is perfect. You are truly being the "caregiver", guardian, and "pit bull" for lynn. Never give up! Stages do not really mean a thing, unless you are a performer, or are watching dancing with the stars....I remember spending a lot of time trying to figure out what stage we were in...and then I really understood that it did not matter at all...We use the stages to try to figure out how much longer will this go on...and the only answer is that it does not matter. It takes no more effort to expect the best, than to expect the worst ..
((Frank)) Thank you for your beautiful reply ♥ I did read this earlier, but it caused tears and I needed some time to think before I could reply. You get me when I think others maybe don't. I respect and have always been moved by your devotion to Audrey. I have told you before, you give me hope, you give me strength, and through you I see that I can survive. An amazing gift you are ♥
I know you completely understand that as long as Lynn isn't suffering I would wish he could live forever. Even in late stage. Of course I want who he "use to be" back ... but that just isn't going to happen. But Lynn is doing amazingly well, he is so happy, it brings tremendous joy to my life to just simply spend time with him.
I am still deeply in love with Lynn. He isn't my patient, he isn't a burden, he is my husband... not the man I married, but that is hardly his fault. And I see and feel how deeply he must still love me to be able to express it even now. Lynn never lost his empathy or apathy. He still to this day ask how I am feeling. He still gets visibly shaken if I shed a tear in front of him.
And I wish .... well... I wish what we all wish....
I have a gun, so there wont be the need to purchase one (wink) But you are right, by "hope" I do not mean a cure. I know that isn't possible. But I have been given a miracle with the Marinol results. Lynn went from a vegetative state 90% of the time to now being able to communicate and express himself. I wont waste a moment of the time we have been blessed with.
By hope I mean... to enjoy what time we have together to the fullest.
To see his smile and a twinkle come to his eyes when he sees me enter the room.
To hear him say " My God! You are beautiful." (like he said today upon seeing me ♥)
To watch his enthusiasm as he watches a chipmunk frolicking in the leaves
To witness the sheer joy he experiences at activities such as music shows
To take him for walks in the beautiful sunshine,
To see him pucker up for kisses and tell me "more"
To hear him tell me every single day, over and over "I love you"
To just sit quietly hand in hand and enjoy his presence.
This and more, is my hope and my "game plan" .......
"It takes no more effort to expect the best, than to expect the worst .. " That hit me like a lightning bolt. You know, I think it takes even less to expect the best because you aren’t consumed and weighed down like you are when you are expecting or planning for the worst.
It does of course hurt so very much to see Lynn bedbound and needing total care. But I have come to believe there actually is things worse than Alzheimer's. There are other diseases that take a very long time to claim their victim as well, but those poor souls know what is happening to them for all of that time. Lynn is so happy and blissfully unaware, his world is happy place where he is loved and doted on. That is my plan, to make him as happy and comfortable as I possibly can.
Oh! And let us not forget those times when he proves to me that he IS "still in there" and offers that proof by saying my name!! Wow, when he does that, it just takes my breath away. The clearer moments when he does know that I am his wife.... those moments make me so glad I held onto the love for both of us ♥♥
Nikki, I wouldn’t read too much into what the various people call it rather it be end stage, stage 7 or late stage. I’m not sure about everywhere but here in Florida they told me that there are only a couple of ways to be placed under Hospice care. One is if they believe you have 6 months or less of life left. This was very hard for me to hear also because for me to except that means I had to give up a battle against it that I don’t want to give up in my heart.
I think they may be trying to help you with your future decisions by giving you an insight on what they see. If this is correct they could be helping you make that decision later without feeling any quilt about rather you did the right thing or not. I hope I am saying this correctly.
Also if all Hospice does is comfort type care where you are then they may not be able to admit Lynn into the program if you are not ready to go to that type of care. Of course this is all speculation on my part. I am just trying to help you understand why they say what they say.
I had to stop and think was I fighting for me or was I fighting for Kathryn at that point and what was in her best interest. Her living will helped me because she was very detailed in it about what she wanted and what she didn’t want.
None of this is easy especially in that late stages. I watch Kathryn and one day she seems so bad and the next she seems to be doing better just long enough to give me that little bit of hope and then it’s gone again.
We all watch what each other are going though here and we all know you have done a great job for Lynn but we are not the ones you have to convince Nikki. The only person you have to convince is yourself. You don’t have to answer to anybody else. And what anybody else thinks doesn’t count.
I believe that we have to do what is in the best interest of our Loved Ones without regard for what we want. Separating the two isn’t easy. Just know that if you do what you believe is in Lynn’s best interest, in the end, you will be able to look back and know you gave him your best.
Anchor20, you nailed the bottom line for Nikki and all of us. What anybody else thinks doesn't count. That's the bottom line for all of us, day in and day out. Each of us needs to do what each of us needs to do, and as long as our decisions are in the best interests of our spouses, to protect our spouses and help our spouses for as long as we can, then by definition whatever we decide to do is the right thing to do. Period!
I haven't posted much over the last few months, if any. Things have been a whirlwind of trying to manage. I've lurked around though but this topic has touched on a reality that DH may also be in or almost in 7th stage. I don't know if he has had mini strokes or if the progression is 'progressing' but recently he had to go to the hospital for 'cognitive change' ended up being 'pneumonia and probably dehydration'. The cog. change was that he couldn't speak coherent words. Words were coming out of his mouth but they weren't in an understandable language. AFter IV fluids, he could speak again. He was in the hospital for 8 days thankfully the hosp. provided sitters round the clock as he was combative and agitated. My point is that I was asked how I felt about a 'FEEDING TUBE"..??? What? He eats perfectly well..There was concern that he might not be able to SWALLOW his medications.. I'm thinking evidently we have entered a new realm if doctors are asking me my thoughts about feeding tubes.. and I'm completely ignorant and unprepared to even THINK that way. Same as dealing with what actually happens if they can't FIND the bathroom and HAVE to GO.. The hospital stay provided a transition opportunity for a disposable brief but it was the doctor who asked me if I was interested in meeting with someone from HOSPICE that almost as jarring as mention of feeding tube. This is too longwinded..It probably won't go. I just thank you all for being here and realize how important it is to see your posts. Nikki I completely understand. Divvi, always thankful for your 'queenly' insight. I think DH refuses to sit on the commode and refuses to poop in his pants. Phranque, thank you for being here.
Yes, Nikki, there are diseases that are worse. I have been hearing more and more about ALS (Lou Gehrig's disease) lately. Those poor people know exactly what is happening to them and can't do anything about it. I don't know how I would bear it if my husband had that. At least dementia patients usually don't have self-awareness.
marilyn, you are so right. I thought about that too (ALS). The daughter of friends of ours had that. She was only in her early 30’s when she was dx & she lived about 3 years after that. They had fundraisers for her to help cover the medical costs & to have money for her kids (3 little kids). She knew what was happening to her & that must have been heart wrenching for her.