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    •  
      CommentAuthorNikki
    • CommentTimeOct 22nd 2014
     
    I haven't been here since our dear sweet Coco lost her precious Dado. ( 3 months ago today) I have been thinking about you a lot dear friend ((hugs)) And... I owe you a letter...

    My Lynn has been struggling since early July, and I could not bear the thoughts going through my mind. I have been paralyzed by fear. And I could not write you, nor come to post here... because.... well, I just couldn't.

    Everyone always says how strong I am. Pffffft! If they had seen me crying myself to sleep these past 3 months, they would see I am but a weakling just trying to hang on. We are all of us warriors! But, even warriors cry....

    To update, Lynn was injured at the facility on June 30th. His wrist had a severe bruise, and he had several smaller ones on his upper arm. Anyone who knows me in the slightest, knows how well I handled this and the fury that followed. I called the police, the burrow of Elderly Affairs, Adult Protective Services, the Ombudsman and our State agency. Meetings after meetings, after meetings......

    It was determined that "excessive force" was used, but they could not find the lowlife who felt the need to manhandle this poor frail man so roughly. Coincidently, or not, the person I did somewhat suspect (only because I had heard before that she does get overly rough when rushed) quit the day the investigations started. I worked diligently to see to Lynn's safety (as well as all residents) to change the protocols on reporting when an LNA is too rough. I worked with local government officials to continue my fight to try to get an LNA to resident ratio made into law. (still working on it!)

    Throughout the investigation, over and over it was brought up that Lynn was on Coumadin, and this would make him bruise easier. Which is true. But, he should never have been grabbed by his wrist at all, and never with that kind of force! After doing some research, I asked to talk with his doctor about getting Lynn off the Coumadin. He had been placed on it after his Pulmonary Embolism scare in 2010. At the time I was told it would only be for 6 months. But his PCP was of the older generation and kept him on it. His new doctor is younger, more up on recent studies so I wanted her input.

    She showed me research where an aspirin regiment proved just as effective, with less serious side effect. We decided to take him off the Coumadin and try the aspirin. I thought I was doing the right thing, the best thing, for Lynn. Soon though, Lynn became lethargic. Not just tired, down right lethargic! I did tons of research and all of the doctors assured me that coming off Coumadin did not cause this effect. They did testing and blood work, and it all came back great.

    Perplexed I kept documenting his good days and bad days with notes, pictures and texts. His nurses and doctors were just as stumped as I was. This went on for a couple of months....He waxed and weaned in his lethargy and ability to enjoy daily activities. It was utterly heartbreaking for me to see him so lifeless. I have accepted many declines, far far too many declines... but this just happened so suddenly, and he did have good days.....

    While talking with his nurse (who is also my friend and loves Lynn) we were comparing notes and looking though my pictures. It dawned on me that his "up" days were on the days he didn't get his aspirin therapy. But aspirin making someone lethargic? Could it really be that simple? Turns out, yes it can!! With his doctors permission, we stopped the aspirin for two consecutive days and the next day Lynn was awake and alert (And Happy!!) for the whole 8 hours I visited with him! His doctor said she has learned there is no normal, everything is possible, and agreed to lower his dose and give it to him at night. It was amazing the difference!

    My grateful heart was delighted to see Lynn's beautiful smile light his eyes once again ♥

    We enjoyed a couple of weeks of pure bliss until the next crisis... which we are going through now and have been for the past 5 weeks. It is a looong story, but the gist of it is, Lynn stopped eating. One day he ate his usual 100%, the next he would not eat. He would take one bite, cringe as if in pain, then clamp his lips shut! His doctor could not get his mouth open, so she did not treat him for anything... her advice, wait and see. Lord, lend me strength!

    This went on for TWO WEEKS before they finally ordered Nystatin Swish and Swallow, but gave no diagnose. If it had not been for me going in day and night to get him to drink TwoCal HN (a formula used in feeding tubes) Lynn would have died from starvation. I have been just beside myself with a combination of worry, fear and anger.

    Phone calls, meetings.... all just to try to get Lynn the help and care he needed. Ridiculous!!!

    cont.
    •  
      CommentAuthorNikki
    • CommentTimeOct 22nd 2014
     
    While on the Nystatin treatment, I happened to see the dentist in the hallway. I pleaded with her to come evaluate Lynn, which she was happy to do. She gave him a thorough examination. She eased my worries about the lump I saw under his tongue, it was not cancer but something similar to varicose veins. She also found the root of Lynn's pain, oral thrush. The Nystatin should have taken care of it, but the poor bugger can't follow the "swish and swallow" directions. So, not a lot of swishing happened.

    But he did willing eat!! And the relief I felt was wonderful!!! But, short lived. As soon as the 10 day Nystatin treatment was stopped, within days the pain was back and Lynn refused to eat again. My heart broke a little bit more.....

    They then started him on Diflucan, 3 days. It didn't help. So I called the doctor and spoke with his nurse Monday. She told me it couldn't still be the thrush. I insisted it was. She got snotty with me and said "a doctor would have to evaluate to determine that!" To which I replied, just as snotty, "well, isn't that a novel idea!!" Pfffft! It had been a MONTH since she had been in to see him. And I really like this doctor, but WTH!!??

    She came in to see me on Tuesday. I had to open his mouth for her (guess she missed that day in class). She isn't convinced it is still thrush, but his tongue is still caked with white gunk and there were several "patches" on the roof of his mouth. She admitted if it wasn't thrush, she didn't know what it was. *sigh... So, we agreed where he did willingly eat on the Nystatin that we would give it another round.

    If this doesn't work, I will ask the dentist to come in to reevaluate. If they don't know what is going on, I have already decided I will bring him to either an ENT or an oral surgeon. He wants to eat, his mouth just hurts. (or throat? God, I just don't know..) *tears*

    I am weary from fighting every single day to assure my darling is getting the best care possible. My heart is heavy seeing him suffer... nothing has hurt as deeply as this. Knowing he is hurting, him not being able to tell me what hurts.... accccck!!

    So, that's a partial update from our little corner of the world.... ((group hugs))
    • CommentAuthorCharlotte
    • CommentTimeOct 22nd 2014
     
    Thank you for the update. Sorry it has been so extremely difficult these last few months.

    How are you doing? I know you were going to have surgery on what is going on in your head but put it off because of Lynn and your mom. How is she doing?
  1.  
    Nikki--I rarely have time to come here anymore, but so glad that today I checked in. Sorry for what you and Lynn have being going through--I have thought about you over the months and wondered what was happening. Big hug to you and to everyone else still in the trenches.
  2.  
    Nikki, I went through a bout with thrush about eight years ago following heart surgery and lots of antibiotics that killed the good bacteria in my gut, and found the idea of food disgusting. Swishing Nystatin, as ordered by the doctors, gave a few days of temporary relief, but swishing that stuff was pretty disgusting also. After several weeks of on and off swishing and getting temporarily better, a friend urged me to go to a Walmart pharmacy and ask for an OTC probiotic product called Lactinex that the pharmacist has to keep in the fridge. That did the trick for me. The little Lactinex tablets that you chew taste pretty good -- almost like Horlick's malted milk balls if any of you can remember those. I'd urge you to try those on Lynn.
  3.  
    Nikki, I am so sorry for all that you and Lynn are going through. You are such an unbelievable advocate for Lynn. My husband is still home and in stage 5/beg. of 6 and your story scares me, but prepares me. This is so difficult for you. Stay the course and keep fighting for Lynn...you are both in my thoughts and prayers. Love, Christine
  4.  
    Nikki, you are doing a wonderful job. I agree that it is outrageous that we as family members have to be so involved and monitoring so closely all the time just to get the most basic of care done for our spouses. My DH had the thrush problem while he was in the Rehab. that three weeks in April and May, before he came home with Hospice. I was the one who noticed it--was told he did not have it--said to them, "Did you look under his tongue?" Of course they had not. Duh. So then they had to wait for the doctor (who came once a week) to diagnose and prescribe. Fortunately one of the nurses had some extra Nystatin, and started him on swish 'n spit without MD orders. Unprofessional of course, but at that point I didn't care. I just wanted him to get some treatment. The bright red tongue, bright pink lips, and white patches all under his tongue were so distressing to see, and must have been uncomfortable for him, although he couldn't say so. He could not do the swishing and spitting, so they (and I, once he got home) would use one of those pink-sponge toothette things to dip into the Nystatin and swab his mouth.

    In terms of the bruising, I give you full credit for not going in there with a bazooka and blowing the place up. It makes me furious to hear that that even happened in a place where frail, demented, vulnerable people are supposed to be getting "care." Your follow-up was truly heroic.
    •  
      CommentAuthorNikki
    • CommentTimeOct 23rd 2014 edited
     
    Thank you all for your comments and support. Christine, I see you are a newer member, welcome to the family! ♥

    GC, thank you for the advice on the Lactinex, I will talk with his nurse in a few minutes and ask them to request it from his doctor. They didn't do a probiotic because he hasn't been on any antibiotics so it was not the cause of the thrush. But, at this point I will try anything to relieve his pain!

    Elizabeth, trust me I was sitting on my hands at the meetings to prevent myself from doing bodily harm. Never have I felt such rage....the ONLY thing that brought me comfort was I don't believe anyone intentionally hurt him. He has a tendency to not let go of things he is holding, such as the bedrail when rolled, and one has to loosen his grip. I believe someone was rushed and careless and grabbed his wrist entirely too hard. New training has happened for all LNAs to NEVER grab resident by the wrist. I still want justice, but it took a back seat to overseeing Lynn's current crisis. I know you understand.

    Marilyn, how wonderful to see your name here ((hugs))

    Charlotte, thank you for asking about my mother. She had lung cancer, her surgery was a success and they tell us she is cancer free. Her recovery has been hard, but she is doing much much better!!

    I have still not had my next brain surgery, though I am of course closely monitored. The appendectomy I had in April caused a huge hernia, I was suppose to have that repaired with mesh last month. I know I have to do it, but I simply cannot when Lynn is doing so poorly. I know I must take care of myself too, but unless its an emergency, Lynn does and will come first.

    I will work harder at not being away for so long. I simply get overwhelmed and go into what I call "turtle time" .. meaning, I hide in my shell. Again, thank you for the much needed support ((hugs))
  5.  
    Nikki, how very important and wonderful for us to hear from you. I do apologize for my very few posts, but I know everyone "gets it" . The "after" in this journey has many unexpected emotions, and some of them are having a really hard time reading what most of you are going through now, not after we lose our spouse. Just the deep hard memories. When they are gone, as hard as it is, you know that your caregiving journey is over, and well, that is another pain.

    Dear friend how awesome you remembered today is the third month since Dado died, thank you so very much. As for the note I sent you, honestly I felt bad after because it was so sad. I did not want to make you feel worse, yet I know you are there for me to "listen" Please know I would do anything for you. I really wish I could be there to hug you and listen to everything and take care of YOU. God bless you Nikki, and Lynn.

    I will be here for you in any shape or form, even come over to the mainland and grab you and take you to see Mr. Turtle if it comes to that. And I too am so happy your Mom is doing good, whew. My prayers go out to you and Lynn today, prayer, pixie dust, positive vibrations, peace and love and all that is good.
    •  
      CommentAuthorNikki
    • CommentTimeOct 23rd 2014
     
    Coco, I will be brutally honest... your letter was not too sad for me, so please do not feel badly about sending it. The truth is, I didn't reply to the last one, only because I was feeling too guilty! I know that sounds a bit crazy, but I felt so badly for still having Lynn to treasure while you were hurting so deeply. Survivors guilt...... I will write you more in private. Just know you are loved and I AM there to listen to you, always!

    Pixie dust.... that made me smile :)
    • CommentAuthorMoon*
    • CommentTimeOct 23rd 2014
     
    Nikki,

    I was thinking about you the other day and wondering how Lynn was doing. I am so sorry to read about his eating problems.
    Hopefully, the second treatment will clear up his throat and mouth so he can eat again. I know when my husband had thrush,
    I had to swab his mouth as Elizabeth described. He, too, couldn't follow the swishing instructions, but he did try to swallow
    it. It took over a week to clear it up and it was difficult to get him to eat much during that time. The ENT said a poor
    immune system contributed to my husband's not antibiotic use. Good luck.

    Coco, anniversaries are more difficult to get through than the average day . I have heard from many people who have lost a loved one
    that they felt their loved ones presence. Personally, I believe anything is possible. I hope you will find peace in the weeks and months ahead.
    • CommentAuthorLFL
    • CommentTimeOct 24th 2014
     
    Nikki, so good to hear from you and letting us know how you and Lynn are doing. I am so sorry you both have had to endure the events of the last several months. I am sure it has been hard on both of you. But you are a warrior princess and a mama bear so if anyone can get results, it's you!

    My thoughts and prayers are with you and Lynn. Welcome back, it's always so good to read your posts.
    •  
      CommentAuthorNikki
    • CommentTimeOct 25th 2014 edited
     
    Thank you Moon and LFL for your replies and support ((hugs))

    We are on day 4 of the Nystatin. Yesterday he did willingly open his mouth for food. But I could tell it was still bothersome to him. I switched to the Magic Cup (which is like ice cream when frozen and pudding when refrigerated, and is fortified with nutrition.) He seems to only be able to tolerate cool/cold. He did take this better... but it took a half hour to get him to eat just that little bit. *sigh

    GC, the doctor agreed to a probiotic, she chose Culturelle... hoping it helps!

    On a different note, Lynn loves to read nametags. So, I had one made that says NIKKI, (then underneath)... your wife. Yesterday after I tucked him in for his afternoon nap he kept gazing at it... he then reached out and put his hand on my face, gently stroking my cheek and said "my wife". Awwwwww! Moved me deeply ♥
    •  
      CommentAuthorNikki
    • CommentTimeOct 25th 2014 edited
     
    Sigh, he didnt eat but a few bites today. While it is encouraging in that it tells us he hasn't forgotten how to eat, it rips at my heart.

    I have decided not to wait the for the 10 day treatment to finish and I will request an appointment with the specialist first thing Monday. Who knows how long it will take to get him an appointment.

    Very discouraged and more than depressed, but I remind myself to be grateful for what we do still have....
    • CommentAuthorMim
    • CommentTimeOct 25th 2014
     
    Nikki, it's hard to know what to say to you, except that my heart goes out to you. You are one of my "heroes" here, & I'm glad to see your name once again, although I am sorry that you're having so much difficulty because of this beast that we must deal with.

    I think that sometimes it's hard to remember to be grateful when everything seems to be caving in.......keep the faith & keep going (actually, what other choice do we have?).

    Mim
    • CommentAuthorcassie*
    • CommentTimeOct 25th 2014
     
    Nikki, good to see you.There are much stronger anti fungal medications available in tablet form. My DH took them, for oral thrush (severe) but I am unable to recall the name, far better than what you are trying now.
    Best wishes to you and Lynn.
    •  
      CommentAuthorNikki
    • CommentTimeOct 25th 2014
     
    Mim and Cassie, lovely to see your names! And thank you for the support ((hugs))

    Cassie, his doctor does not seem willing to try the stronger drugs. As I said before, she isn't convinced it is still thrush. Keep in mind, she had ME open his mouth, so she did not get a good look. I on the other hand clearly see his mouth when he does his big yawns. There are still lesions and the roof of his mouth and his tongue is still caked in white gunk, so I am adamant that he does still have it. I am tired of playing the guessing game and am just going to take him to an ENT specialist.

    Mim, thank you for the encouraging words. I guess we do have choices, just none that I could live with.

    His daughter flew in for a visit and ended up crying a good deal of her visit. I genuinely felt compassion for the pain she was suffering. He has had a tough few months, and it was a shock for her to see him so tired. Even though he is late stage, he has always been so happy and much MUCH more alert. Tonight was a bad night in that he was exceptionally tired. I did explain to her that earlier in the day he hadn't been that bad..... But, he is not doing well at the moment, and it is heartbreaking. I cried too, but I waited until I left.....

    I just wish so desperately he could go back to the way he was just a couple of months ago... I keep reminding myself that he has rebounded time and time again.... and I continue to pray, beg and barter that he will this time too.
  6.  
    Hi, Nikki,
    I also have not been on as much in recent days but was so glad to see your post as I had been wondering, when I was on the boards, how and where you were..
    I have been busy with so much of the " after" and I am still so far from organized but things are happening from getting the driveway replaced and the electrics done to my next project getting rid of the grass....we have severe drought.
    I was reading all your posts here about Lynn's problems. My dad got thrush when he was in hospital having oral surgery for mouth cancer..it seemed it took awhile for it to cure it and in his case it was mostly itchy as I recall. He was not an ALZ pt,
    My mom had AD and as time went on, her eating became more and more difficult. At first it was just getting her to pay attention to eating.She would rather look around or play with the carrots or napkins...later the swallowing became a problem. We became aware of that when one evening she began to choke..she had become a chip monk. Yep, she would save her meal for later..truth was she was forgetting how to swallow. My dad, a surgeon, said no feeding tubes...while they prolong life, they also can present their own myriad of problems..
    I was with my mom for her last 11 days and I remember we would thrill if we got 500ccs in her...but the nurses at the same time were good enough to start to get my thinking in the proper frame of mind that she was in the final stages and that these successes were going to become fewer and fewer. My mom had a pacemaker so I think she lived longer than she might have otherwise lived.
    My Ozzie, it was a mixed blessing...he had dementia but was not at the level where I was on Pee and Poop patrol though I had all the rest and in addition the cardiac and diabetic issues.
    Then he got penumonia. I got him to hospital when he had a slight fever but in those with compromised immune systems that can be quite serious. He was started on antibiotics and seemed to be responding when on the Sunday morning he suffered cardiac arrest and died. I read in the hospital notes that he would need to consent to hospice...in the blink of an eye it all came to a head and suddenly. While he had the AD and other conditions, he was " stable" until suddenly he wasn't..
    Dear Nikki, you have been so strong through all of the battles for Lynn's care and I know somehow he deep down knows this and loves you all the more for it. And you have had your own battles with health too and everyone here loves you to bits. And we wish we could be there to help take the load off so you could get the rest you do need.
    I wish there was something optimistic to say but the reality is that with each victory just around the corner there will be another upset...this is the hardest roller coaster anyone will ever ride, patient or caregiver..
    Keep us posted on how both of you are doing. I hope you find a solution for his mouth problems soon.
    Arms Around and big bear hugs to both of you..

    Mimi
    • CommentAuthorCharlotte
    • CommentTimeOct 26th 2014
     
    Nikki - next time the doctor is there and wants to see in his mouth - start yawning. Hopefully he will do like most and follow your lead.
    • CommentAuthorcassie*
    • CommentTimeOct 26th 2014
     
    Oh Charlotte, that is so funny!! And such a clever idea!
    •  
      CommentAuthorNikki
    • CommentTimeOct 26th 2014
     
    Yeah, I have tried the yawning to get Lynn to yawn. Even his nurses would try, but it doesn't work. He never did react that way. However, I did turn his yawns into a useful way to give him the Nystatin Swish and Swallow. Yesterday when I was using one of those toothette sponges to help keep his mouth clean, he took it from my hand and started mumming on it. For the longest time he kept it in his mouth, even moving it to different areas. I can only assume it brought him comfort. He will not open his mouth for it though, so I could not use it to put his medicine on it. (because when you press it between the lips, the liquid just rolls down the chin) So, I waited until he yawned, then popped that bad boy in there :) It was saturated with the medicine and for the first time I think it actually had a chance to work.

    Mimi, wonderful to hear from you! I remember well your beloved Ozzie and the struggles you both went through ((hugs))

    I still believe that if we can clear the thrush he will be able to rebound. Perhaps not back to where he was, but at least better..... Since the Marinol, he has always eaten 100% of his meals. He still drinks fantastic! And passed his swallowing test with flying colors. (he has had 3 in the past 5 weeks just to be sure) He looked much more like himself today and Last night and today he willingly took bites of his food. This is how he started to recover the first time he was on the Nystatin. He was back to eating 80% when they stopped his medicine, and it came back. I am not going to allow that to happen a second time. So, first thing tomorrow I will call his PCP and get the referral to a specialist. I will feel better having someone who is a specialist evaluate him.

    I am going in for all meals, my day has been loooong. Thank you all for the support and I will be sure to update ((hugs))
    • CommentAuthorMoon*
    • CommentTimeOct 26th 2014
     
    Nikki,
    I really admire your positive attitude. Lynn is fortunate to have someone like you in
    his corner. I will keep praying for you both.
  7.  
    Hi Nikki,
    I don’t know how you do it – you are like a lion when it comes to fighting for Lynn, and still you are as soft and vulnerable as a kitten. Wishing Lynn the strength to keep fighting, and you the courage to keep doing what you are doing.
    It is heartwarming to see all the suggestions and comments from people with their own experiences and advice.
    Loved the badge story. Kindest regards,
    • CommentAuthordivvi*
    • CommentTimeNov 3rd 2014
     
    Hi Nikki- glad to see your name and update on you and dear Lynn. I echo your comments about how we want to return to just a few months ago before they start to decline. as soon as you mentioned thrush I did a thorough check! one never knows if something we cant see can be altering their abilities. my DH as well has been failing these months at a faster clip too and its heartbreaking to see we can not stop or alter the path that lies ahead. only watch, love ,and extend whatever comforts we can afford to make them as comfortable as possible. so sorry to hear of lynns decline and hoping that yes once again that he can make a rebound. they can surprise us so very often cant they. hugs and best of luck stay in touch when you can.
    divvi
    • CommentAuthorLFL
    • CommentTimeNov 3rd 2014 edited
     
    Nikki and divvi, I just want you both to know how much I respect and admire both of you. You handle this journey with so much grace, caring and love and even though you may have very, very difficult days you come here and support each one of us Warriors each in your own way.

    You're examples of what it means to take care of our spouses...you are strong, vibrant women who I admire and learn from with every post. We're going into year 7 soon and I am weary; do I have the strength to go on for an indefinite time? I truly don't know. But I know you'll be there to encourage me and help me through this. For that I am eternally grateful.

    Love to you both.
    •  
      CommentAuthorNikki
    • CommentTimeNov 3rd 2014
     
    Moon, Marg, Divvi and LFL, thank you for your comments, support and encouragement. ((Hugs))

    Divvi, it is so damn wonderful to hear from you! I ended up breaking down in tears after I read your reply..... I have always felt we were kindred spirits. I am so sorry to hear of your sweethearts decline. It is so heartbreaking! I know you are doing as you always do, loving him through it all ♥

    I don't know how to express what I am feeling, I guess the best word is terrified. I KNOW he has something wrong with his mouth, its more than Thrush I feel. But, I am also so fearful we are dealing with a major decline. He is just not himself at all.... the blank stare is back..Not always, but often enough.... and God, it is destroying me *tears*

    I want so much to believe that this decline is caused from the Thrush. It DID happen at the same time, and continues to get worse as he is not able to eat. My very real fear is that even if they do figure out what the problem is, will it be too late? I say this because no matter how sick he was, he never reverted back to that damn blank stare. He HAS rebounded time and time again... but again, since on Marinol, he hasn't had that blank stare... so, it is all the more devastating to witness it again.

    I beg and barter with God, take him if you must... but don't take away his smile that lights his eyes....

    I want to save that light.....

    I want to save him!

    And I just have to do everything possible to know I did my absolute best to help him and take care of him.

    He IS still "in there", I see him.. I feel him ♥ There are still smiles and I love you's.... which I AM so grateful for!!! But, there is no more building with his blocks, no more made up story telling....some laughter, but not like before.... Just a couple of months, how quickly it can all change!! I shouldn't be so shocked, we have been at this for over a decade now...but shocked I am!! Life is so fragile...

    I haven't given up, I still cling to hope. He sees the specialist on Friday. I will see what they say about the Thrush and whatever else is going on with his mouth and go from there.

    I can't seem to stop crying......
  8.  
    Oh, Nikki. It is so hard, and you are doing such a good, brave job. Arms around. (((hugs)))
    • CommentAuthorMim
    • CommentTimeNov 4th 2014
     
    Prayers for you Nikki.
    • CommentAuthordivvi*
    • CommentTimeNov 5th 2014 edited
     
    theres much debate on focusing on the present, and not allowing to focus on the past or future. lately with my DH's losses, I find that relishing the added extended time hes had in a relatively happy state during the past years, makes it easier for me to endure the inevitable forthcoming future. nikki hope your lynn is improving. you have fought the battle and your strength is all encompassing. hugs to you
  9.  
    Nikki I have been trying to respond to your last message, so very hard. Trying, trying, to think what to say. First, I hope Lynn is improving. And then, all I can do, is love you both, pray for you, hope for some kind of comfort, and that all of us here just hurt deeply, very deeply, for you. Please feel my heart and all my love coming your way.
    •  
      CommentAuthorNikki
    • CommentTimeNov 6th 2014
     
    I wanted to get on to let you guys know that Lynn ate today!! He even picked up his drink off the table and drank on his own. He ate more today than he has in the last 2 weeks combined.

    Other than prayers, I think I know what may have caused this drastic turn about....even though they were not suppose to, the staff stopped giving him the Nystatin swish and swallow. He was suppose to stay on it, 4 times a day until he saw the ENT tomorrow. Someone goofed and they stopped the medication. For once we are benefiting from their incompetency.

    I found out that the medicine gives some people a horrible taste in their mouth, metallic like. I am guessing this is what it was doing to Lynn.

    Something is still wrong with his mouth, he makes a pained face. I gave him Tylenol until we see them tomorrow. I sure hope they can figure it out and he keeps on eating!!
    •  
      CommentAuthorNikki
    • CommentTimeNov 6th 2014 edited
     
    Coco, you are such a sweet soul and I love hearing from you! Divvi, yes.. it is the gratitude for all the smiles and love we have had that see us through these harder times. Just this morning while picking up a prayer shawl from our church I was telling them how blessed we have been since the Marinol. How they told me back in 2010 that he had only months to live..... and how much I have treasured every moment we have had. And yes, above all, that his little world has been a happy one for him. Love you both!!
    • CommentAuthorMoon*
    • CommentTimeNov 6th 2014
     
    Nikki,
    Great news about Lynn eating. I hope they can clear up whatever is causing his
    discomfort so he can continue. You and Lynn have been blessed with all those
    additional days since 2010 - and I know you cherish each and everyone of them.
    My prayers are with you both.
    •  
      CommentAuthorNikki
    • CommentTimeNov 7th 2014
     
    Moon, thank you so much for the comment, support and prayers. I greatly appreciate them and you ((hugs))

    I am tired... I am copy and pasting this from my FB post........




    Lynn is going to be ok, but we have a battle in front of us. Before I go into details I first want to say how impressed I was with Lynn's doctor! He was amazing with both Lynn and I. He was full of compassion and he not only medically understood the challenges of Dementia, he understood it on an emotional level as well.... he told me, with tears in his eyes "someone I dearly love has Alzheimer's"

    For once, I felt understood, validated and a HUGE sense of relief just seeing the compassion in his eyes and the gentleness he showed Lynn. Truly just fantastic!!


    Long story short, after a thorough examination, including a scope/camera ,(TINY instrument, amazing!) in his mouth and down his nose to his throat and different swallowing testing to assure we weren't dealing with anything else... the doctor diagnosed him with Oral Aversion.

    He explain that after such trauma and pain that Lynn had with the severe Thrush (the scarring was just awful:( that it is not uncommon for this to happen in children and the elderly. Especially someone with Dementia who can not process.

    He explained because of the pain Lynn associated with the Thrush, he now does not want anything in his mouth! Not a spoon, not a lollypop, not a toothbrush... nothing! It has absolutely NOTHING to do with him not wanting food, he just doesn't want anything in his mouth.

    I ended up leaving the room in a hurry so I could cry... without batting an eye he followed me and showed me into a private room. I just couldn't let Lynn hear or see me cry.

    Again, the man was amazing.. he reassured me that it takes time, usually within 4 to 6 months, but that with patience and continuing what I have been doing with the coaxing, he might revert to wanting to eat again. He also couldn't stress enough, that if he didn't ever eat by spoon again, that he would not only survive, but thrive on the formula.

    There are things he wants to try to "try to trick his brain" into not perceiving pain with eating, and to also soothe his mouth. There is hope!!!

    Oh, and do you know how he got Lynn to open his mouth? I kid you not, he had me pinch off Lynn's nose!! I hid behind his chair so he couldn't tell it was me doing it! lol. So simple, yet brilliant! And it leaves me wondering why none of his doctors, dentist or nurses knew to do this?! It would have saved a lot of additional trauma to his poor mouth.....

    And on the note of "there is always something to be grateful for" He did tell me he has seen patients who wouldn't even drink! So we are very very lucky that Lynn is still drinking so well!
    • CommentAuthorMim
    • CommentTimeNov 7th 2014
     
    Nikki, so happy to hear some positive, encouraging news about your situation with Lynn. The silver lining......

    Thank goodness for this doctor! I am happy for you.
    • CommentAuthorMoon*
    • CommentTimeNov 8th 2014
     
    Nikki,

    So glad to hear Lynn had such a compassionate doctor.

    No wonder he didn't want to eat with all the damage done to his mouth. It is so sad when they can't tell you what's wrong and how much it hurts.
    At least he can drink, and hopefully he will try some little nibbles now and then until he's back to normal.
    Thanks for the update. Sending good wishes Lynn's way for a speedy recovery

    P.S. Does Lynn still have to use the Nystatin, or is the Thrush cleared up?
    • CommentAuthorLFL
    • CommentTimeNov 8th 2014
     
    Nikki, so glad Lynn and you found such a competent, caring man!

    I posted about 2 months ago that after a violent vomiting episode, my husband would not longer eat and would NOT eat at the kitchen table. I was frightened that this was a downward spiral. But I believe he also had oral aversion because he got so sick. He's back to eating 85% of what he used to and will sit at the table 90% of the time. I know Lynn will get back to his old routine.
  10.  
    Nikki, interesting that the doctor had you pinch his nose. I have used that trick on my wife several times, and it really works.
    •  
      CommentAuthorNikki
    • CommentTimeNov 8th 2014
     
    Mim, Moon, LFl and Marsh thank you for your replies, it is so good to have friends to talk with who understand.

    Marsh, you are more clever than I :) I wish I had thought to do it! But in truth even if I had, I doubt I would have tried it. Even with the doctor right there I was reluctant and even whispered to him, but what if that involuntary reflex is damaged and he doesn't open his mouth? He assured me he would. It was sooo simple and worked like a charm. As soon as we got back to the NH and got him settled I went down to the DON's office and told her how well it worked. I hope they have a training for the staff, it would save a lot of patients needless trauma and will make passing meds a good deal less stressful for all. I plan on telling everyone who works with Lynn about it! It will help a great deal in getting those toothette sponges in his mouth and I hope it improves his oral care.

    LFL, I bet that is exactly what happened to your poor husband. Poor little buggers...... I do believe Lynn will start eating again. He ate on Thursday, but didn't yesterday. BUT, if you can believe it, the NH and his doctor let him run out of his Marinol!! So, he did not get it yesterday morning, nor for his evening meal. He didn't get it until 9pm Pffffft! You can imagine how well THAT went over with me.

    The specialist stressed that once he did willingly eat again, that it was important to offer the same foods at the next meals, for about a week or so. (or until he accepts different textures in his mouth and again likes it) I will have a battle with the dietary accomplishing this task, but I am up for the fight :)

    Moon, the thrush is finally improving, but not gone. The doctor does not want to put him back on the Nystatin because of the bad taste. He was very hopeful that Lynn had eaten the previous day. He is going to try different things, one I recall was something called Magic Mouthwash. It has a number of ingredients the ones I remember are an antibiotic, Benadryl and Lidocaine. In the dose he will give, there is no fear of the Lidocaine causing choking. But there is of course a concern about the Benadryl making him even more lethargic. All we can do is do a trial run.....

    The doctor was not nearly as concerned about his lethargy, and lack of talking as I am. He said it is quite normal given the trauma he has been through. I don't believe in "normal". I am still deeply concerned that he may not rebound to where he was just a couple of months ago. His smile does light his eyes again (which I AM so so grateful for!!) But still, no activities that he use to enjoy, he hardly talks at all and when he does it is but a whisper. Poor little bugger! All I can do is continue what I have been, wishing, hoping and praying.....
  11.  
    Nikki, I am so glad I came to the website today. I haven't been for some time and have often wondered how you are doing Superwife. I am sorry that you and Lynn have had such a difficult time. Take care of yourself too, eh?

    Jan
    • CommentAuthorLFL
    • CommentTimeNov 13th 2014
     
    Good to hear from you jang*.
  12.  
    Thank you so much. I hope that all of you are managing in your journey. It is not a journey for the weak and if you are weak, you get stronger and tougher in a hurry. Take care of yourselves!!!!!!

    Jan
    •  
      CommentAuthorNikki
    • CommentTimeNov 13th 2014
     
    Jang! What a delight it is to see you here ((hugs)) How are you doing my friend? I hope life is being kinder to you ((more hugs))

    I wanted to update you all that Lynn has astounded us once again, he is rebounding beautifully! Slowly but surely he is regaining strength. He is able to talk again!!! Three days in a row upon seeing me his whole face lit up and he said "there's my beautiful beautiful" Awwwww! Just melts the heart ♥ He isn't back to his old self completely, but he is tinkering with his blocks a bit and he really enjoyed the music show we went to yesterday.

    This makes three times now that I have done the most difficult thing I have ever done.... While he was so sickly, I told him it was ok to stop fighting. I lied and told him I would be just fine and that I would see him very soon. The strength that took, I cannot put words to.......

    While I am of course ecstatic that it was not Lynn's time, it reaffirmed my belief that I have zero control. When it is his time, regardless of what I do or don't do, this is between Lynn and God. All I can do is love and treasure him for the time we have been blessed with.
    • CommentAuthorMoon*
    • CommentTimeNov 13th 2014
     
    Nikki,

    Great news. Happy for you to have some additional quality time with Lynn.
    How is the eating/drinking going - any improvement?
  13.  
    Hi, Nikki,
    I am so glad to know Lynn is doing better and that he knows you and smiles and tells you all those " sweet muffins" as Ozzie used to day...in your ears..: )
    Yes..you have the secret..enjoy each day you share..the rest is not something you have any control over at all...
    It is good to read you sounding so strong and firm and happy..
  14.  
    Nikki, you are absolutely amazing!!! I am sure that God will have a special place for you and Lynn when your times come.

    Jan
    •  
      CommentAuthorNikki
    • CommentTimeNov 14th 2014
     
    Thank you ladies ((hugs))

    Moon, to answer your question, he is still drinking fantastic but has yet to eat even one spoonful since last Thursday. As soon as he sees the spoon, he clamps his mouth shut much like a toddler would for medicine. The specialist assures me this is "normal" for the trauma he has experienced.

    He does however take the drinks off the table himself and drinks them. For whatever reason, his poor mixed up mind doesn't associate the drinking with the pain. I am very grateful for that!! Between the TwoCal HN and turning his foods into shakes, his weight is holding steady.

    He started the Magic Mouthwash (minus the Benadryl) today. Here is hoping it can trick his mind and that he will eat again.

    I am much less stressed about this than I was since the specialist told me he could not only survive, but thrive on the TwoCal HN... and that he is not lethargic and is much more responsive. One day at a time... and grateful for each moment we have ♥
    • CommentAuthordivvi*
    • CommentTimeNov 16th 2014 edited
     
    nikki this may be irrelevant but when my DH wont open mouth I try another utensil - ie a small plastic spoon or fork. sometimes the metal of a reg spoon can be rough to gums and lips if its not introduced slowly. just a thought as I find mine will open for a not cold small plastic one. and if all else fails I put bites in with my fingers! he usually opens for that but if you are pureed foods this wouldn't work. a note, make sure you don't allow him to feed with plastic cause they can break- unless supervised:_
    •  
      CommentAuthorNikki
    • CommentTimeNov 16th 2014 edited
     
    Hi Divvi :) Lynn stopped using regular spoons about 4 years ago. They were just too big and imposing for him. At first we used the coated spoons that the facility provided, but eventually even those seemed too large. For the past year or so we have been using the coated baby spoons, they fit his mouth perfect. You are right (of course :) in that if he won't eat with one utensil, it is good to try another.

    He is on pureed foods so what I have been doing is just turning his food into shakes. He will often drink these on his own. He is still having some pain, you can just tell by his facial expressions and the way he "rolls" his tongue around his mouth. Poor little bugger....but thankful he is drinking amazingly well. Whew!
    •  
      CommentAuthorNikki
    • CommentTimeNov 16th 2014
     
    Oh, and he has started taking bites again, Yay!