I know I am overly emotional right now, but truly your comments moved me to tears....
I had to get on to let you know that Lynn has not spiked another fever.......he ate 100%, drank on his own, is talking up a storm and even sang me a little song (about his butt, but still ..LOL)
I do know it could spike again......but I have a real good feeling. :)
What I am not sharing on facebook......during dinner he said to me "I thought I might die...(long pause) but you were there......and now I am ok "
Holy crap!!
When he was convulsing this last time....I told him it was ok to be tired,...that he didn't have to fight so hard....that I would rest with him....
Hardest words I have ever said.......
But he told me "No, it's ok"
I whispered soothing words, no idea what now....but he kept saying...I know...it's ok.
Could hardly speak from the force of the shaking....but I felt he was trying to comfort me......... I still believe he was. Nobody will ever, EVER convince me they are not still "in there"!!
He is sleeping very content! I have yet to sleep but I am feeling secure enough to try to get a cat nap in. Again, thank you so much for your prayers, support and kindness! ((Hugs))
Nikki I continue to pray that Lynn is over the worst of the illness. Try and get some rest. What a wonderful world it would be if all loves were as beautiful as the one you and Lynn share together!
Nikki, so glad to hear things have improved somewhat with Lynn. I, too, believe they are still inside themselves, and every once in awhile they show us that inner self. I will keep praying for strength for you both.
Just saw this thread. My prayers are with you both. Now is the time for you to rest, let God watch over him while you get some shut eye, Lynn would want that too. Yes, I believe they are still in there too. Bonnie
*sigh* he has spiked again, even with tylenol every 4 hours. I know fevers often spike at night, so not shocked, just stressed. He is still in good spirits though, grateful for that.
Just got in the door from a town trip and ran in here to check out this!!! Oh Nikki oh what a deep heart and soul wrenching trauma, and to have Lynn being so beautiful and profound through it all. I pray and pray for an outcome where he recovers. YES YES of course they are still "in there", more and more I see that with Dado. You have helped me so much in our journey Nikki, I only wish there was something I could do. I also know, that if Dado had pnuemonia, I would have it treated, at least at this point.
(((((((((((((((((((((((Nikki and Lynn))))))))))))))))))))))))
Waiting on a morning report from Nikki----hoping Lynn is improving and that she caught a little nap. Good thing that hospital room is soooooo big--so we all fit in there beside Nikki and Lynn-----
Nikki, hope you had some time to catch a nap and get some clean clothes. I am praying that Lynn's night was better and he is finally over the spiking of temp and on the road to recovery. I too would treat the pneumonia, no question about it. You and Lynn are such inspirations to us all, thank you for your love and kindness in helping us through our journeys. I only wish there was more I could do for you and your beloved Lynn. For now (((HUGS))) and prayers, my dear friend.
It's strange for me how clear the communication is. Lynn from Nikki's comments is aware and able to manage the information that Nikki is there, that she really cares and is helping him, that he clearly lets her know not to worry like this that "it's ok" - in other words he's fighting it and has no desire to give up.
It makes me wonder about Marinol where I suspect Lynn's demographics fit with this or perhaps he would be this clear anyway - where Nikki's narrative has been quite unmistakable that it centered around taking the Marinol.
Whatever created this unusual (IMO) awareness, I'm certain it's helping Lynn to fight now and he has a blessing if I'm understanding what I believe I'm hearing. He knows that this young thing (who he's had much of his life) loves him for what he is - even now. I understand the age differences mean nothing and I agree; but, they are real and I believe I'm hearing that Lynn is not only aware but also deeply appreciative that the love is what is real above all else.
If that is not a blessing then I don't understand that word. We're pulling for you Lynn and Nikki.
Nikki, I've been following this everyday, no comment till now - and I still don't know what to say! Like Lulliebird, I believe the Lord is in control, & like Ring, I find your devotion beyond humbling. Actually, I'm a little envious of the love stories of you & Lynn, and Joan & Sid. I am so happy for both of you that your marriages have been so fulfilling. You have been blessed! You keep helping Lynn to fight the good fight - I'm pulling for you! Hope this comment doesn't sound too weird - sometimes when I read what others go through & what others write, it touches something deep inside & I seem to have a difficult time expressing it (which is odd,because I've never been one to be at a loss for words!!)
I want to say so much...your comments have touched my heart ((hugs))
I will start with the good news, though Lynn did spike throughout the night, it was not as severe and he did not need ice packs once! Acool washcloth was all we needed to use.
He ate 100% of breakfast and is in good spirits. Is back to reading the commercials on TV and is looking soooooooo much better. The sparkle is back in his eyes...and I am so damn grateful that I weep at the silliest things......
My sister brought be a change of clothes, ahhhh. I was able to sleep a solid 3 hours, which felt like 20! When I woke they told me though I was sound asleep, when Lynn woke and talked to me, that I was replying to him in my sleep. I guess I am really tuned into him :)
His white blood cell count (that indicates infection) has dropped even more, he is winning this battle!!
I would like you to know that each of your comments mean so much to me. We often feel utterly alone, and it is this reaching out to each other that helps so greatly in moments of crisis. Truly, thank you so much!!
Coco, I love you too <3
Wolf, you made me cry......even when he was so so lost to me, eventually( and sometimes it took hours) he was always able to respond to me in some way.....almost daily he could manage an I love you.
To me Marinol has been a miracle. The before videos shows just how lost he was..........I thank God every day for giving me the courage to fight to get him on it. He still barks with his plush that he believes is real....he still talks gibberish at times...he still doesn't know his own children.....etc etc....but he can comminicate now, and you all know what a gift that is!
Nikki--your comment about Lynn still being "in there" started the tears. I have no doubt of that, as I see it every day with Steve too. It is a testament to your love that he still recognizes and responds to you. You are his angel--and I'm sure that you feel the way I do--put on this earth to watch over them in their helplessness. Go get yourself a treat--for me it would be chocolate and/or flowers--you sure deserve it!
GREAT news--- now you get some much needed rest-we will be here when you wake up....glad the room is big,that way the staff will not even notice all of us around you and Lynn. Prayers continue to come your way.
Great news Nikki. I don't know what to say, just that you and Lynn are an inspiration. Bless you both, prayers, and thoughts for you both continue your way.
Lynn is doing. Amazingly well! His white cell count is normal...wooot! Just a mild lowgrade fever last night (100.4) I brought him in some stimilation activities, flash cards, blocks etc. He is acting like he was never even sick! His rebound abilities blow my mind....
He will be released tomorrow...*doing a happy dance*
I loved bak's comment. I have a drawing of a person who is ill, in bed, and is surrounded by the supportive spirits of animals that person cared for. It is very inspirational to me as the type of person I want to be.
Anyway, that's why bak's comments brought a tear and a smile.
Just checked in to see how Lynn was today, and so happy to read your wonderful news. It is amazing that he has that kind of stamina. Enjoy the good moments!
Glad to hear about discharge on the 'morrow... I can't believe nary a complaint from you about the hospital furniture you've been sitting/sleeping on these past few days. I think the Marquis d' Sade designed all hospital seating. Happy for you!
LOL Marty, at 1am when I was sure Lynn wouldn't spike a fever I told the staff I was headed home for a few hours. I didn't notice how uncomfortable the furniture was during our crisis, but tonight by butt and back were crying out for relief. Lynn will sleep through the night so I came home to sit on my comfy couch for awhile, ahhhhhhh Much better!
I was going to attempt sleep, but I am fearful I will oversleep. I want to be there for the 5:30 blood draw, he does much better if I am there to help. It will be nice to get him out of there and away from those vampires, I can't believe how much blood they take!
I got home, played with my dogs for awhile and then took a nice hot bath. It was so nice! And I was taken aback when sitting there in bliss I started bawling. I know it is from being overtired and my emotions are just spent! But still it surprised me and I couldn't seem to stop the tears. A lot of it is relief too I imagine.
It was thinking about his last convulsion episode, when I was telling him it was ok to let go... that triggered the tears. When I was having my first brain surgery Lynn held my hand and sang the song "Love, Me" to me.....
"If you get there before I do Don't give up on me I'll meet you when my chores are through I don't know how long I'll be
But I'm not gonna let you down Darling wait and see And between now and then Til I see you again
I'll be loving you Love, Me."
I held his hand and sung it to him, how I managed to not break down I do not know. I did NOT want him to go... I know I will lose him and that I will never be ready... but I felt it was the right thing to do, that I had to do it, for him.
Here's the thing about treating or not treating, it is my belief that when it is his time, God will call him Home ....regardless if I give him an antibiotic or not. I will always treat for something a simple pill can treat, that isn't what I struggle with. He clearly is not ready to give up, his body is still strong and he is determined to fight. He has always valued life, so I know I did what was best for us.
It was just difficult to see him struggle so, and I felt I needed to let him know it was ok to not fight so hard...... I will admit I was so relieved when he said "No, it's ok"
I am tired and emotional, I have so much on my mind. And one thought is that though indeed this disease does suck! to me, it is not the worst thing that can happen either. Have you ever seen someone with ALS? Have you ever have a loved one have incurable cancer, and it took a decade for them die? The whole time they were suffering, they KNEW exactly what was happening to them..... Countless diseases are torture for the patient and the family. I am pretty sure they think their pain is valid and greater.
I am devastated that Lynn has Alzheimer's, I am crushed that THIS is how our fairytale is going to end...... but I am so happy that Lynn does not know what is happening to him. It was pure hell when he did, and that his little world is a happy one, well .. that brings me peace.
No matter what happens I will always have deep gratitude for these past 3 years with Lynn. The peace of seeing him so content, far outweighs the torture Alzheimer's has inflicted. Every single day there is love and laughter, hugs and kisses. So many tender beautiful moments....I am so thankful for this precious time!
And that leads my mind to remember something my Dad said to me soon after Lynn was diagnosed..... "have you ever thought that God is not being cruel? Did you consider that He knows how much you love Lynn and that maybe this is His way of giving you the time you will need to say goodbye?"
At the time I was full of rage and could not see the kindness he was trying to share with me.... Now mostly healed and feeling blessed, I hear Dad saying those same words to me.... and I smile as I recall the tenderness in his voice, the kindness of his heart, the compassion shining in his eyes.. and I think you know what Dad? I do believe you were right! A love this great requires a long time to say goodbye to. And how damn grateful I am we have been given this time ♥
And now I am going to take a loooong shower then head back to the hospital to spend the day with my sweetie ♥
Thank you all for your continued support and prayers, they are greatly appreciated! And Bak, all of your comments have made me smile :)
Nikki, thanks for posting your Dad's words about needing the time to say goodbye. Watching Steve's sloooooooow decline, I have had that feeling in my heart, but your Dad expressed it beautifully. I also think of it as more time to show him how much I love him...somehow, I think he still feels it.
Nikki, how utterly beautiful. Please give Lynn a greeting from his friends in cyber land. And please take all the love you can, from this friend, that feels like she really knows you.
Nikki, thank you for taking precious time away to share with us on these boards. You are truly a role model for me, in teaching me how to care for my sweet man while he is in placement. Your Dad's words have given me another gift today. I hadn't thought of that, but now will. This is a gift I'm being given, this time to say goodbye to him with all the love I have for him and as he deserves. I continue to hold you and your Lynn in my thoughts and prayers.
Hope by now you have Lynn all settled back in his room and that you got a little rest in between time..... We will all back off and maybe not hoover so much now just remember when you all need us we will start coming out of cyber space to help!!!!!!!!!!!!!! Just as you do when we need some extra love and prayers.
Nikki, I have had trouble signing in these past few days...maybe it was Ozzie keeping me off the site or something..who knows. I have been following your saga and am happy to hear Lynn has improved and you are getting some rest. You are strong and I know you are doing everything in the best way for Lynn. He knows it too.
Thank you all so much! For the last couple of years Dad's words have echoed in my heart....
Lynn is doing well, still so tired... but it is hard work fighting so hard! He is still eating 100%, laughing and telling made up stories. I am being extra careful to not overstimulate him because as much as I love to see that sparkle in his eyes and that beautiful smile, I know he needs to rest right now.
Fiona, I have been moved my many of your posts... I think you are pretty special and I know that gentle heart of yours will help you greatly!
Nikki, so glad Lynn is doing sooo much better and you've had some rest. Yes, your fathers words are inspiring...gives me a whole different way of looking at our journey. Thank you so much for sharing something so personal.
Nikki, I have cried through all these posts. I haven't come to the forum for about a week. I am so sorry for all you and Lynn have gone through again. I am glad that there was a happy ending. You are amazing and incredible. You are an AD wife after whom all should attempt to fashion themselves. I wish I had. My thoughts and prayers are with you both.
I am sorry I haven't updated sooner, I honestly thought I had! Geeez I am tired......
I am pulling 12 hour days at the nursing home, between that and the previous 24/7 at the hospital it is starting to wear me down.
Lynn is doing better, he is out of crisis, but he has been scaring the bejeebers out of me..... turns out he has Apnea, the kind that happens when you are awake as well as asleep. I know what Apnea is, but I wasn't sure what we do about it. When asking a registered nurse about it, her reply to a near hysteric wife was "often they never breath again"
You can imagine how upset that made me! She didn't explain Apnea to me, she didn't explain what usually happens, she just jumped into the fatal aspect of it. I spent most of that day and evening in panic believing that at any moment Lynn could draw his last breath....
His doctor called me that evening after she listened to the message I had left her nurse. She was so compassionate and assured me that though that might happen someday it was not happening tonight! Or anytime soon. She is also a Hospice doctor, she spent a great deal of time talking to me about it, what it means, how common it is in the elderly and how she felt it could also be due to the respiratory infection he is fighting.
Which he is beating! He is doing better each day, but he is of course still tired. It all frightens me because his lungs are his one weakness. His heart is strong and healthy, he has no other complications at all.
I spent the better part of this week having a raging battle within myself.... should I renege on the DNR? Because it's not his heart, he might just need respiratory stimulation while he fights this.... should I put him through the sleep test and hook him up to CPAP machine and put him through wearing a mask?
Turns out no, I can't do any of those things. I think of the fear it would cause Lynn to wear such a mask and I just can't do it. He is temporarily on oxygen, just to help until the cough is gone (standard procedure with Lynn for the past 4 years) and just seeing how that irritates his poor nose troubles me. So no, I couldn't do it. The DNR, that was a struggle..... the doctor talked with me again, Hospice came in to speak with me. Once I realized Lynn would NOT struggle for hours, that if it happened it would be quick......then I had more peace with it.
What we must do is almost too much to bear at times. I have cried more this past week than I have the past few years combined!!
I cannot live in the "what if", I choose to instead be damn grateful for what we have right here and now. He IS feeling better, it just takes him longer to rebound now...he is back to building with his blocks, is eating very well, smiles that beautiful smile that lights even the darkest regions of my battered heart.
I am also busy with meetings trying to improve some issues at the nursing home and I have been writing and talking with our governor and senator's about the need for LNA to patient ratio laws. I just haven't had the time to keep up with the board and all your messages. I hope life is treating you kind ((hugs))
This made my day hearing from you, (and Lynn), Nikki. I cannot tell you how much you mean to me, you really do and huge hugs and prayers and sadness and happiness and everything in between. God it is so true it is almost too much to bear. Thank you SO MUCH for updating us!!!