I dont have a lot of time, I want to get back in the room with him... but I wanted to let you know that Lynn is being treated for a Pulmonary embolism.... I was with him and I just KNEW something was wrong. I know they thought I was over reacting, being over protective, but my gut and heart was screaming something other than "just another AD symptom" was going on. Thanking God I followed my heart ♥
Have been here for over 12 hours now. He did amazingly well!!!!! He had to have a bunch of test but was wonderful for all of them. They let me go in and hold his hand, as long as I was in his line of vision he was fine and full of smiles and kisses. He is stable but will need to be monitored for a few days. Hospice has been called in to evaluate him as he will need his blood tested at least twice a week at first, then once a week.(because of the medication to thin his blood) The nursing home doesn't draw and test blood, Hospice does! He is resting peaceful and I will of course be staying with him. Please keep him in your thoughts, and if you pray, in your prayers. Thank you!! ♥
Nikki--both you and Lynn are in my prayers. I hate to be dense but what symptoms did he have that alerted you? I'm scared that I'm going to miss something significant.
Blessings to you and Lynn and I pray you are able to get a good night's sleep. Sounds like Lynn is resting comfortably. Now, it's your turn. :)
And he's in our thoughts too. Come on Lynn, you can do it.
I'm up in Ontario and we get lots of snow. My 84 year old neighbor has had all kinds of things happen to him and he can still shovel snow faster and longer than I can. He loves to come over and help me finish. I'm 59.
Another friend's mother just got married. She's 92. Her beau has had some serious operations but at a sprightly 87 he looked just fine at the wedding.
The best story is my MIL's lifelong neighbor across the street. Her husband was my cubmaster. When he died her highschool sweetheart waited 6 months to the day and then called her. Both in their mid 80's and yes they got married.
Just telling a few short stories. I'm pulling for him.
Thank you all so very much for your thoughts concerns and prayers, I didn't know I how much I needed them until I just read them ♥ WOW has been such an emotionally draining two days. You think you are ready, but damn, it seems I never am! I always feels completly blindsided acccccck. Is a bit worse than they let on yesterday, after more testing they found not just one but "some" clots in his lungs. Lucky, they are small enough that they are not causing him resp arrest.. thanking God!
I told the nurse at the nursing home, I have watched my husband breath for 25 years, I have laid my head on his chest enough to be intimately aware of his heartbeat. I was sitting with him and he was sleeping, I was watching him breath as I often do and I noticed his heartrate seemed faster than normal. I mentioned it, and was told someone would come look at him soon. Lunch came and I was feeding him, I can pinpoint the exact time the clots must have hit his lungs... he didn't have a huge reaction, (in fact the doctors were all shocked I noticed something was wrong) but he did put his head on his hand and take a deep breath, and again I could see his breathing was faster than normal. This time people came ASAP, they check his vitals and went for oxygen...they were sure it was his heart...... then I was asked " do you want to do comfort care here, or do you want to try to send him to the hospital"
You can imagine how I reacted........... oy I am so not ready for this. I said I just couldn't give up on him, I couldn't make the call to not treat him ... if I didn't know WHAT we were not treating. What if it wasn't a heart attack? what if it was something that required medicine and not an invasive operation? So as with the feeding, I followed some great advice and followed my heart. Glad I did!!!
When I got to the ER I had to meet with the doctors about what care I did want, and didn't want. I was told that what I wanted over-rode Lynn's living will because I was his wife and legal guardian. ACCCK! I didn't know that!!! I thought I HAD to follow those orders, turns out no! God that was so hard! I told them that I would hold to Lynn's wishes, if it was his heart, no surgery......... if it was something that medicine could fix, and he was not in pain, I wanted him treated. I was a basket case waiting ALL those hours for the final results. A time made more difficult because Lynn was even extra loving. He even said something, I wasn't sure what so I leaned closer and asked "What sweetie?" He then reached up and pulled me down to his chest for a bear hug, and said clear as day, I love you baby........ even the nurses had tears in their eyes!!
I love you too baby ♥ How can you just let that kind of love go? I can't! I feel so much better today, I was filled with guilt, am I doing the right thing? will going to the hospital, having all those tests frighten him? stress him? Turns out no they didn't. He was calm and relaxed and at times he nodded yes or no when they asked if they could do something to him. And now I know the answer to the question that has been eating at me, .....can he tell me if he has pain? Turns out YES he can. He even muttered a G-Damn it today while he was being changed. They had asked him if they could change him now, he said no... but they went ahead anyway.. he let them know what he felt about that! LOL.
He is still "in there" somewhere. He is locked away about 90% of the time... but that other 10% when I am kissed over and over, and told I love you....... it could make my heart explode with pure happiness. ☼
WOW, man did I ramble on... tired and not even going to reread or correct spelling. going to take a bath and then climb into bed! Thank you all for being here for me ♥ ((HUGS))
...and I had tears in my eyes reading your post, Nikki. Hope you got some rest last night and that today you get another bear hug and "I love you baby" again....prayers for you and for Lynn.
Oh, Nikki, I so understand. It will be so hard for each of us when that moment comes. I think you were right to have the evaluation. My thoughts are with you.
I've been away too, Nikki, but thankful to read that you are making your way through this and that you were able to advocate for Lynn and KNEW when something wasn't right. Additional hugs from here too.
Thank you all so much. Truly it means a great deal to me <3 Lynn is doing well. They said his blood levels are right where they want it and were pleased with all his tests results.
They did find that kis right kidney is swollen but his kidney function is excellent. If its not broke, don't fix it lol ...so we agreed to just let it be, no more testing for that. The doctor said he could have had it all his life. No way we could know he has always been healthy. In fact this is his first hospital stay since he was born!
He gets the cath out today. Am glad for that, bet he will be too! Oh! And this doctor stopped the megace (the appetite stimulant) hefeels this caused this episode and lynn is eating well..and at this stage isn't fighting feeding...let's see how he does without it. Can always add it back if need be. I like his thinking!
I will stay until about 8 tonight. I know it is a long time..but I need to be with him. I have been staying about 12-13 hours. They have one of those chairs that turn into a bed for me so we take a nice nap hand in hand. I need this time right now. I wish more than anything I could bring him home. But that would be so unfair to him...I have to love him enough to do what is right for him....I tell myself that over and over...
It looks like Lynn might be discharged tomorrow!!! His recovery is going wonderful, much better and quicker than any of them thought. I bet his butt and poor back will be so grateful to get back into the special bed the nursing home has for him. Those hospital beds are sooo uncomfortable! And he lets us know it too LOL
Well............ yesterday morning I went in fully expecting Lynn to be discharged. But, when I went in to see him I could tell he had a fever before I even touched him. His cheeks were bright red, as was his chest. I went to get the nurse and she said, no he doesn't have a fever. I said.. yes he does! And she again said, no you are mistaken, he doesn't. And I... ripped her a new one!!! (needless to say, she is not Lynn's nurse anymore!)
Yes, he had a fever. In 25 years he has had a fever just a handful of times. He has always been one of those people who sneeze once and the cold is over! Very healthy. They treated his fever and it did break, but he has been very lethargic. The whole damn medical proffesion seems to think just because someone has late stage Alzheimer's, they shouldn't be treated. Where the hell is the compassion! I don't know where this attitude came from, but I for one am fed up with it!!!
I am so thankful for the doctor who has been treating Lynn. He treats Lynn like a person, not a disease. I said that to him today. And I told him, you are the first doctor I have seen here who isn't always asking me, "do you really want to treat him? or do you want just comfort care" And his reply moved me. He said, "I have seen many people in late stage Alzheimer's. But I have yet to see someone as advanced as your husband still be able to express his love as your husband does. I have seen first hand how you two interact, I can see how deeply you love each other.. and I can understand why you wouldn't let that go. He isn't ready to leave you, and we will fight for him until that time". I am not ashamed to say he had me in tears. FINALLY a doctor who understands!!!
He ordered more tests and decided he is not ready to be discharged. As a precaution he has him on two different antibiotics until they can figure out what caused his fever. He isn't himself yet, but he is getting better. I am not sure when he will be released.... we are still waiting for some test results, like the blood cultures that can take up to 72 hours to get back, and he wants to run a test on the viens in his legs (can't think of the name at the moment) to make sure there aren't any more clots.
He is getting excellent care and is resting comfy. He did a lot better tonight, ate very well and interacted with me for a solid straight hour. Not a lot of talking of course, but I was just so relieved to see his eyes open! Was a scary couple of days..... will let you know more when I do. Thanks for being here ♥
Nikki, I would think the test for the legs could be an ultrasound or angiogram. If it is an angiogram, some twilight meds are given to prevent too much discomfort so check carefully on what kind of test it is.
As to the fever..my uncle who had AD seemed fine in the morning and by afternoon he spiked a fever. To this day I don't know what the cause was. He did not survive the day. Perhaps it was kidney problems or UTI or something. He was given tylenol which broke the fever but it came back.
And to the medical professionals...when he was on the more skilled floor there was only one nurse who was understanding..it was my uncle but the directions listed his sister in law as the one to be notified..I was not suggesting that they not do that but asked to be called too. The one set of nurses ( from the Philippines) was uncooperative..the other nurse..a lovely African American nurse was the one who was compassionate...she was the one who called me with the news of my uncle's passing, she allowed ME to call my aunts sister first so that in the morning she could take the news to my aunt rather than my aunt get a call from the hospital...I then called this nurse back, told her our conversation and then she made her call which was required by law...to the sister in law of my uncle. It went well but hat the first set of nurses been on deck. I would have found out the next day.Thankfully you too have an understanding doctor for your husband who takes care of not only him but you too.
Thank you ((Mimi)) you have helped me so much this week!!! ((hugs))
Hmm it must be the ultrasound as I said I would not do any tests that could cause him pain or were aggressive. they said it was a simple test, non aggresive and painless. it is just to make sure there are no formed clots in his legs.
I am trying to find words for how I feel.... let me just speak from my heart and see if it comes out right....
I know and have known all along that Alzheimer's is fatal. I do know that in stage 7, Lynn's time with me is limited. I am not trying to hide from this cold truth. I have faced it, I hate it!! But I know what will happen eventually...... With that in mind, I would not treat him for something that required aggresive treatment or surgery. Like I told the doctor in the ER, if it is his heart, no surgery. I would not put him through anything painful.
But a simple dose of antibiotics? Yes, of course I will do that. I can not understand why they would even ask me if I would!! He is not in the "comma state". He can still tell me he loves me. He still wants lots of kisses and loves to hold hands. He still eats great and flashes a smile. I feel they do not even look at the person or their condition. They just see the charts, see Alzheimer's and call it quits. It sucks! and they need to start looking at the people as if it were THEIR spouse and not some statistic in a medical book.
Nikki, I wanted to add the love the doctor sees between you and Lynne was seen also between my aunt and uncle..he may have forgot her given name but never her pet name he had for her. For some, this is a rare gift despite this disease.
Nikki...I haven't been around much, and I missed this discussion. You truly are Lynn's gaurdian angel! You're a true inspiration to me, and many others. Sending you tons of (((HUGS))) Love you, girl! Keeping you both in my thoughts and prayers!
Lynn was discharged today! He is doing wonderful! Even the doctor was shocked at the difference in him today. It is amazing the difference one day can make! He was awake and even alert for a couple of hours this morning! He ate great, his stats are fantastic. They still do not know what caused the fever but they believe he has bronchitis. His lungs look great though. So along with the other antibiotics, they added another one for the lungs.
All of his tests came back great. Heart strong, lungs looked good, nothing showed up in the blood. It seems between the pulmonary embolism and the bronchitis he was just plain tuckered out! Once the antibiotics were in his system for 2 days he perked right up :D
He loves being back in his room. He looked at all his photos on the wall, pointed and smiled. You can tell he is so much more comfortable in his special therapeutic bed. He ate all of his dinner and then said "more please" lol. Music to my heart ♥
*big sigh of relief and happy happy tears* I got lots of smiles, tons of kisses, and a few I love yous... it was a GOLD STAR DAY! :D ♥♥♥
My goodness--I'm such a novice. You have to be exhausted-but pleasantly so. I'm honored to have been able to read your story. Thank you for sharing it. I am really happy he is better and I'm prayng you will be able to get some rest.