Last night we went out shopping and to five guys for a burger. When she went to bed she was doing normal for her.
This morning I woke at 3:00am either from a noise of smell, not sure which. I found Kathryn walking around the living room with poop running down her legs and not knowing where she was are what was happening. I got her cleaned up and back in bed and then spent the rest of the night cleaning the house.
She got up again at about 7:00am acting as if she was in pain but I asked her if she needed to go to the bathroom she nodded yes. I sat her on the toilet and she did go. I lead her to the sofa and got her to sit down and she went to sleep. When I woke her again she was unable to walk and now can't eat or move even in bed on her own.
I took her to the hospital and they have been doing test all day. They tested her a UTI, blood test and have done a CT scan and are doing a stool culture now. They have not found any infections but have said she has pneumonia in one lung.
She is at this time running a temp of 103, She is unable to move and isn't eating or drinking. Can only say one or two words if she talks at all. She doesn't remember me and is unable to answer any questions other than what her name is. She will shake her head no if she is asked if she is in pain but will yell if you try to move her. This may not be because of pain. She may think she is falling. Stool is flowing non stop and they are going to insert a tube to help handle it.
She has been in a steady rapid decline all day.
I am hoping they find an infection because that would provide a reason why this is happening and could be treated. I am scared they will find nothing to explain it and that it is the Alzheimer's causing it.
I have never cried as much as I have today. Kathryn is a part of my heart and this hurts so much.
We're here with you. I hope they find a reason very soon which they can solve.
Keep breathing. These are tough long moments overflowing with stress. Watch yourself not her. She's where she needs to be and they're working on it. Find ways to get through the waiting because you have to keep top of mind that you're under terrible stress right now and we don't need anything happening to you.
How sad. She is in the right place and I am sure she will be cared for and you need to take care of yourself. Hugs and Prayers for you and your spouse.
Thanks for allthhe pozitive words and prays for Kathryn. This morning she knew me ans was talking. Everything else remains the same They are working on her so I.grabed sandwich and did this.up date. They still are not sure about the infection and puting her in a private room to make sure one carriesanything else to her. her fever had broke during the night but is making acome back so they are working to get it bqck under control.
Jim, So sorry to hear about your crisis. My thoughts are with you both and hope it is something treatable. It is the time of year for so many bugs. Wishes for a speedy recovery.
Jim, you've done your best fo Kathryn always. You have her in good hands now,so please take care of yourself. Get whatever rest you can. Sitting on the sidelines waiting can be as wearing--or more so--than being hands on in the fray. Prayers coming your way.
Jim, Kathryn is where she should be at this time. Take care of yourself while they take care of her. I know how hard this is for you. My wife was in the hospital twice with pneumonia.
There is a commonality amongst us. Through you and others I see my BJ's future. I wish you strengh and hope one day we all can look back on our efforts with love and understanding and be at peace.
Jim, Continued best wishes to you! We are both 58 and we are dealing with similar issues. . It is a cruel disease. You seem to be doing everything that you can possibly do. Hope you are getting some support.
Jim..one of the most frustrating things about this disease is that there is so much variation from our spouses, and each one is unique in their decline. Kathryn's symptoms reminded me of what Audrey went through, and the changes seemed to happen overnight. Sometimes the decline seems to be from some medical problem, but at other times it is just the course that alz is following. Kathryn seems to be undergoing the same decline that my dw had, and I can only offer you my support and tears. You are in for a very rough time, and I urge you to try to stay positive, and find something to smile about...It is extremely difficult to watch this disease progress, and often times we wonder if it is a medical problem, or just the progression of the disease. I was fortunate in having a dear doctor ( a gynecologist) who made a house call to help me figure out what was going on...I also had another doctor (pain specialist) who came for a house call, and helped me tremendously. They freely gave me medications and advice, but both pretty much told me that they believed that alz was responsible for all the problems. I have cried enough to fill my pool, and now that she is gone, I am bitter about not being able to change the course of the disease. We have been robbed of some of the best years of our lives, and our enjoyment has turned to complete devastation. I urge you to turn to God as your source of strength because none of us here have the strength to make it thru this disease (yeah damn disease)... I considered myself a pretty good caregiver, but I now realize my failings, and I would give anything to start all over...Only in giving yourself totally can you feel any pride in handling this disease...And despite your best efforts, the progression continues, and there is NOTHING you can do about it except cry. The end result is always the same, and the only difference seems to be how much you cry and grieve....and the pain will never go away... My prayers are with you, my friend, and I am here for you in any way possible......HUGS (man-hug)
I went back and read what you wrote about what Audry was going thur. It is amzing how simular this is to what you went thur.
Kathryn is doing a little today. Last night she removed her IV by accident. She automatically folds things with her hands all the time and last night it was the IV. This morning I was able to get her to eat a couple of bites and she knew who I was. She does seem to be doing better. Looks like she will be in the hospital a while longer because her white blood cells are very low and they have confirmed she does have pneumonia in her left lung. Any body that goes in the room is required to dress in a special gown and gloves to protect her.
Things are looking up just a little but right now that little seems like a lot. I have asked for a little time with the doctor later today so I can ask questions.
Phranque - Yes, we all (or at least I do) recognize our failings as caregivers. But, I have forgiven myself because I did not know what I was dealing with. If I knew then what I later learned about AD, things would have been different in my caregiving--but I didn't know. It's the rare CG who understands it at the time. That's one of the reasons I stick around and write a column about AD. If I can help someone understand what they are dealing with, then it gives some value to the travail my DH went thru. We may think we're in control, but none of us have any control over AD. When the best you can do is the best you can do, then the best you can do is enough. You did your best--and then some--and don't argue the point with me!
Anchor 20 - When DH was in the hospital, he played w/all the IV's and lines--he looked like he was caught in a giant spider web. He knew me, but thought he was in a hotel. It was daunting, exhausting. I'm glad Kathryn is doing better, but you take your care of yourself and rest whenever you can.
Things went from bad to good to confused. I have no answers about what happened during last four days, neither does the hospital or doctors. The only good thing is Kathryn is home and doing ok.
Last night at 9:30 a doctor came to Kathryn's room and stated she was ok and he was signing her discharge order and she wasgoing home in about an hour. I was so happy that everything was ending good. Then I asked him a question. What happened?
This doctor said all of her test were back and there was no infections and she did not have pneumonia and there was no reason to keep her in the hospital any longer. I asked him what happened again and her said she was admitted for diarrhea and that it was now no longer an issue. I informed him that she was not admitted for diarrhea that the diarrhea was just no small part of what happened and I would like some answers that covered everything. He asked me what she was admitted for and I proceeded to tell him. When I finished I told him he should go read the chart.
When he returned he said again that the good news was she was better and she was ready to go home. I asked him "what about the rest"? He said they were wrong. There was no infection or pneumonia. I asked again what happened? He said he didn't know. I told him that wasn't good enough and that I needed some answers. He said there were none to give that she didn't have a heart problem and had none of the systems of a stroke and started talking about how a stroke would affect one side of the body and we would see a slack mouth on one side and some loss of strength on one side and we were not seeing any of that.
I was standing holding their education sheet for check out and looking at the part entitled STROKE: WHAT YOU SHOULD KNOW AND IT SAID THAT i HAD BEEN EDUCATED REGARDING THE SIGNS AND SYSTEMS OF STROKE AND WILL CALL 911 IF THERE ARE ANY OF THE FOLLOWING WARNING SIGNS. Sudden weakness of the face, arm or leg. Sudden confusion and/or trouble speaking or understanding. Sudden severe headache with no cause.
I read them to him and told him those are the same signs she had when she was checked into the hospital. He said in her case they were from her dementia. I asked him how was able to tell? That her problems when she was admitted were ten times what the were the day before. He said because of her dementia he knew they were not caused by a stroke. I asked him if he had test that told him that or did he think that someone with Alzheimer's could not have a stroke.
He then said if I demanded an MRI he would make arrangements for her to come back and get one. I said I didn't know if she needed one or not and that he was the doctor and he shouldn't be asking me if she needed one that he should know. He said she did not in his opinion and that he was checking her out and he left.
When the nurse came to do the check out I told her I was not signing anything and that I wanted them to call another doctor up there that I wanted a second opinion. You would have I had slapped them in the face. Nobody knew what to do. It was determined that they couldn't get a second doctor. They said I would have to check out and start back at the beginning which means I would have to go to the emergency room and wait to be seen again there. I then told them that I had no confidence in the doctor that he didn't know anything about Kathryn's condition and was blindly checking her out and that I took her home and something happened the s..t would hit the fan.
They said they would see what they could do and said to go ahead and stay there but they would have to put all the tubes back in if she stayed. I asked them why they would need to do that. That if they sent her home there would be no tubes. Now I was started to get a little upset so I told them here is what you will do we will stay as you have suggested only without the tubes and I would have Kathryn get up and start walking while we were waiting I would have her go to the bathroom and see how she does and while was doing all that they would get hold of a doctor.
During the night I did have Kathryn up and walking and using the bathroom and she did ok. They never did get another doctor. AT 10:00 the next morning we did go home. However I left a note for the hospital administrator that I wanted to talk to him in person about this doctor on Monday with my phone number. They said that he was very busy and may not be able to get to me right away. I said that was his choice. Either I could come into his office and talk to him or I could do my talking though the newspaper.
I still have a lot of questions and no answers. I am making appointments with both our family doctor and Kathryn's neaurologist for the coming week. Hopfully they will have some answers. This has really made me feel like I am walking on eggshells waiting for it to happen again.
This has left me with many unexplainable so once again I am coming here to look for answers that will help me understand.
Has anybody here had this kind of experience where your Loved One has had a drastic but temporary decline?
If so. Did they return to where they were prior to this event?
And lastly. If there was no infection and no pneumonia or anything else that can explain what happened it seems like the only explanation left is the Alzheimer's caused it. Is it a prediction of Kathryn getting ready to go to stage seven?
Jim-I am so sorry that this happened. It makes you realize how little is known about dementia. Sometimes it seems the docs don't care because there is no cure. Too often it seems we know more than they do. Ultimately we wind up calling the shots. At least I have a medical background-but I was the one who put together my husband's med regime. I made such a fuss that everyone backed away.
Jim oh you are really doing a great job, though I worry that you are doing too much. It makes so much sense each thing you said to the doctor, and the frustration looks obvious. Then when I read Phranques posts, oh how hard for you guys. I don't have as much experience as most others on here, and by you asking these questions it helps all of us to learn.
I am praying fervently for relief and peace for you and Kathryn.
Anchor 20--- What you have described ressembles TIAs my DH has had--VaD, Stage 6. From talking with my sister (her husband has had 4 strokes; and in their support group they learned that Strokes can happen in the presence of a Dr. and not be known--silent,) and my DH's Aunt (both her parents had strokes--one affected eyesight only, to the point of eye surgeries; the other only affected handwiting).
In testing DH they found two major Stroke scars, no one knows when or what happened. After discharge, during the next 6 mos. I took him in by ambulance 3 times with TIAs(mini strokes) In each case symptoms of confusion, muscle weakness, etc. were present. The first two, symptoms were fading and by the time blood work, x-rays and CT were done, symptoms were gone and results of tests showed nothing. The third time symptoms were classic--one side weakness, no reflexes, etc. They were checking him evevry 20 minutes. Tests were run. Synmptoms were fading slowly. Test results showed nothing. They decided to keep him overnight, just in case. By the time they had him in a room, the symptoms were gone.
The symptoms you were told to watch for are the most common. From what I've read, some patients have a composite of Alz and VaD. Since those experiences, I watch my DH. If he phases out; has noticible symptom(s), falls, etc. I watch. If he gets hurt, obviously I take him in, but if he slowly reorients, symptoms fade; he rests and then slowly picks himself up, I don't. I can watch him easier at home than have to be on his case to stay on the gurney; leave the canula on; etc. at the hospital, just to have them not find anything. TIAs can be microscopic but an accumulation of them in one area over time will install new losses--just depends on what area of the brain is being targeted.
Did they check her intestines? How are her bowel movements and how were they throughout this experience? I just checked and you said "poop running down her leg" at first. How does this compare to normal and has that ever happened before? If the bowel experience is out of norm that may be a reaction to other things but would clearly be direct link as opposed to guessing.
So has minor food poisoning or partial bowel blockage been ruled out? You said she would cry out in pain at one point if touched. Has that gone away? Where did you touch her?
As to you going Rambo on the doctor, take no guff or prisoners. You weren't satisfied with the answers and fought to get the best for her. That's your job and they can bite me. Just stay on this side of slander and they're going to have to deal with it.
I would say the next thing you can do is try and recollect with real precision to the best of your ability how she was the week before this happened compared to how she is now. Any little nuance of hers you can clearly identify is helpful in determining now whether there is evidence there was some episode and it is past or that there is some continuing change from before this. Noting what those are will also help identify a course of action. My suspicion and admittedly hope is that this will recede to some unexplained episode and I notice you said she did ok in the bathroom. My suspicions without more is stomach and intestines.
My dear man. The pain of this double loss is so hard then that right now you can't touch what a noble and honorable man you are? Has it taken all connection away? Do you not know what an inspiration you have been to hundreds of us or the war you fought for her?
I read your stuff. I watched the videos. I read your son's postings and tracked to where he had other videos. And I read your daughter's site. I've read hundreds of your posts and have followed your story. We've even written offline somewhat. I know the man you are without fear of error.
I'll tell you what would overwhelm you. If you could feel the love and support beyond what everyone gets because you're special - then you would know how you are loved. I mean that Frank. You would know and maybe that would penetrate and give you some light.
If you could feel what so many of us feel because of how many times you have made us laugh and think, you would be able to feel why I say you are special and you would know it is absolutely true without these words being a wall.
If I can reach you and pull you into the boat, I will. You are my brother in spirit and I can't stand idly by and listen to you talk about failings because that's not true. It's a lie that is trying to consume you because of the enormous grief. I will not let you believe this lie.
You gave to Audrey as much as any human being can give anyone. That and nothing else is the truth. I'm not trying to stop the pain or the river of tears. You fought so hard to take care of her for so long but you can't take responsibility for the disease. It is a disease and that's not your fault.
If you started over and did everything perfectly the tragedy would be the same. She was taken from us early and now that she is in peace, I know she is hoping for you. For your healing. For your well being through these hard days. For some light and warmth to re-enter your soul in the days to come.
I'm not. I'm reaching to a brother in arms. (manly hug)
Phranque, you are an amazing person, I love reading your posts and learn so much from them. We are only human, we do what we think at the time is best, when we know more/better we do better. You can be proud of how you cared for and loved your DW, I have great admiration for you as I too now go through this sad journey...I pray I have your strength to get through this , Yesterday I could have easily walked out the door and not looked back.. then I came here and read the posts. Tomorrow is another day.
Jim oh you are really doing a great job, stand your ground and get the answers you need.
Back to the topic of dissatisfaction with the response of the doctor..It may be true he has no real clue about ALZ. I would agree too many doctors don't get it..my DH's PCP seems to not get it with his continual effort to encourage DH to drop 7 more lbs...as if that won't happen down the road without deliberate dieting....
What I do want to say, though, is regarding an audio that was sent to me last week...it was from a radio program, one we don't get here where I live. The caller was an MD, a neurosurgeon who was from Chicago area. He was in his car going somewhere when he called. He said he had just returned from a HHS meeting ( that dept that Seblius from KS heads up..health and human services I think is the title..anyway, he said at this meeting of neruos that they were told that people over 70 were referred to as " units" not people..Units!!!! And that if someone 70+ came into the ER with a brain bleed they were to provide "comfort care only".....He was outraged that the feds would dictate the doctors treat people that way, He went on to say he would not wait for some ethics board to determine what treatment he could provide..he would take care of the patient. Right after that a nurse from Waco TX called in to say he worked in a NH and was given the same advice. Oh and for those 65 an + they are to get the " end of life" chat every two years..This is in the famous Obamacare it seems.
Hearing Ancohor's sad tale of the events of recent days makes me wonder about this...that and the way my sil was treated in hospital..her chart said " 66 year old woman with stage 4 lung cancer" and she was essentially ignored for better than 3 hours, with doctors just glancing at her chart and then moving on, until her BP went through the overhead and her O2 tanked to 42%, THEN THEY DID A CT to discover the meds used to treat her caused her to have a perforated ulcer of her stomach..she had emergency surgery finally but by weeks end she was dead.
My dad was a general surgeon who practiced medicine for 50 years. I am glad he is not here to see what has happened to his beloved profession...the oath is " first do no harm" and it seems some doctors need to be reminded of this.
Hang in there Anchor and press press press for the answer you need.
I join with Wolf in everything he so eloquently said. You did so much more than anyone had a right to expect as you shared on line your journey with your Dear Audrey as the two of you trudged down this horrible rocky road of ALz. You taught us all so much about being supportive as a family and finding ways to get others to help as you did with some of the doctors. There is not one thing you could have done to change the course of this disease..the scientists have no clue how to prevent it let alone cure it...how could any of us on the front line have those answers then?
No you need to let that part of things go...It is clear to everyone how much Audrey meant to you and how much both of you loved each other and your kids..what wonderful kids you have and what a heroic job they did to help you and Audrey.
We all felt like we were and are part of your special family and we all grieved the impending and eventual loss of sweet Audrey. She is now whole and at peace...I think it would honor her to accept that you did everything and more to help her in every possible way that this disease would now and then give way to do.
From the very day we hear the Dx of our LO, we start the grieving process and with each stage it seems to get deeper and harder..and when the day comes our LO finally leaves this disease in a heap, having finally escaped it's evil clutches, when the days of our own wishing that they didn't have to suffer but at the same time we didn't want them to be gone from us finally arrives, our grief changes to one of even more confusion and unsettled feelings about the whole thing..
All any of us can do is admit we are human, that there are days when we lose it and then feel like heels because our LO does not deserve this, but in the end we have and are doing the best we know how to do. There is no school to teach us how to manage this disease. It is one with the worst OJT one could ever imagine.
You did a spelndid job taking loving care of Audrey. Give yourself the gift of accepting that fact so that you can let your heart start to heal...you will always love Audrey and miss her but she is always in your heart and you can still whisper those " sweet muffins" to her anytime you want and she will hear you..she is always with you..just let it in and I think it will grant you some much deserved peace.