The doctor had never seen or talked to Kathryn prior to walking into the room and saying she was ok and ready to go home. She came in unable to walk and didn't even ask her to walk across the room to see if she could. He didn't even know if she could get out of bed.
Bluedaze, when he said dementia it was so casual that it was like it didn't count.
Carosi, thank you so much for saying this. Her Mother had many TIAs just prior to her death. I remind our primary about them and ask him to check this out.
Wolf, I will ask our primary to find this out also. He is a Baptist primary and has access to the records from this visit. I think they did but I am not sure of anything they did at this point.
All test were started while Kathryn was in the emergency room and I can enough about those folks. They were great as were the folks on the floor. The only problem is the doctor it was turned over to the last two days. That I can see he never did anything at all. He never looked at Kathryn, never talked to her or me until I started asking questions and then tried to redirect everything onto me.
In my job I investigate violence and details are very important so I am a detail guy. When I got home I sat down and started writing everything down so it was fresh in my mind. Plus I will go back and look at what I wrote in here.
Right now she seems to have returned to where she was before all this started except for two things. It is harder for her to understand what is being said to her and she appears to have lost her appetite which had always been very good prior to this.
JimB
To me he seemed to be like Doctor House on TV. Never see the patient and then declare them well and send them on their way.
Anchor 20- Jim..I am reading your post with tears flowing freely, because it reminded me of what I went through. My only advice is to follow your own instincts, and that you are a better judge of Kathryn's condition than any medical doctor. Do what you feel is right and necessary. Forget about their explanations..most are only educated guesses, and are often wrong. I remember a similar episode when Audrey was caring for her mom...In the hospital, doctors were unable to give any clue as to what had affected her mom...and I can vividly recall the confusion and fear that was in her mom's face...we never did conclude anything, despite a million tests, mri's and ekg's, eeg's, etc. Our only conclusion was that she had suffered a tia or mini stroke, or part of her brain had been affected to cause a decline. As for Audrey, I am convinced that the same thing happened on her birthday June 14. She had been able to walk, and I have a precious photo of her outside, with her dog on a leash. That was the last time she was able to get up, and the next morning, she became bedridden completely. It was hard for me not to take her to the ER for tests, etc....but I knew in my heart that this was part of the disease that had taken control of her, and I spared her the frightening experience of tubes, needles, probing, tests, and most importantly, taking her away from familiar surroundings. I realized that she felt most comfortable in her room, and needed to have everything EXACTLY as she recognized it. Would taking her to the hospital have changed anything that happened?? Absolutely not..there was not a thing they could do for her. What she needed was her routine, and being surrounded by those who loved her. It was horrible for us, but so much better for her. I still often wonder "what if", but know that we are powerless to fix whatever was wrong. I am also reminded of how she had difficulty urinating, and how her bowel movements were erratic. I can remember sitting her on the toilet, and she would ask me "what do I do...and I would try to explain how to pee.....but she could not do it....and ten minutes later, we started again...same thing same results...I had to realize that she could not process the need to urinate, the urge, and then the actual physical doing it....that connection was now broken. And she would often go 5-10 days without a bowel movement...\ I can actually remember how Audrey had to dig out feces from her mom, and I thought that was so bizarre and unnecessary....yet here I was in the same situation. Ducolax and suppositories (and that old time cascara root) would have minimal effect....That my friend, is the result of alzheimers....I hesitate to use the word "forget", but in reality, I firmly believe that alzheimers patients can no longer process and perform the everyday bodily functions... Jim...my only real advice for you is this: Love Kathrn with all your heart and soul and do the best you can in all circumstances. Keep in mind that you will most likely not find a cure for her condition. Your mission is to keep her as comfortable as possible, salvage what you can, and love her beyond what you are capable of, despite it's cost to you. You are able to take on considerable damage to yourself, and there will be time after to heal and try to become whole again. This disease is not about you....you are the innocent bystander..the real victim is Kathryn...and love her as you never loved her before, and even go beyond that if you can. It is not easy, but it will make things more tolerable.
As for the rest of you who are singing my praises, I would give anything to be back in the caregiving saddle again....I feel I do not deserve any of the praises and my only criticism is that all of you need to laugh a bit more...I keep looking for the new jokes, and they just are not there......Stupidity is rampant, and is everywhere!!!! Laugh about it.... Also, awareness of this disease is minimal. Someone recently asked me about how Audrey was doing....When I mentioned that she had passed, they asked me what she died from...\ Alzheimer's was my response. They replied that they knew she had that, but wanted to know what she had really had died from....duh......so I mentioned that she passed away from complications arising from use of the wrong kind of toilet paper..... Hey, if you need me, I am here for all of you. I am now the most highly respected authority on Alzheimer's...I have studied extensively, consulted with the best of the medical profession, and able to give my advice freely. Heck, I can give the most accurate diagnosis of any alzheimer symptom...after all, how hard is it to say "I don't know"...
It is amazing sometimes what doctors don't know and I often feel they are making what I call "educated guess" using the process of elimination.
Things happen to the body that not even the doctor can detect without some of these very expensive test. Your post has been very good for many of us and I thank you for posting it. We may all need to think how important it is to our loved one as well as to us to actually know exactly what has happened. Some may say, this illness is not good for either of us and there will be only one outcome and is sooner better then later for both of us...therefore, why do I even need to know exactly what happened if my loved one feels fine now. We might need to question the "need to know". This is all so personal and so frightening...just one more burden we have to carry and such an individual decision.
My dh had a silent heart attack that killed 1/3 of his heart. You would be amazed at the doctors who have said to me after I tell them about his heart attack...."When did he have his heart attack?"....Duh...I always say..."How should we know it was silent...he had no pain...we could look back to his last EKG and see it didn't show up then...but it does now...and guess that it was sometime between that EKG with no sign of a heart attack and then the EKG that showed a heart attack.
Keep us posted and we all hope that things improve for you.
Jim, we had much the same thing. Gord went into respite a strong, aggressive man with Alzheimer's. He came out as a man barely able to walk. The next morning, I thought he had had a stroke due to the marble mouth sound of his voice. From the 17th of October to the 23rd of October, nobody seemed to know what had happened. I was told that it was possible that a delerium had overlaid the dementia due to a number of causes. Those causes were being taken to respite, the falls he had while in respite, the bladder infection and the possible withdrawal of Ativan which he had been taking for more than a year. On the 23rd, he aspirated at some point and developed aspirational pneumonia as a result. The pneumonia ended his life. I still have no answers for what happened before. I did find out that the home stopped his Ativan. Now they are all scrambling to blame each other. I spoke to the doctor who deals with the home. He was determined that the Ativan was a PRN. He said he saw no signs of withdrawal. I looked up the symptoms of withdrawal and wondered how anyone could tell the difference between an Alzheimer's patient who was or was not in withdrawal. The symptoms are exactly the same. While I know that this error did not end Gord's life, it makes me mad as hell that they made a medication error of that magnitude. I have the blister packs they sent home with me....no Ativan. I have the blister pack that I took with him....Ativan. I have the list from the drugstore...Ativan as a standing order. I also have another list that they are quoting...Ativan as a standing order. The doctor's attitude was so uncaring. He did say he was sorry about Gord's passing but as for the rest, it was somebody else's fault.
I know I do not have much to offer in experience, but I just need to be a part of you all. Tears flow freely this morning as I read all your input. You feel like better friends that my "real ones"
DH had a fall going up the stairs yesterday, and fell in to the cat food and knocked their water down. It seems small, but just another heart break to me.
May I once again offer my heart to you all. As for me, you all help me to feel, in the right way.
i tend to agree with Carosi Anchor. a TIA can mimic a stroke but when they look for it sometimes no obvious symptoms once its over. we have dealt with them as well and they can bring the spouse down quite rapidly and then they can rebound back pretty soon. sometimes not right away. i think Tia/stroke/seizures even the silent kind are very probable with dementias. there just isnt enough info out there to know how it can affect our loved ones. without having any other infections i would tend to believe it was a tia as she seems better now. hope you get the answers you are looking for but yes i agree that once 'dementia' is on the chart most drs desire to treat usually wanes to only the minimum necessary. i would speak with the neuro she uses as next contact and if it happens again, call him first and have him meet you at the ER. having HER dr there makes a difference. good luck divvi
Jim, we had a very similar experiece in late August this year with DH. He choked on blended yogurt around 9:00 am one morning and didn't seem to b recovering so I called the paramedics and off to the ER we went. They found traces of pneumonia, probably due to aspiration and gave him a strong antibiotic via IV. My husband went into the ER able to speak and respond to questions and hold a conversation, walk on his own with no assistance (he is a strong, physically healthy man), get in/out of a bed with out help and certainly does not have tremors. Well by the time the IV was finished, DH was confused, unable to communicate clearly, had tremors and had extreme difficulty with his balance and walking, so much so they needed a wheelchair to bring him to the car when he was released. We went home and within a few hours he had a seizure, so back to the ER. They decided to admit him because his temp was high and there continued to be signs of pneumonia. His entire physical and mental health had deteriorated within a short amount of hours.
Once admitted, he had another seizure (cause unknown) and rapidly continued deteriorating. They allowed me to stay with him in the hospital that night and strangely no one came in to check on him during the night. I prayed to God to have him live, that I could not bear losing him on the eve of our 27th anniversary. He made it through the night but was in terrible condition. Then a doctor I did not know came in and announced he was "the hospitalist" assigned to my husband. It became very clear to me that he was not going to try to find the cause for his seizure or treat his deteriorating condition. He said that he was SURE that the seizure was either caused by the Seroquel he was on or attributed it as a side effect of his dementia. He could not get past explaining that the symptoms my husband had are all classic signs associated with the dementia and that I needed to accept that the dementia was causing the rapid, unexpected decline. I advised him that he had no frame of reference prior to DH's admission and that DH was a strong walker, had no tremors and had decent communication skills BEFORE the choking incident. He refused to listen saying only that I needed to accept the decline because it was due to his dementia. So I called the Geriatric Care Manager I hired 3 years ago when DH was hospitalized due to his violent behaviors and who visits him every 2 months. When she arrived at the hospital, she was shocked about Rich's condition and couldn't believe the change in him in less than 2 weeks. She strong armed the "hospitalist" into conducting an eeg, a MRI and a CT scan, saying he needed to find out the cause of the seizure and overall deterioration. Only after her insistence did the hospital do any tests or call in specialists. After all the tests were conducted, they dismissed him from the hospital-even BEFORE the MRI and eeg had been read by the consulting neurologist.
This was an eye opening experience on many levels, but particularly if the dementia patient (or any patient for that matter) only sees a hospitalist. They have no basis of reference other than what the patient demonstrated upon admission, did not bother to take a medical history or consult with his PCP or geripsychiatrist and immediately came to the conclusion it was "the next step in his dementia progression".
My husband has regained his physial strength to the level it was before the hospitalization, but he has lost much of his speech and ability to process what's being said to him. He went from late stage 5 to mid stage 6 in a few days.
BEWARE-all hospitals are going towards the Hospitalist concept to control costs and prevent testing-even necessary testing.
My heart goes out to you Jim. I don't know what else to say, just that my prayers and thoughts are with you. I'm still learning about this terrible desease, and what's ahead.
I guess our hospital experience was a good one other than the outcome. Gord was seen by a respirologist, an ENT, a neurologist, a psychiatrist, a geriatrician and a nurse practicioner. He had numerous chest x-rays, a CT scan, bloodwork, urinalysis, ECG, EEG and a camera down the nose to check for blockages. At no time did I think that he was being ignored due to Alzheimer's. They seemed as anxious as I was to find the cause. When the respirologist came in to pronounce Gord, both my son and I felt that he was truly sad about Gord's death. I have never seen a doctor look so sad. We figured from his attitude that he has or has had somebody close with Alzheimer's. I could never fault their attempts to discover the cause of Gord's illness nor their compassion and kindness.
Phranque* I appreciate all of your words of wisdom and I am so sorry to bring these feeling back for you so soon after Audry's passing.
This just gets weirder and weirder. The doctor that was such a problem at the hospital called me at home this afternoon and asked how Kathryn was doing. I told him she was doing ok and that I was taking her to see our primary doctor and her neurologist to see what they have to say about what has gone on during the hospital visit and get their advice on what I should do next. He then asked me if she had had any more diarrhea since going home. I told him no that she hadn't even had a bowel movement at all. He then told me that he had just gotten back the results of the culture on her stool and it tested positive for infection ( This is the same doctor that said all the test were negative). He also said that this indicated she needed three to five days of antibiotics and she only got two days. I asked him if my primary doctor could access the records and he said yes. I then told him that I would have my primary take care of it because I didn't want him having anything to do with my family.
He said if there was a reoccurrence that I should bring her back to the emergency room right away. I told him I would but I didn't want him involved.
This is all beyond belief. In my wildest dreamed I would have never believed this could happen.
This is one more thing I will bring up when I talk to the head of the hospital.
JimB, along with the hospital director,check to see if the hospital has a Patient Advocate...he or she will be of great help too in doing a thorough investigation into what occurred during your wife's hospital stay.
i have this happen alot of the time when checking for infection anchor. many cultures say 24=48hrs but in our case it took as long as 4days to get a positive culture back. the dr should have said no infection as of late but if that changes we will get back with you. i have now learned to make sure they keep cultures going for as long as the 4days. many drs prior gave like yours a negative diagnosis with regards to infection only to find they did grow after this longer period. if it were me, i'd surely have her neurologist 'available' for calls when necessary. they are the best upfront advocate and know the patients history. good luck. i hope the antibiotics help. divvi
Divvi, as always, has given you wise advice, and I like Bella's idea of the patient advocate. You sound like you're holding your own: you're well-named. I hope that your meeting with the hospital director will have some effect - I've found that it doesn't always: it seemed to me that some like to cover up for their own. Your patient advocate and neurologist are your best bets and Divvi's advice re. 4-day cultures. Keeping you and your wife in my prayers.