Joan and I emailed before I started doing this about how/if I should be involved on this site. Certainly any feedback (positive/negative) can be directed to her and she will forward it to me.
I had company all evening, so I did not see the alerts from my MBM and Bluedaze concerning that poster until now (11:30 PM). It is very late, and I am going to bed, but I have removed his post, and will e-mail him in the morning citing the Message Board Guidelines about getting permission from me before posting in the manner he did. I briefly checked his web page, and I do not think it is appropriate for this forum, but I will read it more closely tomorrow.
Oh, I meant feedback about me. I know that the purpose of this site is to allow community between spouses. I do use some key threads to show medical students to give them a sense of reality.
You're doing an excellent job. I want everyone to understand that you are here via an agreement between you and me, and whatever you write is sanctioned by me, including using some threads (anonymously without names, of course) to teach your medical students. What a great service you are doing to all caregivers who come after us, by having taught new doctors to understand our real life situations.
I'll e-mail you later. I'm still trying to catch up after being so incapacitated from my surgery.
Thank you for explaining this diagnosis to me. I have one more question. I was told at stage 7 the reason people get pneumonia is because the brain just forgets to work properly. In this diagnosis that I wrote in the discussion topic, could this be what happened? You told me the heart just slowly stops beating and the lungs just slowly stop. Is this because the brain does not send the messages anymore for the organs to pump?
Hi Paula M people get pneumonia for two main reasons that I can think of: the immune system isn't as robust making the body more susceptible, and aspiration. Aspiration can be a problem of the brain not coordinating swallowing. I can't explain the weakened immune system but I suspect it has to do more with overall frailty. I had another patient pass away this weekend. Had a hip fracture, dementia and died peacefully at my NH. I chatted with her Friday before I left and talked to her niece. Still I was surprised she died Saturday. I thought she would make it a couple more days. I suspect for her that her heart stopped beating due to renal failure and accumulation of potassium. I think when the body reaches its end, its a combination of the organs giving out (heart, kidneys, liver), accumulation of toxins and the body's inability to coordinate functions. I'm no pathologist. I'm a geriatrician. It's a guess. josh
dr josh, i thought i'd share some helpful info that i have run across lately in issues that have cropped up with DH in late 7 stage. as you know in end stages the lack of excercise for bedbound patients/loss of hydration, starts the process of constipation which can be a real threat. my DH has begun to need constant external stimulation to help him have BM. hospice wants him going every 3days so we are on a regime of products and i have found a couple most helpful. believe me if it exists we have tried it. we were up to 3 enemas /day, (both mineral and reg enemas) senokot s 4x2/day, milk of magnesia 4tblsx2day, prunes, applesauce, ALL this in one! day. and nothing. seems there can occur blockages higher up and it really takes some effort to unlock that esp with dehydration. fortunately we were able, but if there comes a time it doesnt, well you know bascially that it would mean surgery as the last extraodinary end means. in late stage dementia it wouldnt be a sound decision from the drs i have consulted with and sadly i agree with them. but what i did want to share if you didnt already have this info, the BISAC-EVAC suppositories, (bisacodyl usp 10mg) which i think is basically Ducolax suppositories, worked amazingly well where all the above did not help. also there is a pricier small enema called ENEMEEZ (ducosate sodium 283mg) that i got online and they work as well beautifully. these 2 in combo are like a nuclear blast :)-i know you may have geriatrics with this issue, and it has been of great relief to finally find something that has been of benefit. divvi
Divvi- I recently had the same problem...but my dw would not have a movement for 7 days at a time...No matter what I did, nothing happened..,I had fantastic results when I gave her colace tablets (tastes awful), and then a ducolax suppository. Within three hours, I was wishing that I had not done that... We have been on this regime for about 2 months now, although I stopped when she stopped eating..It seemed that nothing could induce it until the stools softened up, and the suppositories started the whole thing in motion,. Hope this helps.
thanks phranque. yes we went as long as 10days without bm as well with all the regime daily and nothing. til we used the senokot S work great as a softening agent that is included in it. and good to hear you had results with the bisacodyl suppository as well.
we cant win, i worry when he doesnt go and i worry after i give it.:) crown is in place i dont think it ever left.
Thanks divvi I'm always open to ideas. I'll have to figure out what makes bisac evac suppositories unique. We do a lot of house calls in our group and managing constipation is challenging. Thanks! Josh
Dr. Josh--In the last few days I've heard several medical professionals say that Seroquel and other anti psychotics can cause the pacing we see in so many dementia patients. I had always thought that it was a symptom of the disease process. I was able to find one study online that indicated positive results regarding anti psychotics causing pacing. Doesn't it seem ironic that the group of medications that can be so helpful with problem behaviors in dementia would exacerbate one of those behaviors, and what is your opinion on this? (My husband is really into pacing, so I have a particular interest in this. It hasn't proved to be a problem yet, but he's at risk of wearing out his feet!!!)
Divvi, Lynn was a pacer long before he was on any medications as well
And here we go talking about poop!! LOL. Constipation is the biggest concern for the nursing home lately. Lynn would be mortified if he knew I was talking about his bowel movements! Ahhh but the things we do in the name of love and the hope to help someone else out in their journey. The problem I have with the suppositories is they are so potent that they affect Lynn pretty severe. I wouldn't mind them using them except they do not watch him after they give him one and this is when most of his falls have happened. He HAS to go!! Now he can read the sign that says bathroom, and the urge must be pretty bad, because he tries to get to the bathroom, only problem is he forgets he can't walk! So now I ask that they try something more natural first. And if they must give a suppository to call and let me know so that I can come and sit with him until... well you know <big grin>
yes natural is always best first. ours has turned extreme case so we use any and all resources. and yes when they work- they go. my spouse cant turn or try to get out of bed on his own anymore, so i dont have that issue like lynn trying to get out of bed. that would be disatrous! and he could fall trying to make it to the toilet. poor guy. i thought my reign as poop queen would end once stage 7 came, nope now i am battling the opposite effects and hoping for the results! haha.. its a battle either way. i have put my foot in my mouth for so long over poop topics its way to late to feel bad now. :) oops sorry dr josh we are off topic here!!! divvi
LOL not really off topic, it is still poop afterall <grin> I know what you mean, I thought we were over the "poop problems" but nope, it just goes from one extreme to another!!
For several months, my dh was under the care of Palliative Care and the first thing the nurse did was give a Fleets and then every week thereafter. Now we are off of Palliative Care and my dh seems to be trying to have a bm 24/7 and keeps us up all night with his constant noise (he thinks blowing through his nose and wringing his hands is how it is done). No matter where I go in the house, I can hear him. I am ready to scream! His BM's are generally soft and I was using Miralax and Benefiber as needed. I don't know if the Fleets treatment caused all of this or this is another stage. Could it be his food? Should he be on a bland/soft diet? I finally gave him Ativan .5. He is sleeping but now I worry he will be awake all night. Don't want him drugged all of the time because of this issue. Any help would be appreciated. My dh is bed bound, 68 yrs old, and early onset 9 yrs ago. He still eats pretty good (regular meals). Thanks
Dr. Josh-my I took my husband to the ER last week because he choked on some yogurt (no impulse control-stuffs all his food in mouth at one time). The drs determined he had a low grade fever and attributed it to a slight case of aspiration pneumonia, so they treated him with an IV antibiotic-Avelox. By the time the antibiotic was finished, my husband was having tremors in his extremities, very confused, was unstable and unable to walk out of the ER and needed a wheelchair. Before the antibiotic, he's been physically healthy, walks 2 miles each day, no tremors and his dementia has been stable. Later that afternoon he had what looked like a seizure-arms/legs flailing, eyes rolled back into head. We went back to ER and they admitted him. All the hospitalists said it was just another progression in his dementia due to the pneumonia. I think he had a severe reaction to the Avelox which was exaserbated when we gave him the seroquel. Have you had any experience with Avelox or the Avelox/Seriquel combination? Unfortunately his hospital stay was 1 week and now we have to work hard to bring him back to the baseline he was at before. Hopefully we will be able to do that.
I just got to read through this thread after my surgery. Regarding enemas and BM's, when I was a resident, one of my attendings talked about using "Milk and Molasses" enemas - 1/2 milk, 1/2 molasses. He said you have to stand aside after giving it since the result could be explosive. I wonder if Dr. Josh has heard about this.
goodness ! ha i am glad times have changed. the idea of a one inch suppository is so very much more appealing. marsh if i left that concoction around it may go down the wrong end-the mouth! ha. divvi
Dr. Josh, My husband is in the final stages of FTD. In the last few weeks he has had many infections & passed a kidney stone. We have been treating the infections with antibiotics, however, he has developed so much mucus that he has developed a cough. He has forgotten how to spit so he just swallows, unless he sneezes, he will get some relief. You can hear a gurgling sound, I am so fearful he will choke to death. Any suggestions? Thank you in advance.
Dr. Josh, My husband has experienced some cognitive symptoms but has not been diagnosed with a specific dementia. Our family doctor thinks DH could have start of a dementia but hubby does not want to undergo further testing. He is still very sharp in some areas but has difficulty processing and recalling information at times. His thinking patterns have become more rigid / finds it hard to make decisions. There have been some situations where his ability to make a responsible assessment is definitely clouded ie walking away from a 6 year old grandchild and walking home (a block away) with no sense of responsibility for the child. He also can be socially unaware in his comments and behaviors. He definitely manages best when life is regular and routine / finds it hard to adapt to a lot of activity or change. These changes have been gradually happening over the last few years. He has scleroderma and I've read that scleroderma can occasionally have either "brain fog" or cognitive involvement. Could his symptoms be related to the scleroderma? If yes, how is scleroderma cognitive involvement similar / different from dementia? Thank you.
Hi all. Sorry for the absence. Just to give you an idea of what I've been up to, I had my third child in May which kinda changed my evening quiet time to blog and write emails. I gave a talk in elder abuse to the Pennsylania Geriatric Society, spoke at a national conference of orthopedists, anesthesiologoists and hospitalists about delirium and palliative care, spoke to TCN (tv network) on end of life planning and some other talks too! It's been busy. I did he a smart phone so hopefully my commute time (on the bus) will be My blogging time. Lots of learning going on for me and teaching too. I apologize or the absence and consider doing this very enjoyable for me. Responses to above questions to follow!
Congratulations, Josh! When you find the time, could you please let us know if anything from your experience or research suggests that increased talking in ones' sleep means anything ... either as an indicator of 'what is' or a sign of what may be coming down the pike? My wife, now in moderate stage AD, never spoke in her sleep. Several months ago, however, that changed. She's gone from unintelligible mumbling to a few clear words to a phrase or two to complete sentences and now she regularly engages in animated dialogue ... with no memory of anything, of course, once she wakes up! I've read a little bit about how this could be related to lewy body dementia. Anything you can add? Thanks
Dear Dr. Josh. I sure could use some help with dh's bowels! He is bedbound. The bms are soft and he can't push it out. I try to pry it out but being soft makes it impossible. If I use benefiber, it becomes too hard. Is there a vacuum??????
Gord could go days without a bm. I used sennekot, lactulose and anything else I could think of. A home remedy seemed to work every time. I got this from a friend who got it from a Chinese doctor. Put about a tsp of flax seeds into water. I always used about a cup. Bring it to a boil and simmer for about 5 minutes. Strain it and if you have done it correctly, you end up with this slimy concoction that will fall right off a spoon. I used to put a couple of tbsps in a mug, add some lemon juice and a ton of sugar and then hot water. Gord would drink it quite well and we always had success.
Dr. Josh, I have a question. After Gord's death, I went to the nursing home where he had been for respite. I had to go and ask questions even though he did not pass away there but was a different man when I picked him up. I had noticed when I brought him home, that there was no Ativan in their blister packs. This was something I questioned during our meeting. They rifled through a thousand pages which represented 12 days of Gord's life with them. The director of care said he would get back to me. He did and said that he had spoken to the doctor. The doctor said that he would never have given Gord Ativan and that it added to confusion and unsteadiness of gait. I was angry as I had been told by a geriatrician at the hospital that the sudden withdrawal of Ativan could have been one of the causes for what they called a delerium overlaying the dementia. The director of care told me that the doctor had pointed out that the Ativan was a PRN medication. I told him that it was a standing order and the doctor had no right removing it. He gave me the doctor's number. The doctor told me there is no such thing as a delerium and passed the blame for using the drug as a PRN to the nursing staff. I called the director of care back and told him that the blame had come back to his staff. There is a question in here somewhere. Wouldn't a sudden withdrawal of Ativan cause problems. Gord was on 2mg a day for well over a year. I am not suggesting that this ended his life, only that it could have been a contributing factor.
Perhaps I'm jaundiced-but other "experts" have been on the site-or were supposed to be. I always had the feeling they would get what they wanted from us and leave. Dr. Josh please forgive me if that is not your intent.
From his post in November, with a third child I think he is just too busy and something has to go. Maybe things will settle down later for him. Are thankful for the help he did give and wish him the best no matter how it goes.
I agree with Charlotte. I have known couples who have been put over the top by having a second child, much less a third. I think we should cut Dr. Josh some slack.