Medical help please
- Thread starter busywend
- Start date
SRL
Active Member
Sometimes people with early Alzheimer's do fine in familiar surroundings but take dramatic downward steps when moved to unfamiliar settings such as a hospital or other living arrangment. It happened with my husband's grandmother--no one ever suspected Alzheimer's but when they moved her to assissted living she very rapidly went downhill. The familiar surroundings and routines of home kept her functioning.
Marguerite
Active Member
This doesn't sound like Alzheimer's. Too sudden, and you haven't mentioned anything other than drowsiness, disorientation perhaps.
Rather than getting her to see "a new doctor", see if she will allow herself to be referred to a specialist who deals with something like pain management. That way the 'specialist' will be sufficiently general to be able to pick up on anything perhaps missed by her doctor, but also more able to be on the ball with more appropriate pain medications.
It sounds to me like she is being overmedicated. husband tried the Fentanyl patch and he went quite stupid on it, bombed out of his skull. My father was on morphine in his last few months and it made him hallucinate. I can take (and tolerate) morphine but when I was first put on it, the dose was too high and it made me groggy. I should have been started on a lower dose (20:20 hindsight).
If she's ever been on steroids her bones are probably like chalk. But there can be other, more sinister reasons for brittle bones, it really should be checked out thoroughly. If it turns out to be something really nasty and somewhat terminal then she STILL needs to know if only so she can get APPROPRIATE pain medications so she has quality of life and not this twilight half-world she's currently living in.
The TIAs (mini-strokes) could also cause some vagueness, but not this suddenly unless she's having them now, constantly. past ones - shouldn't do this now, if they're all in the past.
My vote is the medications being too much, too strong etc. But medically, she does need to be properly (and gently) investigated.
I don't think MRSA is terribly likely. A Baker's cyst isn't anything like a sebaceous cyst. I've got a Baker's on my knee, had it for decades (probably since I dislocated my knee at school). Sometimes it has caused pain problems, but there are other things that can be done without it needing to involve drugging her into oblivion or doing anything invasive.
I hope you can persuade her to get a specialist's opinion (pain expert, or maybe geriatrician, or rheumatologist).
Marg
Rather than getting her to see "a new doctor", see if she will allow herself to be referred to a specialist who deals with something like pain management. That way the 'specialist' will be sufficiently general to be able to pick up on anything perhaps missed by her doctor, but also more able to be on the ball with more appropriate pain medications.
It sounds to me like she is being overmedicated. husband tried the Fentanyl patch and he went quite stupid on it, bombed out of his skull. My father was on morphine in his last few months and it made him hallucinate. I can take (and tolerate) morphine but when I was first put on it, the dose was too high and it made me groggy. I should have been started on a lower dose (20:20 hindsight).
If she's ever been on steroids her bones are probably like chalk. But there can be other, more sinister reasons for brittle bones, it really should be checked out thoroughly. If it turns out to be something really nasty and somewhat terminal then she STILL needs to know if only so she can get APPROPRIATE pain medications so she has quality of life and not this twilight half-world she's currently living in.
The TIAs (mini-strokes) could also cause some vagueness, but not this suddenly unless she's having them now, constantly. past ones - shouldn't do this now, if they're all in the past.
My vote is the medications being too much, too strong etc. But medically, she does need to be properly (and gently) investigated.
I don't think MRSA is terribly likely. A Baker's cyst isn't anything like a sebaceous cyst. I've got a Baker's on my knee, had it for decades (probably since I dislocated my knee at school). Sometimes it has caused pain problems, but there are other things that can be done without it needing to involve drugging her into oblivion or doing anything invasive.
I hope you can persuade her to get a specialist's opinion (pain expert, or maybe geriatrician, or rheumatologist).
Marg
Fran
Former desparate mom
Wend, the elderly are a whole basket of similar symptoms for a whole basket of diseases related to aging. Add their varying ability to handle strong pain medications and there is a lot of symptoms without clear cut diagnosis. Add mini strokes then you get inaccurate history of symptoms.
It is not unusual to use dilaudid for back and nerve pain.
Certainly they need to do a baseline which is remove all pain medications and start over as to what came first the pain or the confusion.
If her bones are detiorating at such a rapid rate that she suddenly has become hunched over then there is a starting point. I'm not sure the baker's cyst is the issue as much as the trigger. She may have started walking differently to ease the knee pain which in turned messed with her spine. Just a thought.
If it were me, I would do a written timeline of her medical history so that she can give it to a gerontologist for a thorough evaluation.
Guessing what it could be is not very accurate with the elderly. They are not just like us any more than children are mini adults. It is a specialty that has to be treated with specialists. in my humble opinion.
It is not unusual to use dilaudid for back and nerve pain.
Certainly they need to do a baseline which is remove all pain medications and start over as to what came first the pain or the confusion.
If her bones are detiorating at such a rapid rate that she suddenly has become hunched over then there is a starting point. I'm not sure the baker's cyst is the issue as much as the trigger. She may have started walking differently to ease the knee pain which in turned messed with her spine. Just a thought.
If it were me, I would do a written timeline of her medical history so that she can give it to a gerontologist for a thorough evaluation.
Guessing what it could be is not very accurate with the elderly. They are not just like us any more than children are mini adults. It is a specialty that has to be treated with specialists. in my humble opinion.
gcvmom
Here we go again!
I agree that the Baker's cyst is likely not the cause of any of this. My mom has one behind her knee and eventually needed it drained. She was told it can come back with time because of continued irritation from walking.
I also agree that medications are likely being over-prescribed. She shouldn't be drooling and in a stupor like you describe, and because of her age or even just her own metabolic makeup, she probably doesn't need as much as they're giving her to control her pain. husband has had dilauded after surgery and it does make him very sleepy, but not unresponsive and drooling... (going to pass on the temptation to make a wisecrack here...)
The behavior changes could be a combination of over-medication and lack of oxygen to her brain because of the Chronic Obstructive Pulmonary Disease (COPD) or narrowed carotid artery or Alzheimer's or... She really does need a specialist at this point I think.
I also agree that medications are likely being over-prescribed. She shouldn't be drooling and in a stupor like you describe, and because of her age or even just her own metabolic makeup, she probably doesn't need as much as they're giving her to control her pain. husband has had dilauded after surgery and it does make him very sleepy, but not unresponsive and drooling... (going to pass on the temptation to make a wisecrack here...)
The behavior changes could be a combination of over-medication and lack of oxygen to her brain because of the Chronic Obstructive Pulmonary Disease (COPD) or narrowed carotid artery or Alzheimer's or... She really does need a specialist at this point I think.
busywend
Well-Known Member
She is on prednisone for the Chronic Obstructive Pulmonary Disease (COPD), I believe they have been trying to titrate down for 4 months now - I am not sure it should take that long, though.
I absolutely believe if they had drained the cyst the back issue may not have come up at all. She was limping and started using a walker due to the pain behind the knee. I think just the difference in the way she had to move, and that she fell while having to move so gingerly, are what ended up causing the spinal fractures.
Her oxygen level is really good right now even without adding any. Could it be that the depressed breathing (I read some of her medications can cause that) is making her have to take breathes more often and they are smaller - but she still gets enough oxygen?
The reason I ask is because I have a feeling she is not eating because she can not breathe while she eats.
I absolutely believe if they had drained the cyst the back issue may not have come up at all. She was limping and started using a walker due to the pain behind the knee. I think just the difference in the way she had to move, and that she fell while having to move so gingerly, are what ended up causing the spinal fractures.
Her oxygen level is really good right now even without adding any. Could it be that the depressed breathing (I read some of her medications can cause that) is making her have to take breathes more often and they are smaller - but she still gets enough oxygen?
The reason I ask is because I have a feeling she is not eating because she can not breathe while she eats.
F
flutterbee
Guest
It can take a very long time to titrate down the prednisone. Linda's been at it for months. I've read of people where it took over a year. With her symptoms of fatigue and confusion, weakness, etc, I'd be asking about an adrenal crisis.
Prednisone takes over the production of cortisol. If you come off prednisone too quickly your body doesn't know to start producing it on it's own. It can be very dangerous. I'd have them check that out.
She may have already had osteoporosis before, but if she's been on prednisone for a long time, it certainly hasn't helped.
Do you know how long she was on them and at what dose? Do you know what dose she's at now and how much they have been decreasing and at what pace?
If she is in adrenal crisis, raising the prednisone a little should help and then they titrate more slowly.
Prednisone takes over the production of cortisol. If you come off prednisone too quickly your body doesn't know to start producing it on it's own. It can be very dangerous. I'd have them check that out.
She may have already had osteoporosis before, but if she's been on prednisone for a long time, it certainly hasn't helped.
Do you know how long she was on them and at what dose? Do you know what dose she's at now and how much they have been decreasing and at what pace?
If she is in adrenal crisis, raising the prednisone a little should help and then they titrate more slowly.
SRL
Active Member
Marg, I've known of others with Alzheimer's whose symptoms suddenly reared when they were taken out of their unfamiliar environment. I'm not saying that's the case here but I thought I would toss it out. I did have a relative with very rapid onset of dementia which the doctors first attributed to steroid dementia which actually turned out to be Creutzfeld-Jakob Disease. She'd had a year plus of back symptoms which the doctors could never pinpoint down, which were likely false signals caused by the CJD.
TerryJ2
Well-Known Member
So sorry to hear this.
She needs a more thorough workup from a specialist. I do not think her PCP is equipped to handle it all. As everyone pointed out here, it could be so many things, and the medications could be masking things or making them worse.
You may have to do some major league persuasion to get her to do a thorough workup, but it will pay off in the long run. This sounds too piecemeal.
Best of luck.
She needs a more thorough workup from a specialist. I do not think her PCP is equipped to handle it all. As everyone pointed out here, it could be so many things, and the medications could be masking things or making them worse.
You may have to do some major league persuasion to get her to do a thorough workup, but it will pay off in the long run. This sounds too piecemeal.
Best of luck.
busywend
Well-Known Member
She was put on the prednisone shortly after having been diagnosed with pnemonia (sp) to help with her breathing. That was in January of this year. She intially took one treatment and it helped her so much, she asked about it again. The doctor prescribed it daily, I believe. But, it has never had that great of an impact.
I recall her saying she wanted off of it due to the swelling it was causing. That was probably back in April. I do not know the dosage though. Do you start out at a high dose of prednisone? or do you titrate up, too?
I recall her saying she wanted off of it due to the swelling it was causing. That was probably back in April. I do not know the dosage though. Do you start out at a high dose of prednisone? or do you titrate up, too?
F
flutterbee
Guest
Typically, you started out at a moderate-high dose and titrate down within about 10-14 days.
If she's been on them since January, I would think (hope) she's been on a low-dose, but if they are having trouble bringing her down and it's been 4 months already, I have to wonder.
If she's been on them since January, I would think (hope) she's been on a low-dose, but if they are having trouble bringing her down and it's been 4 months already, I have to wonder.
