Sounds like things are improving, which is great news.
With regards to going home in a few weeks: the rehab facility should offer to take your Mom on a home evaluation prior to discharge. She should be accompanied by the occupational therapist. They take her thru normal daily activities to see if she is able to do them all. Things like getting in and out of her own bed. All bathroom needs, toileting, showering, etc. They can work on steps with her if that is a reasonable goal in her situation. She should also be discharged with home health care.
In Iowa, the nurse that manages her home care decides how much help she will need and how often. That can include a bath aide, medication management, and home therapy if she is unable to go to out patient therapy. If her condition warrants it, you could see if she could have a hospital bed brought in and put in a room on her homes main level.
I hope this helps you in your planning as things move forward. I absolutely hate when our patients and families do not have all the information they need ahead of time for both planning and peace of mind. It's usually the worry that is the undoing for most of us.
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Re: 82 year old mother just diagnosed, is struggling
Thank you so much!! I'm not getting as much info from the social worker on her case as I'd like, so this is very helpfu and means I know what to ask about.
At the care-plan meeting yesterday, they said she won't qualify for a bed on the ground floor as she does not have any conditions to be considered for that service. However, once they knew stairs were involved, they have ensured the OT knows this and will work on it, and have made a note that it will likely be a problem. I presume that once we get closer to discharge, a home visit etc will happen. They were hoping to have her home by October 8, but are now expecting to be at least a week beyond that given the extra rehab for stairs etc.
They also are aware that she is extremely non-compliant, and that they will have to repeat / insist / repeat / insist that she follows the protocols for safety. She has ALWAYS been pig-headed and wants to do it her way instead of the safe way! This has been true for the last 40 years, so isn't new or stimulated by this situation, but it is now critical rather than merely "eccentric"!
One other thing that did concern me: They keep pushing an "early-stage dementia" diagnosis on her. Now, I'm not ruling this out - obviously, it must be considered - BUT I am frustrated that even though the doctors acknowledge a possible source of her occasional confusion is the elevated calcium + round-the-clock codeine for pain, which has always made her really loopy, and there is a CLEAR difference in how lucid she is depending on whether she has or has not had pain meds, admin seem to want to jump straight to psych / dementia. It almost feels like that's an "easier" diagnosis for them to deal with than myeloma-related issues, so they'd rather go with that so they can put a rubber-stamp on it and close the file.
Exhausting keeping up with it all, as I can only get full info if I go there in person and talk to the doctors myself and, like so many in my generation, I work and have a family of my own to keep up with as well. I'm worn out.
At the care-plan meeting yesterday, they said she won't qualify for a bed on the ground floor as she does not have any conditions to be considered for that service. However, once they knew stairs were involved, they have ensured the OT knows this and will work on it, and have made a note that it will likely be a problem. I presume that once we get closer to discharge, a home visit etc will happen. They were hoping to have her home by October 8, but are now expecting to be at least a week beyond that given the extra rehab for stairs etc.
They also are aware that she is extremely non-compliant, and that they will have to repeat / insist / repeat / insist that she follows the protocols for safety. She has ALWAYS been pig-headed and wants to do it her way instead of the safe way! This has been true for the last 40 years, so isn't new or stimulated by this situation, but it is now critical rather than merely "eccentric"!
One other thing that did concern me: They keep pushing an "early-stage dementia" diagnosis on her. Now, I'm not ruling this out - obviously, it must be considered - BUT I am frustrated that even though the doctors acknowledge a possible source of her occasional confusion is the elevated calcium + round-the-clock codeine for pain, which has always made her really loopy, and there is a CLEAR difference in how lucid she is depending on whether she has or has not had pain meds, admin seem to want to jump straight to psych / dementia. It almost feels like that's an "easier" diagnosis for them to deal with than myeloma-related issues, so they'd rather go with that so they can put a rubber-stamp on it and close the file.
Exhausting keeping up with it all, as I can only get full info if I go there in person and talk to the doctors myself and, like so many in my generation, I work and have a family of my own to keep up with as well. I'm worn out.
Re: 82 year old mother just diagnosed, is struggling
Wow, great work on getting them to work on the stairs with her. That is very important for her return home.
As to the psych / dementia comments, I would just firmly thank them for bringing it to your attention and just let them know that you need to see how she is once she is stable, has begun treatment, and has some time at home to adjust to all of this.
Working in skilled care is very rewarding, its always wonderful to see people go home. But I sometimes feel we don't give some people enough credit for how they cope in their own environment. My husband is a mess when in the hospital, and even during 2 weeks of skilled care. But he is absolutely fine at home. With his history, people often ask me if he is able to be home alone!
You're obviously very concerned for your mom. If she's not ok once you get her home, you'll know it.
As to the psych / dementia comments, I would just firmly thank them for bringing it to your attention and just let them know that you need to see how she is once she is stable, has begun treatment, and has some time at home to adjust to all of this.
Working in skilled care is very rewarding, its always wonderful to see people go home. But I sometimes feel we don't give some people enough credit for how they cope in their own environment. My husband is a mess when in the hospital, and even during 2 weeks of skilled care. But he is absolutely fine at home. With his history, people often ask me if he is able to be home alone!
You're obviously very concerned for your mom. If she's not ok once you get her home, you'll know it.
Re: 82 year old mother just diagnosed, is struggling
Thank you all, again.
Update of sorts: While in rehab, it's been a bit of a "holding pattern", as far as I can tell. Despite best efforts of the on-call doctor (who was in touch with her oncologist during all of this), they didn't seem to be able to give her anything other than the dexamethasone started a couple of weeks ago, as well as trying to take an aggressive approach to reducing her calcium levels (made difficult because she won't hydrate properly - just won't drink enough water). She complains of constant pain.
When I visited on Thursday, she had a bit of a dry cough. On Sunday, she had a very obvious wet, deep cough. No fever or other signs of infection that I've been told. She began breathing very heavily while lying still, so I slipped out and asked the nurses to check her. Her oxygen rate was at 92%, I believe. They nebulized her and gave her some oxygen, which seemed to help somewhat, but I'm wondering what's going on, and assuming that this is very sinister indeed.
She is scheduled to be sent home tomorrow. To my huge relief, they have approved home nursing assistance as well as continued OT. She has an appointment with her oncologist on Friday. We wanted to get her in as soon as possible.
I am fully expecting bad news sooner rather than later. She looks terrible, is in pain, doesn't want to eat or drink, and now has this wet cough as well.
Advice on what to ask about and how best to be her advocate at this point would be helpful.
Thank you again.
Update of sorts: While in rehab, it's been a bit of a "holding pattern", as far as I can tell. Despite best efforts of the on-call doctor (who was in touch with her oncologist during all of this), they didn't seem to be able to give her anything other than the dexamethasone started a couple of weeks ago, as well as trying to take an aggressive approach to reducing her calcium levels (made difficult because she won't hydrate properly - just won't drink enough water). She complains of constant pain.
When I visited on Thursday, she had a bit of a dry cough. On Sunday, she had a very obvious wet, deep cough. No fever or other signs of infection that I've been told. She began breathing very heavily while lying still, so I slipped out and asked the nurses to check her. Her oxygen rate was at 92%, I believe. They nebulized her and gave her some oxygen, which seemed to help somewhat, but I'm wondering what's going on, and assuming that this is very sinister indeed.
She is scheduled to be sent home tomorrow. To my huge relief, they have approved home nursing assistance as well as continued OT. She has an appointment with her oncologist on Friday. We wanted to get her in as soon as possible.
I am fully expecting bad news sooner rather than later. She looks terrible, is in pain, doesn't want to eat or drink, and now has this wet cough as well.
Advice on what to ask about and how best to be her advocate at this point would be helpful.
Thank you again.
Re: 82 year old mother just diagnosed, is struggling
Hi, sorry things have not progressed as much as you would have liked. This is only my opinion, but I would take her home. Things may seem different in her home environment. If she does well you have her oncology appointment on Friday. If she doesn't, you will have home care to help direct you.
It's likely that Medicare won't pay for treatment while she's in rehab. I would say if you don't get good treatment options on Friday, you better start looking for a multiple myeloma specialist. I think you need the specialist in any case, but I wouldn't skip the oncologist visit on Friday.
Good luck to you.
It's likely that Medicare won't pay for treatment while she's in rehab. I would say if you don't get good treatment options on Friday, you better start looking for a multiple myeloma specialist. I think you need the specialist in any case, but I wouldn't skip the oncologist visit on Friday.
Good luck to you.
Re: 82 year old mother just diagnosed, is struggling
Thanks, Cindylouise - you have been so helpful with all of your answers.
Her oncologist has multiple myeloma as one of his specialties, so I think we're covered there. Her advanced age and general poor health I presume limits treatment options; if she were younger and fitter I would strongly encourage her to seek out second opinions, but at this point I fear "it is what it is". I'm sure you're right about Medicare not covering the treatment during rehab - it has been SO FRUSTRATING, as it seems obvious that 90% of the issues being treated (including the fall which put her in hospital in the first place) were CAUSED by multiple myeloma and yet that's the one thing they weren't prepared to treat in depth.
Just trying to take it one day at a time, do the best I can for her. As far as I know, they still plan to discharge her tomorrow. She is so desperate to have her own (large!) bed, her cat, her tv and videos... just HOME. It can't solve the problems, but I'm sure she'll be happier there, especially now she knows she'll have home help, which has taken a huge burden off her mind as well as mine!! I so hope that her release isn't pushed back again.
Her oncologist has multiple myeloma as one of his specialties, so I think we're covered there. Her advanced age and general poor health I presume limits treatment options; if she were younger and fitter I would strongly encourage her to seek out second opinions, but at this point I fear "it is what it is". I'm sure you're right about Medicare not covering the treatment during rehab - it has been SO FRUSTRATING, as it seems obvious that 90% of the issues being treated (including the fall which put her in hospital in the first place) were CAUSED by multiple myeloma and yet that's the one thing they weren't prepared to treat in depth.
Just trying to take it one day at a time, do the best I can for her. As far as I know, they still plan to discharge her tomorrow. She is so desperate to have her own (large!) bed, her cat, her tv and videos... just HOME. It can't solve the problems, but I'm sure she'll be happier there, especially now she knows she'll have home help, which has taken a huge burden off her mind as well as mine!! I so hope that her release isn't pushed back again.
Re: 82 year old mother just diagnosed, is struggling
Hello Advodaughter,
Thanks for the updates about your mother's status. It's great to hear that she may be going home soon.
In your last posting, you said "Her oncologist has multiple myeloma as one of his specialties, so I think we're covered there." I can't say for certain from what you've said, but I think you have misunderstood what a myeloma specialist is.
A "myeloma specialist" is not someone who has myeloma as just one of several areas of specialisation. A myeloma specialist is someone who sees basically just myeloma patients. If your mother's oncologist, for example, lists multiple myeloma as well as a few forms of leukemia and lymphoma as his "specialties", then he is most likely NOT a myeloma specialist.
A myeloma specialist will typically work at a major cancer center, which often is university-affiliated, and will have multiple myeloma and just a few other plasma cell disorders listed as their only specialties.
Myeloma is not like colon cancer or breast cancer, where a standard oncologist will see lots of cases of the disease every year. It's only about 1 percent of all new cases of cancer.
If you have misunderstood up until now exactly what a "myeloma specialist" is, please get her case reviewed by a physician who truly is a myeloma specialist. If you don't know how to locate one, people here in the forum can help you find one if you let us know where you are located (country, region/state/province).
Good luck!
Thanks for the updates about your mother's status. It's great to hear that she may be going home soon.
In your last posting, you said "Her oncologist has multiple myeloma as one of his specialties, so I think we're covered there." I can't say for certain from what you've said, but I think you have misunderstood what a myeloma specialist is.
A "myeloma specialist" is not someone who has myeloma as just one of several areas of specialisation. A myeloma specialist is someone who sees basically just myeloma patients. If your mother's oncologist, for example, lists multiple myeloma as well as a few forms of leukemia and lymphoma as his "specialties", then he is most likely NOT a myeloma specialist.
A myeloma specialist will typically work at a major cancer center, which often is university-affiliated, and will have multiple myeloma and just a few other plasma cell disorders listed as their only specialties.
Myeloma is not like colon cancer or breast cancer, where a standard oncologist will see lots of cases of the disease every year. It's only about 1 percent of all new cases of cancer.
If you have misunderstood up until now exactly what a "myeloma specialist" is, please get her case reviewed by a physician who truly is a myeloma specialist. If you don't know how to locate one, people here in the forum can help you find one if you let us know where you are located (country, region/state/province).
Good luck!
Re: 82 year old mother just diagnosed, is struggling
Thanks, Ian. He's a hematology oncologist; that may still not be specialist enough, but it's where she was initially referred and she seems to like him. I don't know the details of her insurance network, but will of course find out as needed. We live in a major medical town and if she needs a different doc it shouldn't be too difficult to find somebody (if they can see her, of course) - I swear we have more doctors and hospitals per capita in this town than we do schools (that's not a bad thing, of course, especially when you need them!!). We have at least two world-renowned university teaching hospitals, both of which are major cancer centers. You can be sure I'll be asking the knowledgeable folks here to "vet" anybody if I can persuade her to look further afield.
For now, however, we will go with her appointment on Friday and see what is said. I hope I can get a better picture of where things stand at that point. What a ride!
For now, however, we will go with her appointment on Friday and see what is said. I hope I can get a better picture of where things stand at that point. What a ride!
Re: 82 year old mother just diagnosed, is struggling
Since you live in a city with 2 major cancer centers, call each of them to find out if they have a multiple myeloma program and do research in the area of multiple myeloma. You may be able to get a phone consult with a specialist by sending the oncologist your mother's test results - blood work, BMB, urine tests, etc.
It sounds like your mother really wants to be home. She will be much more comfortable with the things that she is missing and with the people around her who she knows and loves. Rehab is very hard especially if they aren't treating the things that really are causing her problems.
Have they done a chest x-ray to see if she possibly has pneumonia? This is very common in people with myeloma, especially if the myeloma isn't being treated. It's good that she has an appointment with the oncologist tomorrow. Make sure that the breathing problems are being addressed in addition to all of the other problems that your mother is reporting.
All the best to your mother and you,
Nancy in Phila
It sounds like your mother really wants to be home. She will be much more comfortable with the things that she is missing and with the people around her who she knows and loves. Rehab is very hard especially if they aren't treating the things that really are causing her problems.
Have they done a chest x-ray to see if she possibly has pneumonia? This is very common in people with myeloma, especially if the myeloma isn't being treated. It's good that she has an appointment with the oncologist tomorrow. Make sure that the breathing problems are being addressed in addition to all of the other problems that your mother is reporting.
All the best to your mother and you,
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: 82 year old mother just diagnosed, is struggling
Thanks, Nancy. Actually, I realised when I was there to do that the hospital department she's seeing is also a cancer center (not university-affiliated, which is why I forgot about it).
In any case, FINALLY an appointment today with some substance. Based on what you have all said, the doctor's care plan seems reasonable. Bottom line: she's in pretty bad shape (although she has not yet been staged - I presume after the next round of bloods/chems that will start to be discussed) BUT he feels treatment is warranted. He said he's had patients doing far worse than she is who have responded well; we won't know until we try her on it.
She will be taking
Revlimid 21 days on / 7 days off
Dexamethasone 40 mg on day one, then 20 mg on days 2 / 3 / 4, repeated weekly (this also to help with the pain, since oxycodone has not been a great success and the steroid will act as an anti-infllammatory)
Bisphosphonate infusion / shot to be administered in the next week or so
Allopurinol
Because she has a very localized pain spot in her ribs, he has suggested that it may be worth considering a single zap of radiation for that one specific spot to help with the pain (but not upset bone marrow production too much); that will be one of the things to discuss at future appointments.
I will say I was overall impressed by the practice. They answered questions openly and clearly, gave me the information I wanted, and were also very compassionate in talking to my mom, asking her to think about what SHE wants, how SHE feels about treatment, where SHE hurts.
But, bedside manner is not "treatment". Does what I'm outlining here seem an appropriate course of action?
In any case, FINALLY an appointment today with some substance. Based on what you have all said, the doctor's care plan seems reasonable. Bottom line: she's in pretty bad shape (although she has not yet been staged - I presume after the next round of bloods/chems that will start to be discussed) BUT he feels treatment is warranted. He said he's had patients doing far worse than she is who have responded well; we won't know until we try her on it.
She will be taking
Revlimid 21 days on / 7 days off
Dexamethasone 40 mg on day one, then 20 mg on days 2 / 3 / 4, repeated weekly (this also to help with the pain, since oxycodone has not been a great success and the steroid will act as an anti-infllammatory)
Bisphosphonate infusion / shot to be administered in the next week or so
Allopurinol
Because she has a very localized pain spot in her ribs, he has suggested that it may be worth considering a single zap of radiation for that one specific spot to help with the pain (but not upset bone marrow production too much); that will be one of the things to discuss at future appointments.
I will say I was overall impressed by the practice. They answered questions openly and clearly, gave me the information I wanted, and were also very compassionate in talking to my mom, asking her to think about what SHE wants, how SHE feels about treatment, where SHE hurts.
But, bedside manner is not "treatment". Does what I'm outlining here seem an appropriate course of action?
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