Katsmeow
Give me a museum and I'll fill it. (Picasso) Give me a forum ...
- Joined
- Jul 11, 2009
- Messages
- 5,329
This thread is mostly about expressing my frustration at finding it so hard to get clarity on my mom's prognosis. Specifically, how close it is to the end and what to expect. (apologize for the length but a lot has happened the last 2 months). I do have my mom's health care POA and the rehab she is in will talk to me.
My mom is 94 and has advanced heart failure, as well as Type II diabetes and kidney disease. Despite having all these problems for years, she was actually doing pretty well until a couple of months ago. She was living on her own. She has no dementia and was doing everything for herself. Through the years we have asked her to move in with us many, many, many times but she always refused. She liked her independence and said she wouldn't do it until she had to. During all these years, I've lived about 250 miles from her.
A little over a month ago, we sold our house and moved to her area (not so much because of her specifically -- we have other family/friends in the area as well). We are in a short term apartment rental while waiting to close on the house we have under contract.
During the past several years, my mom's heart failure has given her few problems. She had some swelling of her feet and exertion would tire her. She walked slowly, but that was all. The diabetes took most of the effort in her health management.
About 2 months ago, she went to the ER due to shortness of breath. She was hospitalized for several days then went to rehab for 2 weeks. All of this was before we moved here. I saw her in the hospital and rehab a couple of times during visits. About the time we moved here, she was discharged home from rehab. For the first time, she was using oxygen. She had home health care coming 3 times a week.
Two days after she arrived home we went to visit her and found her on the floor in her kitchen. She had gotten dizzy due to low blood sugar and had fallen. She didn't break anything but couldn't get up (too weak). I called 911 and she went back to the ER. They got her blood sugar up but kept her there because she was too weak to get up or to walk. After a few days in the hospital, she went to a different rehab. That was about a month ago. She is still there. They are saying she will be discharged soon (not so much because they think she is ready but they think Medicare will turf her out).
Before she went to the rehab, her regular doctor called me. She said that my mom is in a slowly declining condition. She says it isn't a fast decline. It could become fast if she got an infection or something else happened. She didn't think my mom would get back to where she was before she was hospitalized. But, she felt she might be able to improve enough in rehab to come live with me. If not, she would need to go to a nursing home.
I asked her where she saw this all going. She was somewhat helpful. She said she hated the question because it is so difficult to know for sure. She did say that if my mom didn't improve then hospice was an option. She also said that she wasn't sure if my mom could handle "aggressive physical therapy" and that she might need or want palliative care. She said that if my mom went to rehab the doctor there could order palliative care if she wanted it. She did feel my mom might improve to be mobile enough to live with us but she didn't think my mom should live at home. She eventually more or less said that she expected my mom to live 6 months to a year although it could be less if she got an infection or something else occurred. And, it could potentially be more if she improved.
I don't know if any of this was discussed with my mom. i don't think it was (I think the part about her living situation was but not the prognosis/hospice/palliative care part). My mom does know that her heart failure isn't curable.
That conversation was at least helpful. Since then, it has been frustrating to try to figure out her current prognosis. She started out doing fairly well at rehab. She did therapy and went from being able to walk 10 feet to walking 160 feet (with the walker). On the other hand, she has had almost no appetite and refuses to eat meat (her doctor had said one of the reasons she wasn't getting stronger was because of not eating enough protein). Also, she still has a lot of swelling. She has gained 6 pounds which is clearly all fluid as she is barely eating.
About 2 weeks in, she got a mild case of pneumonia. On the one hand, it was a very mild case and she was recovered from it. On the other hand, since she got it she has become much weaker. Before the pneumonia she was spending most of the day sitting up in a recliner. Now, she stays in bed the entire day except when she goes to therapy or the bathroom.
She still wanted, though, to go home. The facility did a home evaluation today and recommended against her going home alone. She finally acquiesced to moving in with us "until she gets stronger." It is fairly clear she won't get stronger. She actually moves fairly well with her walker when she gets up. But, she has a lot of trouble getting up. Also, sometimes she can't get her feet up on the bed (not enough strength). Other days she can.
I can't seem to get any clear information about, well, where this is going with her. I mean, I know that she won't survive this. But, I'm not sure if the 6 months to a year is still operative or if she is declining more rapidly. And, I'm not sure how to find out. There are a couple of nurse practitioners who come by each day and check her. There is supposedly a physician who sometimes comes by but I haven't seen him. Whenever a nurse practitioner has come by my mom is always there. I honestly don't think she realizes how dire her situation really is.
Yesterday, I called my mom on the phone and she asked me to call back later. She told me later that she had been too weak to talk to me. She says everything tires her even brushing her teeth. That was the day she agreed to temporarily move in with us.
I am uncertain whether palliative care should be considered at this point. Basically I don't want my mom to be made uncomfortable with attempts at therapy or trying to get her to eat if she is beyond the point of any of it helping her. At the same time, I don't want to assume that she is beyond that point if she isn't. I know she is starting to get very tired.
If she was being treated by her regular doctor (who has seen her for the last few years) I would talk to her. But, in the rehab situation with someone who does a cursory check each day (and it varies who does it each day) it is harder to find out information. I do have the number of the nursing director. She came in my mom's room once to talk about her discharge plans (at that time my mom was still wanting to go home alone). So, I could call her.
In a sense I'm not really sure what to ask. I guess I want to know what is expected to happen and when and see if that affects what my mom should be doing going forward. But, I'm having a hard time figuring out who to ask (if anyone). I had that good conversation with her doctor which did help, but since then there has been nothing so I don't know if that timeline is still operative.
I remember when my dad died. He was in the hospital for months before he died. In retrospect, it is obvious that he was dying. But, it was never discussed at the time. He was never in hospice. When he went from being treated to being dead 3 days later, it was a big shock. Looking back on it, I think that could have all been handled much better but he was on that treadmill of treatment and I don't think anything else was every even discussed.
My mom is 94 and has advanced heart failure, as well as Type II diabetes and kidney disease. Despite having all these problems for years, she was actually doing pretty well until a couple of months ago. She was living on her own. She has no dementia and was doing everything for herself. Through the years we have asked her to move in with us many, many, many times but she always refused. She liked her independence and said she wouldn't do it until she had to. During all these years, I've lived about 250 miles from her.
A little over a month ago, we sold our house and moved to her area (not so much because of her specifically -- we have other family/friends in the area as well). We are in a short term apartment rental while waiting to close on the house we have under contract.
During the past several years, my mom's heart failure has given her few problems. She had some swelling of her feet and exertion would tire her. She walked slowly, but that was all. The diabetes took most of the effort in her health management.
About 2 months ago, she went to the ER due to shortness of breath. She was hospitalized for several days then went to rehab for 2 weeks. All of this was before we moved here. I saw her in the hospital and rehab a couple of times during visits. About the time we moved here, she was discharged home from rehab. For the first time, she was using oxygen. She had home health care coming 3 times a week.
Two days after she arrived home we went to visit her and found her on the floor in her kitchen. She had gotten dizzy due to low blood sugar and had fallen. She didn't break anything but couldn't get up (too weak). I called 911 and she went back to the ER. They got her blood sugar up but kept her there because she was too weak to get up or to walk. After a few days in the hospital, she went to a different rehab. That was about a month ago. She is still there. They are saying she will be discharged soon (not so much because they think she is ready but they think Medicare will turf her out).
Before she went to the rehab, her regular doctor called me. She said that my mom is in a slowly declining condition. She says it isn't a fast decline. It could become fast if she got an infection or something else happened. She didn't think my mom would get back to where she was before she was hospitalized. But, she felt she might be able to improve enough in rehab to come live with me. If not, she would need to go to a nursing home.
I asked her where she saw this all going. She was somewhat helpful. She said she hated the question because it is so difficult to know for sure. She did say that if my mom didn't improve then hospice was an option. She also said that she wasn't sure if my mom could handle "aggressive physical therapy" and that she might need or want palliative care. She said that if my mom went to rehab the doctor there could order palliative care if she wanted it. She did feel my mom might improve to be mobile enough to live with us but she didn't think my mom should live at home. She eventually more or less said that she expected my mom to live 6 months to a year although it could be less if she got an infection or something else occurred. And, it could potentially be more if she improved.
I don't know if any of this was discussed with my mom. i don't think it was (I think the part about her living situation was but not the prognosis/hospice/palliative care part). My mom does know that her heart failure isn't curable.
That conversation was at least helpful. Since then, it has been frustrating to try to figure out her current prognosis. She started out doing fairly well at rehab. She did therapy and went from being able to walk 10 feet to walking 160 feet (with the walker). On the other hand, she has had almost no appetite and refuses to eat meat (her doctor had said one of the reasons she wasn't getting stronger was because of not eating enough protein). Also, she still has a lot of swelling. She has gained 6 pounds which is clearly all fluid as she is barely eating.
About 2 weeks in, she got a mild case of pneumonia. On the one hand, it was a very mild case and she was recovered from it. On the other hand, since she got it she has become much weaker. Before the pneumonia she was spending most of the day sitting up in a recliner. Now, she stays in bed the entire day except when she goes to therapy or the bathroom.
She still wanted, though, to go home. The facility did a home evaluation today and recommended against her going home alone. She finally acquiesced to moving in with us "until she gets stronger." It is fairly clear she won't get stronger. She actually moves fairly well with her walker when she gets up. But, she has a lot of trouble getting up. Also, sometimes she can't get her feet up on the bed (not enough strength). Other days she can.
I can't seem to get any clear information about, well, where this is going with her. I mean, I know that she won't survive this. But, I'm not sure if the 6 months to a year is still operative or if she is declining more rapidly. And, I'm not sure how to find out. There are a couple of nurse practitioners who come by each day and check her. There is supposedly a physician who sometimes comes by but I haven't seen him. Whenever a nurse practitioner has come by my mom is always there. I honestly don't think she realizes how dire her situation really is.
Yesterday, I called my mom on the phone and she asked me to call back later. She told me later that she had been too weak to talk to me. She says everything tires her even brushing her teeth. That was the day she agreed to temporarily move in with us.
I am uncertain whether palliative care should be considered at this point. Basically I don't want my mom to be made uncomfortable with attempts at therapy or trying to get her to eat if she is beyond the point of any of it helping her. At the same time, I don't want to assume that she is beyond that point if she isn't. I know she is starting to get very tired.
If she was being treated by her regular doctor (who has seen her for the last few years) I would talk to her. But, in the rehab situation with someone who does a cursory check each day (and it varies who does it each day) it is harder to find out information. I do have the number of the nursing director. She came in my mom's room once to talk about her discharge plans (at that time my mom was still wanting to go home alone). So, I could call her.
In a sense I'm not really sure what to ask. I guess I want to know what is expected to happen and when and see if that affects what my mom should be doing going forward. But, I'm having a hard time figuring out who to ask (if anyone). I had that good conversation with her doctor which did help, but since then there has been nothing so I don't know if that timeline is still operative.
I remember when my dad died. He was in the hospital for months before he died. In retrospect, it is obvious that he was dying. But, it was never discussed at the time. He was never in hospice. When he went from being treated to being dead 3 days later, it was a big shock. Looking back on it, I think that could have all been handled much better but he was on that treadmill of treatment and I don't think anything else was every even discussed.
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