Medical care & Sci-fi movies

MichelleP
MichelleP Member Posts: 254
edited March 2014 in Caregivers #1
My hubby was in the hospital last week again with pneumonia. On the 3rd day they told me he was ready to leave (which I still doubt) and they wanted to send him to what they called a "Rehab facility" for about 2 weeks for physical therapy.

When he was released from the hospital we went to this "rehab facility" which was more like a convelescent home. Turns out that MOST of his medications were unavailable there even though we were assured they would be. It continued to get worse from there...the RN came into the room and clearly he had some serious physical problems himself (appeared to be Parkinson's to me). He couldn't stand up and was shaking so badly he couldn't even hold a pen in his hand. GOOD LORD! He says that they have the IV antibiotics and that HE will access my husbands port. Can you imagine...shaking the way he was? I'm totally in shock and watching him "attempt" to examine my husband.....low and behold he FALLS ON TOP OF HIM!!! I immediately informed them that we were leaving. After a few hours of their empty threats about being financially responsible and the doctor must issue an order before being permitted to leave.......we FINALLY got home at 3AM.

I couldn't make up this kind of story for a Sci-fi movie if I tried! I don't care what it takes out of me physically, I will never let my husband go to a place like that again. Sometimes just when you don't think you can go on because you're so tired.....somehow....somewhere....through sheer will I guess....you will indeed.

Comments

  • SonSon
    SonSon Member Posts: 174
    Great Subject Heading
    Ok, I was intrigued by the title you gave the discussion thread and thought you would be exaggerating... but it really did sound like a horror movie!
    I am glad you left.
    Your hubby may still benefit from rehab - but perhaps some shopping around is in order.
    Fatima
  • esined
    esined Member Posts: 22
    As I follow your story I am
    As I follow your story I am constantly amazed at your strength. You are a great advocate for his health. My thoughts and prayers are with you. Denise
  • MichelleP
    MichelleP Member Posts: 254
    esined said:

    As I follow your story I am
    As I follow your story I am constantly amazed at your strength. You are a great advocate for his health. My thoughts and prayers are with you. Denise

    Denise
    Thank you for your kind words.....I don't hear that too often.
  • MichelleP
    MichelleP Member Posts: 254
    SonSon said:

    Great Subject Heading
    Ok, I was intrigued by the title you gave the discussion thread and thought you would be exaggerating... but it really did sound like a horror movie!
    I am glad you left.
    Your hubby may still benefit from rehab - but perhaps some shopping around is in order.
    Fatima

    Fatima
    Thanks for your kind words.........as far as rehab, after Friday night I don't trust any of them now. I am familiar with pt that he was given before and I will just do it myself. I want him home where he is safe and loved..........dearly.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    MichelleP said:

    Denise
    Thank you for your kind words.....I don't hear that too often.

    Beautiful Photograph............
    It tells your whole story.....Thank you for sharing such a beautiful picture. Also, thanks for what you do for him, caregivers are Godsends. Bless you both, Clift
  • sue Siwek
    sue Siwek Member Posts: 279
    a hair raising experience!
    a hair raising experience! it is just another reason why caregivers must be assertive for their loved one. we must question treatments, insist and persist for what we know is in their best interest. often it is difficult or one may feel timid at first but get over it and barrel through! glad you got him out of there, i would have reported the nurse to whom ever was in charge, it may not have been parkinson's it may have been drug or alcohol abuse troubling the nurse.
  • akbetty
    akbetty Member Posts: 38
    Good for you, Michelle
    You absolutely did the right thing. That sounds like an appalling situation you and your husband were subjected to. If we, as caregivers don't stand up and fight for our loved ones, no one will. Your husband is very lucky to have you. I am impressed by your strength.
    Betty
  • MichelleP
    MichelleP Member Posts: 254
    akbetty said:

    Good for you, Michelle
    You absolutely did the right thing. That sounds like an appalling situation you and your husband were subjected to. If we, as caregivers don't stand up and fight for our loved ones, no one will. Your husband is very lucky to have you. I am impressed by your strength.
    Betty

    Good news my friends
    After faxing the hospital, Pcp, Medical Group, Oncologist and calling the Case Manager....I got a phone call today telling me that there have been "immediate arrangements" for a home health nurse to start IV antibiotics every 6 hours for the next 14 days! PLUS, physical therapy visits 2 times a week for the next 6 weeks!

    I asked "why" we were suddenly be treated with such wonderful care and was told they were afraid of a lawsuit because he was sent to a facility that was not prepared to care for him even though they said they were.

    I never thought of a lawsuit! hummmm
  • SonSon
    SonSon Member Posts: 174
    MichelleP said:

    Good news my friends
    After faxing the hospital, Pcp, Medical Group, Oncologist and calling the Case Manager....I got a phone call today telling me that there have been "immediate arrangements" for a home health nurse to start IV antibiotics every 6 hours for the next 14 days! PLUS, physical therapy visits 2 times a week for the next 6 weeks!

    I asked "why" we were suddenly be treated with such wonderful care and was told they were afraid of a lawsuit because he was sent to a facility that was not prepared to care for him even though they said they were.

    I never thought of a lawsuit! hummmm

    Lawsuits...
    If that is in the back of your mind be sure to write summaries of events that include dates, times, names - very important in legal proceedings and can become vague over time (our minds only remember so much).
    Fatima
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    I'm always so impressed with
    I'm always so impressed with your posts. This caregiving is hard. It's too bad you had to deal with this incompetence. It makes you wonder what happens when the people don't have someone to make sure their loved ones are being cared for properly. It's scary! Keep up the good work. Fay
  • esined
    esined Member Posts: 22
    SonSon said:

    Lawsuits...
    If that is in the back of your mind be sure to write summaries of events that include dates, times, names - very important in legal proceedings and can become vague over time (our minds only remember so much).
    Fatima

    Fatima is correct in
    Fatima is correct in documenting everything. Get a bound book that shows no pages were removed and write in ink, numbered pages is better. Also follow up if you can with a letter to them making their statements back to them. In court those can be used as it is the recipient of the letter that must make the rebuttle, otherwise it can be considered as proof of the event. But of course it is his health that is the most important and as a result of you advacacy he is getting much better treatment.

    Denise
  • jbenford
    jbenford Member Posts: 4
    Been there
    I am new here....My husband was diagnosed with Non Hodgkin's Lymphoma B Burkett's Like. He had played 18 holes of golf 3 days before. Saw a doctor when his nose started bleeding and he didn't feel right. This man was totally healthy and not on any type of medications. He was told he had allergies and was sent home. I was out of town and came home that very night. Found him in bed, nose bleeding, pale white, sweating, and bruises along his abdomen and legs. We then went to the ER, he was admitted with a possible "viral" infection. No one could understand why his platelets were so low. After 3 days in the hospital and a weekend to just sit at home,we were referred to an oncologist. When we got to her office she immediately sent us into the city where he was admitted to an oncology intensive care unit. This was Sept. 2008. Bone marrow biopsy was done. No normal cells seen. All cancer lymphoma cells. Kidney's were shutting down due to fast rate of cancer cells multiplying and dying. Went on dialysis for 2 months. Chemo regimen over period of 3 months while in hospital and then continuing until May of 2009. Chemo ended in May. Kidney's returned to normal. My question after all this is are we the only cancer patients who have to use a wheelchair and who can hardly talk? We were told while in the hospital that these were "side effects" from the chemo and that they will go away. My husband can only walk with a walker and if long distances needs a wheelchair. His speech is slurred and it is very difficult to understand him. The doctor's are so very pleased about his cancer being gone (negative scans etc) but very little is said about him not being able to walk or talk. This man was an active, gainfully employed person, loving life, playing golf, happy and loving everyone. His blood counts are all normal. He continues to have a positive attitude. He is not depressed, sad at times when he thinks about all the things he is not able to do. He did have some heart damage where his ejection fraction went down to 35 but that has healed and it is almost normal now. The patients we see when we go to the doctor's office are all walking, and talking. Has this happened to anyone else out there? These symptoms came on all of a sudden when he was in the hospital. At first he could not sit up by himself. He had vertigo so bad he would sway from side to side, and said his head was spinning. Over time things got better but he is still left with balance issues and talking issues.
  • trish07
    trish07 Member Posts: 138
    jbenford said:

    Been there
    I am new here....My husband was diagnosed with Non Hodgkin's Lymphoma B Burkett's Like. He had played 18 holes of golf 3 days before. Saw a doctor when his nose started bleeding and he didn't feel right. This man was totally healthy and not on any type of medications. He was told he had allergies and was sent home. I was out of town and came home that very night. Found him in bed, nose bleeding, pale white, sweating, and bruises along his abdomen and legs. We then went to the ER, he was admitted with a possible "viral" infection. No one could understand why his platelets were so low. After 3 days in the hospital and a weekend to just sit at home,we were referred to an oncologist. When we got to her office she immediately sent us into the city where he was admitted to an oncology intensive care unit. This was Sept. 2008. Bone marrow biopsy was done. No normal cells seen. All cancer lymphoma cells. Kidney's were shutting down due to fast rate of cancer cells multiplying and dying. Went on dialysis for 2 months. Chemo regimen over period of 3 months while in hospital and then continuing until May of 2009. Chemo ended in May. Kidney's returned to normal. My question after all this is are we the only cancer patients who have to use a wheelchair and who can hardly talk? We were told while in the hospital that these were "side effects" from the chemo and that they will go away. My husband can only walk with a walker and if long distances needs a wheelchair. His speech is slurred and it is very difficult to understand him. The doctor's are so very pleased about his cancer being gone (negative scans etc) but very little is said about him not being able to walk or talk. This man was an active, gainfully employed person, loving life, playing golf, happy and loving everyone. His blood counts are all normal. He continues to have a positive attitude. He is not depressed, sad at times when he thinks about all the things he is not able to do. He did have some heart damage where his ejection fraction went down to 35 but that has healed and it is almost normal now. The patients we see when we go to the doctor's office are all walking, and talking. Has this happened to anyone else out there? These symptoms came on all of a sudden when he was in the hospital. At first he could not sit up by himself. He had vertigo so bad he would sway from side to side, and said his head was spinning. Over time things got better but he is still left with balance issues and talking issues.

    Side Effects From Chemo???
    Did these side effects present themselves right away after 1st infusion of chemo? My husband had a rare side effect from the drug "Avastin" after just one treatment. He woke up from a nap and couldn't talk, it had all the outward appearances of a stroke.

    After several different procedures it was discovered that the "Avastin" had caused the vessels in his brian to leak fluid, which mimicked a stroke. Needless to say, he was not given "Avastin" again. His speech returned in about 24 hrs., but oncologist said we would not be using this drug again,to continue would have caused permanent damage.

    Take Good Care, Trish
  • akbetty
    akbetty Member Posts: 38
    trish07 said:

    Side Effects From Chemo???
    Did these side effects present themselves right away after 1st infusion of chemo? My husband had a rare side effect from the drug "Avastin" after just one treatment. He woke up from a nap and couldn't talk, it had all the outward appearances of a stroke.

    After several different procedures it was discovered that the "Avastin" had caused the vessels in his brian to leak fluid, which mimicked a stroke. Needless to say, he was not given "Avastin" again. His speech returned in about 24 hrs., but oncologist said we would not be using this drug again,to continue would have caused permanent damage.

    Take Good Care, Trish

    Avastin
    My husband also had a problem with avastin, not as severe as you are describing, Trish, but the dr. stopped it after two treatments because my husband had blacking out and black specks in one eye. The dr. said he had a chance of a more serious reaction, so we stopped. To the poster whose husband has trouble walking and talking, I would NOT just accept what they tell me. You need to be relentless about pointing out that the problem is not going away, and insist that they take it seriously. My thoughts are with you and your husband.
    Betty
  • SonSon
    SonSon Member Posts: 174
    esined said:

    Fatima is correct in
    Fatima is correct in documenting everything. Get a bound book that shows no pages were removed and write in ink, numbered pages is better. Also follow up if you can with a letter to them making their statements back to them. In court those can be used as it is the recipient of the letter that must make the rebuttle, otherwise it can be considered as proof of the event. But of course it is his health that is the most important and as a result of you advacacy he is getting much better treatment.

    Denise

    Letters sent...
    ... when sending letters to doctors, hospitals etc be sure to scan a copy of what you sent so you can SHOW the court what you sent - and if you send it certified you have a tracking number that cannot be denied.
    Fatima
  • MichelleP
    MichelleP Member Posts: 254
    SonSon said:

    Letters sent...
    ... when sending letters to doctors, hospitals etc be sure to scan a copy of what you sent so you can SHOW the court what you sent - and if you send it certified you have a tracking number that cannot be denied.
    Fatima

    copies
    I faxed over the week-end and have the proof of those. I had also started a "medical diary" back in Jan 09 and have all events recorded. I'm so happy that I did this because I'm sure that somehow it will be needed.

    I really resent what's happening to us with the doctors and hospitals where we live. It's hard enough walking this journey with my husband without having to battle doctors and insurance companies for every little thing he needs.

    Today is my Birthday and it looks like it will be constant phone calls and faxes again. I keep thinking how wonderful it would be to just enjoy a quiet dinner out with my husband. But since that's not possible we'll have a quiet time together at home! :)