Family in Crisis - Lost and Not Found
Once again my family finds itself in a difficult situation with my eldest sister. We are stuck between a rock and a hard place, while also standing directly on top of a fire ant hill. It is nearly an impossible situation from which I cannot see any solution on the far hazy horizon. It is a situation which has drained the life, the joy, and the energy out of everyone involved, and has done so for the last 5 or so years.
7 years or so ago my sister was working as a server in a restaurant and living life just fine, despite her dependence on alcohol. She has been a functioning alcoholic for most of her adult life. Then one night she broke her ankle, and then months later she broke her thumb, and after those long recovery periods she developed spine issues. At this time she also developed depression and anxiety, and had a prescription painkiller addiction. There were other issues before and during these periods where her drinking caused her legal issues. I won't go into those, or the many issues over the years.
Suffice to say that her life has been a rollercoaster ride since she was a teenager. But then again, so has mine, and most people who I've known during my life. It is a matter of levels and perspective. Some people manage to have learned from their mistakes in life, while other people never seem to.
During the recovery from the broken ankle, after months of inactivity, my sister was diagnosed with Type 2 diabetes of the type that required insulin injections. Then, she developed Lymphedema and basically became unable to walk. She underwent Spinal Fusion Surgery, which may or may not have been a success, however she didn't participate in the physical rehabilitation after that surgery. She said was in too much pain to do it. After that she more or less was relegated to using a wheelchair and walkers. She never underwent further spinal surgeries because she was never in good enough health to handle those.
My sister began to deteriorate both mentally and physically. It got to the point where she being taken to the hospital multiple times a month, and hospital stays and nursing home stays for weeks at a time or longer. We'd have to call EMS to help get her off the ground, or off the toilet, or off the floor of her bedroom. There was one night I had to call them on 3 separate occasions because she could not get off the ground of the parking lot, then could not get off the toilet, and later could not get out of bed.
During this time period she also began exhibiting symptoms of Hoarding Disorder. She had stacks of unopened mail everywhere, boxes and bags all over, food rotting in drawers, and her bed was cluttered with paperwork and bottles and clothes, with just enough space for her to lay down on one side of the bed. The floors were blocked with bags of clothes and boxes and litter. Some of her family members were dismissive of this when I talked about the, to me, obvious signs of Hoarding Disorder. They didn't believe it. I guess they thought she was just being lazy.
It got worse and worse, until finally she was living on a blanket on the floor of her bedroom because she could not get into bed, and once she was on the floor, she could not get up. After her spinal surgery she had to start wearing adult diapers because of incontinence. Because of her mental and physical deterioration it became a major problem with cleaning herself and changing herself. I won't go into specifics because it is not pleasant. What I will say is that on top of all of that, she developed C-Diff (Clostridioides difficile) which is a bacterial infection, very contagious, that causes severe diarrhea and colitis (an inflammation of the colon).
With all of this going on, she never stopped smoking, and never stopped secretly drinking alcohol, and abusing both over the counter and prescription medications. Her mind and body rebelling, it is not unusual for someone to do this. But she refused to go to the hospital, refused when she was taken by EMS to be admitted to hospitals, and the times when they sent her to nursing homes she refused to participate in her own recovery. This to me screams of a mental disorder, but she was never treated for it, only for her physical health. When she was admitted to nursing homes for physical rehabilitation and refused to cooperate or participate, she was basically kicked out (involuntarily released) from several nursing homes and put on a blacklist and no nursing home would accept her.
It got to the point where she was on her bedroom floor completely out of it, but refusing to allow EMS to take her to a hospital. I called her eldest son who lives out of State and told him that he needed to come up now because if you don't she will die. And I was serious about that. She would have died if something had not been done.
Her son did come all the way here from out of State and he did save her life. He fought tooth and nail and got her into a nursing home, got her bills and paperwork organized, and he even acted as a caregiver until he could get her into that nursing home. If he had not come, she would have died on her bedroom floor laying in her own filth. I wish I was overstating that, but unfortunately, I am not. It is the cold hard truth.
***
So we fast forward 2 years later, leaving out a lot of drama and problems and issues that came before and during. We get past the nursing home stay, we get past the pandemic (which was very difficult for people in nursing homes), and my sister is finally released to a newly acquired apartment at a complex that is specifically for older and disabled people. Low rent, small apartment footprint, downsized kitchen, and so on. It sounds perfect! Right?
That apartment is located 20 miles away from me, 20 miles away from her son who lives in town, and she is living on her own, alone, in a wheelchair. What could go wrong?
Everything.
She had in-home health care, doctors and nurse practitioners who visited several times a week, but no one living with her, and no one monitoring her day to day health, or cleaning, or making sure she didn't spend all of her money on food delivery or items off the Internet. Her bills were not being paid, her mail wasn't being opened, and once again she deteriorated.
Both me and her son who lives in town, we both had many issues with her calling at all hours with emergencies, prescription requests, her being out of cigarettes, and a host of other things. It was very difficult for both of us. Her eldest son bought her a Facebook Portal a few years ago so that we can cam with her, but often she would not answer that cam call or her phone. We'd call for hours, sometimes all day, and finally have to drive all the way over there to discover her just sitting there. She said she wasn't in the mood to talk to anyone.
Since she was released from the long time stay at a nursing home she has been back to the hospital several times for a week or more stay, and also back to nursing homes for a few weeks at a time. The last time she went in one it was over a month in the nursing home for rehabilitation after she could not get out of her wheelchair unassisted for days at a time. She also had wounds and infections on the bottom of her feet, and her legs were swollen double size.
She was released on July 15th. I took her back home, cleaned her house, did her shopping, etc.. She seemed to be ok, within reason. I talked to her every day and went back again on the 22nd to get some things she needed. She seemed fine, but a little drowsy. That should have warned me that she was doing something she should not have been doing.
When I was there I noticed several boxes up against the wall and saw that she had ordered a large smoker BBQ from Amazon, and later discovered there were purchases she made that week too. I assume she had the idea that she'd have her neighbors and son come cook out at her place, since it was her son's birthday that week. She told me she had planned a cook out but her neighbors who had agreed to do it decided not to at the last minute. She seemed upset and a little depressed about that. She also looked a bit crestfallen when I told her I had to leave to go home to attend to my father. I had been there for several hours and two different nurses had come at different times while I was there that day. Despite that, she seemed to me to be depressed when I said I had to leave.
I talked to her on Friday on cam. She said her back was bothering her and she looked exhausted and listless. She was preparing to lay down in her bed for a while. We ended the cam chat and that was it. The next day she didn't answer my calls or messages. I tried many times, and also called the next day, Sunday. I even IMed my sister who lives out of State and the son who lives here to ask them if they had talked to her. Neither had.
When I spoke to my nephew on the phone he said he had a bad feeling, so he and his girlfriend drove over to her place to check on her. It is a very good thing that they did, because she was in very bad condition! 103 degree fever, her urine bag had dark colored urine, the hose for it was hot where it goes into her body, and she was sitting on the edge of her bed with her adult diapers down to her knees with feces on the bed and floor - and sitting in a room with the air conditioning turned off in 90 degree weather.
My nephew discovered both full, and empty or partially empty liquor bottles in her room. Her prescription painkillers that were ordered and delivered that week, a months supply, was almost all gone. 3/4 of a months supply used up in less than a week.
Where did she get the alcohol?
She ordered it online and had it delivered.
My nephew called 911 and had EMS come out against my sister's wishes. They showed up, checked her out, and wanted to take her to the hospital. Another team came in and told her, "You are going. That's it. You ARE going to the hospital." - and she finally stopped fighting them on it. But even when she was at the hospital she argued and tried to refuse admittance and care. My nephew stayed there with her until 2 AM and finally got her to agree to accept treatment and admission.
I am leaving a lot of things out about what went on that day and much of what happened over the last 3 years. I will say that my sister could not recall her current apartment or the fact that she required a wheelchair that night while they were trying to get her situated. She thought she was still living in her apartment from 3 years ago and could walk on her own.
Despite that, today I received a call from the hospital administration asking me if I would be agreeable to them sending my sister to a nursing home for rehab again. The person on the phone said that my sister was being argumentative, refusing to accept treatment, was refusing to do rehab, and wanted to be released back to her apartment. I told them in no uncertain terms that she could not go back to her apartment, that she lived alone, and had done this all to herself in a 2 day period. I stressed for the 100th time over these last long 3-4 years, that my sister desperately needs psychological treatment and behavioral rehabilitation. She cannot be left on her own, alone. She simply cannot be. Not without serious mental health help.
My sister, for the last 7 or so years, except for those periods when she was in a nursing home, when one of her sons had a birthday, or one of them was celebrating a anniversary, or going on vacation, or something special that she was not involved in, she ended up having some emergency or was hospitalized. My other family members don't remember that, obvious, but I do because I am a diarist and write everything down.
My sister does not like being in a nursing home, which I completely understand, but she thrives when she is in one. She gets better, mentally and physically. She is taken care of, her medications are monitored, she is fed, AND she has constant social interaction with people all day, every day. My sister is and always was a very social person. She is not a loner who can be fine and dandy all alone, like I can. She learns everything about everyone in a short period of time. She is, as I said, a very social person.
The problem is when she is on her own, alone with her own thoughts, and no one taking care of her, no one living with her, and no one to talk to. That's when things go downhill. They discharge her from that social environment with no psychological or behavioral rehabilitation and expect her to be ok. She won't be, and wasn't, and never will be. She is not just being lazy, she is not just "her being her", she has serious mental issues that have never been addressed or treated. Yet, they keep on releasing her from hospitals and nursing homes. They probably just want her gone, because she can be a real pain the rear to deal with.
So! What can we do? No one in my family has the extra money to pay for her to be in an assisted living facility, and there are reasons I will not go into why she cannot move in with her son who lives out of State. She cannot live with her son and his girlfriend who live in town because they lived through that before and won't do it again, which I totally understand. She cannot live me and my 88 year old father either. That ship sailed 8 years ago when she had the opportunity to move in with us and decided at the last minute not to move in. It is no longer possible because we downsized to a smaller place and my father needs his own care now.
And to be completely honest, I do not want to be a caregiver again in my life - except for the modest caregiving for my father. My health is not great, my body is not up to it anymore, and I have my own issues to deal with, both health and other. So, that leaves my sister with what options? None.
What do we do with someone who is, when on their own, totally self-destructive? We all thought that maybe her living alone in her small apartment would work out because she has in-home health care coming by several times a week, doctors too, and her medications were being delivered, and she has neighbors too. Despite all of that, she probably spends most of her time alone, in her own head, smoking non-stop, watching television, and not taking care of herself properly.
I have no idea what to do. I am sure her sons don't know can be done either. Sure, we could hire someone to stop by every day, but I don't believe that will be enough. I did say that I was there on Thursday, 2 nurses were there too at different times, and she had other visits that week, and she still self-destructed. I for sure cannot drive over there every day and spend hours with her. That's not possible. Her son can't either. All we can do is call her, and cam her, but that appears not the be enough for her. She needs mental health help, supervision, and social interaction.
I am sure many other people have gone through this exact same scenario, or close to it, and others will experience it later in life, very unexpectedly. What did those people do, how they managed it, and what can be done for our at-risk and very vulnerable family members and friends? Does anyone have advice? Does anyone have a solution? Is there no solutions at all? Time will tell.
When I write my longer blog entries I almost always write them in one single sitting, in one flow of consciousness, and it wears me out completely. This one took its toll on me because of the deep personal nature of it. I am not worried that some family members will be upset that I disclosed so much "personal and embarrassing" information about family here. I am a lifelong diarist and write everything down, but I rarely put it out in the public. In this case, I am disclosing a lot, but not everything. As lengthy as this blog entry is, it is far less than I could have written. I didn't name names, and only a few people will know who my family members are in real life, so I am not concerned about upsetting one or two people.
Perhaps airing this will help someone one day. They will read it and see that they are not alone, their situation is not unique, and it can be talked about in the full light of day with others, because we all are searching for solutions to what we see is an impossible situation. Who knows, someone might have an answer to one thing, and someone will have another piece, that will all fit together in this jigsaw puzzle.
That is what this impossible situation is: A jigsaw puzzle that is one solid color.
I believe that our situation with my sister is not unique, it is not an aberration, but is actually much more common than anyone believes because people are too embarrassed to talk about it in public, thinking that it has to be a dirty little family secret. It is not a family secret, and there is no embarrassment in saying:
"We are lost! Someone find us!"
7 years or so ago my sister was working as a server in a restaurant and living life just fine, despite her dependence on alcohol. She has been a functioning alcoholic for most of her adult life. Then one night she broke her ankle, and then months later she broke her thumb, and after those long recovery periods she developed spine issues. At this time she also developed depression and anxiety, and had a prescription painkiller addiction. There were other issues before and during these periods where her drinking caused her legal issues. I won't go into those, or the many issues over the years.
Suffice to say that her life has been a rollercoaster ride since she was a teenager. But then again, so has mine, and most people who I've known during my life. It is a matter of levels and perspective. Some people manage to have learned from their mistakes in life, while other people never seem to.
During the recovery from the broken ankle, after months of inactivity, my sister was diagnosed with Type 2 diabetes of the type that required insulin injections. Then, she developed Lymphedema and basically became unable to walk. She underwent Spinal Fusion Surgery, which may or may not have been a success, however she didn't participate in the physical rehabilitation after that surgery. She said was in too much pain to do it. After that she more or less was relegated to using a wheelchair and walkers. She never underwent further spinal surgeries because she was never in good enough health to handle those.
My sister began to deteriorate both mentally and physically. It got to the point where she being taken to the hospital multiple times a month, and hospital stays and nursing home stays for weeks at a time or longer. We'd have to call EMS to help get her off the ground, or off the toilet, or off the floor of her bedroom. There was one night I had to call them on 3 separate occasions because she could not get off the ground of the parking lot, then could not get off the toilet, and later could not get out of bed.
During this time period she also began exhibiting symptoms of Hoarding Disorder. She had stacks of unopened mail everywhere, boxes and bags all over, food rotting in drawers, and her bed was cluttered with paperwork and bottles and clothes, with just enough space for her to lay down on one side of the bed. The floors were blocked with bags of clothes and boxes and litter. Some of her family members were dismissive of this when I talked about the, to me, obvious signs of Hoarding Disorder. They didn't believe it. I guess they thought she was just being lazy.
It got worse and worse, until finally she was living on a blanket on the floor of her bedroom because she could not get into bed, and once she was on the floor, she could not get up. After her spinal surgery she had to start wearing adult diapers because of incontinence. Because of her mental and physical deterioration it became a major problem with cleaning herself and changing herself. I won't go into specifics because it is not pleasant. What I will say is that on top of all of that, she developed C-Diff (Clostridioides difficile) which is a bacterial infection, very contagious, that causes severe diarrhea and colitis (an inflammation of the colon).
With all of this going on, she never stopped smoking, and never stopped secretly drinking alcohol, and abusing both over the counter and prescription medications. Her mind and body rebelling, it is not unusual for someone to do this. But she refused to go to the hospital, refused when she was taken by EMS to be admitted to hospitals, and the times when they sent her to nursing homes she refused to participate in her own recovery. This to me screams of a mental disorder, but she was never treated for it, only for her physical health. When she was admitted to nursing homes for physical rehabilitation and refused to cooperate or participate, she was basically kicked out (involuntarily released) from several nursing homes and put on a blacklist and no nursing home would accept her.
It got to the point where she was on her bedroom floor completely out of it, but refusing to allow EMS to take her to a hospital. I called her eldest son who lives out of State and told him that he needed to come up now because if you don't she will die. And I was serious about that. She would have died if something had not been done.
Her son did come all the way here from out of State and he did save her life. He fought tooth and nail and got her into a nursing home, got her bills and paperwork organized, and he even acted as a caregiver until he could get her into that nursing home. If he had not come, she would have died on her bedroom floor laying in her own filth. I wish I was overstating that, but unfortunately, I am not. It is the cold hard truth.
***
So we fast forward 2 years later, leaving out a lot of drama and problems and issues that came before and during. We get past the nursing home stay, we get past the pandemic (which was very difficult for people in nursing homes), and my sister is finally released to a newly acquired apartment at a complex that is specifically for older and disabled people. Low rent, small apartment footprint, downsized kitchen, and so on. It sounds perfect! Right?
That apartment is located 20 miles away from me, 20 miles away from her son who lives in town, and she is living on her own, alone, in a wheelchair. What could go wrong?
Everything.
She had in-home health care, doctors and nurse practitioners who visited several times a week, but no one living with her, and no one monitoring her day to day health, or cleaning, or making sure she didn't spend all of her money on food delivery or items off the Internet. Her bills were not being paid, her mail wasn't being opened, and once again she deteriorated.
Both me and her son who lives in town, we both had many issues with her calling at all hours with emergencies, prescription requests, her being out of cigarettes, and a host of other things. It was very difficult for both of us. Her eldest son bought her a Facebook Portal a few years ago so that we can cam with her, but often she would not answer that cam call or her phone. We'd call for hours, sometimes all day, and finally have to drive all the way over there to discover her just sitting there. She said she wasn't in the mood to talk to anyone.
Since she was released from the long time stay at a nursing home she has been back to the hospital several times for a week or more stay, and also back to nursing homes for a few weeks at a time. The last time she went in one it was over a month in the nursing home for rehabilitation after she could not get out of her wheelchair unassisted for days at a time. She also had wounds and infections on the bottom of her feet, and her legs were swollen double size.
She was released on July 15th. I took her back home, cleaned her house, did her shopping, etc.. She seemed to be ok, within reason. I talked to her every day and went back again on the 22nd to get some things she needed. She seemed fine, but a little drowsy. That should have warned me that she was doing something she should not have been doing.
When I was there I noticed several boxes up against the wall and saw that she had ordered a large smoker BBQ from Amazon, and later discovered there were purchases she made that week too. I assume she had the idea that she'd have her neighbors and son come cook out at her place, since it was her son's birthday that week. She told me she had planned a cook out but her neighbors who had agreed to do it decided not to at the last minute. She seemed upset and a little depressed about that. She also looked a bit crestfallen when I told her I had to leave to go home to attend to my father. I had been there for several hours and two different nurses had come at different times while I was there that day. Despite that, she seemed to me to be depressed when I said I had to leave.
I talked to her on Friday on cam. She said her back was bothering her and she looked exhausted and listless. She was preparing to lay down in her bed for a while. We ended the cam chat and that was it. The next day she didn't answer my calls or messages. I tried many times, and also called the next day, Sunday. I even IMed my sister who lives out of State and the son who lives here to ask them if they had talked to her. Neither had.
When I spoke to my nephew on the phone he said he had a bad feeling, so he and his girlfriend drove over to her place to check on her. It is a very good thing that they did, because she was in very bad condition! 103 degree fever, her urine bag had dark colored urine, the hose for it was hot where it goes into her body, and she was sitting on the edge of her bed with her adult diapers down to her knees with feces on the bed and floor - and sitting in a room with the air conditioning turned off in 90 degree weather.
My nephew discovered both full, and empty or partially empty liquor bottles in her room. Her prescription painkillers that were ordered and delivered that week, a months supply, was almost all gone. 3/4 of a months supply used up in less than a week.
Where did she get the alcohol?
She ordered it online and had it delivered.
My nephew called 911 and had EMS come out against my sister's wishes. They showed up, checked her out, and wanted to take her to the hospital. Another team came in and told her, "You are going. That's it. You ARE going to the hospital." - and she finally stopped fighting them on it. But even when she was at the hospital she argued and tried to refuse admittance and care. My nephew stayed there with her until 2 AM and finally got her to agree to accept treatment and admission.
I am leaving a lot of things out about what went on that day and much of what happened over the last 3 years. I will say that my sister could not recall her current apartment or the fact that she required a wheelchair that night while they were trying to get her situated. She thought she was still living in her apartment from 3 years ago and could walk on her own.
Despite that, today I received a call from the hospital administration asking me if I would be agreeable to them sending my sister to a nursing home for rehab again. The person on the phone said that my sister was being argumentative, refusing to accept treatment, was refusing to do rehab, and wanted to be released back to her apartment. I told them in no uncertain terms that she could not go back to her apartment, that she lived alone, and had done this all to herself in a 2 day period. I stressed for the 100th time over these last long 3-4 years, that my sister desperately needs psychological treatment and behavioral rehabilitation. She cannot be left on her own, alone. She simply cannot be. Not without serious mental health help.
My sister, for the last 7 or so years, except for those periods when she was in a nursing home, when one of her sons had a birthday, or one of them was celebrating a anniversary, or going on vacation, or something special that she was not involved in, she ended up having some emergency or was hospitalized. My other family members don't remember that, obvious, but I do because I am a diarist and write everything down.
My sister does not like being in a nursing home, which I completely understand, but she thrives when she is in one. She gets better, mentally and physically. She is taken care of, her medications are monitored, she is fed, AND she has constant social interaction with people all day, every day. My sister is and always was a very social person. She is not a loner who can be fine and dandy all alone, like I can. She learns everything about everyone in a short period of time. She is, as I said, a very social person.
The problem is when she is on her own, alone with her own thoughts, and no one taking care of her, no one living with her, and no one to talk to. That's when things go downhill. They discharge her from that social environment with no psychological or behavioral rehabilitation and expect her to be ok. She won't be, and wasn't, and never will be. She is not just being lazy, she is not just "her being her", she has serious mental issues that have never been addressed or treated. Yet, they keep on releasing her from hospitals and nursing homes. They probably just want her gone, because she can be a real pain the rear to deal with.
So! What can we do? No one in my family has the extra money to pay for her to be in an assisted living facility, and there are reasons I will not go into why she cannot move in with her son who lives out of State. She cannot live with her son and his girlfriend who live in town because they lived through that before and won't do it again, which I totally understand. She cannot live me and my 88 year old father either. That ship sailed 8 years ago when she had the opportunity to move in with us and decided at the last minute not to move in. It is no longer possible because we downsized to a smaller place and my father needs his own care now.
And to be completely honest, I do not want to be a caregiver again in my life - except for the modest caregiving for my father. My health is not great, my body is not up to it anymore, and I have my own issues to deal with, both health and other. So, that leaves my sister with what options? None.
What do we do with someone who is, when on their own, totally self-destructive? We all thought that maybe her living alone in her small apartment would work out because she has in-home health care coming by several times a week, doctors too, and her medications were being delivered, and she has neighbors too. Despite all of that, she probably spends most of her time alone, in her own head, smoking non-stop, watching television, and not taking care of herself properly.
I have no idea what to do. I am sure her sons don't know can be done either. Sure, we could hire someone to stop by every day, but I don't believe that will be enough. I did say that I was there on Thursday, 2 nurses were there too at different times, and she had other visits that week, and she still self-destructed. I for sure cannot drive over there every day and spend hours with her. That's not possible. Her son can't either. All we can do is call her, and cam her, but that appears not the be enough for her. She needs mental health help, supervision, and social interaction.
I am sure many other people have gone through this exact same scenario, or close to it, and others will experience it later in life, very unexpectedly. What did those people do, how they managed it, and what can be done for our at-risk and very vulnerable family members and friends? Does anyone have advice? Does anyone have a solution? Is there no solutions at all? Time will tell.
When I write my longer blog entries I almost always write them in one single sitting, in one flow of consciousness, and it wears me out completely. This one took its toll on me because of the deep personal nature of it. I am not worried that some family members will be upset that I disclosed so much "personal and embarrassing" information about family here. I am a lifelong diarist and write everything down, but I rarely put it out in the public. In this case, I am disclosing a lot, but not everything. As lengthy as this blog entry is, it is far less than I could have written. I didn't name names, and only a few people will know who my family members are in real life, so I am not concerned about upsetting one or two people.
Perhaps airing this will help someone one day. They will read it and see that they are not alone, their situation is not unique, and it can be talked about in the full light of day with others, because we all are searching for solutions to what we see is an impossible situation. Who knows, someone might have an answer to one thing, and someone will have another piece, that will all fit together in this jigsaw puzzle.
That is what this impossible situation is: A jigsaw puzzle that is one solid color.
I believe that our situation with my sister is not unique, it is not an aberration, but is actually much more common than anyone believes because people are too embarrassed to talk about it in public, thinking that it has to be a dirty little family secret. It is not a family secret, and there is no embarrassment in saying:
"We are lost! Someone find us!"