PGen98
Administrator
So I've been somewhat keeping closed off in my few posts so far, not really opening up about myself or why I might have an interest in posting on these forums, so let me start to break that seal just a little bit and ask you all your opinion on something. Let me preface this by saying that I deal with bouts of depression, anxiety and general despair from time to time. I've learned to cope with it and I've constantly got in the back of my mind reasons why I need to stay in the here and now rather than focusing on the bad, the downward slope (this does not work a lot of the times, but at least it's something to focus on). So I've got my 'me' issues (and no, that's nowhere near all of it, I'll try and open up more about the me part of things at another point), but then I've also got my mother.
About five years ago my mother's mental health took went on the decline. It started simple enough, forgetting words, forgetting conversations from a week ago, not remembering the date, things like that. Common things. Then it slowly started to progress to where she'd forgotten where we were and what we were doing while we were out, and then it became a case of forgetting where she lived...and during this same time I was just starting out in a career in programming, got situated with a decent company and was making very good money while just generally building a life, as one does. As that progressed, her memory kept getting worse and soon she was starting to talk about people she hadn't seen in 50+ years like she'd just spoken to them yesterday. Then one night she was out with my sister and I got a call that I needed to come immediately. My mother kept saying she felt like she was going to die and she looked extremely pale. My sister was terrified and had no idea what to do, so she had pulled off into the parking lot of a grocery store that had a strip mall with an urgent care in it, sadly that urgent care was closed. It took me about 20 minutes to get there, and when I did my mother was ashen white, crying and shivering. Fortunately there was a fire truck there with a crew just finishing their break, so we flagged them down immediately and they came right over and checked her out. They called for an ambulance and we followed them round to the hospital. She couldn't answer the doctors' questions, she couldn't remember much of anything, and when pressed for what was ailing her, she just told them she felt like she was going to die and no more than that. They checked her out, determined she was actually suffering from pneumonia and admitted her into the hospital. This was when she went from bad to worse. I decided I wasn't going to let her stay in the hospital alone, because her mind was not in a good place, so I stayed with her, all 4 days she was in there, sleeping on a little seat that was essentially a window ledge and doing my best to keep her calm during the days. Her memory went from bad to practically non-existent, she would wake up at extreme hours in the night to scream at me because she thought the hospital room was her house and I had stolen it from her, she went into the accompanying bathroom because she claimed that was how you went upstairs, didn't turn the light on, and shut herself in it repeatedly. Any time a nurse or doctor would come by she would make outlandish claims about anything and everything, including that I'd assaulted her or that she needed to get home because her kids were being attacked (I'm her youngest). The hospital staff had her meet with a neurologist who confirmed that she had all of the symptoms of dementia, and that it was likely only going to get worse from here. One night in the hospital she got up, sat on the little mattress I slept on and yanked out the IV that was in her hand, bleeding all over the mattress, the sheets the staff had given me, my clean clothes that I'd had my sister bring for me and I ran out into the hallway to fetch the nearest nurse, who immediately brought in about 4 other nurses and within a couple of minutes she had her wound treated and bandaged and a new IV in place. It was great the staff were so attentive, they made it easier to deal with the stress that is dealing with her.
After her hospitalization she started getting up at all hours of the night and going for the front door like she needed to get out. On two separate occasions she did indeed get out and I had to go hunting for her in my car, that was a terrifying experience! After that we switched to locks on the front door that require a key to open whether entering or exiting, and she began to get upset with that, pounding away on the door demanding to get out at all hours of the day and night. It became obvious that she needed someone with her full time. So, I decided to quit my job, live with her full time, and tend to her needs as her caregiver, and that's what I've been doing for more or less 5 years now. I got certified and signed with an agency back in October of 2020, not knowing that was a thing before then, so I earn a small paycheck (and it is indeed a small paycheck, of which most of it is spent on her needs) and we're supposed to be getting access to additional resources to help with her care, but that seems to be a slower priority with all that's going on in the world at the moment, so it's basically just me. My dad works full time, my sister works full time and then some, so I push on. It's stressful, I have many down periods where I don't want to be here doing this, and I'll openly admit that in five years I've had no relationships because I simply don't have the ability to be a part of one at this point in time, and I can tell you that this is also affecting me mentally, as I feel that is something I need in my life. I'm not talking about sex, though I'd be lying if I said a physical relationship wouldn't be a benefit in times like these, but I mean a partner, a real partner. Someone to talk to, put my stress on, and take her stresses away from her, a proper mutual partnership where we work together for the benefit of each other, or just sit together on the couch, holding one another and knowing it would all be ok with a bit of time...I really would love that in my life, but it's impractical. At any rate, this isn't meant to be about me, this is meant to be about my mother.
That brings me to now. Recently she's begun to...I don't even know if it's forgetting to go, deliberately not going, feeling too scared to ask to go or what it is that's causing this, but she's going to the toilet in her underwear, both urinating and defecating, after which she needs to be bathed and cleaned. She will not let me assist her in this process, so I have to wait until my sister is around, or until my sister's friend, who knows a good deal about dementia and dementia patients, and one of them will give her a bath, clean her up and get her dressed in clean clothes. I understand her apprehension towards myself or another male helping her in that department, so I won't force the issue in any way, but it's also not right that my sister or her friend should have to deal with that, either. Her dementia has progressed over time, so much so her behaviour is erratic. We'll often find random pieces of paper or rubbish tucked down the sides of couches or food shoved under cushions or in her pockets, she'll start talking about one subject and finish by jumbling some words together, and she's so very quick to anger. The slightest thing will set her off, and when that happens she's off pacing around the house, pulling on doors, walking out in the back garden trying to get out, cursing the very sight of whomever she sees, whether they were involved in whatever set her off or not. I know it's because she's scared and frightened and doesn't understand what is happening or what she is actually doing, but it is becoming very hard to deal with. Five years of this is becoming truly overwhelming, but I don't regret my decision to quit and look after her, I don't feel one ounce of guilt for giving up on a career that could have seen me blissfully ignorant of what was going on with her while I was sitting pretty making good money and living life. I made the natural choice, she's my mother, she raised me, I need to be doing this now that she needs me. However...in the time I've been dealing with her, looking after her and making sure she's ok, I've been doing less and less well myself. Not just mentally, though this is very very much a factor, but also physically. I'll get into that at another time, but I have a plethora of ailments that keeps me busy. It's all adding up to become extremely taxing, I feel my self restraint getting thinner and thinner, my anger getting quicker and quicker to rise, and my level of despair and hopelessness peaking more and more. I want to be here, I want to keep doing this, it's my mother and I need to know she's getting the best treatment, but I need help and I recognize that.
So here is the point of this thread and the reason for me making it. What is the solution here, ideally? I know most would say "put her in a care facility, they're trained to handle patients just like her." That does indeed sound like the sensible solution; however, here's why that is my greatest fear -- My mother was born and then immediately placed into a children's home (a Barnardo's home for those that are familiar with them), so she grew up feeling unwanted, feeling abandoned and having to make her own life. She did, and she's had a very good life since those days, but now that she's starting to mentally regress back to those days (she often says she has to get "home" referring to the home she grew up in, and talking about the people who used to take care of her or that she used to be friends with back then, as if they were with her just moments ago), all of the stories have come flooding back. Her heartbreak when her mother would call and say she was coming to pick her up, only to have her sit there with her suitcase all day and never bother to turn up. Her love for the woman that raised her, but her resentment for another staff member who used to be very strict and very mean with the children. It has now all come back to the forefront of her mind, and so for me, the thought of place her into a care facility now that she's reaching her twilight years seems incredibly cruel to me. I don't want her to finish her days in a home, as she started them. What if she ends up sitting by the door waiting for her mother to come and get her again? That thought alone absolutely guts me, I want her to be happy, but I know as well that all of this is becoming overwhelming. I'm doing the best I can with what I've got, but I've long since past my level of applicable knowledge.
So I feel I have to ask, if you were in my situation, how would you handle this? Put her in a day care facility? Put her in a full time care facility, irrespective of how it makes me feel or may make her feel? Keep doing what I'm doing now? I only want what's best for her, and I'm beyond willing to spend my days looking after her, but I don't know if I'm the right option for her at this stage...so let's see what your thoughts are on how to handle this sort of a situation.
About five years ago my mother's mental health took went on the decline. It started simple enough, forgetting words, forgetting conversations from a week ago, not remembering the date, things like that. Common things. Then it slowly started to progress to where she'd forgotten where we were and what we were doing while we were out, and then it became a case of forgetting where she lived...and during this same time I was just starting out in a career in programming, got situated with a decent company and was making very good money while just generally building a life, as one does. As that progressed, her memory kept getting worse and soon she was starting to talk about people she hadn't seen in 50+ years like she'd just spoken to them yesterday. Then one night she was out with my sister and I got a call that I needed to come immediately. My mother kept saying she felt like she was going to die and she looked extremely pale. My sister was terrified and had no idea what to do, so she had pulled off into the parking lot of a grocery store that had a strip mall with an urgent care in it, sadly that urgent care was closed. It took me about 20 minutes to get there, and when I did my mother was ashen white, crying and shivering. Fortunately there was a fire truck there with a crew just finishing their break, so we flagged them down immediately and they came right over and checked her out. They called for an ambulance and we followed them round to the hospital. She couldn't answer the doctors' questions, she couldn't remember much of anything, and when pressed for what was ailing her, she just told them she felt like she was going to die and no more than that. They checked her out, determined she was actually suffering from pneumonia and admitted her into the hospital. This was when she went from bad to worse. I decided I wasn't going to let her stay in the hospital alone, because her mind was not in a good place, so I stayed with her, all 4 days she was in there, sleeping on a little seat that was essentially a window ledge and doing my best to keep her calm during the days. Her memory went from bad to practically non-existent, she would wake up at extreme hours in the night to scream at me because she thought the hospital room was her house and I had stolen it from her, she went into the accompanying bathroom because she claimed that was how you went upstairs, didn't turn the light on, and shut herself in it repeatedly. Any time a nurse or doctor would come by she would make outlandish claims about anything and everything, including that I'd assaulted her or that she needed to get home because her kids were being attacked (I'm her youngest). The hospital staff had her meet with a neurologist who confirmed that she had all of the symptoms of dementia, and that it was likely only going to get worse from here. One night in the hospital she got up, sat on the little mattress I slept on and yanked out the IV that was in her hand, bleeding all over the mattress, the sheets the staff had given me, my clean clothes that I'd had my sister bring for me and I ran out into the hallway to fetch the nearest nurse, who immediately brought in about 4 other nurses and within a couple of minutes she had her wound treated and bandaged and a new IV in place. It was great the staff were so attentive, they made it easier to deal with the stress that is dealing with her.
After her hospitalization she started getting up at all hours of the night and going for the front door like she needed to get out. On two separate occasions she did indeed get out and I had to go hunting for her in my car, that was a terrifying experience! After that we switched to locks on the front door that require a key to open whether entering or exiting, and she began to get upset with that, pounding away on the door demanding to get out at all hours of the day and night. It became obvious that she needed someone with her full time. So, I decided to quit my job, live with her full time, and tend to her needs as her caregiver, and that's what I've been doing for more or less 5 years now. I got certified and signed with an agency back in October of 2020, not knowing that was a thing before then, so I earn a small paycheck (and it is indeed a small paycheck, of which most of it is spent on her needs) and we're supposed to be getting access to additional resources to help with her care, but that seems to be a slower priority with all that's going on in the world at the moment, so it's basically just me. My dad works full time, my sister works full time and then some, so I push on. It's stressful, I have many down periods where I don't want to be here doing this, and I'll openly admit that in five years I've had no relationships because I simply don't have the ability to be a part of one at this point in time, and I can tell you that this is also affecting me mentally, as I feel that is something I need in my life. I'm not talking about sex, though I'd be lying if I said a physical relationship wouldn't be a benefit in times like these, but I mean a partner, a real partner. Someone to talk to, put my stress on, and take her stresses away from her, a proper mutual partnership where we work together for the benefit of each other, or just sit together on the couch, holding one another and knowing it would all be ok with a bit of time...I really would love that in my life, but it's impractical. At any rate, this isn't meant to be about me, this is meant to be about my mother.
That brings me to now. Recently she's begun to...I don't even know if it's forgetting to go, deliberately not going, feeling too scared to ask to go or what it is that's causing this, but she's going to the toilet in her underwear, both urinating and defecating, after which she needs to be bathed and cleaned. She will not let me assist her in this process, so I have to wait until my sister is around, or until my sister's friend, who knows a good deal about dementia and dementia patients, and one of them will give her a bath, clean her up and get her dressed in clean clothes. I understand her apprehension towards myself or another male helping her in that department, so I won't force the issue in any way, but it's also not right that my sister or her friend should have to deal with that, either. Her dementia has progressed over time, so much so her behaviour is erratic. We'll often find random pieces of paper or rubbish tucked down the sides of couches or food shoved under cushions or in her pockets, she'll start talking about one subject and finish by jumbling some words together, and she's so very quick to anger. The slightest thing will set her off, and when that happens she's off pacing around the house, pulling on doors, walking out in the back garden trying to get out, cursing the very sight of whomever she sees, whether they were involved in whatever set her off or not. I know it's because she's scared and frightened and doesn't understand what is happening or what she is actually doing, but it is becoming very hard to deal with. Five years of this is becoming truly overwhelming, but I don't regret my decision to quit and look after her, I don't feel one ounce of guilt for giving up on a career that could have seen me blissfully ignorant of what was going on with her while I was sitting pretty making good money and living life. I made the natural choice, she's my mother, she raised me, I need to be doing this now that she needs me. However...in the time I've been dealing with her, looking after her and making sure she's ok, I've been doing less and less well myself. Not just mentally, though this is very very much a factor, but also physically. I'll get into that at another time, but I have a plethora of ailments that keeps me busy. It's all adding up to become extremely taxing, I feel my self restraint getting thinner and thinner, my anger getting quicker and quicker to rise, and my level of despair and hopelessness peaking more and more. I want to be here, I want to keep doing this, it's my mother and I need to know she's getting the best treatment, but I need help and I recognize that.
So here is the point of this thread and the reason for me making it. What is the solution here, ideally? I know most would say "put her in a care facility, they're trained to handle patients just like her." That does indeed sound like the sensible solution; however, here's why that is my greatest fear -- My mother was born and then immediately placed into a children's home (a Barnardo's home for those that are familiar with them), so she grew up feeling unwanted, feeling abandoned and having to make her own life. She did, and she's had a very good life since those days, but now that she's starting to mentally regress back to those days (she often says she has to get "home" referring to the home she grew up in, and talking about the people who used to take care of her or that she used to be friends with back then, as if they were with her just moments ago), all of the stories have come flooding back. Her heartbreak when her mother would call and say she was coming to pick her up, only to have her sit there with her suitcase all day and never bother to turn up. Her love for the woman that raised her, but her resentment for another staff member who used to be very strict and very mean with the children. It has now all come back to the forefront of her mind, and so for me, the thought of place her into a care facility now that she's reaching her twilight years seems incredibly cruel to me. I don't want her to finish her days in a home, as she started them. What if she ends up sitting by the door waiting for her mother to come and get her again? That thought alone absolutely guts me, I want her to be happy, but I know as well that all of this is becoming overwhelming. I'm doing the best I can with what I've got, but I've long since past my level of applicable knowledge.
So I feel I have to ask, if you were in my situation, how would you handle this? Put her in a day care facility? Put her in a full time care facility, irrespective of how it makes me feel or may make her feel? Keep doing what I'm doing now? I only want what's best for her, and I'm beyond willing to spend my days looking after her, but I don't know if I'm the right option for her at this stage...so let's see what your thoughts are on how to handle this sort of a situation.