texas109
08-21-2002, 01:04 AM
Hello, I am a recent caregiver by profession and by home circumstances. I live with my boyfriend and his mother. His mother is in the mid to last stages of terminal cancer.
She recently moved in and requires 24/7 care. I quit my caregiving job and began taking care of her. This home situation is fairly new. We are all still adjusting to her moving in and requiring all that care.
I am very much out of sorts. I feel like I am at work 24/7. My boyfriend works the better part of the week so he is not around much. He does what he can but at times that barely makes a dent.
For the first month of her being here she had no medical insurance coverage and her pain medication was rapidly being used. The cost of replacing the supply was out of our means. I moved heaven and earth to get her on SSI and Medicaide. I found charities to help pick up the cost of medication. While I was doing this my boyfriend and his mother felt that I was doing too much. Yet while they were feeling this, there hands were tied becuase it had to get done and they could not do it. My manner of handling things can be abrasive and it abraded our relationships. Once she got covered I backed off and did not do anymore then what I was asked to do.
That frustrated me very much. I am supposed to help her with all her basic needs and my input on how to work the medical costs or doctors visits is unwelcome. They do not adress any of the issues that seem to need to get adressed. A recent visit to the doctors office resulted in an arguement because I asked the doctor questions to issue that, in my view, desperately needed taking care of.
I feel like I am in limbo. I am to do everything and nothing at the same time. I am stuck in the "You are just the girlfriend/caregiver role."
I am told that by taking care of my boyfriends mother I am being very noble and caring. Noble and caring do not pay my bills. Noble and caring leaves me drained and in bad light with my loved ones. Noble and caring has me seeing a therapist. Sigh, noble and caring are things I must be 24/7 and I do not know if I can handle it.
There are the issues of home health care, hospice, and eldercare agencies that may help. I have mentioned the issue. If I mention it again, I am pushing the issue and who am I but a girlfriend?, to push the issue.
This is a long list of my daily frustrations. Like most of us. I am the only caregiver and no other family to help.
She recently moved in and requires 24/7 care. I quit my caregiving job and began taking care of her. This home situation is fairly new. We are all still adjusting to her moving in and requiring all that care.
I am very much out of sorts. I feel like I am at work 24/7. My boyfriend works the better part of the week so he is not around much. He does what he can but at times that barely makes a dent.
For the first month of her being here she had no medical insurance coverage and her pain medication was rapidly being used. The cost of replacing the supply was out of our means. I moved heaven and earth to get her on SSI and Medicaide. I found charities to help pick up the cost of medication. While I was doing this my boyfriend and his mother felt that I was doing too much. Yet while they were feeling this, there hands were tied becuase it had to get done and they could not do it. My manner of handling things can be abrasive and it abraded our relationships. Once she got covered I backed off and did not do anymore then what I was asked to do.
That frustrated me very much. I am supposed to help her with all her basic needs and my input on how to work the medical costs or doctors visits is unwelcome. They do not adress any of the issues that seem to need to get adressed. A recent visit to the doctors office resulted in an arguement because I asked the doctor questions to issue that, in my view, desperately needed taking care of.
I feel like I am in limbo. I am to do everything and nothing at the same time. I am stuck in the "You are just the girlfriend/caregiver role."
I am told that by taking care of my boyfriends mother I am being very noble and caring. Noble and caring do not pay my bills. Noble and caring leaves me drained and in bad light with my loved ones. Noble and caring has me seeing a therapist. Sigh, noble and caring are things I must be 24/7 and I do not know if I can handle it.
There are the issues of home health care, hospice, and eldercare agencies that may help. I have mentioned the issue. If I mention it again, I am pushing the issue and who am I but a girlfriend?, to push the issue.
This is a long list of my daily frustrations. Like most of us. I am the only caregiver and no other family to help.
Sponsor
drs
08-21-2002, 01:50 PM
Texas, I hear you on the part of feeling that your hands are tied in this issue. You want to help I know but obviously some of it is unwelcome. Your going to need to take a stance in saying... if you went back to work they will need someone to come in and help. Tell them you need to get back to work, then they will be interested in looking for someone to come in...see what I mean?
I took care of my sick mother for 3 years with no help from family, I know how you feel, and this was my own mother. Diana
I took care of my sick mother for 3 years with no help from family, I know how you feel, and this was my own mother. Diana
drs
08-29-2002, 11:01 PM
Texas how are things going. Diana
texas109
08-31-2002, 03:54 PM
Hi, My handling things kept making the homelife worse, so I just quit. I am still the primary caregiver for my boyfriends mother. I still take care of her basic needs, pick up her medications, and take her to the doctor, but that is all I do. Unless asked I do not call the doctors. I will not talk to the doctors. I will not hunt down several months supply of medications. I will not make sure she has all the necessary paperwork when taking her to the doctors.
I really did quit. I do not treat her any different and still see to the needs mentioned above. There are issues like pain management and digestive system issue, that need to be adressed, but they won't be brought up by me. I was talking to a counselor about my situation and she said it souned like the family was in severe denial. Until they came out of it there was not much I could do to improve the homelife.
I feel really guilty because I know that by my quitting I made my boyfriend, and his mom's life difficult. I refuse to be put in the position where I am the object of everyones anger because I am taking care of issues that desperately need to be adressed.
My quitting has made my stress levels come down immensely. It has made homelife a lot more tolerable for everyone else too. We are functioning quite well in a very dysfunctional way.
Texas
I really did quit. I do not treat her any different and still see to the needs mentioned above. There are issues like pain management and digestive system issue, that need to be adressed, but they won't be brought up by me. I was talking to a counselor about my situation and she said it souned like the family was in severe denial. Until they came out of it there was not much I could do to improve the homelife.
I feel really guilty because I know that by my quitting I made my boyfriend, and his mom's life difficult. I refuse to be put in the position where I am the object of everyones anger because I am taking care of issues that desperately need to be adressed.
My quitting has made my stress levels come down immensely. It has made homelife a lot more tolerable for everyone else too. We are functioning quite well in a very dysfunctional way.
Texas
drs
09-02-2002, 07:47 PM
Texas, good for you!!!! Your health was going to be compromised next!!! Stess is very unhealthy as you well know. I've read some studies recently that point out that stress can actually dehydrate us and that drinking more water helps this? Kinda interesting I thought.
I'm not too sure I would want to even be living in the situation you are in. Are there no alternatives? Like getting your own place, and still dating or seeing this guy. I'm sure you love him, why else would you be putting up with all this. Right?
Man, I feel for ya. What a situation. When you say you have quit, does that mean that you are going back to work or are you still taking care of her all day every day. This can be a real stressful thing to do, I know too well. Diana
I'm not too sure I would want to even be living in the situation you are in. Are there no alternatives? Like getting your own place, and still dating or seeing this guy. I'm sure you love him, why else would you be putting up with all this. Right?
Man, I feel for ya. What a situation. When you say you have quit, does that mean that you are going back to work or are you still taking care of her all day every day. This can be a real stressful thing to do, I know too well. Diana
texas109
09-11-2002, 05:51 PM
Hi, Things are going ok. I still live with my boyfriend and his mother. She is taking care of things as she can. I am still caught in the line of fire for most of what I do and do not do.
I am hoping that they will get someone to come and do homehealth care. I need to get a job. I keep my hands off of dealing with getting someone in here because that will put me in the line of fire.
I am just here. We are working in a very dysfunctional way.
Texas
I am hoping that they will get someone to come and do homehealth care. I need to get a job. I keep my hands off of dealing with getting someone in here because that will put me in the line of fire.
I am just here. We are working in a very dysfunctional way.
Texas
drs
09-30-2002, 12:58 PM
Maybe a new job is just what you need. I hope you find something better than just excisting, doesn't sound very healthy mentally. Got to keep your spirits up or you'll be getting sick too.
I know this may sound awful but when my mother moved out of here after 3 years, I couldn't believe how diff. things were. She'd gotten so used to depending on me for everything, and I was also in the middle all the time. So I know how you feel. Take care, Diana.
I know this may sound awful but when my mother moved out of here after 3 years, I couldn't believe how diff. things were. She'd gotten so used to depending on me for everything, and I was also in the middle all the time. So I know how you feel. Take care, Diana.
texas109
10-22-2002, 06:15 PM
I have been trying to reply to the posts and have been unable. My IP address keeps getting denied.
Things are still icky at home. I seem unable to cope with things and the people surrounding me. I am still searching for a job. When I will have the time for it is beyond me. We have daily doctor's appointments and more things for me to do. I have taken on the "nurse" role to the max. I even take care of the "nether" parts on her body. I am so very frustrated with things at home because my boyfriend does not seem to grasp the scope fo care she needs and the length of time she will need it for. He seems to think that if he takes his vacation time and runs her here and there, all will be well. She is beginning her fight with cancer. Curing or dying will take time. The hospice handbook advises to pick your battles when it comes to resources used for the ill person. These battles are not major and my one day of work is equal to 3+ days of work for him, financially speaking. He seems to think that taking those days will not hurt his standing at work. He is in the running for a new job, and has ton's of work piling on. If he misses a day that pile gets worse, he gets cranky, and homelife takes a turn for the worst. She will not allow him to help her with her most intimate needs, yet. So what he could do is limitted.
I am so very angry and frustrated because I had to drop a college class today. In all honesty it was probably for the best. My college classes are sufferring for the things going on at home. I at times wonder if I am just not equipped to deal with this situation. My stress levels are through the roof and I am becoming an anxious angry person. I am so very not happy. He, my boyfriend tries to do what he can but I still feel very alone.
Thankfully I have a counselors visit tomorrow.
Frustrated and angry,
Texas
Things are still icky at home. I seem unable to cope with things and the people surrounding me. I am still searching for a job. When I will have the time for it is beyond me. We have daily doctor's appointments and more things for me to do. I have taken on the "nurse" role to the max. I even take care of the "nether" parts on her body. I am so very frustrated with things at home because my boyfriend does not seem to grasp the scope fo care she needs and the length of time she will need it for. He seems to think that if he takes his vacation time and runs her here and there, all will be well. She is beginning her fight with cancer. Curing or dying will take time. The hospice handbook advises to pick your battles when it comes to resources used for the ill person. These battles are not major and my one day of work is equal to 3+ days of work for him, financially speaking. He seems to think that taking those days will not hurt his standing at work. He is in the running for a new job, and has ton's of work piling on. If he misses a day that pile gets worse, he gets cranky, and homelife takes a turn for the worst. She will not allow him to help her with her most intimate needs, yet. So what he could do is limitted.
I am so very angry and frustrated because I had to drop a college class today. In all honesty it was probably for the best. My college classes are sufferring for the things going on at home. I at times wonder if I am just not equipped to deal with this situation. My stress levels are through the roof and I am becoming an anxious angry person. I am so very not happy. He, my boyfriend tries to do what he can but I still feel very alone.
Thankfully I have a counselors visit tomorrow.
Frustrated and angry,
Texas
zionspegasus
10-22-2002, 08:31 PM
Im sorry to hear that the stress is ruining your life and seems to have worsened late. My mom has cancer and Im the caregiver. Unfortunately the circumstance of one person doing the lion's share of work is very common in caregiving. You sound like a very capable person, who is frustrated not only by the usual daily tasks of caregiving, but also by not being able to do as much as you would like to be able to make the situation better for everyone involved.
I would also like to do more to help my mom out financially, however along with many other issues, both the family and her are not ready to deal with the work that needs to be done. I also do not know a lot about resources that are available, but what good does it do to know, when no one wishes to make a move. I too am becoming frustrated, especially when my brother and my mom have both said, "I dont know why you want ___ (fill in the blank). I do not see why we need that or what help it would be anyway." AAARRRGGGH Then why am I beating my brains out to go through all the red tape to get it?!
Maybe if you took part time work, the bf would have to contribute more, but you would not feel so guilty about contributing less. It is forever difficult when the ones we love prefer not to put in equal time, fail to recognize just what is required, or are prevailed upon by economic considerations to continue to remain ungiving of their time. Seems like the only way that either your bf or his mother would appreciate what you have done is if your help was no longer available. But such an action would carry consequences for you as well.
Hope the visit with your counselor is productive.
I can only say that I understand, maybe you should take up boxing (one of those plastic bags) or some other physical action when the stress overwhelms you.
I would also like to do more to help my mom out financially, however along with many other issues, both the family and her are not ready to deal with the work that needs to be done. I also do not know a lot about resources that are available, but what good does it do to know, when no one wishes to make a move. I too am becoming frustrated, especially when my brother and my mom have both said, "I dont know why you want ___ (fill in the blank). I do not see why we need that or what help it would be anyway." AAARRRGGGH Then why am I beating my brains out to go through all the red tape to get it?!
Maybe if you took part time work, the bf would have to contribute more, but you would not feel so guilty about contributing less. It is forever difficult when the ones we love prefer not to put in equal time, fail to recognize just what is required, or are prevailed upon by economic considerations to continue to remain ungiving of their time. Seems like the only way that either your bf or his mother would appreciate what you have done is if your help was no longer available. But such an action would carry consequences for you as well.
Hope the visit with your counselor is productive.
I can only say that I understand, maybe you should take up boxing (one of those plastic bags) or some other physical action when the stress overwhelms you.
texas109
10-27-2002, 03:17 PM
AGGGHHHH!!!! I so very much hope I can post to day.
I still do not have a job. I am literally swamped with having to take care of her. Last week we had 7 doctors appointments. This next week we only have 2 scheduled but I would be surprised if something new does not come up.
Today just about caused me to pack my bags and leave. Every Sunday my boyfriend and I go out for breakfast and then grocery shop. We are normally home around 10ish. We add a department store on our shopping, because we could not find it at the grocery store. It did not make us majorily late. We got home at 10:46 am. We found her fallen on the ground, in front of the house. She had fallen around 9am. She went out to smoke, she had the dog on the leash, and while chasing the nieghbors cat, the dog pulled her with enough force that she fell. She could not get back up, she just sat, and smoked. She was crying loudly and calling for her son, when we arrived.
Ok, here is where I get very angry. My boyfriend asked her why she had not called 911. She carries the phone with her......incase she falls. She said she was waiting for him. I am with her on a daily basis and know for a fact that her mental state is such, that she could not call 911. SHE WAS HOLDING THE FREAKING PHONE IN HER HAND! I was tempted to call 911 just in case she did break something, but she said no she was just in major pain. My boyfriend lifted her up and put her in her wheelchair. I gave her, her pain injection and left her alone. I was too angry to be around her. Nothing more has been said. She knew/knows better. Lately her lates trend is hypochondriactic. If this is a plee for attention, I do not know how to respond to it. She is asleep 75-80% out of the day and when awake she is having dinner with us.
Most who reply to my posts have had caregiving experiences with loved ones in the past. Did any of you have any expereinces like these? If so, any suggestions on how to deal with it?
Guys/gals, thank you so much for letting me vent and responding. This really helps.
Texas
I still do not have a job. I am literally swamped with having to take care of her. Last week we had 7 doctors appointments. This next week we only have 2 scheduled but I would be surprised if something new does not come up.
Today just about caused me to pack my bags and leave. Every Sunday my boyfriend and I go out for breakfast and then grocery shop. We are normally home around 10ish. We add a department store on our shopping, because we could not find it at the grocery store. It did not make us majorily late. We got home at 10:46 am. We found her fallen on the ground, in front of the house. She had fallen around 9am. She went out to smoke, she had the dog on the leash, and while chasing the nieghbors cat, the dog pulled her with enough force that she fell. She could not get back up, she just sat, and smoked. She was crying loudly and calling for her son, when we arrived.
Ok, here is where I get very angry. My boyfriend asked her why she had not called 911. She carries the phone with her......incase she falls. She said she was waiting for him. I am with her on a daily basis and know for a fact that her mental state is such, that she could not call 911. SHE WAS HOLDING THE FREAKING PHONE IN HER HAND! I was tempted to call 911 just in case she did break something, but she said no she was just in major pain. My boyfriend lifted her up and put her in her wheelchair. I gave her, her pain injection and left her alone. I was too angry to be around her. Nothing more has been said. She knew/knows better. Lately her lates trend is hypochondriactic. If this is a plee for attention, I do not know how to respond to it. She is asleep 75-80% out of the day and when awake she is having dinner with us.
Most who reply to my posts have had caregiving experiences with loved ones in the past. Did any of you have any expereinces like these? If so, any suggestions on how to deal with it?
Guys/gals, thank you so much for letting me vent and responding. This really helps.
Texas
texas109
10-28-2002, 02:32 PM
Update- My boyfriend did scold her for not calling 911. We were furious because the fire department is about 2 blocks away from the house. My boyfriend said it was her pride that caused her not to call. Whatever the reason I was very concerned. I do not know if I can handle mental problems on top of the physical problems. If my boyfriend had not made a stand on this I would have left. At the moment all is peaceful.
Texas
Texas