susanlynne48
12-10-2011, 03:57 AM
Hello again, my name is Susan and I am the mother of an IC daughter, whose DX was confirmed around May 2011. Things have only gotten worse since then, despite several treatment methods, including Interstim. I don't think the frequent bathroom trips bothered her as much as the continuing and increasing pelvic pain. We have been to the ER so many times, I can't count them all.
My daughter is 32 yo. She lives with her significant other, Steve, and her 2 children, ages 10 yo and 18 months. Since July, I have been providing care for my toddler GD. I don't doubt my daughter's pain one bit, but things have progressively gotten worse in our relationship during these long, very long, 5 months, that I have been caring for Charlotte (GD). We get into bitter arguments - seemingly whenever I would like to have some time at home, some rest and respite. Lately, where I had been leaving after putting the baby down for her nap anywhere between 1:00 p.m. and 2:30 p.m., I have let her know I am getting ready to head home, and she complains about not feeling well and wants me 4:00 p.m. on most days, sometimes 5:00 or after on others.
It's not always the IC that is bothering her, she is plagued by headaches, nausea, stomach cramping due to constipation associated with pain meds she takes, tiredness, or just general malaise. She is in bed from the time I get to her house about 9:30 a.m. when the baby wakes, until I leave. She gets up sometimes for a few minutes and then, back to bed. Her life is spent in bed most of the time. I feel badly for her, I do, but her little daughter is really missing her mommy, so I feel badly for her, too. The 10 yo, McKenna, just kind of gets lost in the shuffle resulting from mom's illness. The baby requires so much attention it is difficult for me to devote any time to her at all. There is always a pile of dishes to wash and a kitchen to clean up. Neither daughter or her SO seem to handle anything but cooking a meal in the evening. Hubby is tired when he gets home from his construction job. He complains about back pain due to an accident he had earlier this year, along with arthritis. These folks are in their 30s! How are they going to handle their 60s? I feel rather insignificant in the face of DDs illness as all attention is devoted to her. It ends up being a case of who feels worse. That makes me feel somewhat resentful, even though I don't doubt her illness at all.
I am on SSDI myself for the last few years, am 63 yo, and have my own physical and mental limitations. I don't have a lot of money, but am always shelling out a few dollars here and there for something she needs from the pharmacy, including her meds which her Medicaid does not cover. I also provide food for the kids whenever I can, and it is putting me in a really precarious financial situation. We talk about her applying for SSDI, but I can't get her motivated to go to the SSA office to start paperwork. Her father is an attorney, and he pays most of their bills, even tho SO works - he only makes $13/hour as a laborer. He only pays the rent - $600, plus his own bills. He dislikes giving her $ for anything - even $5 she needed one day for her asthma inhaler. Grrrr.......
This week I worked 6 days straight, wanting so badly to go home after the baby was down for her nap, because I am exhausted, probably burned out. Whenever I "think" I am going to be "off" for a day, she calls and needs me, and I go running. Do I resent IC? YES YES YES!!!!!! Many days I am not feeling well myself, but I go anyway. I sometimes do think we older folks have a better work ethic than the younger generations.
In 2002-2004, I had breast cancer, had a biopsy, mastectomy, reconstructive surgery, etc. Was also dx'd with an AVM - arteriovenous malformation in my brain, and had an endovascular embolization done, followed by severe migraines for several months due to nerve damage from the procedure. In 2004, I had back surgery to repair severe central and bilateral stenoses. I also suffer from depression. Despite these issues, I garden for the butterflies, and have raised many of them. It is my passion. This summer my garden was neglected due to daughter's IC. So I didn't get to be active with my garden very much at all. I thought retirement was going to be wonderful - instead it is miserable.
I love my grandchildren very, very much. Kenna has spent a lot of time with me - I practically raised her due to daughter's other issues. Now she is busy in school, an honor roll student, plays basketball, takes piano lessons, and is in Girl Scouts. The baby is a little personality in her own right. I just want to be "Nanna", but have ended up being much more. My daughter and I have a lot of problems that began before IC took our lives. It just seems like she had absorbed my entire life, and that her demands completely consume my identity. I hope I die a quick death because there will be no one to care for me.
I wish other caretakers would post here. Do any of you require a caretaker to handle household duties and raising children? Right now, I just don't even want to go back to her house! I want to be left alone for awhile to regroup. Am I being selfish?
Please help me see things differently.
Susan
My daughter is 32 yo. She lives with her significant other, Steve, and her 2 children, ages 10 yo and 18 months. Since July, I have been providing care for my toddler GD. I don't doubt my daughter's pain one bit, but things have progressively gotten worse in our relationship during these long, very long, 5 months, that I have been caring for Charlotte (GD). We get into bitter arguments - seemingly whenever I would like to have some time at home, some rest and respite. Lately, where I had been leaving after putting the baby down for her nap anywhere between 1:00 p.m. and 2:30 p.m., I have let her know I am getting ready to head home, and she complains about not feeling well and wants me 4:00 p.m. on most days, sometimes 5:00 or after on others.
It's not always the IC that is bothering her, she is plagued by headaches, nausea, stomach cramping due to constipation associated with pain meds she takes, tiredness, or just general malaise. She is in bed from the time I get to her house about 9:30 a.m. when the baby wakes, until I leave. She gets up sometimes for a few minutes and then, back to bed. Her life is spent in bed most of the time. I feel badly for her, I do, but her little daughter is really missing her mommy, so I feel badly for her, too. The 10 yo, McKenna, just kind of gets lost in the shuffle resulting from mom's illness. The baby requires so much attention it is difficult for me to devote any time to her at all. There is always a pile of dishes to wash and a kitchen to clean up. Neither daughter or her SO seem to handle anything but cooking a meal in the evening. Hubby is tired when he gets home from his construction job. He complains about back pain due to an accident he had earlier this year, along with arthritis. These folks are in their 30s! How are they going to handle their 60s? I feel rather insignificant in the face of DDs illness as all attention is devoted to her. It ends up being a case of who feels worse. That makes me feel somewhat resentful, even though I don't doubt her illness at all.
I am on SSDI myself for the last few years, am 63 yo, and have my own physical and mental limitations. I don't have a lot of money, but am always shelling out a few dollars here and there for something she needs from the pharmacy, including her meds which her Medicaid does not cover. I also provide food for the kids whenever I can, and it is putting me in a really precarious financial situation. We talk about her applying for SSDI, but I can't get her motivated to go to the SSA office to start paperwork. Her father is an attorney, and he pays most of their bills, even tho SO works - he only makes $13/hour as a laborer. He only pays the rent - $600, plus his own bills. He dislikes giving her $ for anything - even $5 she needed one day for her asthma inhaler. Grrrr.......
This week I worked 6 days straight, wanting so badly to go home after the baby was down for her nap, because I am exhausted, probably burned out. Whenever I "think" I am going to be "off" for a day, she calls and needs me, and I go running. Do I resent IC? YES YES YES!!!!!! Many days I am not feeling well myself, but I go anyway. I sometimes do think we older folks have a better work ethic than the younger generations.
In 2002-2004, I had breast cancer, had a biopsy, mastectomy, reconstructive surgery, etc. Was also dx'd with an AVM - arteriovenous malformation in my brain, and had an endovascular embolization done, followed by severe migraines for several months due to nerve damage from the procedure. In 2004, I had back surgery to repair severe central and bilateral stenoses. I also suffer from depression. Despite these issues, I garden for the butterflies, and have raised many of them. It is my passion. This summer my garden was neglected due to daughter's IC. So I didn't get to be active with my garden very much at all. I thought retirement was going to be wonderful - instead it is miserable.
I love my grandchildren very, very much. Kenna has spent a lot of time with me - I practically raised her due to daughter's other issues. Now she is busy in school, an honor roll student, plays basketball, takes piano lessons, and is in Girl Scouts. The baby is a little personality in her own right. I just want to be "Nanna", but have ended up being much more. My daughter and I have a lot of problems that began before IC took our lives. It just seems like she had absorbed my entire life, and that her demands completely consume my identity. I hope I die a quick death because there will be no one to care for me.
I wish other caretakers would post here. Do any of you require a caretaker to handle household duties and raising children? Right now, I just don't even want to go back to her house! I want to be left alone for awhile to regroup. Am I being selfish?
Please help me see things differently.
Susan