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Old 09-19-2007, 12:02 AM   #1
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Rhoda55 HB User
Feel like I want to scream!

I am 51 and an only child, who has been taking care of my parents for about the last 10 years. Dad passed away in 2001, so now I have Mom living with my husband and I. She is not capable of living alone anymore due to several health issues. She has highblood pressure,parkinson's disease, has had a colon ressection, breast cancer, and most recently had a tia stroke. She has been in and out of the hospital on and off for the last 5 years. Over the last year, she has drasticly slowed down, and has been losing weight since the last hospitalization. She is now down to 100 lb. She is in a wheelchair a good part of the time, but can use the walker with supervision. In the past when she has been in the hospital, I always had the feeling that she would get well, and get her strength back. This time, I really don't forsee her getting to much stronger. She never did have a good appetite, and now it is even worse. We have talked to the doctor about it, and of course he suggests hiigher calorie diet and Ensure. I have asked her to drink the Ensure,but she refuses.Before she came to live with us, she had taken a fall in her home and went to the hospital.She didn't break anything, but that is when we found out that she had had the stroke. She had said that she had fallen because her legs had given out on her. She complains about this weakness in her legs pretty often. She is becoming very needy and demanding. And she complains about everything constantly.From her tea not being hot enough, to wondering what my husband is doing home from work(He owns his own construction company and works in the field, and has an office in the home where he does the job bids,draws up prints, etc.). I help her to the bathroom when she needs it, I help her dress, I make her meals, I help her bathe, I clean her feet and cut her nails, take her to doctors appts, pay her bills,basiclly I do it all. I help my husband in the office and also run errands for him too. Also try and keep up on the house,too. I feel so stressed, I want to scream!!! I feel like the life is getting sucked right out of me!! I feel like I am everyone's care giver!! No time to take care of myself, and don't have time to be sick. (Forgot to add that my husband is a diabetic who is recovering from a nasty diabetic wound that he has had for almost a year, and he also has high bloodpressure). I am so sorry this has so long! Just had to vent!

 
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Old 09-19-2007, 02:37 PM   #2
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SherryAnne HB User
Unhappy Re: Feel like I want to scream!

Hi Rhoda55,
I know EXACTLY how you are feeling! I am having the same kind of day today. I have spent most of the day crying. I am very sorry for your mom
and your husband. But, I think sometimes people forget about the caregivers who indeed get the life sucked out of them. I am almost 50 years old and feel like 95! My mom was diagnosed with extensive small cell lung cancer (stage IV) on Dec. 29, 2006. But like you,
I have been taking care of her for the past 14 years, especially the past 9 years since my father passed away of acute myleoid lukemia. My husband and I built a home (I also have two children, 21 & 16) 5 years ago to accommodate my mom as she is also an amputee (right leg) and cannot wear a prostetic leg due to edema. At best, life has been a living hell for me and
my family. My mom is terminal and most likely will not last till the end of the
year. It would be a blessing at this point if GOD would just take her home.
I was told today, that she can no longer be alone for more than about an
hour at a time. You see, the cancer is not only in her lungs but throught almost every organ, including her brain. She is becoming much more difficult
to manage because of the brain cancer now. Like you, I do EVERYTHING,
from feed to bath, etc. However, I do have additional help as she has been
with a hospice program since mid March, 2007. There is a lot more to this
story but I think I need to stop now. I really do need someone who knows what I am going thru to vent to. I love my mom dearly and will do anything I need to for her. But, I not only want to scream most of the time, I just feel like I want to crawl out of my skin!!!

 
Old 09-21-2007, 08:09 AM   #3
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Join Date: Nov 2006
Location: Il
Posts: 61
Rhoda55 HB User
Re: Feel like I want to scream!

Quote:
Originally Posted by SherryAnne View Post
Hi Rhoda55,
I know EXACTLY how you are feeling! I am having the same kind of day today. I have spent most of the day crying. I am very sorry for your mom
and your husband. But, I think sometimes people forget about the caregivers who indeed get the life sucked out of them. I am almost 50 years old and feel like 95! My mom was diagnosed with extensive small cell lung cancer (stage IV) on Dec. 29, 2006. But like you,
I have been taking care of her for the past 14 years, especially the past 9 years since my father passed away of acute myleoid lukemia. My husband and I built a home (I also have two children, 21 & 16) 5 years ago to accommodate my mom as she is also an amputee (right leg) and cannot wear a prostetic leg due to edema. At best, life has been a living hell for me and
my family. My mom is terminal and most likely will not last till the end of the
year. It would be a blessing at this point if GOD would just take her home.
I was told today, that she can no longer be alone for more than about an
hour at a time. You see, the cancer is not only in her lungs but throught almost every organ, including her brain. She is becoming much more difficult
to manage because of the brain cancer now. Like you, I do EVERYTHING,
from feed to bath, etc. However, I do have additional help as she has been
with a hospice program since mid March, 2007. There is a lot more to this
story but I think I need to stop now. I really do need someone who knows what I am going thru to vent to. I love my mom dearly and will do anything I need to for her. But, I not only want to scream most of the time, I just feel like I want to crawl out of my skin!!!
Hi Sherry Anne, I am so sorry to hear what you are going through with your Mom. I know how hard it is on you and your family. I feel so guilty for some of the feelings I have sometimes about Mom, because you just never know how long we have together. But, it is still frustrating! I hate feeling like I am the parent and she is the child, I just wish I had my 'old' Mom back.

 
Old 09-21-2007, 08:41 AM   #4
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Join Date: Sep 2007
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jlgchia HB User
Re: Feel like I want to scream!

My Mother has Stage IV Non Small Cell Lung Cancer with Metastasis to the Brain, Adrenal Glands and Lymph Nodes. The Brain Metastasis has been killed from radiation therapy. She has been in and out of the hospital 3 times this month for chronic pain in her back, under arm area to front breast. Dropped 45 lbs in the past 1 Ĺ months. Cannot eat, has a destructive rib causing her excruciating pain to her nerve. The Dr. does nothing for the pain but tell her to go to the hospital or calls in morphine. All he wants to do is run tests, tests and more tests. When all the while the problem is right there listed in her CT scan results. My Mother is suffering and it is killing everyone and the Dr.ís do not know why she has painÖ. IT IS IN HER CT SCAN! I just want to scream. My Father in Law is a Vascular surgeon in another state so I sent him the scans to see what he thought. Very simple they need to kill the nerve. Itís called an Intercostal Nerve Block. Why on earth havenít these Dr.ís done anything about this all this time? They know what it is, yet they insist on constantly ordering more tests week after week while my Mother is brought to floor in tears from the pain.

Yesterday was the last straw. I took her to the ocean to just look at it for a few minutes and breathe the air. I thought she was going to pass out because the rib pain kicked in again. She was fine for maybe 10 minutes. The Dr. does not help her pain. So finally everyone agreed it is time to call Hospice. They are coming today at 3:00 PM. I am really scared because her perception of Hospice is you have to be dying. (No Dr. has given her any sort of time line) I just hope they do not say anything like that. Does anyone know what they say in their presentation?

 
Old 09-21-2007, 04:09 PM   #5
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Join Date: Feb 2006
Location: PA
Posts: 284
elphers HB User
Re: Feel like I want to scream!

Rhoda and girls,
I also want to scream and I DO scream sometimes, usually when I am in my car!
It will be one year in Nov. that I haven't had a life. Believe me, I am not complaining, but it is nice to vent to others who are going through the same thing!
My Dad died June 1, just over 3 months ago. But since Nov. I was taking care of both of my parents. Now it is just my Mom, and it's kinda weird, but it was easier when they both were alive! My Dad died of pulmonary fibrosis at the age of 77. My Mom just turned 77, but she acts like she is 97 sometimes! She also has Parkinsons, Rhoda, and before my Dad died he found out about a new shot out to help her. It does, but it ties me down more. I really am glad that it helps her, though. But my Mom thinks that she is the ONLY widow that ever had to go through losing her husband! When my Dad was in the hospital, they had their 56th Anniversary. My Mom was SO dependent on him and is now not only depressed but thinks that someone should be sitting with her 24 hours!
Her attitude was so much better when my Dad was alive, even though he wasn't well. She needs someone through the night(she has a caregiver at night) and pays a lady 3 hours in the afternoon to basically sit with her while I am at work and clean a little. I stay on Sat nights and am there ALL of my free time. I work 2 jobs and go everyday between jobs and after work, which is suppertime. So I am NEVER home to make dinner for my husband. I would LOVE to be normal and go home after work to make dinner!
One thing I hate are weekends! My Mother complains if I am not there all day long! My husband is starting to get fed up! He has been very supportive up until now, but I don't blame him! I want to spend more time with him too!
I am not the healthiest person and have lost 20 lbs (from stress!) My back hurts all of the time (I have osteoporosis from celiac disease) and have a dropped bladder. I was supposed to have surgery LAST August but I don't have the 6 weeks to take off from caring for my Mom!
I love my Mom but just don't know how much longer I can continue this pace. I get monthly B12 shots, but they don't seem to help. I am so tired of being tired! My Mother is so generous if my boys need something..., but she is NOT generous with giving me some time to myself or to my husband! Sometimes when I am sitting at her house I am so tired that I could fall asleep sitting up! Then she comments that I don't want to be there!
Best wishes to all caregivers! NO one will ever understand until they walk in our shoes!!!!!!!

 
Old 09-21-2007, 07:57 PM   #6
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Join Date: Nov 2006
Location: Il
Posts: 61
Rhoda55 HB User
Re: Feel like I want to scream!

Quote:
Originally Posted by jlgchia View Post
My Mother has Stage IV Non Small Cell Lung Cancer with Metastasis to the Brain, Adrenal Glands and Lymph Nodes. The Brain Metastasis has been killed from radiation therapy. She has been in and out of the hospital 3 times this month for chronic pain in her back, under arm area to front breast. Dropped 45 lbs in the past 1 Ĺ months. Cannot eat, has a destructive rib causing her excruciating pain to her nerve. The Dr. does nothing for the pain but tell her to go to the hospital or calls in morphine. All he wants to do is run tests, tests and more tests. When all the while the problem is right there listed in her CT scan results. My Mother is suffering and it is killing everyone and the Dr.ís do not know why she has painÖ. IT IS IN HER CT SCAN! I just want to scream. My Father in Law is a Vascular surgeon in another state so I sent him the scans to see what he thought. Very simple they need to kill the nerve. Itís called an Intercostal Nerve Block. Why on earth havenít these Dr.ís done anything about this all this time? They know what it is, yet they insist on constantly ordering more tests week after week while my Mother is brought to floor in tears from the pain.

Yesterday was the last straw. I took her to the ocean to just look at it for a few minutes and breathe the air. I thought she was going to pass out because the rib pain kicked in again. She was fine for maybe 10 minutes. The Dr. does not help her pain. So finally everyone agreed it is time to call Hospice. They are coming today at 3:00 PM. I am really scared because her perception of Hospice is you have to be dying. (No Dr. has given her any sort of time line) I just hope they do not say anything like that. Does anyone know what they say in their presentation?
So sorry to hear what you are going through with your Mom! Did you tell her doctors what your father-in-law told you? Isn't it amazing that all they can do is order more tests,when they all ready know what it is? Does it make you wonder who is really profiting from this? the reason I say this is my mother's doctor does the same thing, as far as ordering tests.I swear if I told them she stubbed her toe,they would order a test for that! What happened to the hipocratic oath? Doctors are supposed to ''care'' for their patients,and if at all possible make us comfortable when we are really ill and in pain. The doctor Mom has now didn't even step into the hospital when she was there for almost a week, after she had fallen in her home. She had suffered a small stroke, and her legs gave out on her getting out of bed in the morning. They send their "hospitalists" in to see these people. It is so frustrating! Why do we pay thes doctors such big bucks, and they don't even care enough to make an appearance? Then she went to rehab for 6 weeks, and the same thing. In that situation, a doctor, from what I was told,is only supposed to make a visit once every month. They assigned another doctor, that we had never heard of,of course.
As far as what Hospice says in their presentations, I don't know. I have not had an occasion to deal with them. My father was in the hospital in a coma when he passed away.He had suffered from strokes,diabetes,respitory problems,and MRSA. He died after suffering complications from pneumonia. My thoughts and prayers are with you.Take care of yourself!

 
Old 09-21-2007, 08:44 PM   #7
Member
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Join Date: Nov 2006
Location: Il
Posts: 61
Rhoda55 HB User
Re: Feel like I want to scream!

Quote:
Originally Posted by elphers View Post
Rhoda and girls,
I also want to scream and I DO scream sometimes, usually when I am in my car!
It will be one year in Nov. that I haven't had a life. Believe me, I am not complaining, but it is nice to vent to others who are going through the same thing!
My Dad died June 1, just over 3 months ago. But since Nov. I was taking care of both of my parents. Now it is just my Mom, and it's kinda weird, but it was easier when they both were alive! My Dad died of pulmonary fibrosis at the age of 77. My Mom just turned 77, but she acts like she is 97 sometimes! She also has Parkinsons, Rhoda, and before my Dad died he found out about a new shot out to help her. It does, but it ties me down more. I really am glad that it helps her, though. But my Mom thinks that she is the ONLY widow that ever had to go through losing her husband! When my Dad was in the hospital, they had their 56th Anniversary. My Mom was SO dependent on him and is now not only depressed but thinks that someone should be sitting with her 24 hours!
Her attitude was so much better when my Dad was alive, even though he wasn't well. She needs someone through the night(she has a caregiver at night) and pays a lady 3 hours in the afternoon to basically sit with her while I am at work and clean a little. I stay on Sat nights and am there ALL of my free time. I work 2 jobs and go everyday between jobs and after work, which is suppertime. So I am NEVER home to make dinner for my husband. I would LOVE to be normal and go home after work to make dinner!
One thing I hate are weekends! My Mother complains if I am not there all day long! My husband is starting to get fed up! He has been very supportive up until now, but I don't blame him! I want to spend more time with him too!
I am not the healthiest person and have lost 20 lbs (from stress!) My back hurts all of the time (I have osteoporosis from celiac disease) and have a dropped bladder. I was supposed to have surgery LAST August but I don't have the 6 weeks to take off from caring for my Mom!
I love my Mom but just don't know how much longer I can continue this pace. I get monthly B12 shots, but they don't seem to help. I am so tired of being tired! My Mother is so generous if my boys need something..., but she is NOT generous with giving me some time to myself or to my husband! Sometimes when I am sitting at her house I am so tired that I could fall asleep sitting up! Then she comments that I don't want to be there!
Best wishes to all caregivers! NO one will ever understand until they walk in our shoes!!!!!!!
Sorry to hear what you are dealing with! A friend of mine told me before Mom moved in, that I should set limitations and guidelines with her. And stick to them! Kind of hard to do,isn't it? Have you contacted Senior Services or the hospital services that deal with these types of problems? Do you have any one else in your family that could help you? I have no one else to help me. I sometimes feel, too, like I am aging very quickly. I went from feeling "young", to feeling like I am 20 yrs. older overnight! I don't have the drive like I used to, it's hard to get anything done these days. You sound like you are really having a rough time of it. I hope you find some relief for yourself. What would happen if you tell her that you need some more help? If this situation is effecting your physical and mental health, you need to take care of yourself,too. I think we put our selves on the back burner for so long, we forget how to take care of ourselves. We are always there for everybody else but our selves. Good luck, and TAKE CARE OF YOURSELF,TOO!!!!

 
Old 09-22-2007, 03:53 AM   #8
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Join Date: Feb 2006
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elphers HB User
Re: Feel like I want to scream!

Rhoda,
In regards to help. I have a brother in Calif. so he's out. When he came home for my Dad's funeral (he hadn't been home for 7 years) he stayed a few days. When he got back to Calif. he emailed me and said that he couldn't believe how much I do for our Mom.
I have a younger brother who lives about an hour and 15 minutes away. You would think that it's 10 hours or so.......... He basically only comes for one night on the weekend ONLY when the night caregiver is going away. So he's coming next weekend for Sat. night and I will stay Fri. night. So when do I get a weekend night off? That will be 4 weeks for him, next weekend , since he has stayed. He originally was supposed to stay every Friday night to save my Mom some money, but that didn't last long! She pays $10 an hour cash to these ladies. If it was up to her, I would stay at her house and still get up (at 3am) for work, but I am NOT doing that! I have vented SO MANY times to my brother, but he just doesn't get what my life is like and why should he as long as I am 5 minutes away? What would he do if I lived away or have to get surgery some day? It would be interesting..........
My Dad had 3 compression fraction surgeries on his back, from osteoporosis. I am always afraid when I help lift her from the bed that I might hurt my back and need surgery, like my Dad. I feel if my brother cared about my back and bladder problem, that he would at least attempt to stay more often!
I'm sorry that you don't have any help at all. It's sad, I feel so alone sometimes. SO MANY people at the funeral told my Mom that they would come and visit her, but it has been over 3 months and NO ONE comes! Don't they get it-- if someone would only come for a FEW hours on the weekend then I could have some afternoon time, either at MY house or with my husband? Do I have to beg my Aunts and cousins? They all live 5 minutes from my Moms. Then people wonder why I am bitter and "grouchy" a lot!
I feel guilty when I lose patience with my Mom, so I pray to God and my Dad all of the time to give me patience!
Take care!

 
Old 12-26-2007, 01:32 PM   #9
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Location: Sonoma, CA USA
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TopamaxKillsMe HB User
Re: Feel like I want to scream!

Quote:
Originally Posted by Rhoda55 View Post
I know how hard it is on you and your family. I feel so guilty for some of the feelings I have sometimes about Mom, because you just never know how long we have together.
I understand completely. I want to scream everyday but instead I pop Xanax like candy. I don't have any solid support...I don't want to push my problems on my friends, I learned the hard way that "friends" have their own problems and don't want to be drained by yours. (After my father died, it was miraculous how many people I considered to be like family abandoned me, it still hurts).

This is the only support I get....and The Jewish Family Services which I visit weekly for counseling. I guess in a sense it is comforting to come here and know that I'm not the only one going through this.

 
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