A Message to the "Lurkers" Out There

[Guest]

Hi I so need this, I don't post regularly, but have felt so at the end of my ropes, feel like I have anxioty depression. there is a class on the 13th of nov, I am going to go. don't know what to say, feel like anything I have to do is to much, get anxioty making out grocery list, hope I get what we need. I used to go out more, but people make me feel guilty cause I left him home alone. , also was getting to tired to go, He is ok with it, the doc is ok with it, used to help w/computer classes at night but quit causes was to hard to go out at night and work next day, now my schedule has changed and can do this in the day, am scared will be to much and i can't do it. my brain is fried and can't process or remember things. am tired but don't sleep well. there is so much more,but don't want to go there now, but thank you for being there. kattie

[Yellowrose]

I know that anixity was the worst for me. I was to scared to leave my husband, afraid that something would happen to him while I was gone and would not be there for him. I did not leave the house other than to go make the arrangements. He lived 20 days and to think about you and others as a long term caregiver, well I just thank GOD daily that it was very brief. But still after he passed I still didn't want to leave, what my family done for me, was to promise me that we would drive to Dairy Queen to get a shake and come right back, I never even had to get out of the car, then slowly I would start getting out, but out of all honesty Valumn helpped alot. You sound like you to need to see someone and get some help, there are several medicines out there now and I know that for me, some mediciations helped me get through some of the hard times. I know that you said that you are going Nov for meeting, keep that appointment, It may be the best thing that you can do for yourself. Please keep me informed on how you are doing. I will be praying for you and look forward from hearing about your appointment.

[stargazer]

My IS sleeps until 10:30am to 1:00pm almost every day. I
am a early riser (about 6:00am) I now use the time before
IS wakes up to walk, breakfast with friends, shop or any
thing else I want to do. If Is wakes up before I get home
she can push a pager that rings my cell phone.

Dave My IS has the same schedule as your wife,he gets up between 10 and 12 noon,he arises and wonders around for a bit then goes back to sleep,he stays up late because he sleeps so much during the day. What type of pager rings your cell phone? I have a cell phone but it doesn't have a pager. I too am an early riser and your idea sounds great about getting out and doing something for yourself. I just might start doing that.
stargazer

[texasmoomom1]

Hi all. My name is Lynn. I have been caretaker for my mom for 4
years. Really all in all that is going ok. But back in june my
husband was hit by a train and
I have been caring for my mom for 4 years. that is
going ok. not too many problems. except i feel like a prisoner. Now my
husband has had an accident in june of this year. He is paralized from
his waist down. He has had an addiction to pain meds since november of
2002. now since the accident untill lately he was doing ok. the last
month has been pure hell. he wants to take way more than he is
supposed
to and i just can not handle going through all that again. I really
feel like we need to divorce but he has no where to go. He has a
teenager and she lives with us. we all fight all the time and it is
starting to make me sick. i dont even want to get out of bed anymore.
is is sad. is there anyone out there in this perdicament? if so please
ad me to your messenger list. lynn_williams4@yahoo.com I so need someone to talk to.
i am glad i found this place. and i hope my pitty party is a normal
thing. Now all i do is take care of him. He is angry all the time.
Not much has changed with that since we got married. He had an
addition to pain meds before the wreck. Now it reaches up and bites
me in the but. We fight all the time. I am tired all the time.
hugs and prayers to each of you.

[Caterina]

Found the sight a couple of days ago. Talked to IS about it. Both of us sad that so many are struggling too, but glad to see we aren't alone. Ten years of marriage, and we haven't really had a caregiver/pt relationship except during hospitalizations and recoveries.( 5 major in 10 yrs). I struggle with employment, because just about the time I get established, his health takes a turn and I wind up out for two or three weeks. Utter the letters FMLA and watch what happens.
Therefore, I took a job as caregiver to an Alzheimer's pt. out of our home. Out of the frying pan, into the fire. My family and I (I am not vain enough to think I survived it alone) cared for her for three and a half years until her death (in our home) 2/2005. By the time she passed it was like losing my grandmother. Her daughter (also very ill with PPH)and only living relative became like my sister. Sis knew I was exhausted, so a couple of weeks after the funeral, she decided to invite the family for a weekend at her place. 30 min after we returned from dinner, she hemmorhaged and died. We brought her home and buried her next to her mother. It took months before I could sleep through the night. I had nightmares about having forgotten my pt. , I had nightmares about Sis's death. It felt odd to take care of myself. I was fried. We left our home of seven years and tried to go move back to our hometown. Huge Mistake. Luckily, the house didn't sell, (but it was found by copper thieves) so we moved back. Both of us thrilled to be home, (even with the damage) although now at risk of losing it. Both moves incredibly hard on IS. Radiation damage causing bones to deteriorate, spine, ear, etc., only 18 inches small bowel left, chronic diahrhea, chronic malnutrition, chronic pain, two year hospitalization caused PTSD, huge fear of being hospitalized. Have to practically sit on him to keep him in when necessary. Have even put him in the car and driven him around the block just to prove to him that he can leave if he wants to. Laminectomy on bottom three vertebre 2/2004 not as helpful as we'd hoped. Mobility decreasing almost expontentially since the last move. Have Neurosurgery appt. 24th of this month, but he told me yesterday, that if they can't help him, he's ready for a wheelchair. Please understand, he's overcome the 2 year process of watching his intestines be whittled away to almost nothing, being told he would never eat or drink again, survived three major staph infections from medi-ports, a 15 hour surgery to resect the intestines and eliminate the illeostomy and TPN. He walks a constant tightrope between malnutrition and dehydration, and has on occation spent entire nights in the bathroom, but he [i]isn't hooked to anything.[/i] For him to tell me he's ready for a chair is HUGE.
Did I mention, he's the love of my life, my soulmate, and my best friend? I live in fear of the day that his being here with me is not enough to overcome the pain.
How's that for lurking?!

[easygoingeric]

Tpierce,
Welcome Sorry you have to be here but glad you found us. WSA has a lot of wondreful people and you will recieve lots of support and understanding on this board. I hope many see your post and welcome you. You have been through alot in the past 10 years, no wonder you felt fried. Thanks for sharing your story, Post often.
Eric

[stargazer]

I am fairly new to WS too,I have been telling everyone that I can about WS website/forum. It helps so much to talk to people who are in the same shoes as yourself. Cause nobody knows till they walked in yours awhile. I can barely work part time outside the home,so I foresee in the near future that I won't be able to leave the home at all so I am finishing up a course in medical transcription so I will be able to work from home. Didn't think I would like it,but I am making myself like it. I understand wholeheartedly about struggling with a job,I am afraid to commit myself also to another job,as I am the type that doesn't like to call off work. So at least with transcription work,you can work at your own pace and still get paid well. The job I have outside the home is very flexible,I make my own schedule.

Found the sight a couple of days ago. Talked to IS about it. Both of us sad that so many are struggling too, but glad to see we aren't alone.

You see your not alone! Not no more. WS has helped me so much,even for the little time that I have been here,so remember we are all here with a shoulder to cry on.
stargazer

[Erin]

I moved this thread so that the lurkers can actually view it before registering.

For you lurkers, this is just a taste of what you'll find on the rest of the site once you register.

When you do register, please be sure to indicate something about yourself or your spouse so that I am sure you are a Wellspouse and can activate your account quickly.

[mary]

I think it is wonderful that you take the time to listen. I would like to feel helpful. I have learned from past experience that many people would like to be helpful to others but have limited time. Also, if someone is very depressed and frantic, I want to be sure I do not unintentionally say the wrong thing. You said the following:" If you are reading this, you are probably hurting, and your isolation is one small part of your situation that can be cured. " I would really like to feel helpful.
I would like some guidelines on what to say and not say. Reading how people reply and post has been very helpful to me.
I want to know how we maintain a healthy distance from the person we are listening to and trying to help. I want to support and encourage others without ending up feeling too responsible for their problems. How do the experts do this?
My husband had a brain aneurysm in 1993. I often feel isolated and yearn for someone to talk to. But I do not want a pity party where I end up feeling worse than before I began.
I wish I could say I would be happy to give out my phone number to someone hurting. but what do I do if they phone and I can't talk because I'm babysitting (as I often do) right then?

[mary]

II wish I had the wisdom or wit to help you. I do carre. I will be reading to see how you are doing. You seem to be trying and that is what counts. You are making an effort. I'm sure there will be others in the class you are going to on the 13th of Nov who are as anxious or maybe more so than you. You are good at putting your feelings into words. Many are not. I'm sure you are very needed there. someone there needs a friend like you.

You said:
"I used to go out more, but people make me feel guilty cause I left him home alone. , also was getting to tired to go, He is ok with it, the doc is ok with it, used to help w/computer classes at night but quit causes was to hard to go out at night and work next day, now my schedule has changed and can do this in the day, am scared will be to much and i can't do it."

I'm sure you will meet people at this class who want to support you and not make you feel guilty.

Please keep posting. I am looking forward to reading you. I want to know how your life is going.
Mary

[mary]

Please keep posting. I do care. I want to know what encourages you. What makes you smile? What could someone say that would offend you?
It sounds like you have so many different problems and they all sound like big challenges. When I feel overwhelmed I make lists of what bothers me or what I have to do. I try not to think about step 2 until I finish step 1. I have to work at not worrying and fretting. Writing lists and deciding what I should do right now andtrying to forget tomorrow for just a few minutes helps me.
What do other readers do when they feel overwhelmed?

You said "i hope my pitty party is a normal
thing." In my opinion, most people feel helpless and alone at some time. We all need to feel loved and encouraged. I think you have helped many people by putting your feelings into words.
I will be reading what you reply.
I do wish I had a magic wand.
Mary

[mary]

YOu say: " Every now and then a thank you would be appreciated. Am I wrong?"
I do not think you are wrong. But right and wrong often do not produce effects. My IS has TBI and woul have moments of rage and frustration. Trying to discuss this with him only made him more upset and upsets could lead to seizures on his pat. Now when he has done something I do not like such as chewing me out, calling me bad names and not remembering it, I tell how glad I am that he does not do or does little that which he is doing. It may sound crazy but it works for me. He still has temper tantrums but they are not as bad or as often. I try to focus on what to do and not on how I feel.
I ask for a thank you and rarely get one. So I tell him it warms my heart that he is so grateful even though he is not good at expressing it. I'm still not getting the thanks yous I would like. But I'm focusing on what to do and not on my feelings.
what do others do when they feel unappreciated?
Mary

[mary]

Clearly, I do not have your ability with words. This article on spouse guilt has helped me so, so much. I know just leaving the house and trying not to worry makes me feel so much more energetic.
I do wish to care for my IS. I want to be aware of his physical condition and make him as happy as possible. But I want to not have to think about him always. I want people to ask how I am doing.
I make an effort not to talk about him nonstop when I am with others. I go to my daughter in lawas to babysit and tell myself I will not mention him unless someone asks about him. I guess I'm trying to say that after 14 years I'd still be obsessing about him and doing too much of the talking unless I made and continue to make an effort not to do so.
Mary

[granny]

Dearest Mary,
While I do understand that you want to help (we all do), please do not give your phone number to anyone without talking to some of the moderators.
Sometimes you can help just by posting a response here, or at one of the other threads. There are alot of ways we can help without giving out personal information. You sound so sweet and caring. Please take care.

[yourmysunshine]

Mary;
I have found out that to help someone more one on one is to use the PM feature here. Works very well for many and you can also get to know that person better on a personal level if an issue is neccessary to do so. So many reasons not to give out private #'s.