I'm feeling guilty...help

[redheadedone]

I am a chronic pain patient (Trigeminal neuralgia, other nerve pain disorders as well). My older brother has been in my care for 12 years. If not for my husband I could never have come this far. My brother has aseizure disorder, mentality of 10-12 yr old and he has a lot of OCD issues...we've been able to cope until the last few months. He's now out of a hospital which helped diagnose the latest problems...schizophrenia and demental. Its scary to hear noises in the night like something from the exorcist.

My spouse and I haven't had the chance to be empty nesters...our children were moving on as my brother moved in. Now that we're nearing our 60's I've decided to put him into a full time health home but I don't know how to do this. We want him to be where most of the family has a chance to visit, so it would be in California (Los Angeles County in general). He has been on medicaid/mediCAL since age 18 and I don't know if there are places to take him when that is all of the money he has and the family is not able to add to this...nor have they ever offered to help with his care...

I've just had a cancer diagnosed after being cancer free for several years. I need to spend some time with my husband and children and I can't care for my brother any more. I feel uncomfortable when people say things like "you've been a saint"...its so hard. The recent problems he is being treated for have just hit me so hard...I feel my own life draining away and I try so hard not to show how hard its becoming on me and my husband (he's the saint...when my own 2 other brothers wouldn't even take him for a night or weekend in all of those years...my husband stepped up to the plate...).

So...if there is a link, your views, ideas...please help...right now I'm running around in circles and I'm sinking...

Thanks...

[joy]

Woah and welcome. I have not even read all of your post but I have to tell you, you HAVE to think about your health or everything else for everyone else will fall apart. Now I'm going back and read the rest. There will be better advice and more practical advise from others soon or by the beginning of the week I'm sure. welcome again. I am 62 myself ;)

[joy]

Oh I wish I had some phone numbers handy. Trouble is I am not a methodical person and have some but I am a crappy keeper of things. I am sure as soon as others read this they will know of ways and have links for you. I just know that there is someplace that will keep your brother for his monthly check and likely give him some for spending money out of it.

Never mind being a saint. A person has their limits! It sounds as if you need to draw up your own strength for your own battles. Not one person here will tell you it is your duty to be your brother's keeper, I assure you.

We are not heartless people either. It just sounds as if you and your family really do need to have time to get it together for your own good now, gather your strength and get ready to win a big battle for YOU.

I am so happy that your hauband is a saint. Mine was too. I admit it did not do any harm to our marriage, my keeping my mother. But it sorta did to me and that in itself indirectly did to my husband. I don't regret it but there is always room for improvement in any situation usually.


RHO red or whatever I can call you I hope you keep checking in with us. I know several people are really busy right now but all usually get checked in before long once the week starts. Just keep checking and look around and if there is any other forums that you see that you like, join in. Myself, I love the Forum for Emotional Support found here.

I'll be seeing you later and take care

oh yes, I know about TN. I am happy to say that I have not had any major upsets in some time. That is something to smile about, huh?

[tic chick]

dear redheadedone, *bunch

welcome to the forums!

i just looked up the website for the los angeles county of public social services. here is their website:
http://www.ladpss.org/

just clink on that link with your mouse.

the site is easily navigated and you should be able to find the right place that will help you place your brother. i certainly understand you needing to have time with your husband and family and the strength to face your own health problems. you and your husband have done so much for your brother, now you must think of yourselves.

i hope this website helps you. if not, please tell us what other support we can give you.

take care of yourself,
jeannie

[Nana4&cntn]

Hi, I was a case manager for the developmentally disabled/mentally ill in Omaha, NE. I went through the site that jeannie gave you, and found another one that may help you out. Your entry point will be through an intake case manager. Do you know your brothers IQ, it is a strange question, but they will need to know so he can be placed in a residential setting. You will need an actual assessment or they can tell you where to get one. Services should be different for someone with a lower IQ and mental health issues, than a person who has just mental health issues. Below is a site that lists facilities and the populations they serve. You may want to get guidance from the site jeannie gave you, then look at the providers. It will give you an idea of what may be available. Most places that receive state, federal and local fundings will accept someone based on their income. Your brother should also be eligible for SSA or SSI. Good luck and I will try to check in. Please feel free to PM me if you want. Your health should place him in a higher placement order. You may need to make some waves as the squeeky wheel gets the grease! Especially in these settings.

http://dmh.lacounty.gov/provider_contractor.asp

[redheadedone]

I am waiting to ease off my "mwb" (morning with brother)...I just was so frustrated with everything he always could do and still can't but won't and while I know he is not being contrary and difficult on purpose... I take it all in...and I run to the boards...thank you.

He now has a caseworker and after a 17 day and night assessment they gave him "abilify" and say he's fine now...he isn't...he is falling all the time, unsure on his feet...this morning he didn't take his meds at the table...he dropped them on the floor...I walked into the kitchen just as our dog was finding her death of choice in the form of lamictal or oxybutinin (for what he calls his 'leaking' problem.) He goes to a senior 8-2 day home on Thursdays and Tuesdays...I feel so relieved not to be on call...his IQ was once noted at being 70, but since the dementia and schizophrenia have started up i'm not sure what it all means.

I've never been squeemish, but washing his white briefs stained with a bright yellow that does NOT come out...cold water, hot water, bleach, stain removers...you name it. This has been a problem for about the last 8 years. He says he doesn't know and I've never seen urine stains so strong...he does drink liquids throughout the day but...geez, is there a "laundry help" thread?

When I go in Thursday for my doctor visit I'm taking my dog by the groomers my brother will be at the day center...my spouse will be out of town and it will make my cancer issue a fun one to deal with...

And, I have a real name and have no problem sharing it...you are so kind...

Kris

[Buttons2]

First a big cyber hug*hug

You've just found the best site possible for support! We have so many people here dealing with health & family issues.....you will never be lacking in support!

Guilt is a self imposed emotion ya know. We all have some from time to time. However,in your case you have absolutely no reason to ever doubt what you are doing in placing your brother in a home!

I have lived with a schizo for the past 10 yrs. He's only had one scary incident since I've known him. My oldest son is also schizo. Both of these men manage to function in the real world but it's hard for them. It's hard for me to always keep in mind their behavior is the best they can do.

Having said that I cannot even imagine what you are dealing with. As for the urine stains,could this be from some of the meds? Have you tried soaking in Biz? Hopefully this chore will soon be a thing of the past for you.

You didn't say what kind of cancer? I so hope you will be OK. We will do all we can to provide daily support for you. Seems to me you've had more than your fair share of stress,and for too many years. I agree with Kathy-push all the people you need to for a quick placement of your brother.

Take care of YOU,take it one thing @ a time.

[joy]

Hi Kris. I don't even want to go back and read what you said in your introduction to us as I remember all to well the sense of panic that was building up in myself as I read it.

Old habits die hard is just as good a statement but it is one I think most caregivers may have. It might be why they end up as caregivers for such a long time sometimes.

Excuse my out loud thinking as I am one that for the moment is out of a job of caregiving but it seldom leaves my mind. I can only imagine how hard it is for you to keep you fears for yourself in check with having such health worries as well for yourself.

I hope you have a better support system than I have. My husband is one that does not believe in worrying and cancer is at the top of the list. Since my own dad died from this when I was young, it is harder for me to dismiss things and whenever there is any suspecion of it in tests etc, I don't really feel well and would like to discuss my feeling. However it is hard to do with hubby and I usually end up trying to stuff my own fears inside and end up not only scared but also a bit resentful.

I hope your situation is better but in any case if you could use more support of any kind I am so glad you did find us. Don't think of it as being weak rushing for help, it is not! It is a wise person that knows when they need some boosting up of courage for tackling any type of problem in my opinion.

I am looking forward to hearing more from you and as I hoped, the others came through for you. I am hoping you get through Thursday's visit okay. I know I hate doctor's visits of any kind and feel you must be a bit nervous about this one for sure. Just know that we will be with you in our minds and spirits and I will be praying for you also.

Oh yes, I got tired of trying to keep my hubby's undershorts clean too. I still sorta pride myself on keeping all whites white. It started with my children's cloth diapers I suppose. I still use "blueing" whenever I can find it in fact. But some of the stains just do not come out and I have learned to not wrestle with it so much. Hubby can just wear them all spotted up as long as they are clean I've done my part for sure. I also have one of those thingys that I can stand upright and "pick" thing up anything with my grabber handle stick and pop it into a laundry basket. My problems are solved for the most part then.

Take care.

[Buttons2]

Easy solution to those stained briefs: go to Wal-Mart & buy a package of Hanes,I think they cost a little over $1 pr!

Banish that guilt. Try to focus on the future. Vent away,we don't mind one bit. Get the powers that be to take over control of your brother,you have a cancer fight on your hands afterall.

((((gentle hugs))))

[redheadedone]

Buttons, thanks for that...we did go buy all new briefs for him...but I think I'm gonna take your advice. We live in the country and have to take our own garbage to large bins placed outside of town..I had thought of the depends thing, but I can't trust him (brother) to dispose of them properly...but the bag 'o' undies for every week when we go shopping is a great idea.

It's the smallest things that get to me and then I find myself apologizing. He says "I know...mom used to be upset... and I just try, you know...?" Then I feel like a jerk...

I did manage to get my lip cancer appt moved to today. I had malignant melanoma on my neck many years ago. This latest is right to the very right of my lip and diagnosed as a squamous cell carcinoma...once again, I thought it was just a bug bite...it didn't look like my previous cancer. It's on the same side of my body, my trigeminal neuralgia is on the left side (I have a pain pump for that side). My father had squamous cell carcinoma, one tumor after another into the mouth, tongue, upper palate...he smoked. I never have...I guess I shouldn't be so concerned. i spend so much time in doctor's offices and hospitals between my brother and myself...and I've seen so many people suffering much more.

You are all so wonderful to "talk" to. My first time here was back when I had such horrible pain...then got my TN diagnosis. The chronic pain board was awash in people sniping at each other, poor John Lester must have sat down and cried!!! Having to warn people to stop acting like children. I laugh now, but there were only 2 or 3 people on the Trigeminal Neuralgia board and not much knowledge of a help or cure so I went to Chronic Pain which is where I thought I'd find a "home"...ahhhh...things have changed for the better in many ways.

OK...I'm rambling. Since I will likely not be able to speak, this may be my only way of expressing myself til stitches come out...cross your fingers for a clear "big dig" and clean margins...

thank you all so much. we'll stop at Walmart on the way home!

Kris

[joy]

Hi Kris. I am happy that you feel like you are talking as that is how I feel also. Of course it is when I start my rattling off my mind or thinking outloud that I get into the most trouble but that's okay, it is amoung friend.

It stuck me and I just had to tell you this. I too had a spot in my jaw back in the 80's that was precancerous tissue. I had tried new metal teeth. If I could remeber what they were, I'd say, lol. It was top and bottom metal hardare since I have so many missing teeth.

There is no back teeth at all on one side and since I've been without most teeth except my front ones, my tissue has filled my mouth. So when I sneezed with all that metal, I started a sore. It kept getting bad.

I also developed apathous ulcers after a weird virus in January one year. The ulcers kept getting to be more and more. I did not know if there was a connection or not, just that things were going south in a hurry. I had a biopsy but the doctors were dragging their feet for well over a week to give me the report. Needles to say I was getting pretty antsy since I had witnessed firsthand more than my share of cancer in the VA hospital when my dad was there with cancer.

I got the bill even before I got my diagnoses. So I just asked the lab the results. I did finally heal my ulcers by October of the same year but it had been a BAD almost 11 months for me.

I found it odd that I developed my TN first on the same side as my biopsy and ? whatever was. I am hoping Kris that your tests come back harmless and now that you mentioned TN, I hope that yours gets to the point that it is as manageable as mine has been the last few years. Boy I know both would be such a blessing for you! I still am fearful of both cancer and TN pain but so far, so good it seems.

Please stick around. I sort of just don't post on the pain forum unless I absolutely have to as I focus on it too much when I do. I also just don't seem to fit in on the tn and some other forums as well. No bad reflections on the people there, it is more just how I am and it is hard enough for me to feel like I fit in anywhere these days. But I figure the emotional forums should be fair game for anybody so I just jump in whole hog and enjoy it whole heartedly as well.

[tic chick]

kris *bunch,

yeah, i will be hoping the squamous carcinoma was all cut out.

buying new briefs is certainly easier than buying stuff to get stains out that don't seem to want to come out. i figure if it doesn't come out with bleach, i throw it away...lol.

i hope when you get your stitches out, you will be able to work on placing your brother.

take care of yourself!
jeannie

[redheadedone]

once again, its nice to come here to share and read what others are feeling and going through.

My brother is at a special center today. At first it was twice a week from 7-3...this morning I was told he could go Monday thru Friday. He said "no, I like it just twice"...I'm going to try to get him to go at least one more day a week. He enjoys it and the time that he is gone is such a relief.

The appt to have the cancer removed went well. He went beyond the margins and even cut an itsy bit from my mouth, but I told him "GO FOR IT ALL!" So next Tuesday I get the stiches out...on that same day I'm having a mammo (just annual screening...my mom had breast cancer), seeing my pain doc (TN and I have that pain pump), chest x-ray for reassurance. I've got it all worked out for the morning. All of it is being done in one complex except for the skin stitches.

My TN was left sided which was considered unusual when diagnosed...
Every cancer and other issue over the years has been on my right side.

thanks for 'listening' -- sharing is so cathartic..
Kris

[Buttons2]

Kris,sure do hope they got it all,seems to me you've had more than your fair share of cancer. Sounds like brother is trying to control where he is during week? Being stubborn-or just wants to be with you? I assume if he's offered 5 days a week this will be part of the transition to going into a home?

Anyway,good luck with brother & hopefully he'll learn to adapt & enjoy! himself.

[joy]

I am glad you felt like sharing with us. I'm glad that is over for now.

I say if you want to go for five days a week. But that's me being rational now and I know it's easy for me as it's not my brother. I'm just hoping you can be a little bit hard hearded for your own good now. Take care.

[redheadedone]

Sometimes things just don't all work out the way we plan...ha ha!!! My doctor sent me to an ENT because the cancer has spread to the muscle in my chin to lip area. I go on the 8th of Sept to a plastic surgeon to get a better result when he removes all he can see. By the time I'm finished with the plastic surgeon I will be packing and/or on my way to California. I've been doing some research on where to place my brother so that he will get more family and friends to visit him...all of our family is in California. As you can imagine the extra stress has been palpable (and I still haven't received my mammo results). We bid on a home and the offer was accepted. We are leaving our house on the market. Right now things have stalled because of Gustav. Looks like it will stay to the west of us. We have a storm shelter (a real comfort) so maybe someone moving to this area (some new companies bringing folks here) will find it a good idea as well. We're on the phone and internet all day t day because everyone is worried we'll get a taste of Gustav...we're getting some of the winds and rain...so far so good.

I plan to hook up my computer as soon as we get to our new home in Cali, and will come in check in after my plastic surgery...

So barring any hurricane (we STILL have a possibility of a TORNADO).

Once again thanks for being my safe place to go. Keeps me from grinding my teeth (bruxing) but that's a whole other deal (and I do have a guard).

'see ya'll soon'!!!
Kris

[joy]

You absolutely have to keep us updated whenever you can. Our friends from St. Bernard's Parish made it back to our area safe and sound I have written too much about it already as I am excited to see frinds again. I'm also glad that despite their bad luck from Katrina they are still in good spirits with this one and have NO intentions of returning home until they know of no others headed their way. If that's possible. I already know the traffic is horrible.

I hope you health troubles all turn out for your best too so know I will be thinking of you.