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[lionking]

my mom was dx feb 2005 with stage iiib with mets to 1 lymph node. she could not tolerate full strength chemo but eventually did get through the radiation. her throat pain was the most awful thing. she has tried tarceva, now just had alimta but seems not to be doing well. my brother and sister avoid me, my mom, my dad (they both live with me) and my home. at first they were around almost constantly, then when she went downhill overr the past 6 months or so they have literally dissappeared. my sister faults my mom for not smiling or laughing enough. my oldest sister is very supportive. i often feel like i am having a heart attack because i am feeling so overwhelmed. i am a single parent of a college student and an 8 year old, unemployed (the time i took from work to care for my parents lost me my position), a homeowner who does not know how i am going to pull this off. i am financially taking care of everyone and i dont know how. the thing i look forward to most is sleeping but im not even good at that anymore.

my dad has no legs (diabetes) and is in kidney failure. just taking him out of the house totally overwhelms me. everything overwhelms me. waiting for my mom to get up in the morning and watching her walk so slowly overwhelms me, im afraid she is going to fall. i do not say this to anyone, nor speak about it and i try my best to act 'normal' but i suspect i dont fool too many people. obviously not my brother and sister especially because they just avoid me and say 'i am not myself'. my best friend (& my brothers fiance) (i thought my best friend) especially says this to me. on christmas i had enough and yelled at her - it totally ruined my evening. i feel that if i am 'not myself' then who am i? jeez! it does not make me feel very good about myself, i will say that. im tired of being the one to do everything and 'know' everything. i am the one who talks to all the doctors, researches, etc. i feel probably i could do better.....my second best comfort is these message boards....i just wonder all the time how i am going to get through this!

[missyk]

Talk about a plateful, Heather!!

First...take a DEEP BREATH and let it out slowly.

Ok, now we can work on this. I'm sure more will come along with better ideas, but I can give you a start, at least.

Is there hospice involved at all? Can they come in? (I know there are limits to when/if they can come in that do with prognosis)

Have you thought about looking into respite care? I know there are organizations around that are able to help out in getting someone in there to give you a break at least for a little bit now and again.

YOU need to get some time to take care of YOU!! Even if it's just a few hours a week to sit and read a book, walk in the park or at the mall, just see other people who aren't necessarily involved in this part of your life.

My heart aches for you, hun and I wish I was more help. Know I'm praying for you and your family and that I'm sure someone will be along soon to give you more ideas or more information on those I've put out.

xoxoxo

[Don M]

Wow Heather, you have it tough. I hope you can get hospice come in to help.

Don M

[lionking]

oh, thank you missy! i waited for a few hours for someone to reply and sned me something, anything.....i so desire to be strong and deignified & behave with grace with every move but i fall short of my own goals every day!

im afraid to call anyone in because then mom will think its over and not need to fight anymore.........do you know what i mean

[Ry]

Of course you aren't yourself..who would be? You are overwhelmed and no one is helping you -- who wouldn't be bitter and upset? You need to figure out a way to get some help. Go to your oldest sister and tell her you need some help figuring this all out. The both of you can develop a plan to get some assistance for your parents. If your other two siblings can't come and spend some time so you can leave, ask them to help you hire someone.

I am assuming that since your father is disabled that he is eligible for some type of home care, and your mom may be also. Has she applied for social security benefits?

Once you get some relief, apply for a job- you need to get out and you need the income. Good luck.

[Nick C]

Prayers going out to you and your family.

[RandyW]

If you have not done so yet, check out inspiration and survivor stories forums. They can help.

Next your parents are not only your parents but also your sisters, and brothers parents, and they should be mor econsiderate of that. IF ANYTHING HAPPENS, do not let them give you a guilt trip of anyt kind. You are doing the very best you can by yourself. They shoulld be helping when and how ever they can. Don't let anyone criticise the care you are giving your parents. I admir eyou for what you are doing and going through under the circumstances.

Next, try andf make some time for yourself. You ahve to take care of yourself in order to take care of others. You can not afford to get yourself sick too, and not be there for them physically and mentally. Again, You are doing great things for your parents, under the circumstances.

Sending PRayers for you, and your parents at this time. Let us know if and how we can help. That is what we do here. You will fing Knowledge, Compassion, understanding, Patience, and a lot of dry shoulders and clean ears to listen with here.

[Lassie]

Dear Heather, I think the other members all raise very good points.

I am very sorry for your situation and the emotional exhaustion as well as the physcial exhaustion you are going through.

You are strong, dignified and have grace already, calling in family and outside agencies to assist will not change that. You can always tell your Mom you are calling in folks to help as you are a bit tired and need further support temporarily until things improve.

Heather, the reality of the situation is that you have got to take care of You so you are alright to take care of your parents.

Please explore palliative care assistance, community services, talk to a social worker maybe from the hospital from where your Mom was discharged. If your Dad was a veteran, there might be something there, etc.

Your in my thoughts.

Val

[daggiesmom]

Please remember that this board is here for you anytime you wish to "let it out." You certainly have an awful lot on your plate - this is too much for one person to handle. As others have said, it would be very good to call in some help. Try thru the social work network where your parents go for medical assistance.

Yes, you probably are not yourself- you've been handed a monumental responsibility. I can only imagine how difficult this is for you. Any outside help would at least partially ease your burden.

Please let us know how you're doing.

Joanie ((()))

[Don Wood]

Heather, you ARE overwhelmed! Is there any way to get help? I am so sorry you have to go through so much as once. You need support from somewhere so you can take care of your own health. I have no quick fixes to suggest. Don

[recce101]

Heather:

Missy's response packs a lot of wisdom into just a few words. Respite is probably the most critical need of any long-term caregiver, and it is something you simply must have. I hope you can find a way to bring in some help without alarming/depressing your mom, certainly a valid concern, but I think not the overriding concern at this point. The lack of support and understanding from two of your siblings is tragic, and happens all too frequently -- it can be worse than having no siblings at all.

Fortunately you do have a supportive older sister, and as Ry suggested, the two of you should get together and work up a plan. Respite for family caregivers, including low-cost and no-cost assistance, is a hot topic around the country today, especially at the state and local government level. Every locale is supposed to have a designated "area agency on aging" established under the Older Americans Act, a federal law passed in 1965 and periodically amended/reauthorized. On Oahu the designated agency is the Elderly Affairs Division of the City & County of Honolulu. A few months ago that office made a presentation to the caregivers' support group that my wife co-founded in 1997 -- this link will give you an idea of the types of services provided by them and probably by a similar office near your home:

http://wvpress.com/care/2006.html#ead

There is help available, but for the overwhelmed caregiver it's often a matter of not knowing who to ask or even what to ask. My very best wishes and Aloha,

Ned

[TamHol]

First of all I am so sorry this has to be this way for you ......... it's all so much to take on and care for your parents. But to have to do it yourself and with stupid comments like "your not yourself" to kick you when your down.

I think you need help ...... get it, from where ever you can! Help to take care of you and give you some down time which is much needed, and help to physically care for your parents. In some communities or like our "Cancer center". There is volunteers (also have cancer) driving each other to and from appointments.

Blow up at these people, don't hold back with your list of examples, and get that aggrevation off your chest ... they are the cause of it ... they deserve the outburst from it.

Why in the heck should you hold back on issues of YOUR finances and this extreme exhaustion?

If you need immediate relief write it out in a note:

WHY I'M NOT MYSELF THESE DAYS ...

Lack of sleep from worry

Physically exhausted .... so on and so on!

Take that to a councelor and start talking .... but never let these people benefit from you holding your tongue. These are real things, not something chalked up as "I feel like ..." or "I wish ..." You need to tell them to start financing this and getting their hands dirty. Can you depend on them to take care of you and your kids when you finally crack from all this pressure?????? If your not telling them what is happening to you while you care for your parents. They don't know the true extent of the experience on you ..... if they do know everything! Then you owe them NOTHING and there is no need to keep any of it under your hat like it's a secret. They've chosen to deal with this and play stupid to your needs ....... they can deal with the reality of that choice.

Just some ideas on a quick fix, the truth is it won't last for very long! If the only way you can let anyone know the true extent of your exhaustion and mental state. Just simply show up at their door ........ when they open it, let it all go, right there at the doorway! Some don't think the strong and willing - break ......... if they see a true break from you, this will most likely never happen again.

You need to start looking for the help elsewhere if the rest of them won't volunter.

Tammy

[Snowflake]

Heather,

Odd, how someone else has stepped into your skin since you weren't using it...Maybe one of those pods from "Invasion of the Body Snatchers"?

Nope, you probably aren't your normal, happy-go-lucky, cover everyone else's butt, self. I think that's WONDERFUL. I've noticed that around my house, when I'm fed up with how I'm treated by some of the steps so I stop treating them as if they were my kids, too, I get that same response. My take? As long as you are getting what you want from me, I'm "wonderful" - once I decide I'm not going to keep giving, I'm "not myself". Actually, in both situations, I AM myself, just different facets.

YOU have a bit too much on your plate. YOU see that your siblings are stepping up to do much, at all. YOU have a front-row seat to all the scary stuff that comes along with disabled parents and lack of income and worrying about keeping it all together. YOU need to actively decide what you are going to worry about and what you are not going to waste another minute thinking about.

Treat as if you are the ONLY person your parents can depend on, and go from there. Dad has no legs, but he can sit with your mother and dial 9-1-1 in case of an emergency, correct? YOU need to get out of the house. You also need to make sure Dad finds some time away, too, either in a work shop or out with cronies (if he has some).

I think you should find a job and have Dad help with Mom's care. After all, you're taking care of the both of them and he seems able to get around...

If your college age child lives in the house, he/she can help with meals. An eight-year-old can help with household chores like laundry. Make your "team" out of the people that need you. If you all work together, things will run smoother.

Make sure there are rewards for all involved, as well. Time away, pizza night, whatever...

Your brother and sister? If they can't help you physically, ask for financial help. Use guilt, it's a wonderful weapon.

Talk to a doctor about getting an anti-anxiety medication and a sleep aid. You can't give to others if your tank is running on empty, make sure you refill it. Sleep is very important, stress is not a healthy companion. Find a way to see a counselor for coping strategies and someone to bounce ideas off (and someone to tell you you are not crazy).

Good luck!