Outrider1 Posted June 13, 2009 Share Posted June 13, 2009 I'm an not sure if this is where to put this, but moderators please move it if necessary. I don't know if any of you remember me, but But first a computer crash and then I was in the hospital and have now managed to reactivate my account so I can talk to you all. I hope everyone got on the bus. I am desperate, and need advice. I don't know where to turn. I got some news that I may have mets to the brain which we have a couplw of treatment options for. Why I am despereate, is not that, IT's I feel and have been working on end of life (ie' final arrangements) for a while. Like many people, I put it off and now find myself scrambling. Where do you turn when you have nothing to make those arrangements with. I am lucky, I have a plot but that is all. My 17 year old daughter is so worried and asking her friends for help. I don't know where to turn. I still don't even know if I can get hospice when the time comes, since I am still waiting out the 24 months to qualifiy for medicare. You guys have been such a font of information and solace for so many, is there any information that you can give me to help ease the worry for me an my daughter? Any information would be helpful and greatly appreciated. Thank you so much Dawn Quote Link to comment Share on other sites More sharing options...
Patti B Posted June 13, 2009 Share Posted June 13, 2009 ((((((Dawn)))))) My heart breaks as I read your post. I too have a teenaged son, he will be 17 next month and I know how heavily all this weighs upon him. He has done some counseling and it has helped - don't know if your daughter would be receptive to that or not. I hope that your decision to make end of life decisions is not because of the brain met finding - those can be dealt with quite successfully. But - we just had a discussion on one of the other forums about making out wills and such. I had to admit, until I got cancer, my husband and I shamefully acted like we were indestructible and had never done anything to protect our child if we had both died. So we did do that and that does make me feel so much better. I still need to do the plot thing only because I want to be buried and my husband wants me cremated and not buried - figure I need to make sure those wishes are carried out. As far as hospice goes, others will come along soon whose loved ones have needed hospice and hopefully can give you some good information on that. I am so glad you are back on the board and please don't hesitate to ask any questions - noone else "gets it" the way we do. Please also feel free to PM me if you just want to talk to someone else in your shoes. Keep us posted and you will be in my prayers. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 13, 2009 Share Posted June 13, 2009 Dawn, I do remember you. Welcome back. Please don't think the brain mets mean you are suddenly going to die. Have you still been in treatment? How do you look? How do you feel? I'm told those things are the most important. If you are waiting the 24 months out for medicare, you are probably on disability. You don't mention a spouse or your daughter's father, but if you are her sole support, your income probably doesn't allow for saving. I don't hear anything in your post that convinces me you are going to die anytime soon but if you want to set your mind to rest, information is your best friend. I am sure you would qualify for hospice but if in doubt, call them and ask what the requirements are. I don't know where you are in that 24-mos wait, but in the meantime is your hospital helping you? Have you talked to a patient representative there? I'm told all hospitals have them. Check and see whether and how long your daughter can receive social security benefits should the worst happen. Talk to her about family or friends she might live with for a limited time. I know it's tough making arrangements when there are limited or no funds but reach out and seek information. Your daughter needs reassurance and it might not be as bleak as it seems. Keep posting. We care and want to help however we can. Judy in Key West Quote Link to comment Share on other sites More sharing options...
fillise Posted June 13, 2009 Share Posted June 13, 2009 Dawn, I am sorry you are confronted with so many worries and fears about final arrangements. I'm sure some folks can give you some help and maybe Texas folks can point you to more specific resources. When we investigated final arrangements for my parents we discovered that cremation societies offer more reasonable rates for services than funeral homes. I don't know how you feel about cremation, but I wanted to offer this suggestion if finances are a concern. Others may have some suggestions for financial resources to help pay for these arragements. As for hospice--what kind of insurance do you have? Most private insurance or medicaid should cover hospice services. If not check to see if there are non-profit hospice services in your area--they may have programs to help if you need it. I wish I could give you more specific advice, but I'm sure others on this board who have faced silimar issues can help. Susan Quote Link to comment Share on other sites More sharing options...
SandraL Posted June 13, 2009 Share Posted June 13, 2009 Hi Dawn. I absolutely remember you. I am sorry to read your update but like others have said, you are not going anywhere yet, treatment for brain mets can be quite effective. I don't have any specific advice for you re hospice or making your final arrangements. But you will seek out information and look after all of that. I do get what you are going through with your daughter. I have 2 kids, aged 13 and 14 and they are the toughest part of all of this. It is really not fair for them. So I am sending both you and your daughter hugs and prayers. Get the information you need, make your final arrangements, and then you can enjoy every day you have left with the peace of mind you deserve. Sandra Quote Link to comment Share on other sites More sharing options...
jstdzy Posted June 14, 2009 Share Posted June 14, 2009 Dawn, Don't know if this will help, but my Mom got life insurance through AARP. It cost $130 a month for $15,000, you could get one for $10,000 that is less per month. The kicker was Mom had to stay alive for 2 years, she made it a year. We didn't qualify for the $15,000, but we did receive a full refund for what she paid in plus 25%. I received a check within 10 days. It really helped a lot. Don't know if you qualify or have the funds. That's all I can come up with, except a few prayers! Dana Quote Link to comment Share on other sites More sharing options...
Outrider1 Posted June 15, 2009 Author Share Posted June 15, 2009 Thank you all so much for you encouragement. I have found out that I can donate my body and it won't cost anything to the family. And the more I think about it and the way this disease works the more the makes such sense to me. I have been looking for a way to give back, to help, to do something to stop this, so may be here is the way. Not I have to contact the funeral home where plot is and found out how to work with that. Since I am a vet, I am entitled to the honors , the flag and the marker, so I have to go see a bout that. I am sorry if this is morbid, but since the new problem in my head started, I have been frantic. So I finally told my self today."get a hold of yourself!!! You feel physically bad as you were dehydrated and dizziy and not keeping and this down so you feel week! I have started pushing my self to eat, The Big thing was getting off the couch and doing whatever, a little wash, sweep the floor. STop worrying if the dryer is gonna stop making the funny noise and gonna quit. If you run out of groceries, you can go to the food pantry, work with the electric company and call them, I f they won't work wtih you call someone else, but don't quit. If it does there is nothing I can do about it, but figure another way. I was not given a gaurantee, so I have to work with what I have and do the best I can. And I added on more little helper. An Ativan. That little anti=anxiety pill has helped more that you can imagine mainly by stopping my heart pounding in my chest. I know I am rambling, but I wanted to let you all know how much you have helped and helped my get out of that frantic state where I would not/could not even think. I am still running on a little panic but nowhere near what it was. I have a plan and that is starting to help. I will check out the AARP all though I really don't have the funds for it and I have seen some cancer questions asked,but I think I Will persue the the donation route as it just feels like the right thing for me. Bless you all. I will try to be in more reqularly as I can. And please excuse all the typos, the vertigo caused by this new stuff makes it sometimes a real comedy of errors to gets words to paper. Oh and before I forget, I will be doing several more rounds of radiation to the head to hopefully fix the problems which they have atate is more charactistic of MS instead of Cancer. and After doing a couple of fine tuning does of my first chemo cocktail as I am 7 months out from the first time. with very little activity and very spotty in activity in the back. Bless you all, you made me cry and I so needed that, and then you helped me pull myself up by the boot straps and start thinking. Dawn PS Anymore idears. keep em coming please PSS: I am widowed navy vet my 24y/ old daughter lives at home, helping me with appointments and keeping track of meds and what needs to be done and around the house, Although she is looking for work she is a little tied down. Her 26 year old boy friend has been looking for work since NOV when he got let of. They both spend hours on the internet filling out applictions, Last night he did over 30. When there is no gas they walk all over town looking. The real kicker. My 17 y/o found herself a small summer job at Sonic and walks to work. She just started. I AM SO PROUD OF HER!!!!! I am so proud of them all they are trying so hard. UH!OH! getting weepy. Again thank you sooooo MUCH!!!!! DAWN Quote Link to comment Share on other sites More sharing options...
Outrider1 Posted June 15, 2009 Author Share Posted June 15, 2009 Susan I am still in the 24 month wait after starting disability, to receive medicare. But I will give then a call and see what they have and then also check with the social workers with in the VA medical system. Thank you for the advice Dawn Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 15, 2009 Share Posted June 15, 2009 Dawn, I was weepy reading your update post. You go girl. That's what it's often all about, getting off the couch and doing something, anything positive. And that little mother's helper Ativan can often do the trick so you can get up. Hang in there and keep posting when you can. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Patti B Posted June 15, 2009 Share Posted June 15, 2009 Dawn- Glad to hear you got off the couch and are doing things. Sometimes that getting up is 3/4 of the battle - I know - been there, done that!!!! Keep posting and let us know how you are doing!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Outrider1 Posted June 15, 2009 Author Share Posted June 15, 2009 Yes, I am doing better. I am making phone calls and being proactive to try to get things done. I think once I have some of that lined out a little better. things will ease up. Right now I have the breathing room I need. Your encouragement help so much. Also is there a place that we can post information on making final plans , and donations, etc., here on the site, that will allow us to post links and things to help others who may have been struggling as I have been. I know it might be a big help for others. Thanks guys! You are the bestest!!! Dawn Quote Link to comment Share on other sites More sharing options...
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