psm, Im so sorry you are having to deal with all of this. we all can if ourselves to dealth. Iv had same thoughts. I should had brought Walt home instead of him going to a hospice facility. but he never ask to come home. which they forclose on our home In April and we moved to an apart. and he was here just 3 months and was put in the hospital. too weak for chemo and they said around 3 months. he got good care at hospice. I knew I could not do it by myself. but still even though my consious is clear . I feel so quilty not bringing him home. but Im bascially by myself . and I knew I couldnt handle his cares. and I didnt have the funds for round the clock help. your girl sounds just like Walt. always putting others ahead of her. she does not blame you at all. its the cancer that took her. always remember that. her stomach hurt . we all have ailmeants that dont mean anything. and Im sure thats just what she thought. at the time. your where the one with cancer at the time. theres really nothing I can say to make it better right now. shes knows you loved her. and its not your fault. remember that. love disney world, faye
Thanks Faye...I'll take that to heart.
As for Hospice, I can't say enough good about them.
The doctors make the mess, and Hospice cleans it up. By getting Walt out of the darned hospital, and into Hospice, you did the right thing. Some cases are such that Hospice can come into the home (as with Mary Kate) some are not, and have to go to a Hospice facility.
A Hospice place sure beats a hospital. Peace, quiet, dignity. If Hospice made the decision for Walt to be a Hospice inpatient, rather than a Home Hospice outpatient, that was the best option.
Don't should on yourself like I've been. Like you told me, You did the best you could, the best way you could.
Having a horrendous time with getting my mother into hospice care. They got info on her ssi and we provided them with her medical cards and coverage of which she had medicare and a secondary provider
it turns out its all about money. I guess we're just not the right kind of folks so to speak and they said that while they dont' refuse anyone (ha ha), my mother is blessed that she has us and we can pay her way. What? pay her what?
I'm a widow, holding on by my fingernails and rubbing two nickels together to bleed a quarter. My sister hasn't worked in 8 years and needs to find a job (like that is gonna happen anytime soon in this economy). The limited resources we have is needed for the payment of property tax and food and ulilities for sister and we have a home-equity loan tied to the money in the trust.
The trust clearly states that when grantor (mother) dies or becomes incompetent, incapable or institutionalize, the money is to be dispensed share and share alike between her two daughters (me and my sister) It doesn't require that we give Hospice room and board costs that will amount to over 7k per month.
They released Mom technically from the hospital, so unless they take her and are willing to settle for the insurance and the ssi, they'll have to all think of another place that will take her for that money.
Last edited by caringsister54; 01-27-2009 at 01:39 PM.
this not right caring. Walt was in a hospice facility for almost 6 weeks. he was on the residential floor(which means 6 months or less) I pd. out of pocket $1,680 per month. then he was move on the acute for which medical paid all. check into this more thoroughly and if you cant get any answers. I will call my hospice director here. they can not turn anyone down about money. i had the money which if he lived longer. it could had taken a hunk of money I sold his gun collections and my antiques etc. take care of yourself in the mean time though. love faye disney world
I know its not right. The hospice person said for me to tell Sister that the fun and games are over. I said "what the hell are you saying? You think that the life my Sister has had was fun and games, are you kidding!"
They told Sister that while they wouldn't necessarily take the money, they just want to see the bank statements. The lawyer said 'no, no, no" that money is not your mother's anymore, it is yours to do with what you want.
And right now we want Sister to get her life together and be able to pay the utility, medical, and household bills that are coming due each month. While sister can go to bed when the sun goes down and get up with the sun ups,
cooking uses gas, there's food, there's water, etc. I know as soon as they see the account they're going to take it. They told us that Medicare pays for mom's medical care but they have to charge us room and board at $280. a day!
If they don't find a nursing home to move mother to, we'll have no recourse but to bring her home and watch her waste away here. But even if we have to use medical insurance to pay for Bayaya nursing for a few hours a day, and then the hospice person comes for a few hours, Sister may be able to do some and then I'll come home from work to do some. My mother's 82 year old Sister said maybe she'd come on the weekends and help spell us
The unfortunate thing is that I know damn well, Sister wouldn't be able to deal with the fact that mother loses her ability to swallow and chew and it would be heart-wrenching for her to be right there in the mix.
We need a facility for Mom. Sister needs to get a job. She needs to know she can sleep soundly at night and not listen for each breath.
The stuff that hospice is doing for us stinks. I still say its all about money. Although they say they are federally supported. I think they feel that you are under stress, overwhelmed and while they may have people destitute that they take, others they make their expenses off the back of and they're going to now have to deal with our Mother's lawyer, because there's nothing else we can give them without jepardizing my Sister's well being and keeping the roof over our head for at least a little longer. I've already shared with Sister that no matter how much money she makes when she goes back to work, she'll never make enough to put in towards the property tax and she's going to have to start coming to grip that we may have to sell the house in the future
i just cant understand your hospice facility there. here it was so compassiante people. as i said I had $1680 a month by selling things. but if he had lived longer on the resisidentil floor. the money would gave out. your mothers sickness can go on forever. i just thought there was a lady on Walts floor that had your mothers sickness. but she had 2 sons that where doctors so they could afford it. no insurance would paid for room and board it was out of pocket. please report who ever said the fun and games are over. she shound never said that to you. here, hospice has a good reputation for being caring and understanding. they treated my family with love and compassinate. this is so wroing for sister and you. i will keep your family in my prayers. take care love faye
hey caring sister I see you are on line. Im learning more and more with this post. with your help. wish we could talk directly to each other. I feel like I know you. but that cant happen. you are going through so much with mom and sister. dont know much about az. but reading different ones here. it sounds tough. i deal with lung cancer and alot of things. you have to take care of yourself. so your can take care of others. why Im I telling you this. you know it. we just cant take our own advice. please , please get more answers from hospice. something isnt right here. faye
Disney and Caring Sister
I feel the same way you two have really helped me in knowing that I am not alone in the feelings I am having. I think I mentioned before that friday I made a major screw up at work. My supervisor was going to have to place corrective action in my personal file. Today she coem and told me to go to HR. They are not buting anything in my file and I am not getting wrote up. But the lady in HR (who was very good friends with my husband) thinks I returned to work to early with the kind of responsiblites I have at work. So they are releiving me of some of them and I had mentioned that I had a drs appointment tomorrow, She wants me to see if the dr will state that it would be better for me to do part time or maybe have more time off. I feel better already I will keep you all informed on how things go tommorrow,
well as far as the benefits go I don't have to carry any benefits through my job. I have said earilier that my husband took care of things. He was retired military so I am able to keep his insurnace through the army. But i understand about not sitting at home an being depressed all the time. there is plenty I can do. I still have alot of things to take care of. I am still in the process of getting things done to settle the will. There is so much that has to be done.
good morning showee, I think my hubby left me well. but right now. we owe so much on late debts. forclose on house. dont know if I will when they ever said the house I will owe the difference in what we owed on it and what it is sold for. borrowed on many times. but the time right decision . we got in debt because of cancer not because we tired to live beyond our means. as people saids. we had excellent credit. and we had to live offf credit cards to have the necessities. he left a great sum of life insurance. got a lawyer now. walt would never left me with all the debts on purpose. its so sad that Iv got his insurance and when I turn 60. I will get his social secrutiy. soooooooooooooooooooooo sad. people with no sense. makes comments he left you well. hey he had to die. bull **** on that. Iv had mercedes, jaguars and travel around. went lacking on nothing. never work. just spent his money. hahaha professional civil engineer. own own company . busy got down and yet he didnt give up. he went to great job. and then cancer. so mad that this horrible diseanse to my only love away from me. and now Iv had to grow up at 59. he would be proud of me though. taking care of alot of things . lived in a beautiful 4,000 square foot. with swimming pool and everything. again cancer took that. but Iv got a nice apartmeant. no yard work. hahah. take care adn thank you for listening to me. try to have a good day. and work. Im looking for a job. and at my age and the way the world is. dont know. got my foot in the door with chamber of commerce here. keep your fingers cross for me. love disney world, faye
Thank God we never had to turn to credit cards to live. I am so sorry to hear that you all had to. I can't imagine what would happen if I had to sell our house. My husband also had cancer, he had non-hogkins lymphoma that first appeared 2 years ago. He went through 6 rounds of chemo but was in remission after the 2nd treatment. But the doctors felt like it would be a good idea to do the whole course of treatment. He did really good during all this. He would leave work and go get his treatment and come back to work. People could not believe how well he handled it. Even the doctors were amazed. I think that is why it is so hard for me now. Because now I am wondering if he really felt that well or if he was putting uop a front. Then in May 2008 I noticed a couple of spots on his back and called the cancer center that he was going to and told them about them. They had me tell him to come in (This was about a week before his schduled appointment for his regular check-up) They went ahead with the cat-scan and found that he had a lymph node under his left arm. But nothing else showed up (He had fell at work and broke his left shoulder and had to have surgery on it) The doctors felt that the swollen lymph node may be due to the surgery he had on his shoulder. The spots on his back they did go ahead and did a biopsy and found out that it was NHL back. So that told them the lymph node was not from the surgery. By the end of May first of June he started the chemo treatments they call consolidation, to get him ready for a bone marrow transplant. From that time until August we seen all kind of doctors to check his heart ,kidneys, and lungs. To make sure he was healthy enough to go through the BMT. Everything checked out. He went on short term disability from work (3 months) The doctors had told us that when he had his BMT he would be in hospital for at least 3 weeks.He did really well , no complications from it at all. Very little side effects, I think the worst thing that happen to him is his mouth got sore. Left the hospital 3 weeks to the day that he had his transplant. Came home wanted to work in his garden, go to our place at the lake , he wanted things to get back to normal. He was doing very well. We went to his weekly appointments and the doctors were still talking about how well he was doing. Then I guess it was around the end of October there was a change, it was like he started having all the side effects they said he would have while receiving the chemo.he was tired sick at his stomach and just really didnt feel well. Even told me he thought he was going down hill. But when we would go to the doctor he tell them he was doing fine. I day I spoke up and told the doctor what he had told me. Some of his test were coming back a little off. For one his platlet count had started droping when it should have been going up. So they started thinking his cancer was back and began running test. Before any of the test came back he ended up in the hospital. November 12th I called 911 and when I left here that morning the thought of coming home without him never crossed my mind. He was there 4 and a half weeks . It took them a few days to figure out that it was his lungs. They called is ARDS, it was due to the chemo and bone marrow transplant. His lungs were damaged from the high doses of chemo. Now I wonder did we do 1 to many treatments or did we wait 1 day to long to go to the doctor. Questions that I will never have the answers to and probply better off not having.I miss him with all my heart... I did go to see my doctor yesterday and he feels I wnet back to work to early. He also knew my husband and knows what I went through with him the since May. So he took me off work and will fill the paperwork out for me to draw my short term. He said he wanted me to go to the support group that I signed up for.( starts next week) and then he wants to see me after I have been to a couple of times to see if I think it iw helping me. We will see. I just wish I could go back in time and ask a few more questions before he had all that chemo. I am sure we all wish the same thing. I hope everything works out for you. My husband made his brother the excutor of his will. I think that was a good idea because that takes alot off of me. Everything goes to me but its his job to make sure everything gets taken care of. He has been great. Even when my husband was in the hospital this last time he was there everyday to keep me company and ask questions that I wasn't able to ask. I guess we will learn to live without these wonderful men but how and when I don't know.
Take care and I hope everything works out for you. Susan
. when walt got sick I went to bankruptciy lawyer and he told us to buy time. we had money but between credit cards and spending just for necessities and selling everything. trying to settle the estate and have these debts remove without filing right now. still so complicated to me. just letting my lawyer quide me. hope you are feeling better. I talked to hospice yesterday about how they are telling you the fun and games are over and she said the same thing. go to her supervisor oh higher. dont let anyone talk to you that way anymore.