Guest kathleen Posted August 7, 2006 Share Posted August 7, 2006 My Mom is declining but everyone thinks it worse than I do........am I crazy? She still knows me, she can still walk with help. She still smiles. My sister and brother want to put her in Hospice House. My father and I are caring for Mom. I work full time but spend nights with them and I get up at night with her everynight - I am glad to do so. We have volunteers and Hospice nurses coming already. Dad is not ready for Mom to go to Hospice house. We do not know if insurance will pay anything or not. Medicare pays a small portion...blah blah blah. My brother and sister both live far away and are much older than I (18 & 15 years older). Dad and I are her main caregivers. I made a promise to Mom and Dad when Mom was diagnosed that I would do everything I could to get her through this to the end. They are harping on me that I shouldn't be staying with my folks. That we should let Hospice take care of her. I want to take care of her as long as I can. They say she won't eat. She eats for me. I would rather get up at night with her than not have her here. Why can't they understand. Now it seems that if I don't jump on the band wagon to send her to Hospice House that they are afraid Dad will die and they don't want that on THEIR conscience. I am doing what Dad wants. What more can I do? My sister thinks it would be degrading to Mom to have a hospital bed at home and to die there. Am I wrong in disagreeing with her?????? I know my Mom would want to spend her last days at home I am heartbroken! My best friend is dying and my siblings want to take her from me and Dad's care. I can't bear it. I know Hospice is very good. But I want her with us. I am perfectly capable at this time of assisting her, feeding her, bathing her. It is my final gift to her. If it gets to be more than we can handle then I will be ok with her going - if we are not able to care well enough for her. My siblings do come home to help, but my sister makes it well known what a burden it is for her. She doesn't work, has a cleaning lady and golfs everyday! Get real! Now she is the one pushing for this. Does anyone have any comments or advice? I told my siblings that I promised this to Mom and I will not justify my being there to them one more time. I know I probably didn't make a lick of sense, but thanks for letting me write. k Quote Link to comment Share on other sites More sharing options...
RandyW Posted August 7, 2006 Share Posted August 7, 2006 My opinion and you will get more today. If Mom is able to do all that why should Hospice be called? Is your mom seeing an Onc She is happy with? Are you and Dad primary Caregivers? If your mom can make her own decisions Let her make them. Do you have Power of attorney, Living Will and such lined up in case? If you and Dad are primary caregivers and Mom is of sound enough mind it should be her decision on what happens next in this stage. There are Many factors involved here. In my mind the decision making order shaould be Mom, Dad, THen yourself and Then Brother and sister. THey do not take care of your mom like you and your dad are doing. They do not know that much about her medical background as you and Dad Do. they should respect your Moms Decision and Her teams Decision as to what happens in the next stage of treatment Options. Hope this helps. Write anytime It helps a lot I believe. Sending PRayers. Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted August 7, 2006 Share Posted August 7, 2006 Kathleen, It is perfectly fine for you to want to take care of Mom as you want to. I wouldn't let their opinion shape your promise to Mom. As long as you can take care of her, fine. If they want to help, fine, if not, well that's up to them. This is just such a difficult time and complicating it with caregiving issues, I think, wastes the time you have left. Just continue to be a great daughter. In the end you'll have no regrets. Joanie ((())) Quote Link to comment Share on other sites More sharing options...
Guest kathleen Posted August 7, 2006 Share Posted August 7, 2006 I should clarify that Mom really is not in any shape to make her own decisions. But she knows us and that is what counts. I am able to help her in the bathroom and so is Dad. She does need help dressing/bathing etc. She is 85 and the WBR did rob her of her short term memory. But she is with us and I can hold her hand and she feeds herself still. We just have to coax her to eat. There are no treatment options at this point. No more radiation and she wouldn't be strong enough for that or chemo anyway. We just want to make her comfortable and get her thru this. Quote Link to comment Share on other sites More sharing options...
kamataca Posted August 7, 2006 Share Posted August 7, 2006 My opinion (that isn't worth a hill of beans) is that your siblings have distance-guilt. They can't / won't be there, so they want to call the shots from where they are. It gives them some feeling of control, like they are helping. Is you mom in any danger, staying with you and your dad? Are you or your dad in any danger? Burnout can be a very real thing. If you, your mom, and your dad are OK, then I say do what you believe is best. There may come a time when you CAN'T do it all, and I hope you will ask for help, if you need it. You are obviously a very loving daughter. Your mom and dad are both so lucky to have you there for your support and love. Hang in there, honey! Let us know how you are doing, and I will keep you all in my prayres. Kelly Quote Link to comment Share on other sites More sharing options...
Don M Posted August 7, 2006 Share Posted August 7, 2006 Kathleen: If you already have help coming in, home hospice, that should be plenty. I know for sure I would want to spend my final days in my own home with home hospice and my primary cargivers at hand. If I were you, I would accept any help your siblings want to offer, but just tune them out when they push to move your mom to a hospice house. The key thing, as you said, is that you are doing what your dad wants. Don M Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted August 7, 2006 Share Posted August 7, 2006 Kathleen I agree very much with what Kelly said.. Distance guilt. It certainly sounds as if that may well be the problem. You are a wonderful daughter to care so selflessly for your mom AND your dad as well. My feeling is, and of course this is only my opinion, keep on doing what you are doing as long as you feel comfortable with it. Please remember to take some time for yourself as well. You have to take care of YOU along the way. My prayers are with you and your family, Chris Quote Link to comment Share on other sites More sharing options...
EastCoastLadi Posted August 7, 2006 Share Posted August 7, 2006 Kathleen, You and your dad are your mothers primary caregivers NOT your brother and sister. You both seem to have the situation under control, do not rock the boat!!! I wonder if they wanted to put your mom in hospice and had to contribute the $ to do so, would they?....I hate what cancer can do to families! All I can tell you is that you are doing the right thing, don't give into the selfish tactics of your older siblings!!! And they are probably PO'ed because they have no control in the matter. They are not there like you have and really don't have a real clue as to how your mom really is!!! Don't give up the fight. your bro. and sis have no legal rights, complain as they will, they can't do a damn thing about it...... Stay strong! Grace Quote Link to comment Share on other sites More sharing options...
Geri Posted August 7, 2006 Share Posted August 7, 2006 My votes with Kelly. My immediate reaction was that they were feeling guilty about not being there - be that through choice or circumstance - as long as you and Dad can manage and want to take care of Mom I'd say do it. You have help right now, can you more if you need it? As this so important to your Dad, and I think his wishes outweigh any of his children's, keep Mom at home as long as you can. Take care of yourself too. Geri Quote Link to comment Share on other sites More sharing options...
Connie B Posted August 7, 2006 Share Posted August 7, 2006 Maybe home hospice can clear the air for your siblings. If Home Hospice feels everything is going well...... then..........let them pass the word on to your brother and sister. They (hospice) sometimes know a nice way of saying, "butt out"! IMHO, you need to do what YOU need to do. If you feel your doing a good job and things are working out well, then follow your heart. My oldest sister (11 years older then I) Didn't want the responsibility of taking care of my mom, so she stopped by to visit (at MY house where MY MOM lived out her last days) every now and then(every other week) to do her thing and be the dutiful daughter. She also would offer her two or twenty two cents worth of Do's and Don'ts everytime she did drop by. I just let it roll off my shoulders. I did what my mom wanted me to do and that's all that mattered to me and my mom! I know it's very frustrating when others SEEM to think they know whats best. But I can assure you they wouldn't trade places with you for one week. Hang in there, and follow your heart and fofill your wishes to your mom and dad. You sound like you have things under control. It's not easy, but I know it can be done. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted August 7, 2006 Share Posted August 7, 2006 Sounds to me like you and your dad have things well in hand. Stay the course. Don Quote Link to comment Share on other sites More sharing options...
Suzie Q Posted August 7, 2006 Share Posted August 7, 2006 The point of having Hospice is so that the patient can remain in the home with the comfort of familiar surroundings and dear ones. It does require, however, much care be given by the family at home, with the assistance of the Hospice team. It is far better for your Mom to be at home. The hospital bed is a non-issue. It is far better for your dad that Mom be at home if he can safely take care of her during the day. Think how much it would wear both of you out to be at the facility, going back and forth to your respective homes? At least in the house, you both have access to all the comforts of home. Sooner of later in the dying process, she will lose her desire to take nourishment. This is normal, and does NOT mean she should be taken to a facility. Sounds like she's content. The primary caregivers are content. So why change things? As a side note, why is Medicare not paying for all Hospice bills? At 84, your mother certainly should be covered. We never got one bill from Hospice; Medicare covered all of it and my mom was just 65. You are doing a great service to your parents. What a beautiful gift YOU are! ~Karen Quote Link to comment Share on other sites More sharing options...
sharyn Posted August 7, 2006 Share Posted August 7, 2006 Dear Kathleen, Guilt is a terrible, terrible thing.... and you are the only child out of your family who should not HAVE ANY GUILT at all... Your siblings sound like selfish individuals who are only looking to clear their own conscience for thier lack of being there for your Mom and Dad. You keep doing what your doing and as long as you feel you are up to continuing, YOU DO SO. I am praying that God gives you the courage and strength to keep being strong for your Mom and Dad... what a gift you are to the both of them. Much Love, Sharon Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted August 7, 2006 Share Posted August 7, 2006 Kathleen, You are so lucky to have your dad suppotive of keeping your mom at home. It is alot of work, but so worth it. I agree that you should just keep up what you're doing and you will have no regrets. Many blessings to you and your parents. XOXO Lori Quote Link to comment Share on other sites More sharing options...
Treebywater Posted August 7, 2006 Share Posted August 7, 2006 You've gotten fantastic advice here. I will only add this: When hospice is involved I think it really comes down to the wishes of the patient involved. When that person can no longer clearly specify their wishes then you defer to the needs of the spouse. At least I tried to make that my rule of thumb. If you are there caring for your Mom I would guess you know her well and you have a pretty good gut-feeling about what she would want (and... it sounds like that is to be at home for as long as possible). If you and your Dad are able to do the care that is required then by all means keep her home. If it were ME, I would want the familiar surroundings of my home and family to comfort me while I took that very unfamiliar journey. You are doing A GREAT JOB of caring for your Mom and advocating for what is best for her and your Dad. Keep keeping on. And know that you can always, always come here for support. Quote Link to comment Share on other sites More sharing options...
Linda661 Posted August 7, 2006 Share Posted August 7, 2006 Kathleen: No, you're not crazy -- if you truly see that the situation is working well, that you and your Dad are doing just fine in the home caregiving role, and your mom has all her needs being met in the situation.....there's no problem. You and your dad are the ones immersed in the situation and really know best what decisions need to be made, not the long-distance relatives. I agree with Connie on the thought that maybe Hospice can help with a gentle way of telling the sibs to butt out so that their guilt doesn't add to the emotional strain you and your dad are already under. Both of you need your energy for your mom and maintaining yourselves through this, not sidetracked on such things that the relatives are throwing at you. All the best to you, Linda Quote Link to comment Share on other sites More sharing options...
adela Posted August 7, 2006 Share Posted August 7, 2006 I know it's very frustrating when others SEEM to think they know whats best. But I can assure you they wouldn't trade places with you for one week. That is very true what Connie B wrote. I too had others seem to know what was best for my husband. Stepson accused me and my son of not being a professional caregiver. That my husband was depressed, not eating and not clean. This son would spend a hour at the most every two weeks with his dying father. I was there when his father was afaird, there when he was choking on water, there to bathe him, there to hold his hand. The son called everyone he could and told him his father needed a professional caregiver. My husband only wanted me and his stepson to take care of him. My husband couldn't talk, couldn't eat, had difficulty standing. So you do what you think your mother wants, you and your father have been there with her. The others are going to react very ugly to you. It will be hard to take and you will have much difficulty with it. But remember you are there for both of your parents. This is a difficult time for you and your parents. A book that helped me tremendously was "Final Gifts" it gave me the courage to understand what my husband wanted. Please try to rest and not to think of the siblings at the moment. Hospice could help you calm them down. Take care of yourself as much as you can. Adela Quote Link to comment Share on other sites More sharing options...
ma's kid Posted August 7, 2006 Share Posted August 7, 2006 Kathleen, I agree 1000% with what Kelly wrote! Bottom line, continue as you are and when and if you need help...ask. Your mom and dad are very lucky to have you for a daughter. Many prayers, Libby Quote Link to comment Share on other sites More sharing options...
jduenges Posted August 8, 2006 Share Posted August 8, 2006 It sounds to me that you are a very loving daughter who wants to fulfill the wishes of her Mom and Dad. If your Mom's wishes are to stay home and your Dad and you are able to care for her then I see no reason why your siblings should object. Hang in there, you are doing the right thing. Jackie Quote Link to comment Share on other sites More sharing options...
kdgmom6 Posted August 8, 2006 Share Posted August 8, 2006 I'm so happy that I came to the board tonight. I swear to God that you and I are twins. I am going through the exact same thing as you are right now. I would really like to talk to you. I think that we would be great support for each other. I don't think that I can post my email in this reply but if you check my profile you can find it there. Please send me an email and we can talk. Julie Quote Link to comment Share on other sites More sharing options...
Chanwit Posted August 8, 2006 Share Posted August 8, 2006 Home! And this is my room -- and you're all here! And I'm not going to leave here ever, ever again, because I love you all! And -- Oh, [Kathleen,] there's no place like home! Take care of yourselves - peacefully - Chuck Quote Link to comment Share on other sites More sharing options...
knw55 Posted August 8, 2006 Share Posted August 8, 2006 Stand behind your promise to your mom and dad and forget what your siblings think. You are doing a wonderful thing and for that you should be commended. God Bless you and your family. Karen Quote Link to comment Share on other sites More sharing options...
Guest kathleen Posted August 8, 2006 Share Posted August 8, 2006 Hi everyone, thank you for your comments and advice. I spoke with Hospice and they said my sister needs to put the funeral clothes away for awhile. Mom at this point wouldn't even qualify for Hospice House because she isn't bad enough! You know what gets me???? My sister actually sounded disapointed in this news. Ever since Mom's diagnosis she has been trying to bury Mom. Don't get me wrong, she comes home and helps every month or so, but even a neighbor of ours commented that even though she helps, she makes sure everyone is well aware of what a burden it has been for her. I just don't understand why my sister has to get so histerical over every little thing. I feel that Mom will die soon enough we sure don't have to hurry it any. When God is ready he'll take care of it for us. In the meantime my philosophy is not to log every time Mom has a mishap or maybe a bad day. I figure this is all part of it and we just go with it and make her comfortable and treat her with respect like we would if she wasn't terminal. I am sooooooooo angry when my sister blows every little thing out of proportion. She comes home for a week and you would think that she has done more than anyone of us in the last year in total! Maybe THAT is her distance guilt. But I am sick and tired of it. This is not about her. Its about our Mom who is the most selfless person on earth. She deserves to die at home when she is good and ready. Not next week! My sister said Mom was shutting down. She has read the hospice booklets and knows this. I asked the Hospice nurse and she said, actually your Mom is doing remarkably well and that she didn't feel at all Mom was shutting down and preparing to die yet. If I tell my sister how well Mom ate for me, she will say "well she doesn't eat when I'm there". Tough cookies! the point is she ate well! How can I politely tell her to bugger off?? tee hee. Just kidding, but boy it feels good to vent. I agree, this is my Dad's decision. I am trying to help as much as I can and to arrange help for him when I am working. Everyone says let her come home and help and don't take what she says to heart. But geez, it is depressing enough knowing in time my Mom will pass - I don't need the added downer of my sister practically coffin shopping! How do you handle siblings like this? Thanks for letting me vent again - phew! k Quote Link to comment Share on other sites More sharing options...
Maryanne Posted August 8, 2006 Share Posted August 8, 2006 Of course go for it!! Think of the guilt if you don't. You do what your gut tells you and even your dad feels the same way. If the time ever comes that you cannot handle the situation then hospice would be the way. But I would also prefer hospice at the home not a facility. That would be her dying wish. You are a wonderful daughter and you will never have any quilt for not contributing enough. Now your siblings that another story and that would be on them and not you. I am so sorry that you have to deal with your siblings a well as your mom. You do not need that added stress. You are doing what she would want.... period!! Bless you and we are always here for you to vent. Keep us posted. Maryanne Quote Link to comment Share on other sites More sharing options...
TamHol Posted August 9, 2006 Share Posted August 9, 2006 Kathleen you are doing an excellent job and you know it....that is what is most important at the end of the day. Your sister will have to deal with her issues on her own when she's looking for support on a dark day. You want to tell her to bugger off, use anyone of these .... Everyone has their limits to what they can endure and they are making it well known where theirs are. Remind them this is your choice and for your own peace of mind when she is gone. Make it well known that you know your own limits and will adjust the arrangement when the time comes. If anything I think your sister is jealous that she sees her sister doing alot more emotionally than she can. That old saying of "they'll only tease you because their jealous and realize their shortcomings." She obviously cannot deal with any of the prolonged time your Mom has and works best with "out of sight...out of mind". Which is fine for her, she can have it.....but don't whine later or tell you your doing things wrong. I hear ya ....... I got me one just like her! Tammy Quote Link to comment Share on other sites More sharing options...
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