Mom will be passing soon. Numbness/depression setting in.
Hi,
My mom just had hospice come yesterday and she signed her DNR orders and medical power of attny to me. It was hard. I felt so bad for her. She's weak, doesn't have long to go and here she was signing her life to die and give me the power to make a decision. I'm having such mixed feelings but mostly complete disgust with my dad. He has never treated her right/with respect or love. Always abused her and now that she's dying he's continuing to be a jerk. The hospice came yesterday and gave her a whole new list of meds and oxygen. As soon as I left and came back with the script--he won't let her use the oxygen, she doesn't "need" the meds. WTF? I lost it and just screamed at him that she's dying and he better wake up that she's dying. He won't accept it and thinks 'fighting it" by refusing everything will mean all is ok. All he does is yell at her that she won't help herself. Hello idiot--she has ascites, cardiac congestion, weak, can't walk, kidneys have pretty much failed. WTF? Just so mad at him. She can't have a moment's peace with him. And he's leaving everything up to me. I don't mind but my god, you're married to her and you can't even come around to help her? When she fell in Feb (her legs gave out; liver failure happening) he didn't even help her get up. The customers in the store were yelling at him to help her.
I've had a rocky relationship with her. The abuse from him (and probably undiagnosed issues for her) led her to be combative, hurtful, and well sometimes abusive verbally to me. But I just see her right now in the moment as a weak, dying woman and it's sad. Her whole life is just sad and he ruined it. He has a bad heart so he isn't living much longer either and you know, even with HIM being a jerk I still wouldn't just abandon him.
I just don't know what to say, feel anymore. I'm so very, very tired. I have existing depression (gee, ya think from home life?) that I"m managing with prescriptions and it's helped (it was horrible after having my son). But still, I just have this overwhelming feeling to just book a flight and run away alone. I'm tired of taking care of people. I'm tired of not one person being supportive in my life beyond the obligatory "I'm here". Well there not. DH wants his website done in a week. Best friend doens't answer the phone/not around. Former best friend, after I told her details of what's happening, just replied "happy easter". I'm sorry but that isn't very supportive. I went to her brother and father's funeral and all I get is a happy easter?
So how does one cope during this "waiting" process and afterwards? All I want to do is run away.
Comments
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You have a terrible situation. You cannot change your father, or the path of your mother's illness. You need to take care of yourself, do what you can for your parents, but also get help for your self. Beyond medication, you need someone to talk to. I'm not that familiar with hospice, but do they have social workers who work with families? Or recommend someone to work with you?
My thoughts are with you.
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I am so sorry that you are going through this. I lost my mother to lung cancer almost ten years ago... she was married to a terrible man, an alcoholic who made her life miserable. Against his wishes, when she entered hospice, we had her in hospice in my brother's home (I lived 1000 miles away from her, he lived 20, so that choice was easy). She was very peaceful during her last month or so of life, we kept her alcoholic husband at bay as much as possible. When she was awake and alert, she was surrounded by people who loved her. Not giving you advice, just letting you know that others go through this... just when the storm is at its worst for someone suffering from end-stage cancer, you get all this other crap to deal with too. I hope you can find a way to deal with this that allows you and your mother to enjoy each other.
You note that you are from Chicago? Have you thought about contacting Wellness House in Hinsdale? There are many wonderful counselors and support groups there to help.
Good luck to you... you sound like a lovely, caring daughter, and I'm very sorry you are going through this.
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Thank you Lisa. I will be contacting Wellness House. I'm assuming they are affiliated with St. Thomas Hospice (we went with Palos Hospital).
Thank you for the compliments. Even with rough times between us (which is pretty normal for mother/daughter--why I'm glad I have a son. heheh) she is still a human being who received no respect from someone she gave her heart/vows to. So it's all I can do for her. Many in my circle are saying "well she chose to stay with him". I just don't like that answer. While true, domestic violence and depression (or whatever my mom had) is complicated. Some can leave at the first sign of marriage discourse, others cannot. Being adopted, she was very afraid to have me taken away from her or given to my father. She once apologized to me for having witness a lot of abuse. She saw this movie where they interviewed kids who grew up and how they felt (all ages) and she finally understood what I was saying since I was a little girl. She felt horrible. I didn't have anything to say when she apologized and I still don't. All I know is it taught me a lot about love (and lack there of) and how to raise a child. Always put them first before your fears of the unknown. Everything will work out. She never understood why I wanted to be a "career girl" (as she called it) but it was not to live like her--feeling trapped and relying on a man for life. I always wanted to be self sufficient (BA/MA) and make sure I made enough (I make more than my DH) so if things got bad, I could leave with a child in tow. She could not. I hope she understood why I chose my path even during times she didn't agree. All I can do is focus on what is best for me and my son. -
I can relate. My dad left our family when I was twelve, watched my mom struggle it out and swore I would always be able to support myself, on my own, and I have accomplished that goal.
Even though it was really hard to go through everything that I did with my mom (my twins were only a few months old, and I had a three and four year old too), I managed to fly to Boston and be with my mom for about two weeks of every month for, what turned out to be, her last summer. I wish I could have changed some things but at the end of the day, I was glad I could give her some peace at the end of her life, and be with her as much as possible, even though it was really hard, I flew to Boston with one infant, and an older child, plus a laptop so I could work from there as much as possible, my husband held down the fort at home with the other two kids, just to make it manageable.
Do what feels right in your gut, and you'll be OK. I'm very sorry you are going through this, and I hope you can get some help coping.
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I will say a prayer for you... I have done hospice nursing & still there was great anger w/ some family members during my mom's passage....One thing is that a home hospice RN/social worker might be better at approaching other family members.. Secondly, you can have them speak with you for over a year after someone passes.( This is called bereavement counseling---> Check with the Midwest Hospice, Glenview which is the largest)....You may find that the numbness goes away with time but I did find something useful from the suffering... We can only give of ourselves & this is something you are teaching your children..If, on the other hand, the home care gets to be too much you can opt for1- Short intervals of inpatient respite care, with your mom's approval2- A very short inpatient stay where comfort care is prioritized.Something that I found in the research may help you... With many cases, you give as much time left with comfort care as you would with other options, so frequently this is the way to go but you need to speak with staff regularly... Also quiet music & white noise like fans may help.If there are things that you both enjoy like flowers or candles or smooth lotion that will help as well... Just turning over a pillow for her may help... Also please try to keep small amounts of oral lubricant... This helps when people get a dry mouth from oxygen.The home team can predraw up agents for you that will help & they can explain what comfort care is to your father... It is not no care but the appropriate care that you & your mom decided upon....In fact it might be the only thing that they would be doing in a hospital as well..I will say a prayer for you, your mom, your son & your family....In my soul, I believe that there is a creator & I hope that your mother is going to a better place.I certainly want my mother to be there because like your mom, she suffered with an uncaring husband... Still we never know what drives others to make poor decisions do we..Knowledge is power though... You have already used that in other areas of your life regarding your education & your goals for your son... You will prevail with knowledge that you & your mom chose what she wanted & that she could see the love in your eyes as long as she was here... That is a remarkable gift & sometimes all that we can give each other.All the best,Kit
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You are doing all you can for your mother, your father can take care of himself. You need to protect yourself here and place boundaries in place, so that you can help your mother through her final passage.
Screaming and shouting at your father will not change him, he's staring his wife's mortality in the face and clearly from your post in denial about what is happening. You're the one asking for support here and you cannot will your father to be anything other than he is.
You will have to draw on all your resources, practical and emotional to deal with such terrible circumstances, placing aside your anger for your father for another time, now is not the time to take it up with him. You could tell him that, firmly, that you are an adult and not prepared to put up with his behaviour while you are caring for your mother, you will do as instructed by the medics and ensure your own sanity is protected throughout this.
Stand up, firmly but fairly to your father, react to his behaviour as an adult and not the child, who is angry with him for previous behaviours, as any adult who was an onlooker would do. This is a whole set of different circumstances, a whole new set of dynamics are at play here, with different emotions coming into play. It is hard, so very hard, but to come through this process, is going to take it's toll on you, it's up to you, to put in place your own protection barriers. You're important in all of this too, remember that.
I feel for you, I can only imagine, how hard it is for you, and while I am not in your shoes, I do care for my mother, and I know what I have to do to protect myself.
My heart goes out to you.
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Thank you. I think he's accepting it finally. I went over there and fed her. God it was hard. My 3 year old said his goodbyes and made her laugh/smile. He told her "don't worry grandma, you will feel better and I will help you." I am over proud of my son.
Right now I feel a LOT of anger towards my husband .I'm doing this alone. He has a very important business meeting but not once has mentioned cancelling it. And honestly, it's bringing up some stuff that I'm becoming aware of. When I need him---for myself--he's not there. I went to the ER three times by myself ALONE. I went ALONE to the maternity ward for an emergency thinking the baby wasn't moving. And now I'm handling my mom's death alone. WTF. This isn't right. I'm pissed and we had a rough road I thought we overcame. It's relighting the fire of me realizing this is bullshit. Not saying anyhting about him being a father---he's good there. But being a husband, a good person, unconditional/unselfishness---I'm not seeing it and seeing how my mom lived her life with my dad, I think her death is going to make me do a lot of thinking on how everyone in my life treats me. I saw my dad break my mom. I don't want that happening to me (not that my DH is abusive like my dad but the situation right now I feel is utterly selfish bullshit). -
Maccupicu- My heart breaks for you that you have so much to deal with, your mom in hospice and knowing it wont be long has got to be so very hard, not too mention all the family drama. I know you are angry and hurt not only by your father and DH but your friends too, and you have every right to be, sometimes friends dont know how to cope with these kinds of situations, kind of with me when I was first DX with BC my friends (most not all) didnt call. I learned who my real friends were. As far as your husband goes, now i am not making excuses for him as i dont know the whole story, yes, you are going through a lot and you do need some support yourself to get through this, but he also has a family to support and cant be there for everything, You did mention he had a Very Important meeting so maybe he needs to focus on his work right now, but i hope that when your mom does pass he will be there for you then. Again not making excuses for him but hope he will be there for you in the end. I hope you can overcome all this anger, its not good or healthy for you or the people around you but I know you have every reason to feel this way!!
You and your family are in my prayers
Warm hugs
Debbie
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Thanks Debbie. He stepped up to the plate. He came with me and we just got home from making cremation arrangements and he's making his trip short. I broke down and told him how I felt. I have a hard time reaching out and I'm soooo used to doing things on my own that he knows it's my first resort. He said he doens't know how to act. I can see that. I just don't know what I need but I did need someone with me for that paperwork.
I'm so worn out but I can't sleep. I'm so afraid I'm going to get "the call".
For his job, it's for his own biz and this job is a huge deal--commercials, tv., and should result in us getting our lives back on track and getting ahead so that's why he's in the middle of this and is torn. The client is an .... well you know and he doesn't want to screw up this job. I get it, just everytime I need something (which is rare) something gets in the way. I'm glad he came with me for this paperwork and will come home if need be. He said he only needed to be there Fri and Sat morning and will come home after that.
The other thing is my dad's fingers turned purple/blue (he has heart problems) and that is not good. But he won't let me call his cardiologist. So now there's that.
Right now I feel like screaming a word that rhymes with "luck".
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I am glad your DH (dear husband) stepped up to the plate and helped you today. Sounds serious with your dads hands turning that color im not a dr. but it sounds like his heart isnt pumping right and not getting enough oxygen, he really should go see his dr. Im so very sorry you are going through all this. Wish you had other family members that could pitch in and help
hugs
Debbie
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Thank you. Today was a rough day for her and sad what she was going through. Lots of normal yet scary things. The process has begun for her. I'm going tomorrow morning after dropping off our son at school.
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Maccupiccu - Trust me when i tell you i know exactly where your coming from. My mom was diagnosed earlier this year with Stage IV BC. The Onc gave his dx and made it clear that her cancer is incurable. Chemo is an option, but with the side effects makes my mom very very weak, unable to walk or take care of herself. At first everyone was very supportive aka "Gung Ho"about pitching in and telling me how much they were going to take care of her this and that etc etc etc! But when the dust settled it was just mom and myself. Dad helps out as much as he can and is supportive, but he's also very sick with diabetes. Can't really take care of her much less himself. He's very weak and can't help me lift her into or out of bed. My brother comes every now and then, but then goes home and drinks and passes out usually by 8pm. His live in girlfriend was great at first but couldn't handle the stress with our family and has problems of her own. Last week I had to tell her to stop coming by because her own anxiety was freaking mom out. My sister comes probably three times a week sometimes four, but then leaves after an hour. I've asked her if there was anyway she could prepare a meal for mom and dad every now and then, but replied with "I just Don't have the time!". Don't get me wrong, I love my Family very much and the mean well but I just wish they would recognize how much of the burden I'm handling. My wife only gets to see me once a week and we do our best to make the most of it. My dad told me last night, just go and be with your wife, I can handle this, this is my Cross that I have to carry. I can't tell you how tempting that was to Just Go! Get Away and Leave! But I could never find it in my heart to just leave like that! I would have that image of mom in my mind and be consumed with overwhelming guilt. Anyway Maccupiccu, I just wanted to reach out to you and let you know that your not alone. I'm here bearing the Cross just like you.
Sincerely,
Dvillarr
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Thank you everyone. My mom passed today at 2:15. I posted more details here: http://community.breastcancer.org/forum/16/topic/785831
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maccupiccu, so sorry. I lost my mother four and a half years ago. Still miss her everyday, but I cherish my memories. May your mom rest in peace and may you and your family heal from her loss.
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I cried when I read your other post and posted there. Saying prayers for you and your family.
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