Making final plans this weekend. Too much.
I went to my parents yesterday and she looks horrible--weaker, more congestion, edema, now she tells me she can't urinate. I know that is a bad sign. My father finally (after fighting for a week) has allowed me to get hospice in order. He also told me I am to be in charge of medical directives--he just can't do it. WTF? And then their wishes --cremation--no service, no funeral, no wake, no family, no friends, nothing. I called the funeral home to ask what type of package/what happens (I do best when I know details) and they told me that it means no embalming and someone (ME!!!) has to identify the body. WTF again?
I just think it's utterly sad that she/they are going out with no one beyond their child to take care of things. It just reinforces how isolated we lived and how, well...difficult they are. We once had a large family of relatives until both of them cut off ties with everyone. My mom said "who would come?" Oh I don't know, but still, don't you want to have the offering of saying goodbye? Nope.
So this weekend I'm calling hospices to find one. The oncologist chose a for profit--not so sure about that one. I don't know any of this--who is the right one to choose? The ones I think are ok, I'm not sure if they'll come my parents way (they live in the hood). My dad is so weird about who he wants in the house. All I hear are barriers--too far, no not that one, etc. but he is putting me in charge of decisions. WTF?
And her just laying there in the funeral home, in the crematorium place with just me. My dad is totally going to cop out and not go. I know it. It will just be me and her in that room .She won't be embalmed. I know that physical signs change after about 2 hours. So the next day I'm supposed to ID her? My husband offered but it doesn't seem right for him to do it. He thinks my dad is being a huge coward to put all of this on me. All I want is for my mom to go out with some respect. I started to look at some outfits for her because she had nothing nice at home. Even if it's a pretty skirt and shirt. I don't want her on the "slab" and they're descirbing in what she died in (nightgown). WTH is that? I mean, the woman had no respect living with my dad. No life, no happiness, nothing. At least can we do SOMETHING for her? Not a she died, funeral picks her up, ID her, and woomp there she goes to be creamated, here are the ashes---because that is how it feels to me. Just wrong.
I told work what is going on because I really don't think she's going to last past April. I'm really trying to get a grasp on where she is in the stage of dying and it seems she's between a pre-active and active phase.
More edema from waist down
Having more trouble getting out of bed/movement
Really weak sounding, voice trails off
Spirit gone. Desperation set in.
Congestion getting worse. She said it's hard to breathe.
I don't know if she really eats/drinks anymore.
She told me she doesn't really urinate. That isnt' good to me.
She said she's in pain and is taking her Vicodin. She can't sleep really (restless) and the sleeping pills not really working.
I just want to get the DNR in order so if she loses consciousness, she knew going out that everything was set. She does NOT want my father in charge. She doesn't even want to give him the ashes. I don't blame her. I don't trust him dealing with them. If anythign I was going to split them.
This just feels so strangly wrong, alone, and isolated. Me, an incompetent father, a mom dying looking to me to saver her, a husband who said he will do what it takes but my god some of the things he is saying (your bday present? Dude, kind of have other priorities, mkay??? Going to a concert on the 20th. Dude, I don't know if I"m doing a bed side vigil, cremation, or getting over anything on the 20th.)
I know life has to go on, especially since we have a 3 year old and I'm the main breadwinner w/ benefits but right now, I just want to run away---far, far away. If I could book a rount trip ticket I would.
Comments
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Maccupiccu, we're so sorry you're in this difficult situation. You might want to ask other members in the forum who may be in your area if they can recommend a hospice service they know. Or is there a social worker connected with your mother's hospital who might be able to advise you?
The Mods
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I am so sorry that you have to go through this but as a stage IV metster, I'd like to say that you should try to determine if there are social workers at your mother's hospital that will be able to help you with your concerns, but please make you find time to let your mother how much she means to you. I know that my father has always been moody, which has been a lifetime struggle for my mother and I, but now it is worse. I don't know how much time I may have left but I sure don't want to spend it being unhappy every minute. I wish your mother was more comfortable but that doesn't mean she won't hear you telling her how much you love her and will miss her.
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Wish that there were words to support you through this.... I understand, my mom has dementia, altzimers and copd and cannot walk to use her arms well...... now in a rest home. Though her mind tells her it is a different day and she is active the realities are visible to me and the family. I am the one that has taken care of her interenst and been making the decisions about her "final" needs. Not easy but it is a test and tell-all of loving someone enough to help them go with dignity. Bless you you are a good daughter! Hopefully you'll get some peace and the ability to recharge.
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I am so sorry This sounds so much like how my Mother passed.......and I was her only child......she was cremated and put into a plastic box & nothing more...as requested by her.. ......they took out her corneas right after she died and I had to go in and ID her with her eyes sewn shut (so sorry if that is too much)I am thinking of you & your Mom........<3 (((((((Hugs))))))) I agree.......keep telling her how much you love her and will miss her
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Your post made me so sad. I'm so sorry that you are dealing with all of this. It is a lot to handle. But, remember that YOU have a lot of support. There are so many 'sisters' here on this forum who will be here to support you. You have been given some good advice from the others who posted before me in this thread. I will keep you in my prayers as you go through this difficult time.
Take care of yourself and know that you have done all that you can do. You are just one person. You cannot be everything. Do the best you can and then take it easy on yourself and know that you have done what you could. Tell your Mom how much you love her. She'll hear you and you'll be glad that you did.
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Hi maccupiccu. I know we've spoken before. Perhaps another perspective will make you feel a little better about your mother going through this alone. My mother passed away when I was 18. My father had passed away when I was 6, so it was just me and my mom for most of my life. She spoke many times about what she wanted to happen when she passed...being my immature 18 years, I only half paid attention and when she did pass, I really relied on other people to help me make decisions. Her best friend insisted that I have a big funeral for my mother, which I did. I will never forget this....the funeral was excruciating for me....I practically crawled into the coffin with 300+ people watching and then had to face all of these people at the tea afterwards. For me it was virtually impossible to put on a social face and converse with these people. I was a complete wreck and could barely stand. That would not have been what my mom would have wanted. Now that I'm facing the same prospect, I feel exactly the same way....no visitation, no funeral, no luncheon, nothing. My children and husband can choose to say goodbye however they see fit, but they will be allowed to do it in private. I know 100% I do not want to subject them to what I went through. Even considering the fact that my children would have to try to put on their social face during the most traumatic time in their lives hurts my heart. I don't want that. Perhaps your mother doesn't want that for you either.I know this is so hard for you. Maybe you can find some comfort in the fact that there are other people out their, social or not, that want exactly what your mother wants...to have it end with the ones you truly love and to make it as easy as possible for you, the one she loves the most. I'm so sorry.
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maccuppicu, I'm so sorry. Its not enough but still I'm sorry.
It is sounding like the id'ing part is going to be super hard for you. If it were me, I would take my husband up on offering to do it. I doubt your mom would want you to go through the extra pain that viewing her body would obviously bring you. You know your husband best but if it were my husband saying things about birthdays and concerts while my mom was dying, I would attribute it to him just not really knowing what to say or do and yet, wanting very much to protect me. So consider that his offer is genuine and think about letting him do that for you.
I also don't think it is so unusual that your mom doesn't want a big service. Still that doesn't mean that you and your friends and family who love and support you can't have a memorial service when a little time has passed.
many gentle hugs and know that this weekend we will all be thinking of you.
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Maccuppicu, I am sorry you are having to go through this. I am an only child and when my Mom died I also had to make all of the arrangements, before during and after. I was 61 years old at the time and not so young and vulnerable as a previous poster. My mom was in a nursing home and I didn't recognize that she was dying until 60 hours beforehand. They said it was too late to call in hospice. I would go back in time and call hospice anyway if I could. Some physical things were not taken care of for my mom. I think hospice would have known what to do about them. I am still sort of haunted by the neglect of those things. I was sort of shocky at the time. Hospice would have taken care of all this.
My mom also stopped eating and drinking and I didn't understand this was a clear signal the end was within a few days. My understanding is that we make endorphens when we don't eat and that helps with pain. I found that comforting.
I wish you a clear path as you make these arrangements. I personally found it comforting to have my mothers small circle of friends and mostly my friends to come to the funeral home and the morning funeral there for my mom. Some extended family came in for the service, I hardly knew them but it was nice for me to meet these people. I had always heard that funerals were for the living and now I understand that. My mom was gone but I wasn't, and I needed that support and formal closure. My anger toward my mom has faded appreciably in the 4 years since she passed. I didn't know it would. It is all a process and the process is healing.
I will keep you in my prayers and also send you gentle supportive hugs.
Ginger.
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Dysfunctional families don't suddenly function when there is a crisis. When my mother was dying, my father decided I couldn't come because I would "scare" my mother and she'd know she was dying. But, my brother and sister apparently weren't that scary so they were there. She died without my being able to say good-bye.
He refused to really face it until the very end too, and my sister had to make all the arrangements. Nothing was done - just a cremation and a funeral home and then picking her ashes up to take home.
Now that I am Stage IV, he refused to think that I am going to die either. It's just the way he is, so you just have to take over.
Some of the symptoms your mom is having can be eased with hospice. They can help her breathe, they can put in a bag for her urine (no pain with that.) If she's not eating or drinking that's a sign that death is imminent so rather than worry about what your father will or won't do, I'd just do what it is you can do for her.
I'm sorry you are going through this - good luck to your family.
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maccupichu - I am so sorry that you find yourself in this situation - and please know how many of us feel your pain and stand with you. My understanding of the ID process is that at some point prior to your loved one being buried or cremated, but once they have arrived at the funeral home, they must be identified. This can happen at any point in the process. If you are fearful it might be best to do it asap after she passes. I could not do it for my father quickly as I had to fly across the country, and I was still on the plane when he passed. His funeral was not for several days so I waited - this was not a good idea. With my mother, I took a several pictures of her with me to the funeral home and the funeral director did the ID for me, I was in the room but did not want to look. I wanted to remember her the way she looked when she passed, which was peaceful and beautiful. You may want to make arrangements in advance and ask if this is possible if you don't feel you can handle it. If she is doing this badly the hospice you choose should be able to offer you 24-hour assistance. We had a daily RN and social worker who checked on things, but we had a CNA 24 hours a day so that we were not alone. You may want to use that as part of your criteria for choosing an in-home hospice. I wish you strength to deal with all you have happening - I know this is hard.
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maccupiccu----Sincerest Sympathyand Deep Understanding for you. I had 2 different experiences with hospicecare. The first was with my Beloved Mother-in-Love (as I referred to her) As she was dying, she remained at home until about 3 days before her death,then she went into hospice care at a hospital close to home. I spent the nights in her room with her so I could direct any of care she DID NOT want. SHE stayed in charge, took breathing treatments, had fluids by IV. The middle of the 2nd night she refused the breathing treatments, removed her IVs, refused her oxygen. In the morning I called all the family and at lunchtime SHE INSISTED her daughter and I go have lunch and leave her be. By then her sons, sisters,brother and all her Grandkids were there. We went back to her room a little after 1pm. Her nurse was coming down the hall to meet us and we knew by the look on her face Mum was gone. SHE DID IT HER WAY. 3yrs to the day her Beloved Husband passed away, within the same hour. SHE DID IT HER WAY!!!!!! My second experience was with my Daddy. He was in hospital and wanted to go home. Hospice care was available. So they came everyday , a Dr.,and a nurse. His kids and grandkids were in and out and on his last night the only thing we did was tell him goodbye ,we loved him, and that it was okay to go. He had all the things in a hospice place, but at home. HE DID IT HIS WAY!!! Ask your Mother what SHE wants, hospice at home or in hospital and hospice will take care of the rest. YOU need to let her know you will be fine so she can be at peace. Get for yourself the help you need from friends and family AND the hospice caregivers. They will all make you stronger. And dont forget everyone here is willing to share your sorrows,your angers,and your happinesses!!!! Again sympathy and hugs to you and your loved ones.--------kad2kar
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Thank you ladies.
The hospice came yesterday. Papers were signed. All of her meds were changed (@#$# oncologist gave her vicodin pills--um...her liver is shutting down/can't process pills, lady. Ugh so mad at her doc.)
She's got ascites, tons of congestion in her breathing, she says she urinates only once a day if that. They prescribed her liquid morphine, atavin (boy I could use some now), a patch for the contestion. She got oxygen, a better walker, and a commode. Of course dad said she doens't need the oxygen and put the commode in the other room. WTF? He pissed me off so much yesterday I was yelling at him. So f'in tired of his denial. My mom was crying/weak and couldn't even produce tears she's so done. She was crying "I can't even die here in peace." I told the social worker and intake nurse how he is with her and the social worker said she definately will be coming more often. Nurse is coming today for complete physical. I hope that they give her some oxygen while she's there.
I'm so exhausted and it's not even time for 24 hours care yet. Not sure how to get through this. It feels like anyone in my life right now isn't being very supportive. DH's biz is taking off so he's going out of town and wants me to do his website in 2 weeks. Dad--forget it. Best friend--never answers her phone or is busy. Really, really close friend (former best friend; long story) wrote her and all I got from her was a reply of "happy easter". That's it? Happy Easter? I just wrote a long email asking for some prayers/support and that's all you got?
Guess the anger stage is erupting. I think once this passes I might take a trip somewhere warm alone. I just feel like going somewhere 80 degrees, with a pool, some martinis, and be alone.
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Thank you Robo. I'm from the SW burbs, parents are near Midway. I work downtown.
All I know is that all of you women are amazing. I don't think I could go through what you have to deal with (or my mom). You're all very brave and wonderful.
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I feel for you. I was the oldest and my mother died of BC over 35 yrs ago. Then, almost one year ago I was diagnosed with it and although the tumor was tiny it was very aggressive and I am stage IIIc. My father did all the IDing, etc for my mother and we all helped him plan her funeral.
I am finding that illness and especially anything possibly terminal brings out either the best or worst in people. My own family, always loving and supporting in the past, does not know how or what to do for me so they do/say nothing. It's been my friends who have pulled me through all this. That's probably what's hurt the most.
I have no advice but do wish you the strength to get thru the upcoming days.
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Hi Maccupiccu......have you considered an in-patient hospice for your mother? Not sure what age person she is, but if she is on Medicare, they will pay in full for her care.
My 87 year old mother had a stroke in December and lived for nine days, eight of which were in an in-patient hospice. The nursing staff and techs were so wonderful and caring.....gave her excellent care. She was on oxygen, they bathed her twice a day, swabbed her mouth out every couple of hours (could not swallow because of stroke) and gave pain meds when needed. The whole hospice setting is so comforting and caring to the patient and family. I spent every night with my mother and would do it all over again if I had to.
I send you great big hugs....this is truly heartbreaking.
Kathy
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Oh maccupiccu but you are strong --look at what you are able to do for your mother. Being angry doesn't mean you aren't strong nor does wanting to walk away. Staying proves your strength.
I agree with kbram--if your mother can't get the care she needs at home then she needs to be moved to some place where she is comfortable and getting what she needs. If your dad hasn't come round yet, I see little likelihood that he will improve. And if medicare will cover it there is no reason not too.
Remember that we are here if you need to vent. Gentle hugs to you and your mom.
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In-patient is still on the table. She went to a SNF after her pneumonia in Feb but it definately wasn't a place for her. While Medicare does pay for care, in-patient does not pay for the room/board, which is $300 a DAY. Dad is cheap and won't pay for it. He was all gung ho for the funeral proceedings so I don't have to do it on the day she passes. When he heard they want payment up front, forget it. I'm going to see at least if we can put a deposit down or something. I don't want to pick things out the day of/next day seeing that she wants something extremely simple meaning no embalming.
Thank you everyone for being supportive. I know this board is specifically for patients going through hospice but I wanted to say thank you to those who went through it. -
maccupiccu, a skilled nursing facility is NOT a hospice. A hospice is specifically for end of life care. The social worker at the hospital where my mother was helped me in selecting a hospice. Not knowing anything about hospice, I just picked the closest to my house for convenience sake. It ended up being one of the best decisions that I made.
My mother wanted to be cremated. At the time of her death, the hospice workers called the cremation place of my choice and made all the arrangements. She died at night and I had to call the cremation place the next morning and make an appointment to go in to attend to the details.
If your mother is still able to communicate, talk with her about these things. My mother had a living will and I also had medical Power of Attorney. She specifically told me what she wanted and I did as she wished. These are all hard things to talk about and my thoughts and prayers are with you as you proceed. We are here for you as you need......you are not alone. Good luck.
Kathy
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maccupiccu...
I've been following your story and I think you're tackling this very painful situation with a lot of guts, with love and respect for your Mom. And I know she appreciates it, whether she can voice it or not. She's lucky to have you as her daughter... your honesty about her situation, about what's really going on behind your Dad's veil of denial... will go a long way in healing yourself in the end. I'm an only child and I took care of my Dad before he died of cancer. I made all the arrangements, and tried to give him the respect I felt he deserved with his final wishes. He requested cremation with no services and I honored that. I completely understand your exhaustion... the obstacles that you're facing make a very difficult situation even worse. Please know that we're all thinking of you here... take care of yourself and I say book that trip to the 80 degree weather with the pool and the martinis as soon as you can. Denial can also be a very beautiful thing.
Love to you and your family...
Rose.
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Thanks Rose. I was looking at some spa places in Arizona. Horseback riding, the desert, pool....sounds perfect. Now to find something economical ($600 a day? Um...no.
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Just talked with hospice. She's on daily nursing visits.
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I am sorry that you are going through such an emotionally horrible time. I think there may be a lot of reasons people don't want to have a service, funeral or wake. I believe these things cost a lot to have and maybe your parents don't have the funds to have all these things. But just because they don't want these things doesn't mean you can't honor your mother in some way after she passes. Perhaps you could have a memorial service in her honor. You could even take some type of trip you always wanted to, take your mothers ashes with you and spread them in a beautiful place to "free" her of a life that doesn't seem as if it was all that good. I am sorry that you seem to have a very difficult father and they both do seem difficult to deal with. It does seem that viewing your mother after her death will be traumatic for you. Is there anyone else that could do this other than your father? I feel for you having to go through what you are going through right now and hope you will be able to find peace some-how. The fact that you are soo angry and not falling apart and unable to function tells me that you are strong. Thought it's not fair that you are in this position, I think you are strong enough to help your mother in a way that your father is not able to.
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Thank you. Hospice nurse just told me now is the time to take FMLA. Her oxygen is about 80. She's extremely weak. I'm bringing my son over to day goodbye. I don't think she'll make it past a week. Her swallowing is starting to go. She's still "with it" though but tired, sleeping, and can't get up.
For the wake/funeral, it's ok if that's what they want. For them it's not money but isolation. They don't even want any family notified. Not cool but if that's what they want....
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Maccupiccu have you considered talking with the hospice about the direction you are being given regarding your Mom's final wishes. I am so sorry for the stress you are currently under and don't actually know how to broach the subject in a helpful way. I will keep it simple. The extended family of your mother is also your extended family. They may be poeple who are different than you have been told. This was my case and I am so glad I made some contact. They were nice people who for whatever reason my mother didn't want in her life. I suspect it was because my Dad drank and she didn't want her extreme codependance questioned. I wish I would have had these family members in my life always. I missed out on a lot of "normal" because of it. These family members cared a lot for my parents and weren't given the opportunity to show it. I apologize if this is an inappropriate time to broach this subject.
I hope your time with you mom is good and you find peace with the help of the hospice you have caled in.
Blessings
Ginger
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maccupiccu, I am sorry you have reached this point but glad that the Hospice Nurse is giving you good advice. many hugs.
respectfully I think gingerbrew has a good point about the extended family. You would not be the first person to find out things were different than you had been told--I have had the same experience with an aunt&cousin that my mother essentially excluded from our lives or always bad mouthed. It was not until my aunt was dying that I truly realized there was more to family politics than I had been led to believe. And my half brother found out all new stuff about our father only after his mother had died. There may be people out there who care about your mother and who would want to join you and support you in mourning her. Just something to consider.
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I just got back from their house .Not good. I had to feed her. She's unbelievably tired/weak. Her cough/breathing erratic.
I have to go to the funeral home tomorrow to make pre-plans. Right now I'm unbelievbly angry that I'm doing this alone. My DH is going on a business trip tomorrow and didn't once even mention that he would cancel/come back early if things are bad. So many times I've been left alone when I needed him. I think my mom's death is going to bring out a lot of issues for me regarding my own life and how I let people walk on me. I'm tired of it. I am starting to clearly see how alone I am in my own life and I shouldn't be.
Sorry for babbling. Just angry right now. I'm typing this and he's downstairs doing his own thing on FB. Not right.
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I am SO sorry. I can feel you pain in your words. I hope you can feel the hugs. We all have our arms around you, sister. You keep coming her and vent away and express all those feelings. We will be here and we will listen and though we aren't where you are, I hope the support we offer will help you in some way. I'm going to pray for you as you face this tough week.
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I'm sorry that your husband isn't being more supportive and that you have to do this alone. This whole ordeal will change you, is changing you, no doubt about that. It doesn't have to be a change for the worst though. You're clearly a very strong lady... maybe it's just a question of being more outspoken about what you need for yourself... "HELP ME, DAMMIT!!!!" I do hope that your husband steps up at some point... I'm sure he's fearful and wants the whole thing to disappear but there is much to be dealt with here, far beyond your mom's death.
Thinking of you...
Rose.
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You are all amazing. Thank you. I was telling robo that my husband did come with me to make the cremation plans. He called the manager explaining how I'm alone and he's going away and doesn't want me to do this alone. I just got home. I'm worn to the bone and it hasn't even begun yet.
I'll write more tomorrow when I get back home. I'm just having a hard time sleeping .I'm so afraid I"m going to get a call in the middle of the night.
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