An update on my mama

[mamasbabygirl]

Well, life is pretty hard these days for everyone. Mom is not feeling well at all. Her head and jaw are killing her. The hospice nurse has been trying to find a dentist for 2 weeks now bc she thinks mom has an abcess. I asked her to just have the Doc start antibiotics, but this has not happened. It could be an abcess or the protruding tumor growing out of mom's head. It is bleeding and her head now looks deformed. I wish they would just bandage it. The large amounts of oxycontin and percocet don't really help, so she is suffering. I hate seeing it. She has moments where she will sit up and talk and is always very talkative while I have her in the shower, but other than that, she lays holding her head. I hate this with everything that I am.

SF is outwardly angry that he is getting up with her at night, but when we suggest her hire someone for the night shift, he throws a fit about the money. So, mom and SF are fighting again. It is bad. She can barely talk without pain, but musters up the energy to cuss him out. He is still impatient and makes every task 1000 times worse than it has to be.

SF and I had it out in front of mom bc he spoke to me in his normal nasty tone one too many times and I told him he is NOT to talk to me like that any more (the counselor told me I had to set a boundary with him and he knew it before moving in). Since then, he has barely spoken to me and vice versa. It's fine with me until I overdose my mom bc he will not communicate with me medicine changes or what the nurse is saying during her visits. (I gave mom double the amount of percocet she needed yesterday). I guess I will have to call the hospice nurse and make sure she is aware that she needs to communicate with me too. Mom was so happy after our argument bc she is so glad to know "that you will stand up to him and not put up with his control anymore". I really did not want things to be like this with him, but it is a two way street.

I am sick that they are at it again. She is so confused about everything, like whether she is on the bedpan or not, whether she has eaten or not, whether she has taken her meds or not. You would think that with SF knowing that, he would not act like the martyr everytime she gets on him bc she is confused and dying. Sad, eh?

I still try to take time out of the day to scratch her back and she has been getting up to shower every day/every other day with John lifting her full body weight and me moving her tush. SF just stands there. My brother was walking by last night. Mom asked him for a blanket. SF yelled at her that he'd get it. Mom was trying to involve my brother/get an ounce of attention from him and it's like SF wants to "save" my brother from her.

OK, I got out of control venting here, it felt good. I gotta get some work done.

[Darci]

Lori, I am so sorry your mom is in such pain, I am hoping that the drs can find a way to make that better for her.

You are such a terrific daughter, you have helped your mom through so much, and your love for her comes through with each post. Too bad it is so hard to deal with your SF.

[MilliBr1]

Lori, prayers they can find relief for your mom.

[Kasey]

Ah ((Lori)),

Can you feel my hand just patting your arm trying to offer some comfort? I sure wish I could REALLY be there to do so in person. I don't know what to say to make any of this better. I hope your knowing you can come here to vent, cry, rant, complain, bi#$%, or whatever helps in some small way.

So sorry .

Kasey

[marym]

Lori,

I'm sorry you have the added burden. Please hang in there.

Mary

[ma's kid]

Prayers that they can get your mom's pain under control.

Gentle hugs, sweet Lori

Libby

[melindasue37]

Lori,

I can feel your pain so much. All we really want is what is best for our Moms. You shouldn't have the added burden of your SF being such a jerk.

The only comforting thought I have right now is that we have our Moms here with us now... thinking about tomorrow is just too painful.

I pray that today is a good day for you and your Mom.

Warm Hugs,

Melinda

[EastCoastLadi]

Lori,

...it's terrible that your sf is being such a "thorn" (for a lack of a better word).. I think he's angry part due to he's scared and helpless. I hate to say but I have been in your shoes, my father was home w/ hospice this time last year. You feel totally helpless and then when you see your parent in pain, it's too much to bear.

You know what really gets me, when someone is in hospice, where are the drs?.....it's like, ok I've done my thing, so next... ( I posted an article about this a while back ..I think I may repost it again, ).

Does your mom want any medical measures done to prolong her life? I ask because if she does, I think she should be back to the dr/hospital to take care of the bleeding. Hospice doesn't and shouldn't mean that because a person may not have long to live, they shouldn't be treated for anything new that may arise.

My prayers go out to you, you're doing the best you can, just being there for mom is one of the greatest "medicines" there is, you may not agree, but I think your mom would.

Grace

[tatlyn]

(((Lori))). I'm sorry things are so difficult right now. Many prayers for you and your Mom.

Lynda

[Ann]

Lori, I think you are one of the bravest young women I have ever "known". I so admire you for hanging in there and not letting your SF's hateful attitude keep you away from your mom's side. I just don't see how that man can lie down and go to sleep at night. You just hang in there and know you can always talk to us. Keeping you and your mom in my prayers!!!

[Don Wood]

My heart aches for you, Lori. My prayers are with you. Don

[Connie22]

Lori---

I don't know what to say!!! This is a horrible situation for you to be in. At least ours was at a neutral location (hospital). My brother is the one that added a lot of stress between Mom, SF and me. When mom passed and brother went home,(didn't even attend the celebration), things have finally worked out with SF. There are some people that just like drama,I don't know why. I don't play those games well-so I just don't play.It is not suppose to be that way but some people just plain do not care. I call those people self-absorbed. I want you to know that i am keeping you and your family in my thoughts and prayers. Stay strong and if I lived closer I would give you a real hug.

Connie

[Treebywater]

Ah Lori... I hate this disease and I hate what you are going through. I wish I could just come sit with you all and help in some small way. What I can do is pray and I will wrap you all in prayers of peace....

[sharyn]

Lori,

I have no words....just know I am thinking about you and praying for your Moms comfort.

[MsC1210]

Lori

Just sending you prayers for strength. I am so sorry this situation has gotten so difficult.

Hugs

Chris

[cindy0519]

Sorry to hear that things with your mom are not going well. I hope that they are able to get her pain under control quickly...whatever it takes!

You are doing amazing things for your mom! You are both blessed to have each other!

Prayers for peace for all of you,

Cindy

[Andrea]

It is not fair what you are going through You are one tough girl

[angelofcharlie20]

Lori,

So sorry to hear that you're going through all this. Hoping that your mother finds some comfort in managing her pain.

Best,

Shirley

[Linda661]

((((Lori))))

Um, you REALLY should be getting better support out of that hospice organization than you are -- having your mom in that kind of pain and ditzing around for 2 weeks on a dentist; open bleeding...no antibiotics with suspicion of tooth abcess.....no hospice should be allowing things to be like that. Your recourse is to talk to the hospice social worker on your team and tell him your dissatisfaction with your mom's situation; you can probably even cover it with the medical director, but start with the social worker......ask them what their plan is to deal with mom's pain outright (you have the right to know this as a family member -- all family dealing with the patient is under hospice service too) -- you may actually need a new hospice nurse from that organization on the scene and it is your family's and your mom's right to have whatever you need in the name of comfort and quality of life. You could also cover all of this directly with whomever the doctor is on the hospice team (that should be either your family physician or the main onc. your mom saw -- whomever is the doc. of your mom's that the hospice nurse is checking in with regularly).

Unfortunately, hospice needs as much assertive advocacy from caregivers as pursuing curative treatment does!

Hang in there friend and keep us posted.

Linda

[michelepal]

((((Lori)))

Sometimes life just SUCKS!! I'm praying that you can get your Moms pain under control..Stay strong for your Mom and don't take any crap from your SF. He should be thankful that your Mom has such a wounderful daughter and that your there for her..

Love,

Michele

[sharonjo]

Lori,

So sorry to hear about all your and your mom's pain. Linda is right about getting more support from the hospice. If talking with the social worker does not solve the problem, I would go right to the physican in charge.

Also, if the Percocet and Oxycontin is not working to control your mom's pain, ask about Methadone. More and more doctors are prescribing it for chronic pain. My son was taken off Percocet and Oxycontin and put on Methadone when he entered hospice. They said there were less GI and other side effects, and that it was excellent at controlling pain. Our experience with it was fine, and I have 2 close friends with chronic back pain that cannot be helped with therapy or surgery who have been taking it with good results.

I will keep you and your mom in my prayers.

God Bless,

Sharon

[mamasbabygirl]

Thanks guys for the words of encouragement. I agree that she should not be in this much pain. I was thinking that it is just so hard to control head pain, but maybe trying somethng else would help. I also bitched out my mom's dentist, who we have all gone to for 20 or more years when he told me "I haven't seen her in a year, I don't do house visits and I am not prescribing antibiotics-call her family Doc". I thanked him for not being there in the end. I will yell at anyone these days who gets in my way. I wonder when this anger will leave me...I feel such a mess.

I guess I will call the hospice SW and ask what the plan is. SF and I agreed today to keep the percocets in her every 4 hours on top of the oxycontin every 12 to see if that helps. She has slept alot today, in between waking up to use the bedpan, only to find she has already gone or doesn't have to go. Her confusion is wierd, she thinks my son is laying next to her and he isn't even here. She was mad at me last night in the shower bc I am "just like Tom, thinking she has lost her mind". I tried to explain that I have always been there to make sure she was heard, but she was a little confused. I just stopped and realized I was trying to rationalize with her. I just hugged her and told her the anger was not worth it. She agreed.

This disease sucks. I hate it with all of me. I love you all for listening to me go on and on. Damn.

[EastCoastLadi]

Lori,

I agree w/ you, I know I don't tolerate anyones' "BS" anymore , I don't have the time or patience for it!!!!

I have to ask, do you give your moms' meds by mouth, or is she on a pump? Because if she isn't on a pump, she probably should be, that way, they can set it up that she gets so much med. at certain intervals of time. I know w/ my dad, they started out in the hospital every 30 mins, when he came home, in the end he pressed/bolus the pump every 15 mins. Also the pump is set up that you can't overdose.

Also I don't know if your mom has a counselor, or perhaps hospice could send in someone, for her to talk to, only a suggestion.

(((Lori))), my heart goes out to you, I remember the agony all too well w/ my dad last year. Towards the end of my dads' life, I saw that life the way for him suffering was no life at all. I wouldn't want anyone that I love to suffer the way my dad did. Although I miss him, I could't live with seeing him in unbearable pain and no quality of life.

Prayers for your mom and your family.

Grace

[gail]

Wow, I wish there was something more I could do. Your plate is SOOOOO full, but I understand you are doing exactly what you need to do right now. Obviously, not what you would choose to do, but you are doing a bang up job.

For sure, call the social worker. That is her job to help and advise. And I love the dentist comment--you just keep on being vocal!!! SOME PEOPLE JUST DON'T GET IT and we have to educate them!!!! I firmly believe in what goes around comes around, and that dentist will remember this.

Meanwhile, keep breathing and putting one foot in front of the other. And keep talking here.

gail

[nonni]

Oh my dear Lori...my heart aches for you to see your Mom in so much pain...I pray she will get some relief soon...You are such a wonderful daughter and I know your Mom want's YOU right by her side like you are doing...

You tell your SF to go take a hike...It is YOUR Mom...NOT his and you will do what you damn well please to make her as comfortable as possible...

I know your Mom is his wife but he could have lots of wives...She is the only Mom that you will ever have...and that makes a big big difference....So 'sig em" Lori...don't take no crap from him...but don't do it in front of your Mom...She will feel worse...Get his sorry a$$ in the corner and let him have it...

Maybe I am out of line for venting like this...but this kind of stuff aggravates me to no end....big hugs Lori....PamS..