I'm Taking Care of My Mom

[Merry]

Five years ago my Mom beat Breast Cancer only to develop lung cancer in October. It's Stage 4 and she was taking chemo only to hold it at bay and give her more time, or so said the docs. She contracted MRSA from the damn port they put in her and it had to be removed. Four weeks of every day anti-biotic transfusions killed the bacteria but she was unable to receive chemo. After this last round of chemo, she's been nothing but nauseated and we have tried most all of the anti-nausea drugs including synthetic marijuana which made her sicker.
I have been staying at her house since Dec 20 and it feels like I'm just waiting around for her to die. She skipped her next chemo treatment because she's been too sick to get off the couch and when the Visting Nurse came by, we spoke of hospice care because she is thinking she cannot take being sick like this in her remaining time. She's a fighter and this is killing me because it feels like she's giving up. I don't want her to do anything extraordinary that will cause her misery but I don't wanna lose my Mom. We've been extremely close all our lives and I know in my mind that everyone dies, but oh man, NOT LIKE THIS!
I have to call the clinic today to cancel her chemo and I don't know what to ask or say to them. Will the Oncologist still consider my Mom her patient or do they just 'write her off' and let the hospice take over? I would very much like to have someone order a PET scan, or MRI or SOME kind of test to see if the cancer spread, but the last time I asked, I was told that it was "too soon" because she only had 2 chemo treatments.

I am on my own pretty much in taking care of my Mom. I don't know if I am doing anything right other than being a good cook, and housekeeper, lol. She's so weak and tired all the time that it breaks my heart to see what was once a vibrant, fiesty woman who was always in her garden or flower beds reduced to this pale, wan and wobbly woman.
I don't get much time to myself and is that selfish of me to think that? I walk her dog for about an hr every day when I know she can be left alone. I'm not far away in case something happens but if it did, I'd never forgive myself. It feels so wonderful to be outside for a little while but then I have to come back to this House of Pain. I'm trying very hard to make her laugh and keep the vibes light but we both know how this ends.
I'm not sure if I'm asking anything, but thanks for just letting me write this down because I have no outlet to let off the pressure I feel inside. I left my husband behind to come back here to look after my Mom and I miss my new life in a new state. When I feel overwhelmed I guiltily wish I was back there with him and our dog. My younger brother is totally useless as far as help and I have to take care of his lunch, dinner, laundry, messes in the house, because Mom has made him dependent on her care over the years and if I don't do it, she will try to.
How do I learn to accept that she can't fight this disease with chemo treatments and watch her slip away without a fight? It seems so wrong but yet I can't bear to see her so sick from the treatments that are not going to cure her. It's truly a "rock and a hard place" where I am today....
God bless you for letting me 'vent' a bit....peace and love, mgl

[Mary L]

Merry, you are a wonderful daughter and you are doing a great job and making your Mom's final days happy for her. She sounds like a very strong woman and you are also. Have you talked to her oncologist about Hospice? He would know when it is time. It might be helpful if they could come and give you a break every day. I took care of my sister at the end of her life and Hospice came everyday at the end and they would tell me to do something for myself for an hour. It is a very difficult thing to do but when you look back on the quality time you spent with your Mom, you be so glad that you were there for her. I will pray for your Mom and also you. Best Wishes!!! Mary L

[NanaJoni]

Merry - God bless you for all you are doing for your mother. It sounds like you've done everything possible to make things as good for her as you can but it also sounds like you need some help at this point. I agree with Mary L - it's time for hospice care. The care they will give your mom not only is the medical care but, more important, the emotional care for her and for you. Your oncologist should be able to help you set that up. You are not being selfish for wanting things to be they way they were before your mom became so sick. And, believe, me vent away here because you will get enormous amounts of support from people who truly understand what you are going through. So, don't wait - contact someone today to get the hospice care started and ask if there is someone you can turn to for counseling and support as you travel this difficult road. Your mother must be a wonderful woman to have raised a caring daughter like you.

[Elizabethtx]

I wish I knew exactly what to say to make you feel better. You are doing everything you can to help your mother. At this point it sounds like she needs to decide where she is headed. It is all about choices. I am sorry she feels too sick to fight. Get some help through hospice care. I will pray for you both!

[Jackie07]

Sorry for the situation. You sound like a very level-headed person who just needs an outlet to share your feelings. Let us know how things are going. And know that we are praying for both your Mom and your family.

[Trish]

Thanks for sharing your story with us. Your mother is very lucky to have you as her daughter. It is important (and not at all selfish) to take time to care for yourself. Your well being is important for both of you.
Trish

[Colleens_Husband]

Merry:

I took care of my wife, Colleen and I know what you are feeling about all of this. This can easily be the most frustrating and taxing thing you every will do in your life, and it also can be the most rewarding thing you can ever do at the same time.

I hear what you are saying when you mentioned that you do not know if you are doing things the right way. It really doesn't matter too much if you are a perfect caregiver. What matters is that you are a caregiver. Just being there and trying is enough. You aren't a medical professional, you are just a normal person doing the best you can and that makes you a saintly person in my book.

Finally, when I was getting overwhelmed taking care of someone with chemo, raising two children, and trying to keep a business running in bad economic times, someone said something that really opened my eyes. When the oxygen masks fall from the ceiling of the airplane, the parents are supposed to put their oxygen masks on first so that they can effectively care for their children. This is a very sensible thing for the health and safety of both the parent and child. Likewise, you need to take care of yourself in much the same manner as the oxygen mask. If you get emotionally and physically beat down, then you will not be able to care for your mom. If you need to, arrange hospice care for an afternoon (and if you are clever, you can get it for free) and go take a walk, go to a movie, spoil yourself, do whateveer you need to do to recharge yourself. If you do this, then you can do a much better job caring for your mom.

Being a male person, I am sometimes plagued by the delusion that I can be Superman. I can do anything, endlessly without respite, without thanks, and without help. This is, of course a useful form of madness, but it is madness all the same.

Merry, please take excellent care of yourself. The path you are following is not easy, but you will ultimately be very glad you followed it. Remember that you are not alone. We are here for you. You are in our hearts and prayers.

Lee

[Jackie07]

Perhaps to seek a 2nd opinion?

Chemotherapy for lung cancer can be harsh. The Mother of two of our church members had refused chemo after just a couple of rounds 13 years ago. Her local oncologist had stated she'd not last more than 6 months without chemo. Her daughters took her to MD Anderson for consultation and they changed her medication. She lived three more years with good quality of life - attending church regularly, even gave a public testimony one time, until a couple of months before she passed in 2001.

[Merry]

Thank you very much for your kind words and thoughts. I try to do the best I can but sometimes I forget to be as nice as I can be and Mom and I will 'spar' like we have done all our lives but this time I can't just go home and leave her alone for a few days. Usually when that would happen, we'd not talk for a couple of days and then I'd call her to see if she wants to go shopping and we'd act like nothing happened. It's so different now but then I think the last thing I should do is treat her differently.
I'm walking a rope without a net and I'm happy I thought to see about cancer care message boards because I am alone in dealing with this pain, and it's a pain I never have felt before. Life is so good but it sure can suck sometimes.....

[Mary L]

Merry, Treat your Mom the way you always have. She knows you love her unconditionally. You are doing a wonderful thing for your Mom. I'm glad you found us. Mary L

[Merry]

Thank you so much Mary! You're a superwoman yourself to be able to take the time to respond to my posts when you are fighting your own battle. Many good vibes to you and it just goes to show how tough we women are!

[schoolteacher]

Merry, thinking of you today. I understand about you and your mom sparing. My mom and I do the same thing. Hope you have a great day. Hope your mom is doing well today.

Amelia

[Merry]

Thanks Schoolteacher!

We went to the doc to see if her lungs needed to be drained. It's just awful to see how good she looks and yet the cancer is all thru her body. The family doc answers our questions better than that oncologist. She can't have radiation or surgery because it wouldn't be worth the discomfort because the cancer is everywhere. She says that it's in the lung fluid, and because the fluid leaks out, cancer cells go all over the body. Doesn't that just suck? Takes away all shreds of hope. I don't know how people can get thru anything bad without hope. How does a fatally sick person get up every morning knowing life can end any time? I don't know how she does it, but I give her all the credit in the universe for doing it. I'm the one who seems to be despairing the most, lol but she doesn't know it. I tease and mess with her like I've always done.
I'm just so tired. I never seem to get enough sleep. I hate my old bed, I hate being "stuck" in one room, I miss my own home, my husband and my dog. I miss having 2 bathrooms! lol Listen to ME whine when she is the one going thru hell. I just thank God she's having a good stretch of days since she decided to not take chemo anymore. It made her so sick and nothing helped the nausea and we have just about every pill they can perscribe. Even pot pills which I think I'll take since she can't..lol Wink!
Thanks for "listening" to my type. I'm just so pissed off and stressed so thin and wishing for remission so I can at least THINK about flying back home for a little while.
God bless everyone here....peace, MgL

[Mary L]

Merry, sounds like you need a break. You are doing a wonderful thing for your Mom. Is hospice coming in to relieve you? If they aren't get it set up. I feel sad that your Mom is going through all of this. It is a very sad time for both of you but you are there for her and I know she is so glad that you are. You are in my prayers and I send my Besst Wishes. Mary L

[Trish]

I'm convinced it is harder being the one taking care than the one with cancer. Please do try and get a break if you possibly can. My best wishes,
Trish

[Merry]

Hey everyone, I've been pretty sick for a week. Had the flu or something and was totally useless to myself and my Mom. I'm thankful that she was able to do for herself for a few days. I feel guilty as all hell but I had my head in a bucket and couldn't help it. Got some meds from our doc and it's clearing up the ear infections and upper res infection. Leave it to ME to get BOTH ears infected! I did get her to the doc and for some tests on her lung. She'll have to have it tapped next Mon, and Doc increased the Lasix back to 80mg a day. Sigh..she can go into Hospice but she refuses to do it. She was told that it doesn't mean she's dying right now, and that she can opt out anytime she wants. They'll stop by to check on her just like the Visiting Nurse does now. I can't say it to her, but it would help ME so much! Jeez..selfish bitch, aren't I??! I don't talke much to any of my old friends or visited anyone because I am always here with her or taking her whacked out dog for a walk. lol It was almost nice being sick because I slept for days and I never get much sleep anymore. I miss my husband but going back to the SW is out of the question and he can't come here either. Sorry everyone, I'm whining again and that's not what I mean to do. Thanks for putting up with me....peace...

[NanaJoni]

Merry - whine away. It's very therapeutic and all of us understand the pressure you are under. That kind of stress opens you up to so many physical and emotional ills. Just unload on here and try very hard not to feel guilty - it's the most wasteful of all emotions.

[Merry]

I'm sitting on my bed crying and thanking God I found this site and for you wonderful ladies who have gone thru so much yet have so much to give to a stranger.
God bless all the Pink Ladies everywhere....

[Trish]

It's pretty tough when you think getting sick is a break! Do your best to take care of yourself in whatever way you can. Does your mother know how much it would help you if she could get a little more professional support? Don't apologise for sharing these things with us. It's not whining, it's survival.
Yours Trish

[Merry]

Thank you very much Trish. I am not sure if Mom understands that it would help me if she had Hospice here at the house now. They've told her that she can start it now and then if she feels ok, she can stop it anytime. Today she said that she didn't want it. After the Visiting Nurse left, she told me that she wouldn't have a doctor anymore if Hospice stepped in because they would be the ones to distribute any meds she would need. I don't recall the Hospice Nurse I spoke to saying it that way, and I said I was pretty sure she would be still be under her doctor's care. They're suppose to call and talk to her to explain things that she'll hopefully understand.

She has an appt to have her lung tapped on Monday, which was HER choice of day to go in, instead of going in sooner, like on Friday. Well, tonight she told me that her oxygen level was down to 78% just from walking outside and back in. It was ok yesterday. And it's fine if she's sitting or laying down. The last time this happened it was because she puts treatment off til the last second and then I scramble around like a crazy person trying to take care of her, change appointments and generally freaking out because I can't help her other than get her on her oxy machine and make her comfortable.

So tonight I will be too worried to sleep much. I don't know if the hospital will take her on Friday if her levels are worse because her appt is on Monday and they said she can't have any freaking aspirin 5 days before they tap. I told her that this is getting hard on me trying to make health decisions about her care and how soon she needs this or that. All she said was "not to worry, she'll be fine!" LoL THIS IS WHY I'M CRAZY! LoLoL

My Mom, dying from Stage 4 Lung Cancer, and the "tappers" are worried about her having aspirin?? And I think I'm the one losing my mind..lol

So, I guess unless she's bedridden, she won't get Hospice started. And I just hang around doing what I can, being there for her, and sometimes wishing I could go back home and be with my husband and our dog in the desert and this is just a bad dream.

There, I've said it, I'm selfish and not feeling like such a good daughter....but thank you for letting me type away some frustration.
God bless you and keep you from harm....peace, G

[schoolteacher]

Thinking of you, Merry.

Amelia

[Merry]

Thanks so much Amelia....thanks to everyone here who has been so nice to me! I feel like a bitchy, whiny complainer when what my Mom is going thru is so much worse and she never complains...I don't feel worthy to be in the same universe as she is sometimes. God bless all of you here! Peace, G

[Trish]

It sounds like she is scared of the word "Hospice". It would be good if they could describe it in terms of giving her the best quality of life for however long she is with us. I'm sure they and you have tried your best to frame it positively so I can really understand your frustration. Thinking of you,
Trish

[Merry]

Thanks Trish for your kindness. You could be right about the word scaring her, hell it scares me! I hope the nurse will come and talk to us about it so we can figure something out. Mom seems to think that if she gets into hospice she won't be able to go and see a doctor anymore because they'll handle everything. I don't know how it works but I can ask.

Sorry it takes me so long to get back here sometimes. But I can't get online every day. It's hard to keep up with things here. I really appreciate the feedback I get and the good vibes from you all.
Take care, peace, G

[Trish]

I too hope the nurse can come and talk to her and perhaps allay some of her fears.. She really needs to feel she has some control and I'm sure most people would feel the same way in her situation. Don't feel obliged to come online and reply-you've got more important things to worry about. I hope you are finding ways of sustaining yourself during this difficult time.
Trish

[Jackie07]

Merry,

Explain to your Mom that 'Hospice' is just a different 'billing' and if her condition improves, she will not stay in hospice.

My late Mother-in-law was in the nursing home when her condition went 'down hills' and was placed under Hospice. (She stayed in the same room, but received more attention because of the visits from the hospice nurse.) A couple of days later, when all the family members were gethering around her to say 'good-bye', she 'perked up' and became quite normal.

We suspected that there might have been a 'natural bypass' that had cleared a blockage somewhere in her brain.

If your Mom is doing well without receiving active treatment, Hospice for sure will take her off their program in no time.

[Merry]

Hey Trish....can I ask you what kind of dog is in your pic? It's cute and wooly looking, lol.

I can understand Mom's fear a little bit even tho she knows the outcome of this damn cancer racing thru her body. But it's not like Hospice is a death sentence. That's already determined. It sure would help me if Hospice came to "spell" me so I could just go out and not worry about rushing to do things and get back home. She doesn't see it that way, how it would be a relief for me. I know that sounds selfish, but I just miss my husband, my dog and my desert....I begged her to go back to NM with me. We'd drive and have a ball. I have to "adopt" her whacky boxer anyway so she could live with us and we'd take care of her. And she'd see how her dog will get used to a new environment. But, I also understand how she doesn't want to leave her own home and familiar surroundings. I miss my own home and my yard and I have another boxer out west and I miss her too.
I'm also trying to convince her that an electric wheel chair would help her get around. I want her to get that scooter you can ride outside so she can go on walks with me. Her legs hurt for some reason and she gets too short of breath and her pulse goes way high if she tries to do too much. She has the lamest excuse for not getting a scooter....the guy has to come over and show her how to use it! WHAT? LoL He can show ME and I'll show her! It's so funny because when she first got a riding lawnmower she wouldn't let me teach her how to use it either. LoL I even got her a walkman so she could listen to her music while she mowed. So, I was the one who had to mow her huge yard, lolol..oh my Mama! She's got to be the best con artist, lol.
I wish I could get some decent sleep and rest. I'm mentally frazzled trying to care for her house, her yard, (if I don't do it she'll try and I can't let her do too much) the dog, her and my brother. He's 42 but Mom took care of him (and his gramma) all his life so he can't do anything for himself. Makes me crazier than I already am, lolol

I appreciate you "listening" to me. I don't have a place to go to "whine" about all of this. I'll tell ya what, I never knew what stress was til I came home to take care of my Mom in her last days. One of the docs said she'd not live past Christmas and it's almost Easter....she's a tough ol' bird! Again, thanks for letting me ramble...God bless you..and what is your dog's name? Does it have ears, lolol I'm sorry but it looks like a curly gray lamb....a cutie for sure!
Take care, peace, G

[BonnieR]

Merry, I just came upon your thread. Let me say you are a strong woman, handling the impossible with good humor.
My question is this: have you (or someone) actually told your mother how much it would mean to YOU to have Hospice provide some care? If it was put in those terms, she might be more willing to allow them around. It would be taking the scary focus off of her and making it sound more like a respite for you. Which it would be, of course.
Keep the faith.

[Trish]

Oh Merry, my head spins when I think of what you have to contend with. I too would be desolate without my husband and my dog, and I might even miss my kids! Boxers are such wonderful dogs. Archie is a "schnoodle" which is half schnauzer and half poodle. In Australia, or may be just here in Melbourne, we are big on crossing lots of different breeds with poodles so that they don't shed hair and so are less allergy producing. At least that is the theory. It started with "labradoodles" which were bred for people with low vision who had allergies to the usual labrador. It has become a bit of a joke with people and their "oodles"-comedians could be forgiven for sending us all up. Anyway our dog Archie is utterly adorable and is having a holiday at the beach at present with my sister who also adores him but doesn't feel she can commit to her own dog-mainly because she provides such a dizzingly high standar of care! Hmm-maybe she reminds me of someone! The kids will be very relieved when he comes home tomorrow.
I can also imagine it would be hard to be without your beloved desert-it really is a very difficult time in your life and the main difficulty is you don't know how much longer it will last-it could be a long time. I'm a bit concerned she may outlast your resources. Don't get me wrong I hope she lasts a long time but not at your expense.Your darling mother does sound like a fairly practiced con artist but you've been such a good daughter for such a long time you don't want to blow it at the end. I am reluctant to make any suggestions as only you know the situation intimately and only you have to live with your decisions but from the other side of the world it seems like you would be justified in the occasional ultimatum (to your mom, to your brother?? ). Do they realise that your resources (like everyone elses on the planet) are finite?
Anyway come online and "ventilate", as my middle daughter would say, any time.
Stay well Trish

[Merry]

Ahhh...a schnoodle! My cousin has a labradoodle named Lucy. She's so sweet but kind of too passive and wimpy for some reason. Can she be taking after her owner? LoL I know where you're coming from about my Mom and her time on earth. She doesn't see her oncologist anymore because she doesn't take treatments so any check ups come from the family doc. I don't know if that's the "right" way to do it, but it's her way, so it must be ok. I'm getting so tired that I don't trust my decision making anymore, I could sleep for a year! I don't think my brother cares about how this is affecting me, he's just happy that his life can go on as usual and that someone else is "doing" for him what his Mama did. They're talking now about the garden and he's telling her how to open up the plastic covering he has on some early plantings....like she has the strength to do it! She is short of breath, her legs hurt, and she tires so easily! CRAP! I wanna live in HIS world! LoLoL

Bonnie....I believe the visiting nurse has told her how much help it would be for me if she was in Hospice but she somehow tunes it out I guess. I think when she's having a good day and "allows" me to go to the river to walk the dog for an hour or so that's my respite and enough for me. When the nurse comes I hope to be home so I can take him aside and speak with him about Hospice and what it all means. I could SCREAM about how I wish I had time to do something I like to do instead of taking care of this grungy house and my lazy brother. Looking after Mom is enough of a job, plus her whacked out dog. I really can't say anything to her about how Hospice would be a help to me because it sounds so selfish and mean of me.
Ahhh helllll....I don't think I'm all that strong....just doin' for my beloved Mom the best I can.
Thanks ladies for your support and allowing me to "ventilate!"

God bless you all...Peace, G

[Trish]

Don't we all wish we could live in your brother's world! Glad you know some oodles too. I find them (and their owners) a touch embarrassing like I joined a club I didn't mean too.Keep ventilating and doing whatever you can to stay sane,
Trish

[Merry]

Cripes...I was watching CBS Sunday Morning and it was all about pets, mostly dogs. Americans donated 1.something to the Haitians for the earthquake they had, but spent something like 48 billion on their pets! There are something like 156 million pets in America so half of the country owns an animal, or I should say an animal owns them/us! I think that those mixed breed dogs are alot healthier than purebreds because they're interbred to keep the breed pure. Not as large a doggy gene pool, lol. We had mutts when I was growing up mostly. I only got into boxers because years ago a kid I knew was going to have to give his up, and Ty was about 6 months old so Mom and I took him in. He was just like that cartoon dog Marmaduke, which I don't know if you get in your lil' corner of the planet. Then when he went across the Rainbow Bridge, (here's a link if you've never heard of it) Mom took in a female boxer named Daisy who was so sweet but neurotic. Her previous owners got rid of her because she barked. WTH?? And she rarely barked unless someone came over, jeez. Some people should NEVER be allowed to own a dog!

This boxer she has now was a stray and he's got some serious mental issues. He bites but not out of anger, it's fear. I watch The Dog Whisperer, Cesar Milan and I've been using some of his techniques and it's helped. The boxer my husband and I have out West is a sweet and mellow girl and I am hoping and praying that Shooter and she will get along when the time comes for me to leave here and take him out to meet my husband and Sage. I'd hate to have to get my own apt just to keep Shooter alive....if he gets too mean I would have to have him put down. He bit my brother really bad when he was setting up an oxygen tank for Mom. Shooter is scared of the tanks, but he likes it when Mom will let him breathe some of it, lol. He is overly protective. But a good dog most of the time.
I can ramble on about dogs forever! There's a good reason that to spell the word dog backwards is God. Dogs are all about love and that is what God is, pure love.
Poor Mom...I saw her sitting out on the deck in the sun and she looked so faraway and alone....even with people around this dying is a road we have to take alone, and it just sucks. Trish, I wish that she would just fall asleep and not wake up. I horrify myself when I think that but it's going to happen anyway right? And it would be so much less painful for her. Her legs hurt and she is so short of breath when she just stands or walks from room to room. It's mostly expected but it's limiting the things she wants to do like just work in her flowers a little bit. I don't want her to just sit around staring at a tv set waiting to die, better to be outside in the Springtime air doing something she enjoys....I don't know what is right or wrong anymore. I can't think and I'm tired all the time. When I had cancer I wonder if she felt this way? But, mine was caught in time and it's been nearly 20 yrs since they removed my 'babymaker' and I guess God's plan was to make me better so I could be there for my Mom....lol Mysterious Ways!
Well time to make Mom some breakfast if she can eat. She had one of those granola bars and says it made her so full she feels like a stuffed turkey. lol It's all that fiber in those things.

Take care and thanks for sharing your time with me! OODLES of ODDLES!! LoLoL Peace, G http://www.cyberpog.com/popups/rainbowbridge.cfm

[Trish]

I could "rabbit" on about dogs for ages too. And I'm very guilty about the resources they consume. But I can't help loving Archie never the less.The insights pets give us into the relative contributions of nature and nurture could keep us posting for ages! But I'll cut to your mom (feels strange, we say mum in Australia). When I realised I had a 'terminal" condition (don't we all , its called life?)I started looking for books because I really wanted to know what it was like to die. I'm a believer in hoping for the best and planning for the worst. I had a friend and work colleague who would also read the books so I had someone to share with. My sisters ended up reading the books too which was really great believe it or not. The saddest I read was an account from the point of view of a young woman with cancer (early 30s and 1 year old twins, journalist) with sections from her husband and sister. Close to the end her husband tells of them sitting with the twins at bed time, him with one and her with the other, and her just disconnecting to the point where the little one on her lap (all of 18 months) slid off and joined him and the other twin. That was when death became real to me. It is not being able to be there for those you have sworn to protect with your life. One can really only go there on ones own and you can only let your mom go when the time comes. It's her journey. Just before my mother- in- law died she was very agitated and my husband and his brother were trying to settle her down and make her lie nicely in the bed. She was saying things we couldn't understand and the boys were hanging over the side of the bed asking her what she was saying. Eventually she said "I didn't say anything" and I realised it was time to let her go. It was the last thing I ever heard her say and it was clear that we had to stay behind and have the grace to let her go. She died only hours later. You are doing the best you can but it is her journey. I think you are right it is like birth in that it is one of the two really important events and we can only do it our own way. I hope she doesn't have too difficult an end. I think of you often,
Trish

[Merry]

I was thinking about getting Mom some books, but her vision is poor and she has a hard time reading the paper with 2 pair of those drugstore magnifying glasses on and a magnifying glass.
I bought a large puzzle for her to do and it was originally my plan for us both to do it but it's on a desk with only 1 chair. I advise her when she gets stumped on whether some pieces fit, but it's her's to at least not sit in front of the tv all day. It seems that I'm the one who is watching her fade away and I see her in her weaker moments when she doesn't know I'm there. I don't know what to do or how to help except keep cleaning the house, fixing my brother's lunches and dinner, feeding and walking the dog, working on her flowers for her and I try to entice her appetite which she is losing. I still get mad at her and I don't mean to, really but she's still my "old" Mum (a nod to the Aussie Lady, lol) who has managed to annoy me off and on my whole life.
Then I feel guilty knowing that in awhile I'll be crying and wishing that she was there to piss me off again! What a paradox, lol
I had to get her car worked on today. It's gonna be at least $1400 but we need a car. It's really my car anymore anyway and it has to take me back to New Mexico when the time comes. I've been sitting here at the car shop for 7 hours and I'm down to 2 hrs on my lappy (my laptop lol) and I finished my book. I'm sick of watching ESPN and I still have to get groceries and have never been gone from Mom this long. CRAZY DAY! I need a vacation, lolol a day at a hotel where I can sleep for 12 hrs would be so sweet!
Oh since you're a dog person I have to tell ya this story. I was walking that whacked out Boxer Shooter and I saw some pretty daffodils growing along the road so I stopped to take a pic of them. (I take my camera everywhere). I was crouched down in front of a group of them when Shooter wandered over, cocked his leg and PISSED on them right when I took the pic!! LoLoL Mom was so amused when I showed her. I had to post it on my facebook page so my family and friends could see. What a nutty dog! Ok, that's my tale of woe and not so much woe for today. Thanks for letting me bore ya...and tell Archie woof bark bark!

Peace, G

[Trish]

Shooter and the daffodils..hmmm...says it all....a dog of not so fine sensibility. Glad it gave your mom a laugh though. Keep up what you are doing, its very impressive. I'm sure if my kids ever did for me what you are doing for your mom they would get super exasperated with me, quite understandably. It's called human nature.
Trish

[Merry]

Happy Easter Ladies and Gents! It was a pretty good Easter for us. Mom was outside in the Spring sunshine and enjoyed looking at her profusion of Spring flowers. She planted 50 pink tulips for breast cancer and kept saying that she "just wanted to live long enough to see them bloom." Well, she has! My cousin Lauri came over for dinner and we sat around and shared some laughs until Mom got tired and needed to lay on the couch and "suck some oxygen." lol As she calls it.
They tried to tap her lung Friday (wouldn't ya know I was sick as could be again? lol) but couldn't get too much fluid out for some reason so her shortness of breath didn't go away like it has before. I'm hoping it's not a sign of worse decline..oh jeez, I made a rhyme, lol. I think I'm going to call her old radiologist and ask if he thinks she can have radiation to maybe shrink the tumors in her lung. She isn't taking chemo because it makes her so sick so maybe that would help. Her oncologist said radiation wasn't an option because the cancer is in her blood so therefore all over, but that seems like dumb reason to me! And to Mom. All I can do is ask.
Anyway, I'm just pleased that today was a good day. I hope God blessed everyone on this Easter..peace,

[Trish]

Glad you had such a nice Easter. We have been treated to superb Autumn sunny days over here too. Hope things continue to go as smoothly as possible,
Trish

[trasia]

hi merry,
just want you to know that you are not alone.. and that I am thinking of you and your mom.

[Merry]

Hey Folks...haven't been able to get here lately. Been busy around Mom's house. Trying to keep it clean, do laundry, take care of the dog, cook, and watch after Mom is taking all the time I have and then some. I miss my husband and our dog, and the desert. It seems that in the walks I take with Mom's dog, he ran into some poison ivy so now I'm one itchy b*tch! lol
Mom wanted to get her hair cut, but I decided to give her a perm. She has very short, fine hair but I got the curlers in and she has all these pretty soft curls now and she looks like an angel! I tried for years to get her to perm her hair and she loves it! She doesn't need a hair cut now thankfully. She gets very tired and short of breath if we go out and she has to walk for too long. We had lunch with my cousins and she was fine til we walked around the Dollar General store so she could shop some. I know she misses shopping but it takes alot out of her. She won't carry her oxy tank in public (her stubborn pride, lol) so she gets worn out faster. She says she feels like she'll have to have her lungs drained by next week, so a visit to the doc is forthcoming. It's like watching someone slowly drown in "invisible" water. The doc put her back on prednisone (steroid) but it jacks up her sugar to over 500. So that could cause her to go into a coma. So I am stepping her down from 2 a day to 1 and then she will have to stop for awhile til her sugar regulates. The only thing is that the steroids make her feel so good! She can move around easier and not as short of breath but having her sugar levels that high are bad too. See, she needs to have a Hospice nurse here to help ME when it comes to her meds. I tried to tell her that but once again, she is being stubborn, so I just muddle along trying to do my best.
Well, thanks for letting me ramble on! Wishing you ladies a fabulous Mothers Day and I hope every moment is a moment of joy and love! Peace, G

[Mary Anne in TX]

Merry, what brings you joy? Maybe a tub full of bubbles and a phone conversation with your guy?
What brings your mom joy? It could be the littlest thing that makes her see and feel like her 'ol healthy self.
I spent 3 years caring for my mom. I figured out that the little things that brought smiles were the best and the things I still can smile about. Would someone coming to clean ever so often make you smile?
Just think of the things that bring joy. There's no perfect way.
Much luv to you both. ma

[Trish]

I'm very impressed by how you "muddle along"-should we all be lucky enough to have such daughters! I had a lovely Mothers Day- kids made us brunch and we went to a delightful film called "Babies" which (amazingly enough) I thoroughly enjoyed. Hope your day brought you some good times.
Stay well. Trish

[trasia]

merry,
hope this will help you in any way..
http://www.cancerstory.com/caregiver.jsp

[Merry]

Thanks MA in TX....I get out of the house every night for an hr or so to walk the dog. Mom's got a big, rowdy boxer that strayed into her life and she never taught him any manners, or discipline so I'm trying to get him to be a better dog. He'll have to come live with me and my husband and our other boxer when I go back to NM. I'm just overly frustrated trying to care for her, and her house. She's a hoarder and there's so much crap that I can't even make a dent in it. And I'm a fanatical type housekeeper so this mess makes me crazy. She has been taking care of my younger brother all of his life so he has no clue on cleaning up after himself. If I don't cook for him, wash his clothes, pick up after him, or make his lunch, Mom tries to do it. If I say anything to him, it turns into a terrible argument so it's not worth it. I just try and bite my tongue and continue on. And it's awful having to live in this house. It's so cluttered, dusty and dirty. I can't clean enough yet it never looks better. She has a cockatiel that never shuts up so that keeps me from getting any decent rest.
I wanted to take Mom to NM to live with my husband and I. He is more than willing to help care for her out there. She won't go. I understand why.
She refuses to allow Hospice to start coming over. She feels like if she does, she's "giving in" to the cancer and will die that much sooner. The "experts" said she wouldn't see Christmas and here she's into Mother's Day already! Thank God! She won't even consider a wheel chair for the same reason. She told the Visiting Nurse that being in a wheel chair is the last step before dying. I tried to explain that it would be the best way to go shopping so that she wouldn't have to be so out of breath by trying to push a cart around Walmart. So no Hospice help and no wheel chair, or scooter, lol
There's some good times too, like a few days ago I gave Mom a perm and she loves her curly locks! She would never let me before but now I can fix her hair for her every morning and she loves it. I pick flowers from her flower beds and bring them into the house so she can enjoy her blooms. The dog makes her smile and laugh and she's happy that he's so taken with me. My brother hates the dog and is only nice to him because of Mom. We go to lunch to see my Uncle or cousin and she enjoys that too. I hope to get her a scooter so she can go with me when I walk the dog.
Sunday she was able to roast a chicken and that made her feel good. If Hospice could start, I think I'd take a day/night and spend it in a hotel room with a large bed, a large pizza and a 6 pack! LoL It would be amazing to get some real sleep away from cobwebs, large, ever growing dust bunnies, and that screeching cockatiel of hers.
I know I sound like a whiny bitch and I don't mean to be. I miss my privacy, and my independence. I don't really know how to talk to Mom about dying either. She's always saying "and when I'm not here anymore...do this or that." I know she's scared and I don't know what to say. Each of us will face our deaths in our own way and all I can do is fix her a cuppa tea and a grilled cheese sandwich, LoL
Some help I am! Not very good spiritual help.
Well, thanks again MA...and thanks to everyone who kicks in with a suggestion or a good vibe. It means a lot to me! Peace, G

[trasia]

merry,
you say or write the things that I would not be able to describe in a vivid and honest way. I love my mother and my daughter too, its like I am in between this 2 great loves and I always felt am not doing enough and wanted to do more for the other, but cant, its always half or even quarter of myself.. thanks for your courage in airing out what I could have not done myself.

I reckon this could be therapeutic and should try it myself.. :) hope you find something fun to do with your mom.. something you will cherish for a long long time..

[Trish]

Merry, doing the things you do for your mom is spiritual help, you don't actually have to say things. Just being there (and you know exactly how hard that is) is more eloquent than anything you could put into words. Believe me I completely understand the claustrophobia you feel and add the cockatiel and it sounds like a nightmare! And yet you keep doing it-the grilled cheese sandwiches, the perms, the flowers. These are the things that give life real meaning if you ask me. I am going to show your last post to my sister-she will completely understand too. I am sorry you haven't got a sister but I am glad you have a great husband back in NM.
Trish

[Merry]

Tras...I get that from my Mom....lolol Takes me awhile to get back here with all the stuff I get caught up in here. Mom had to have her lung tapped, and it didn't re-expand like it did the first few times and she had to have 3 xrays which she bitched about because of the excess radiation, lolol she says THAT is gonna kill her first! It still hasn't expanded, and I'm pretty sure it's cuz of the tumors in that lung and the fact that it's working harder than it normally would. It's just a closer step towards the inevitable end of the road. I was talking to a Scooter Store about Medicare getting her a scooter but the guy tells me that Medicare is more about going as cheap as possible and since she can mostly get around the house with her own power or a cane, they would feel she's ambulatory enough. SO..the Visiting Nurse Assc. is gonna pay the rent for a scooter for a month! It's $250 a month and somehow I'll find a way to get another month if she likes it and can use it. I just want to be able to get it into the trunk and take her to the river where I walk the dog so she can be outside and enjoy Spring. She's being stubborn about it because she has to learn how to drive it and acts like she's too stupid to figure it out, lol.
And so it goes. My brother has decided he doesn't want to go to work and he's using the Family Med Leave Act to get time off. Sadly, he spends the time sitting in the shed listening to the radio and drinking instead of helping his sister around the house or spending time with his Mom. He is lying to his job about Mom needing him home, but he DID take her to the hospital twice last week for the xrays and tapping so I could take the dog to the Vet. Will wonders never cease!?! LoLoL She told him to go to work but again, I went out early this morning to walk the dog around and he was passed out in his car. What a great family I have, eh? LoL If he was truly a decent and caring son and brother, he'd offer to do what I do for Mom and let me fly home to be with my husband and in my own home for a little while. But I know what would happen if I left for a little while...Mom would be trying to cook, clean and take care of him and the dog and herself while panting for air. She insisted on making dinner Sunday and I let her except I peeled the potatoes and got all the pots and pans and ingredients out for her and I cleaned up the kitchen because by that time, she was too exhausted. She kept apologizing for the mess and I just smile and make a joke about it and clean it up. I want her to do whatever she thinks she can do while she can. I can't make her breakfast cuz she likes her oatmeal a certain way and I can't do it her way so she's ok doing it herself. I can't take away all of her 'usefulness' or indepedence and I don't want to.
I truly appreciate being able to 'vent' here and have you wonderful people put up with my complaining. It truly helps me and I wish I could get back here more often. The poor dog came down with Lyme disease and I have to give him meds, give Mom meds, and I just hope that I don't accidently confuse who gets what! I told Mom last night that if she she tries to lift her leg to pee, I may have accidently given her some of Shooter's meds! LoLoL She said she'd let me know...hee hee hee.
God bless you and everyone here. I'm not sure how I found this site anymore, but I think an Angel in Pink showed me the way. Peace, G

[curryalso@att.net]

Merry,

I am taking care of my mom too she does not have cancer but has congestive heart failure. I was advised to get hospice. At first I was horrified, but after talking to people I found out that hospice can help a patient for longer than just a few weeks. They can help her feel more comfortable and even provide drugs and beds that might make her feel better. You need someone to help you and you need to be able to get out and just be outside. If a nurse or aide comes to help you you can at least get out for a half hour break and it will make it better for you and your mother both.

You need to take care of yourself in order to take care of her.

[StephN]

Hi Ladies -
You are awesome to be giving up your life to help your mothers. I have been doing that more lately, but now am in the THICK of it since she is home from the rehab facility. (She broke her upper thigh bone near the hip.)

The expense for round the clock home care is really a lot, so my sister came back from Florida for a while (unknown at this point) and I am here getting her up to speed with everything.

So if I seem MIA, I am not ignoring the boards here, just otherwise very busy.

[Merry]

Been awhile for me to be back here, but I get so little time that getting online isn't a priority, as much as it helps me get away and interact with others. The Visiting Nurse keeps explaining to Mom about Hospice and the drugs that they can give her that will help. There's one in particular that even temporarily shrinks tumors. She refuses Hospice. She says she isn't ready for them. So, I am left to deal with her alone. It wouldn't be so awful if my brother would do something besides get stinking drunk every day. He won't even go to work, using her illness to abuse the Family Medical Leave Act by lying and saying he needs to be home to help his Mother. Ha freaking Ha! He's a spoiled rotten man and unfortunately, it was my Mom who did this to him. He has been taken care of by her his whole life. She has picked up after him, washed his clothes, hung them out to dry, folded and put them away, cooked and made his lunch. So, if I don't do it she'll try to do it herself and she can barely walk because her oxy levels are low when she does. I can't tell you how angry I am at him every time I have to re wash the floors because he tracked in crud or wiped off the counters because he eats like a pig. He'll wash his clothes but leave them in the washer. I'll do it all for my Mom but I'm stressing so bad over her illness and trying to take care of her that the Family Doc wrote me a script for Zoloft, lolol I need uppers to keep me going, not something that will turn me into a zombie! I can't talk to my brother because he never wants to hear it. I'm just tired and I want to go home to my own home where my husband is and where it stays clean, and the weather is always sunny and warm. I've not seen the sun for over a week and all it's done is rain. I have chronic sinus problems and the headache never goes away.
My cousin is having a picnic and invited Mom and I but she can't go because she says her lungs are too full of fluid and I should go. I told her I couldn't possibly have a good time with worrying about her! I called the hospital because she has a standing order to have them drained but it's a holiday weekend and she'll probably have to go thru the ER to get it done, and she refuses to go! She told me to go to the picnic, that my brother will watch over her but he's outside drinking. That certainly makes me feel SO much better!! Maybe I should go anyway and not think about it?
I'm so sorry for rambling on and whining but this is the only place I have to bitch, and you guys are super for putting up with it. I did get to go out for lunch with a friend yesterday and I had a beer for the first time in months and it felt so good! I even bought a cool Western hat for when I go back out there, lol. I'm glad that God has let my Mom be here longer than she was supposed to be, but it's making me crazy living in her packrat house and never getting enough sleep.
She wants to fight this disease but won't take chemo anymore because it makes her so sick. She also will not go back to her Oncologist because she feels uncared for and all they want to do is give her chemo. She wants to try radiation but they said it wouldn't work. I'm going to call her Radiologist Tuesday and ask him what he thinks, if I can talk to him at all. The cancer hasn't spread to her organs according to the last test, and it's only in her left lung but the tumors are growing. I've never seen such a lack of concern and care by the Oncologist and don't blame her for not wanting to go back. But she needs to do something besides watch TV and wait to die. I can't even get her a scooter because Medicare says she can get around the house well enough and won't pay.
Well, I've complained enough so I'll go now. A big hug to everyone who is caring for their Mom or another loved one, and more hugs to all the survivors! It's Memorial Day, keep the memory of the ones who have gone before alive in your hearts..peace, G

[Trish]

It doesn't sound like things are getting any easier. glad you got out for lunch and I hope you go to the picnic with your cousin.
Thinking of you,
Trish

[Jackie07]

Merry,

Below are resources for caregivers provided by NBTS:


The Family Caregiver Alliance (http://www.caregiver.org/) provides fantastic support for caregivers. Check out their website to search through their Family Care Navigator (http://www.caregiver.org/caregiver/jsp/fcn_content_node.jsp?nodeid=2083)for local resources and support in your community. For tips on ways that caregivers can care for themselves, take a look at the National Cancer Institute's Caring for the Caregiver (http://www.cancer.gov/cancertopics/coping/caring-for-the-caregiver/page1).
The AARP Foundation's Prepare to Care (http://assets.aarp.org/www.aarp.org_/articles/foundation/aa66r2_care.pdf) provides A Planning Guide for Families where caregivers and patients can keep track of appointments, questions for their doctor, finances, and helpful resources found along the way. The information is geared more towards adult children caring for aging parents, but many of the checklists and action items can be adapted.
For spousal caregivers, try Young Cancer Spouses (http://www.youngcancerspouses.com/) or Well Spouse Association (http://www.wellspouse.org/) to find more information and support on how to best care for your partner.
To connect or speak with other caregivers over the phone or online, read more about our Caregiver Support Network (http://www.braintumor.org/patients-family-friends/find-support/support-network/caregiver/).

[Merry]

Trish..I think you're right..my husband who took care of his wife in her last stages tells me it's not going to get better and he's right. But I think I could handle things better if my brother would pitch in instead of creating more havoc and tension and treating me like I'm some kind of interloper. Or space invader, lol
I just got a bit crazy the other day and this is the only place I can vent a bit....you guys probably think I'm completely crazed!
Thank you for putting up with my raving lunacy...and it's not even a full moon, lol. The weather doesn't help either, it's been raining and gray so I can't get out of this house even to be out in the yard. I miss my privacy, but I know I'll miss my Mom more....hell, I already miss her.

Jackie..thanks for those links...I'm gonna look into them. Mom says she doesn't want "strangers" in her house so she won't let Hospice help out. Too bad, I'm gonna have to explain that I need some help too. Man, this is what I get for being so rowdy as a teenager...eh? LoL
Thanks again and God bless every lovely one of you!

Jackie...and God Bless Texas! The hearts of Texans are as big and wide as the Lone Star State! I'm kind of a neighbor because I live in New Mex..about 3 hrs West of El Paso....in the heart of the Chichuachua Desert....beautiful land! Peace, G

[BonnieR]

Merry, you were at the end of your rope last time you posted and we are glad to help you hold on!
As has been said before, maybe you just need to set some boundaries there and say how it has to be. That the help is for YOU and you can't keep on without it. That you need some respite. Period!
Your brother is a whole other story. I suppose he does not consider sobriety an option?
I always say "keep the faith" and I hope you will! It is not always going to be like this and you will get through it.
PS: Zoloft will not necessarily turn you into a zombie! But it sure might take the edge off. Why not try something for stress?

[Trish]

We are with you in spirit. Just keep doing what you need to do...and vent as much as you want.You are a sane person in a really difficult situation.
Trish

[loveher]

Merry, you are truly impressive. Don't worry, keep venting here!

[Jackie07]

I'm 5000 miles away from home, so I've not been taking care of my parents. But my siblings have been spending time at my parents' apartment. Thought I'd share what I know about taking care of my Mom.

My Mom is turning 88 in a couple of months. She has been treated for Non-Hodgkins Lymphoma is a 13 year survivor. A couple of years ago, she developed congested heart failure. My parents have a live-in housekeeper and my siblings take turns to be with them especially on the housekeeper's day-off (usually on Sundays)

When my Mother's cognitive ability declined due to UTI (or congested heart failure - I can't remember which one), my oldest two brothers were spending time there, but didn't do anything for several days. We still can't figure out the reason why they did not take action. It wasn't until my Oldest Brother-in-law went for a visit that an ambulance was called. Mother's life was saved in the hospital.

I think some men are more 'passive' when it comes to dealing with crisis. At least that's the case in my family. Mother loves to tell the 'old stories' when Father didn't do anything while Oldest Sister (then 19) was fighting pneumonia in the hospital 40+ years ago. The 'miracle' antibiotic cost a fortune and the hospital wouldn't administer the shot until money was paid. Father was dejected and followed 'order' like the good soldier he's always been. Mother went to the doctor's office, pounded the desk and 'ordered' them to give Oldest Sister the shot "this minute!" She'd take care of the payment later.

We are compiling writings to commemorate the 60th anniversary of our family's 'relocation' from mainland China to Taiwan. Oldest Sis has refused to contribute. Memory brings back too much pain ...

[Merry]

Good for your family though for taking care of your Mom! I would have loved to have sisters or brothers to help out so I could take a break once and awhile. Your Mom sounds like one scrappy, tough lady! But, I guess I'm just a bit scornful of "passive" men. When you're brought up to believe that men are the "hunters" and take care of their families it's hard to put up with a guy who doesn't take charge and control. That means I have to be the one, and you know what they call a strong woman who is in control? A bitch, lol but it's not a word that I'm ashamed of being called. Means I'm one strong, independent woman and after these last 6 months I'm thinking there's not going to be much more in life that I can't deal with. Well, as soon as I stop being so sorrowful because Mom lost her battle with cancer and I'm in a daze of pain and sadness.

Good luck with your Mom, they're precious and a treasure and I thank God that He gave me 55 years with mine...God Bless!!

[Unregistered]

Merry,

My mom was diagnosed with Stage IV lung cancer in November of 2010. She has metastesis to the bones, liver, and brain. It is August 2011 and she is under the care of hospice. I am the primary caregiver and I have no siblings. The doctors (three opinions) and hospice nurses have said that she has days to weeks to live. We've made it past the days, and are working on the weeks. The harsh truth of all of this is that no one gets to pick their time, and death comes to all of us eventually. Like your mom, my mom is fiesty, but I have watched her slowly deteriorate from a relatively healthy to severly ill woman in a matter of months. You are doing the right thing by your mom, don't worry. Personally, I feel angry, sad, happy, anxious, reflective, ect... everyday, sometimes all at once. I think it's normal to feel uncertain about your ability. But it is your thoughts getting the better of you. I am so very tired of "waiting for my mom to die", physically, mentally, and emotionally tired. Rationally, I know she will be in a better place and in greater comfort when the time comes, this does not mean that I am wishing the time away. Your mom, like my mom has fought a fight that ultimately cannot be won. Unfortunately the best that can be hoped for is a comfortable, peaceful transistion. I know this is not uplifting, just know that you are not alone. I'm not a person of faith, but I wish whatever your higher power is to grant you strength in you and your mom's journey.

Sincerely,

Rick

[Merry]

Hello and how is everyone? Well, instead of being "stuck inside a cloud" I'm still stuck in Indiana! Seems my brother is not happy about having to buy me out of our Mother's house, so he's taking as much time as he possibly can to conclude the contract. I'm getting very, very impatient. I've enjoyed spending time with my cousins and Uncles and Aunts, but I wanna go home! This is my favorite time of year in the Midwest with the temps cooling off, and the leaves beginning to change, and local festivals, but I wanna get on the road!
There's entirely too much sorrow and pain in this house and I think I would heal better if I was in my own home. All I do is cry and feel sad being here. I've cleaned up what she wanted, and I need to be done with the pain of seeing her in every place I look. I don't want to be reminded of the time she was sick and fading before my eyes, I want to enjoy the memories of when she was fiesty and scrappy and we had places to go and money to burn at garage sales!
I suppose that sounds like I am coldhearted, but I'm not. I just don't wanna cry anymore. I lost my joy watching my Mom get sick and fade away, and I need to get it back or I won't be able to carry on...

I hope you ladies (and any gentlemen) are doing allright. God bless everyone and keep you strong and safe. Peace and Love, G

[Trish]

So good to hear from you Merry. I've been wondering how you were doing. I'm not bad. Had flu and chemo reaction so have been out of sorts but am back in town now. Remember you said you didn;t expect to get home till October so I hope you are still on track. No surprise that your brother is dragging his feet about the house but he can't do so for ever. Keep remembering your feisty mom's beauty.
Trish

[Trish]

Rick
How are you? Thinking of you
Trish

[NEDenise]

Merry,
I'm sorry I didn't join this forum sooner. I took care of my mom, diagnosed with stage IV lung cancer, until her death 18 months later. I identified with so much of what you posted...I wish I had been here to support you.

Your mom is at peace, I hope you have been able to reclaim yours too. Two years later, I still think of my mom every single day...but now I can laugh, or smile sometimes...I don't always feel like crying when I remember her.

God bless you for all you did, to make her last days peaceful!
Denise