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Periodic Contributor

Alone Caregiver Barely Hanging On

I am soooo tired. I am a 61 year old daughter/primary caregiver for my 81 year old mother who has lung cancer, kidney failure & diabetes. It's been 2 years. I'm alone. No one to talk to. No shoulder to cry on. I am so full. I have diabetes. I suffer from depression, sleep apnea, diabetes and I am bi-polar. 

 

My mother will NOT accept help from ANYONE else. NO agencies, services, etc. She is too proud and too private.

 

No one can solve this. I just keep going but it would be nice to sound off or just go someplace and scream!

Sorry! 

Demetria

Demetria Carter
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Hi guys,

Well it happened. My Mom passed away on Feb, 1st, 2017. She was in so much pain. We went to the ER again 3 nights before then. It never occured to me that she wouldn't come home. On my God! She was coherent enough to decide that she didn't want anymore surgery. The risk was too high that she would'nt live through it and if she did there would be no quality of life. She called the whole family around her and said her good-byes. Then 3 days later she went peacefully to sleep.

 

Her chair is empty. I am truly alone. I haven't been in her room. I am taking care of her financial affairs because I have to. I am so messed up that I couldn't do the Eulogy at the memorial service. I am so screwed up. I feel so guilty about being so selfish. She is out of all of that pain from so many fatal diaseaes that she was carrying the load from. She is free. 

 

I have spent so much of my time with her that I don't know what to do now. I just sit here.I don't eat, I don't sleep. I take my bi-polar meds and my insulin and I sit. God it hurts so much. My heart is broken. 

Demetria

Demetria Carter
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Dear Demetria, 

i am sorry for your loss. Please take care of yourself. 

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I am so very sorry to hear about your loss. Death of a parent is crushing not matter how difficult the circumstances leading up to it. I hope you are getting lots of rest and taking care of yourself the best you can.

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Demetria I also thought this video about grief and loss might be helpful for you...

 

Hugs, 

Amy 

Recognized Social Butterfly

Demetria I am so sorry that you feel so terrible.    I have found that books  & websites which deal with death & dying to be of enormous help. 

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I think I will go to the book store today or tomorrow. It will get me away from the TV.

Thanks
Demetria Carter
AARP Expert

Demetria I'm so sorry to hear of your loss. I can imagine how must feel - when my Mom died I felt completely frozen and numb and the grief was so overwhelming. I, too, took her to the hospital never dreaming she wouldn't come home. 

 

I'm glad to hear you are taking your meds - that's so important as this is hard enough time as it is. You don't need health crisis to make it harder. Right now just do the next thing. Whatever you need to do next. Try not to think too far ahead. Be gentle with yourself...

 

Are you getting any grief support? Caregivers are so often at risk of "complicated grief" that is harder than usual to get through and is extreme. Your mom as such a huge part of your life. Life after caregiving can be really tricky as our roles change and we try to figure out what to do with ourselves. Try to maintain some of your usual routines - the ones that don't feel too painful. Don't let anyone rush you - there is no set time period or way of grieving. 

 

I hope you get some support for your grief - here are a few places you can look for help:

This is a very emotional time for you so please be careful. If you feel suicidal please please reach out for help immediately - remember these numbers to call: Natl Suicide Prevention Lifeline 1-800-273-8255 or National Hopeline Network 1-800-442-4673.

 

When you are ready, you might channel your energies into doing something to memorialize your mom. Anything from planting flowers or a tree to creating a scrapbook to making her favorite meal to creating a photo pin with her photo on it to watching her favorite movie or creating a scholarship fund in her name. Whatever feels good to you.

 

Thinking of you and praying for your peace. Heart

Periodic Contributor

So far, life after care giving is like no life at all. I am afraid to go out. I feel guilty if I find a moment of peace so I sit in the house alone and do nothing. Without doing things for my Mom, I have nothing to do! I'm so sad if i think about her.
Demetria Carter
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Thank you so much for the support and kind and helpful response. I will try to keep going and take care of myself. I'm going to call my shrink today and try to get a therapist. I haven't seen my old one in years.I don't know if I should call the old one. Financial problems but she was kind about them.. She isn't aware of these things in my life but she will understand how I got here. Any thoughts? I'm trying not to go into a depression hole, I have too much to take care of. Thanks for hanging in here with me. The people around me have no idea what this feels like.
Demetria
Demetria Carter
AARP Expert


@d386481c wrote:
Thank you so much for the support and kind and helpful response. I will try to keep going and take care of myself. I'm going to call my shrink today and try to get a therapist. I haven't seen my old one in years.I don't know if I should call the old one. Financial problems but she was kind about them.. She isn't aware of these things in my life but she will understand how I got here. Any thoughts? I'm trying not to go into a depression hole, I have too much to take care of. Thanks for hanging in here with me. The people around me have no idea what this feels like.
Demetria

Hi Demetria. We are all so sorry to hear of her passing. Your mother is indeed at peace. I hope that the sadness you feel is something you can let wash over you like waves, but not drown you. It will (and has) slow you way way down, but that's okay. It is the only way, really. Grief has its own wisdom and it takes you as you are, has its way with you.  In between bouts, you can try to care for yourself, maybe take care of one piece of estate business (such hassle). 

 

What kind of insurance do you have? I work for county mental health services and we see EVERYBODY regardless of ability to pay. I saw a man for several months who'd lost his wife. It seemed to be worthwhile for him. 

 

Keep writing here, keep us up on how you are, we care and want to hear. With you in spirit,

 

Jane

Periodic Contributor

I'm starting to realize that all of the pain she was in has now ended. She was a very spiritual woman and in the end she was blessed enough to make her own decision about her final chapter. She always said that she didn't want to leave me with that burden.

I promised her that I would take care of myself, but it is complicated. I will get to it after I finish the estate stuff. I am just having so much trouble keeping it together. But it's only been 32 days right?

Thanks for being here,
Demetria
Demetria Carter
Recognized Social Butterfly

@d386481c  Keep us posted on how you are doing.

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Today is a better day. Fresh snow and sunshine!

I'll keep you posted.

Thanks so much!
Demetria Carter
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@d386481c wrote:
Today is a better day. Fresh snow and sunshine!

I'll keep you posted.

Thanks so much!

Sunshine can make such a difference!

Like LaDolceVita said, keep writing, as you have been. 

I hope you can take care of yourself all along, and not AFTER you've sorted out the estate. That is real work, and your needs are ongoing. Whatever and whomever help you feel connected to the world, to other people, to beauty and hope, is a good thing, a braided cord to connect you even when you feel like staying in and taking another nap.

 

yup, 32 days are not very many. 

 

we are with you.

 

jane

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Hi Demetria.  I can understand what you are going thru and often feel as though I am alone.  My 78 year old Mom has been in and out of hospitals since May of 2016 due to diabetes and then numerous UTI's. In October, they found a 6 cm mass above her left kidney. Her and my 85 year old Dad are both living at my apartment.  I lost my job due to excessive absence (resulting from Mom's numerous hospital stays).  I am the only child and sole means of transportation, etc.  Like you I am bi-polar and also suffer from high blood pressure & high cholesterol.  I have no insurance any longer and cannot afford to buy right now.  With that being said, I have put my health on hold.  I am trying to start my own company so I can work from home but it's hard.  Over the next few weeks, I have to take them to the following dr appointments.  Dermatologists for my Dad to have a cancerous growth removed, Cardiologists prior to my Dad having cataract surgery, biopsy of a 6 cm mass above my Mom's left kidney (last week was a colonoscopy) and then follow up visits with Oncologists after the biopsy.  Cataract surgery for my Dad's left eye, with right eye to follow a month later.  It's so hard to have a positive attitude as I get up and cook 3 meals a day, clean the kitchen after each meal, wash clothes, and somehow try and take care of me.  My parents are the same as your Mom, they do not want at home health care, only me.  I have been so angry lately and simply at my wits end.  I cannot even go and visit with friends for longer than a few hours and they are calling.  We must take care of ourselves though, somehow, someway.  Just know you are not alone.  Big Hugs from Texas!  Debra Largent 

Periodic Contributor

Hi Debra!

Thanks for sharing with me. It was so nice to get your response. You are one strong woman! You really make me feel like I CAN keep pushing through. What you are doing is incredible. Us caregivers don't realize how incredible we are do we?!

 

I am having a better day today. Last week my mom had surgery on Monday and again on Friday.

Both unplanned Both for her fistula to try and do dialysis for her kidney failure. It was awlful. I hardly slept all week and my health was completely out of whack.

 

Today for the first time in 10 months her 4 hour dialysis treatment went correctly! what a stress relief for me!  10 mionths is a long time to be stuck in a long dark tunnel, but today, today I smiled!

Hang on! Thanks again for reaching out to me!

Hope to talk Soon!

Demetria

 

Demetria Carter
AARP Expert

Debra writes: “ I can understand what you are going thru and often feel as though I am alone.  My 78 year old Mom has been in and out of hospitals since May of 2016 due to diabetes and then numerous UTI's. In October, they found a 6 cm mass above her left kidney. Her and my 85 year old Dad are both living at my apartment.  I lost my job due to excessive absence (resulting from Mom's numerous hospital stays).  I am the only child and sole means of transportation, etc.  Like you I am bi-polar and also suffer from high blood pressure & high cholesterol.  I have no insurance any longer and cannot afford to buy right now.  With that being said, I have put my health on hold.”

**************

Hi Debra!  This is Jane. Are you able to get unemployment? I trust your parents’ social security is helping you to pay your bills. But, I’m worried that you don’t have insurance right now. I hope you can pay your pharmacy expenses. Because you know how important it is to take your medications. I need mine, too. I’m on COBRA which is super expensive but until my current job gives me benefits, I have to pay. I’m on psychotropics and a statin and diabetic meds… PLEASE don’t put your health on hold for too long!!!  

**************

“I am trying to start my own company so I can work from home but it's hard.  Over the next few weeks, I have to take them to the following dr appointments.  Dermatologists for my Dad to have a cancerous growth removed, Cardiologists prior to my Dad having cataract surgery, biopsy of a 6 cm mass above my Mom's left kidney (last week was a colonoscopy) and then follow up visits with Oncologists after the biopsy.  Cataract surgery for my Dad's left eye, with right eye to follow a month later.  It's so hard to have a positive attitude as I get up and cook 3 meals a day, clean the kitchen after each meal, wash clothes, and somehow try and take care of me.  My parents are the same as your Mom, they do not want at home health care, only me.  I have been so angry lately and simply at my wits end.  I cannot even go and visit with friends for longer than a few hours and they are calling.  We must take care of ourselves though, somehow, someway.  Just know you are not alone.  Big Hugs from Texas!  Debra Largent “

*****

Dear Debra, Please please go out with your friends. You are very busy, yes. But you will become even MORE resentful and exhausted, AND your health will suffer.  Did your parents sometimes leave you with a sitter, at day care, with family, so that they could get a break, when you were young?  They may prefer only you but that is not possible given all that they need.

If you go onto www.eldercare.gov and type in your zip code you can find the agency who’s sole purpose is to help people like yourself and your folks get the help they need. They may be eligible for Medicaid which would then pay for home health care. Transportation to doctor appointments. Perhaps medical day care. You can’t do all of this by yourself indefinitely.

Sincerely,

Worried Jane

Recognized Social Butterfly

Seems there are a lot of elderly parents who do not want outside help!!  I do not feel so alone reading these posts.

AARP Expert


@LaDolceVita wrote:

Seems there are a lot of elderly parents who do not want outside help!!  I do not feel so alone reading these posts.


Almost all of the clients i've worked with in home hospice care and when i was a geriatric care manager. we'll all in denial about something, and all but very few hold onto independence with the fierceness of the life force itself. what i sincerely wish is that older folks with disabilities would be MORE independent if they allowed for some help. they would be more IN CONTROL if they completed advance directives like living wills and CONSCIOUSLY chose someone to act as financial or health care proxies instead of letting the law or 'next of kin' determine who makes those decisions. Their family would be MORE DEVOTED AND INVOLVED if the burden of caregiving was shared more equitably among siblings and other family members AND paid caregivers. Elders are missing out...

 

Jane

venting a bit of frustration here

Periodic Contributor

I so agree! Thanks for reading my mind and saying it out loud!
Demetria Carter
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"...Jane   venting a bit of frustration here....".

 

Yes. You always post caring and excellent posts to the many posters experiencing some major issues. But yes, a few more people need to take some responsibility and do some advance planning and put some thought into what might happen in their future.... 


"...Why is everyone a victim? Take personal responsibility for your life..."
Contributor

Dear Demetria,

It's not just difficult to be the only one that a loved one will rely on -- it's impossible. Is there any way you can talk to your mom and tell her that you need some time to care for yourself too?  

 

I get that she might simply be afraid to be alone or with someone she doesn't know.  Could you discuss your situation with a caregiving agency and perhaps introduce a caregiver as a friend of yours?  Then that person could come over to "visit" you a few times.  As your mom gets more familiar with him or her, perhaps she'd agree to have her over without you. Then you could go to a movie or do something else. 

 

I agree with others here that it's important for you to care for yourself too. You can't be at your best with your mom unless you have the time to take care of you. Is your mom the kind of person who'd listen to you about your concerns for your own health. 

 

Keep posting, keep active in this thread.  This is something that you can do for yourself while you're with your mom. It's a start to finding your way back to helping you. 

AARP Expert

I'm so sorry you're feeling this way - I can imagine how hard it is to be so solo in this caregiving journey. I'm lucky in that my parents and my sister were/are happy to have help as long as I'm coordinating it and making sure it's all safe and ok - they knew/know I wouldn't let anyone bad care for them. But many people are like you and struggle with this issue...

 

In my experience, eventually most family caregivers get some help because they just can't keep doing it all. It's just not humanly possible. In some cases people get help but they also remain at home - they don't leave their family member alone with a volunteer or professional caregiver - sometimes never and sometimes not until over time their loved ones feel comfortable with the new person. So you might think about that. 

 

Another thought: get help for yourself. If you need/want to be the one to do the hands on care for your mom, maybe you get help with your responsibilities and your life so you have less stress and more time. I find sometimes its easier to get help for me than find people who can actually care for my 93 year old Dad who has Alzheimer's and lives with me. So for example, I have a concierge who helps me with the mounds of paperwork and sorting mail, housecleaning, yard care, running errands meal preparation etc. 

 

I hope you get some relief! And eventually some help for your mom. You might express that you know she loves you and you love her and you want to be able to be there for her and you know she doesn't want to hurt you or cause you to have health problems so you need to work together and accept some help so that you can continue to be there with her over the long haul as much as possible. 

 

Sending you a big hug!!!

 

Take care,

Amy Goyer

AARP Caregiving Expert

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Hi Demetria 

my name isPatti and I live in Pennsylvania with my 93 yr young father who has dementia and doesn't think anything is wrong with him until he has a bad morning and can't get out of bed.  Thank God that is only once in awhile.  My father is like your mother, stubborn and doesn't want anyone helping or in the house but me.  Then on a bad day he doesn't even want me here.  He asks me often "why are you here"?  I stopped saying "to help you, or take care of you" because I always got a smart mouth answer, so I just say " so that you can stay in your own home and keep doing the things you like to do".  It is odd that he doesn't want me here, but when I go to the store or an appointment I have (I am 62 and have arthritis and osteoporosis and fibromyalgia so I have lots of dr appointments myself ).  He gets mad when I have to go food shopping and could be gone 3 hours.  We live in a rural area so I have to drive half he to get there.  Or when I take 4 hours on a Sunday to spend time with my boyfriend which consists of helping me shop at the stop and we stop at our favorite restaurant to have an hour together.  Then when I get home I get yelled at like I'm a teenager.  I get lots of verbal abuse and meanness from my dad and it is difficult to take. We did have a psych nurse come out once a week for over a year but it got to friendly and all she was really doing were the vitals because he wouldn't listen to her anyway. He is the only one who is right about everything and everything.  I work full time from home for my employer of almost 18 yrs. but the caretaking has taken a toll on my health physically and mentally mostly mentally.  I try so hard to make him happy and entertain him he doesn't appreciate it one bit by the way I get treated.  I just went on short term disability at work, I have to try and wean myself off of Cymbalta because it is giving ME memory and cognitive impairment and I am jeopardizing my job.  Meanwhile I have pain all over my body and am still the caretaker and housekeeper.  I have only my boyfriend who is my rock but he lives  an hour away.  My sister abandoned us because my dad wouldn't go move in with her and she thinks I lied to her about me moving in with dad when it was a spur of the moment think and she wouldn't listen to the real truth.  Turns out she was only gold digging my dad.  She hasn't called him or come around for 2 years almost.  You can cry or complain to me or ask questions I  will be here to listen😍 Thanks for hearing my story

AARP Expert


@p221538r wrote:

Hi Demetria 

my name isPatti and I live in Pennsylvania with my 93 yr young father who has dementia and doesn't think anything is wrong with him until he has a bad morning and can't get out of bed.  Thank God that is only once in awhile.  My father is like your mother, stubborn and doesn't want anyone helping or in the house but me.  Then on a bad day he doesn't even want me here.  He asks me often "why are you here"?  I stopped saying "to help you, or take care of you" because I always got a smart mouth answer, so I just say " so that you can stay in your own home and keep doing the things you like to do".  It is odd that he doesn't want me here, but when I go to the store or an appointment I have (I am 62 and have arthritis and osteoporosis and fibromyalgia so I have lots of dr appointments myself ).  He gets mad when I have to go food shopping and could be gone 3 hours.  We live in a rural area so I have to drive half he to get there.  Or when I take 4 hours on a Sunday to spend time with my boyfriend which consists of helping me shop at the stop and we stop at our favorite restaurant to have an hour together.  Then when I get home I get yelled at like I'm a teenager.  I get lots of verbal abuse and meanness from my dad and it is difficult to take. We did have a psych nurse come out once a week for over a year but it got to friendly and all she was really doing were the vitals because he wouldn't listen to her anyway. He is the only one who is right about everything and everything.  I work full time from home for my employer of almost 18 yrs. but the caretaking has taken a toll on my health physically and mentally mostly mentally.  I try so hard to make him happy and entertain him he doesn't appreciate it one bit by the way I get treated.  I just went on short term disability at work, I have to try and wean myself off of Cymbalta because it is giving ME memory and cognitive impairment and I am jeopardizing my job.  Meanwhile I have pain all over my body and am still the caretaker and housekeeper.  I have only my boyfriend who is my rock but he lives  an hour away.  My sister abandoned us because my dad wouldn't go move in with her and she thinks I lied to her about me moving in with dad when it was a spur of the moment think and she wouldn't listen to the real truth.  Turns out she was only gold digging my dad.  She hasn't called him or come around for 2 years almost.  You can cry or complain to me or ask questions I  will be here to listen😍 Thanks for hearing my story


Hey Patti!

 

There are a number of caregivers here that have harsh, ungrateful, even abusive care recipients, and your dad sounds like one. I think that you can stand up to him and cut some of that off. Takes practice, and sometimes it takes a therapist as a coach to give you ideas about how to get him to stop that behavior. Some people are always right. I am rolling my eyes. So irritating. but when you live with them, and you are dependent on each other (you care for him, you live in his house) then it really does pay to work on the quality of the interraction.

 

If he starts bellyaching about your taking hours to shop and (oh the nerve!) have lunch with your boyfriend, you can say, I was shopping for us both, Dad, you're welcome, and then walk out of the room, or put on earphones. You don't have to be listening to anything, although perhaps playing some nice mellow music might be great. He can shout: LISTEN TO ME and you can say, if you're nice to me. I do a lot for you and for us, i don't have to listen to mean talk. 

 

Cut him off at the knees.

 

If you stop taking it he might stop dishing it out. And if he doesn't stop, stop listening. On go the headphones.

 

I also hope you have a good doctor. 

 

Hooray for your supportive boyfriend, and flexible job. 

 

I live in a rural area, too. an hour away from a grocery store. Oh the miles i'm putting on my rig.

 

Write some more. What are you trying? Does anything i say make sense?  Thanks for sharing!

 

Jane

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@d386481c wrote:

I am soooo tired. I am a 61 year old daughter/primary caregiver for my 81 year old mother who has lung cancer, kidney failure & diabetes. It's been 2 years. I'm alone. No one to talk to. No shoulder to cry on. I am so full. I have diabetes. I suffer from depression, sleep apnea, diabetes and I am bi-polar. 

 

My mother will NOT accept help from ANYONE else. NO agencies, services, etc. She is too proud and too private.

 

No one can solve this. I just keep going but it would be nice to sound off or just go someplace and scream!

Sorry! 

Demetria


Hi Demetria,

Thanks for writing. You see that you are in good company! Let me ask you, what's the status of her lung cancer? She's in her 80s, right? If she still has lung cancer, it's probably metastatic. I used to work in home hospice as a social worker. Without being too blunt about it, she doesn't have a lot of time. Unless, she was diagnosed very early and she's cured of that illness. 

 

If she's stubbornly insisting on you and only you, and you are agreeing to that, which is in fact your choice and not inevitable (martyrdom is NOT REQUIRED), then i hope you are taking your medications and using distilled water in your CPAP (i use one, too. I have diabetes, too. And i take medications for depression.)  I hope you are taking care of yourself. Put the oxygen mask on you before you apply it to someone else, as the airplane stewards insist.

 

Just saying.

 

glad you're here. what helps you get through? we all need tips!

 

Jane

Periodic Contributor

Hi JaneCares,

This whole cancer thing has me kind of confused. After the radiation the doc said that since they caught it early, that they radiation shrank the mass some. Now she will need CTs and check ups every 3 months to make sure it doesn't grow or spread. That means she still has cancer right? 

 

You are right. It's comforting (if that is the right word) to know that I am not as alone  as I thought. 

 

To get through I am doing 2 things:

1.trying harder to take better care of myself so I can try to not be so resentful

2.trying to get a little life back by going back to meeting and participation in 1 of the several 4) volunteer groups that I was previously active in.

3.Texting here!

 

I've been able to FORCE my sister to come by and stay with Mom for 2 hours while I do #2!!!!

 

Thanks a lot for sharing!

 

Demetria

Demetria Carter
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@d386481c wrote:

Hi JaneCares,

This whole cancer thing has me kind of confused. After the radiation the doc said that since they caught it early, that they radiation shrank the mass some. Now she will need CTs and check ups every 3 months to make sure it doesn't grow or spread. That means she still has cancer right? 

 

You are right. It's comforting (if that is the right word) to know that I am not as alone  as I thought. 

 

To get through I am doing 2 things:

1.trying harder to take better care of myself so I can try to not be so resentful

2.trying to get a little life back by going back to meeting and participation in 1 of the several 4) volunteer groups that I was previously active in.

3.Texting here!

 

I've been able to FORCE my sister to come by and stay with Mom for 2 hours while I do #2!!!!

 

Thanks a lot for sharing!

 

Demetria


Way to go, Demetria! So glad your sister is helping you out. I hope she'll do this as a regular thing. Resentment is a low grade fever that drains you of energy. You don't have time for that!  

 

Sounds like they gave her radiation and will see what happens next. Since she is older, they did the least invasive, harsh treatment of all and are leaving it at that. Yup she still has it. But cancer has a way of growing slower in older people. The younger the person with cancer, the more aggressive the cancer, as a general rule. She doesn't have to treat it any more ever, at this point. She doesn't even have to go in for the 3 month tests. For what? It's incurable. The doctors can treat any symptoms. But chemo and/or surgery would probably do more harm than good.  So, she may be around a while. Best to pace yourself!

 

I am so not a doctor (i'd be skinnier and have a nicer car) but i worked with people with cancer for 20 years, and hospice too. I hope she has a good primary care doc who can answer your questions. Just know that testing for cancer or treating the cancer is OPTIONAL. And not because we want her to kick the bucket. In an incurable cancer, there is really an open question about whether treatment actually does any good.

 

Anyhoo, do take care of yourself. Keep talking here. Bunch of us listening and talking, too!  Have a great weekend, and maybe it's a holiday weekend for you. Enjoy!

 

Jane

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Sounds really really hard!  I have a very "private" mother too and many difficulties to face every day.  Hang in there, one day at a time.

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