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Coping with a Parent's Diagnosis
Do you have a parent who has been diagnosed with cancer?
Are you a full time or part time caregiver?
Do you live at a distance and are looking for ways to offer support?

Please join this thread for ongoing support and discussion. Please introduce yourself below.
262 Replies
Hi Everyone,

I will get us started. My dad was diagnosed with stage 4 tongue cancer at 59 years old. He went through chemo and radiation unfortunatley his cancer was inoperable. As an adult child of someone with cancer I struggled with how I could help, what I could do, and supporting my mom. I have three siblings and we all coped in our own way. Some days it was so difficult to function, and I felt like I was walking around in a fog.

I'm here and willing to listen and provide support to anyone trying to cope with a parent's diagnosis. 

Lacey
PBear60
2 Posts
My mother's was diagnosed with liver cancer about 3 years ago. She went through a course of radiation then was started on chemo. She has been on chemo on and off for 2 years. She is 86 years old so she is dealing with the effects of age on her body as well as the effects of the treatment. She has lost a lot of weight and finds it hard to eat. This past few weeks she has become very tired and weak. I know the worst is yet to come but seeing her in this state is really upsetting. A few times she has said that she wished she could just go to sleep and not wake up. I don't know what to say to her and I can't show her that I'm upset. She was never one to show her feelings so when she says things like that she must be feeling bad. I don't know how to comfort her. I feel I should know what to do but I don't. If I can't deal with this now I don't know what I'm going to do when she starts to get worse.
Hi PBear60‍,

I'm sorry that my reply took so long. How are things going now? How are you coping?

I look forward to hearing from you,
Lacey
PBear60
2 Posts
Things have been a little rough for her and the family since yesterday when her doctor said the treatment was no longer working. There's nothing else they can do. I can tell Mom's upset but putting on a brave face. She says she's glad it's coming to an end because she's had enough. It's really hard to hear and still hold it together for her. I wish I knew how to make things easier for her. I don't know what the future has in store. Being there for her comes first but it's so hard trying to suppress my feelings. I know I'm rambling but my emotions are all over the place since we found out yesterday. I'm trying to be strong for everyone but I'm really hurting. I hope she gets through this without too much suffering.
Hi PBear60‍ ,

I'm sorry to hear the news. 

When my dad was so sick it got to a point where he had enough too. It was so hard to accept that there was nothing else that could be done, but it was harder to see him suffer and have zero quality of life. He didn't want that.

It is completely understandable that your emotions are all over the place it's hard to know how you should feel, how you should act, or what you should say. I felt like I was walking around in a fog. Make sure you are talking to someone about how you feel. You need the opportunity to release some of the hurt and the pain. Talk to your mom if you feel like you can, let her know how you feel. She is likely feeling a lot of the same emotions. 

Will you be meeting with a palliative care team? They will be able to help to make sure that she remains comfortable and help address your concerns.

Here are some resources that really helped me.

Advanced Cancer Booklet
Canadian Virtual Hospice - a website with a wealth of information about end of life.

Please keep me posted. I will be thinking of you
Lacey
andra
16 Posts
Hey My name is Andra, and I've moved across the country leaving family friends and a job to take care of my Mom who has stage iiib  lung cancer  Not only does she have that but they are two different kinds NSCLC and SCLC.  with lymph node involvement.
I posted last night but think I posted in the wrong place  I just copied the post from the other introduce forum.  
Her treatment plan is just chemo at the moment she is to physically weak to handle both radiation and chemo at the same time.  She has so many other diagnoses chronic pain scoliosis spinal stenosis osteoarthritis clinical depression and many more,
 Don't know if this is the right place to ask but she is in such denial over what is going on, she doesn't realize how dire her situation is.  The doctors don't seem to thinl that the treatment is going to work, she refuses to quit smoking, drink enough fluids.  NOTHING  she thinks she is doing enough but the doctors nurses and social worker involved has all said differently,  She had to go in to get IV fluids yesterday, because she wont drink anything other than diet coke.  Any mention that she needs to drink more than that is met with Im trying my best > she wont walk around she wont do anything yet in her head she is doing amazingly well.  It has been set up that we have a nurse coming 1 a day for the next 5 days for iv fluids, shes now complaing about being attached to the bad and hates it.  I do not know wht to do. 
It is just me staying with her, my brother lives in the same city but cannot and i understand will not stay with her its just me.  He is a wonderful support for me.  
Myn heart is breaking bacause she is a broken woman but is unwilling/unable to do what she needs to do.  Any suggestion we make to her is met with you hate me you  dont  understand  Then I feel like a piece of poop for upseting her and I give in yes Mom you are doing wonderful, you are doing the best you can,  I can only take so much, if I even suggest drinking or going for a walk she gets upset.  She is so emotionally fragile that almost any suggestion is met with tears, or a you hate me I scerwed up again or you don't understand.  Im about to start pullong out my hair.  
Sorry  I know that this whole thigs sounds selfish that she is the one going through hell, not me but it is so had when the reality is that she is doing little to nothing to help herself.  
Addie
603 Posts
Dear andra‍ - I'm so sorry for what you are going through. I know that it's heartwrenching.
  Unfortunately we can't control how others react to their illnesses, or situations. Although it never hurts to make suggestions, if they are met with defenciveness. there's not much more you can do. 
 
 The best thing you can do is love her, show her how much, in spite of the pain you feel watching her do things you disagree with. Be there for her and do things with her as much as you can. 

I don't know what else to say. She will do what she feels she needs to do to cope with this,  whether you agree or not. 
andra
16 Posts
Thank you  
Finally have some external supports coming in a physio, one to help with showering and a referal to the pain clinic.  Thank you for all the words of suport
andra‍ !

That is great glad you got some help! 

Any plans for self-care this weekend? Take care of you too!

Lacey
andra
16 Posts
Hello again,  
What a whirlwind its been for the last week or so .  We had to bring Mom in to the hospital tues or wed of last week for dehydration, that took a long time to convince her to go in.  Finally got her there and the doctors set it up that she gets iv hydration at home for the next five days,  Friday night she started with a fever of 100,  The danger is 100.4 She would not go in , the fever continued throughout the night and into the morning with little to no fluctuation.  She still refused to go in, Sat even it finally hit 100.4i she still refused to go in.   about 20 minutes later the nurse showed up to give her her iv hydration and the fever was at 100.5 She told Mom that she had to go to hospital.  So off w go, with Mom angry at us for bringing her in.  She had been admitted to hospital within a half hour.  It turns out that she had no wbc at all.  She is still in hospital but now her mind is starting to fail.   Supposdly they wanted to release her yesterday because her WBC count after giving her iv antibiotics and something to stimuate WBC growth had come up.  However her mind is not there she is paranoid, delusional  she refuses to listen to the nurses shes convinced they are out to get her She told my brother that she was falling and passing out .  Looks like her belly is swollen.   I told the doctor that there was no way Iwas taking her home in that condition.  I wanted a psych workup done.  
The docoter asked me in front of my Mom if I thought she ws competent ,  I said no I dot and listed the reasons.  She blew up at me and started screaming and calling me names. Anyhow they are going to do a psych workup before they release her, if they release her.  I do not know how to cope I do not feel that she would be safe coming home,  mainly because of her refusal to listen to the doc, nurses and us/  I dont know what or how to cope.  If I dont stay with her they will not continure chemo.  So the cancer takes over and I lose her.  If i refuse to take her home she may go into a hme if we can find space and she hates me and i lose her.  I am in an impossible situation I do not knwo how to cope.  We have numerous meetings set up with people from the cancer centre in the next few days.  
HELP I am so lost scared conused My husband wants me to come home part of me wants to go hoe but if I go home I am signing her death warrant, i live n BC and have mo9ved to Ottawa to take care of her.  
She picks fights over everythng possible even when I gave my brother a glss of water she flipped out.  If I told her that she had to leave the bracelets on in the hospital that signify fall risk penicilin anllergy mask up .She says that no way and takes them off .  It is so hard not to lose it with her.  We constntly tell her we love her but unless we agree with her  paranoia and delusions  she starts freaking out .  
I do not want her to come home in this state but I do not think I have any options We are lookng for a care home that will allow pets she has two cats that are her life whes told us point blank that they are the most important thing in her life.  So I need to find a place that takes cats but they cost so much.  
Sorry for the long post 
Andra
 
Addie
603 Posts
Oh my gosh andra‍ - What a situation to be in. Quite clearly they cannot release her to go home, because it doesn't sound like under the circumstances you would be able to deal with her. You must explain to her doctor or a doctor your predicament, and ask if they have any suggestions. Even home help on an increasing basis would be something. How is you brother dealing with it? How old is he? Any other siblings? Perhaps there is security in numbers. With all of you rallying to help, it may be easier. 
If she believes her delusions, there isn't much point denying them, as it will likely just confuse and frustrate her. The best thing to do I think is not to contradict, You don't necessarily have to agree with her delusions, but you don't have to disagree either. Just accept what she is saying calmly, and try not to acknowledge. 
In any case- For sure you will need help.
Roll-On
224 Posts
Hello andra‍ 
First let me say how amazing you have been in trying to find your way through this cloudy and painful situation. Your strength and support for your mother is beyond description. Not only is the situation a huge challenge but taking it on across the country is even more difficult. 

My first concern is for your own welfare both emotionally and physically. The load you are carrying, mainly alone, is huge and it will take a toll on you. Make sure that you are eating and resting when yu need. It seems the environment can be volitile and sometimes you may need to step away for a few minutes. If you can you should just get outside for a few minutes and take a short walk to clear your head. The pace at which things are coming at you may be overwhelming so you need to have a way to slow it down. A few quiet moments away to close your eyes, listen to a piece of music and breath can help bring focus and clarity.

On top of that you need to make sure you are eating and resting as well. It is hard enough being the caregiver but tired and burned out does not help.

I sort of see your initial stage here like managing a crisis or often refered to as "drinking from a fire hose". I suggest that you sit down and write a list of things that may need to be done and weigh the options of each step. You can the break these down into stages or steps that need to be done. This way you can develop a "Plan" of what neeeds to be done and how to get there. From here you can number then off for how to get them done and "prioritize" the use of your time and energy. Then you can move things forward and try to set the timeline or "Pace" to get through it.

I see that you have engaged some additional resources and that it excellent. You can not do this alone. I recomend a serious conversation with your brother if possible as he needs to support you and help share some of the load.

 I agree with Addie‍ 's comments on not engaging in conflict when your mother erupt. Stay calm as your can and try to keep emotions down. Then go out for a walk and scream at the sky.

I suspect that there are external support groups available in the Ottawa area that you may be able to tap into. One I have some knowledge of is the "Wellspring" group. I looked online and they seem to be in Ottawa. Just access to someone to talk with over coffee and likely give you some referrals for help in the area may be good for you.

I don't have any immediate questions for you and I am sure you have many. I am glad you found your way here and I hope that you will find what you need. Don't hesitate to post questions, concerns or just vent. Many here have lived in the same shoes. We are here to try support and are also pulling for you through this.

Stay strong and focused and take care of yourself.

Roll On....
andra
16 Posts
Thank you everyone.  She is sitll in hospital and some things are geting better others worse.  We met with the pyschosocial worker yesterday to see if there was any more help available.  She has givn me the number of eople wh help find care homes long and short term.  That may be an option if and when the delusions go away.  Fortunately we are waiting for a competncy exam to be done.  It has been requested since sundy morning  and nothing much has been done.  THe psychiatrist showed up yesteray afternoon for about 10 minutes then left I have seen nothing nor spoken with him since.  So i do not know where things stand.  I am terrified that I may need to bring her home today, but at the sme time greatly want to bring her home. I have spoken with the oncologists nurse and even though they have rebooked the chemo apppointment it does nto sound like they at this point will go ahead with it because of her physical and mental state  My brother is a wonderful and great support for me.  We have been leaning on each othe or the last two months on a daiy basis.  
Hopefully today brings some news rther than this vague hurry up and wait.  I have the numbers and meeting places for a local support group but it ony meets every other wedneday so its a two week wait. but it is better than nothing.  
I do walk away when she starts freaking on me.  I know tht she does not mean what she says however it doesnt change the hurt, it only eases the healing time. Even though she has not been totlly diagnosed with it she has all the signs, symptoms and causes of Narcissistic personality disorder.  Not a fun thing.  
I am going to see if they wil do another CAT scan or MRI to see if the cancer has metatised to her brain
Thankyou all its good to know I can come here and dump
Sorry I cannot tag anyone who has offered support and advice have nto quite igured that out yet

 
.  
andra
16 Posts

andra:
Thank you everyone.  She is sitll in hospital and some things are geting better others worse.  We met with the pyschosocial worker yesterday to see if there was any more help available.  She has givn me the number of eople wh help find care homes long and short term.  That may be an option if and when the delusions go away.  Fortunately we are waiting for a competncy exam to be done.  It has been requested since sundy morning  and nothing much has been done.  THe psychiatrist showed up yesteray afternoon for about 10 minutes then left I have seen nothing nor spoken with him since.  So i do not know where things stand.  I am terrified that I may need to bring her home today, but at the sme time greatly want to bring her home. I have spoken with the oncologists nurse and even though they have rebooked the chemo apppointment it does nto sound like they at this point will go ahead with it because of her physical and mental state  My brother is a wonderful and great support for me.  We have been leaning on each othe or the last two months on a daiy basis.  
Hopefully today brings some news rther than this vague hurry up and wait.  I have the numbers and meeting places for a local support group but it ony meets every other wedneday so its a two week wait. but it is better than nothing.  
I do walk away when she starts freaking on me.  I know tht she does not mean what she says however it doesnt change the hurt, it only eases the healing time. Even though she has not been totlly diagnosed with it she has all the signs, symptoms and causes of Narcissistic personality disorder.  Not a fun thing.  
I am going to see if they wil do another CAT scan or MRI to see if the cancer has metatised to her brain
Thankyou all its good to know I can come here and dump
Sorry I cannot tag anyone who has offered support and advice have nto quite igured that out yet

 
.  

 
Suzanne73
205 Posts
Hi andra‍ 
I just wanted to offer another voice of support. I can't really offer any additional advice other than what others have said, but I am glad to hear that you're walking away when things get too hot.  I'm glad that you recognize that her behaviour seems to be a reflection of a disorder - if she were thinking clearly and objectively then she wouldn't be so hurtful to you.  Try to remember better times and just be present for her through this.   Please don't second guess the decisions you've made either - it really sounds like you are handling this in all the right ways.   I can't imagine the stress you're under while so far from home - I will be thinking about you in this situation.  Hope you get some proper answers and support through the hospital. 
Thinking of you andra‍! It sounds like you are doing a great job advocating for your mom's best interest. Keep it up. 

We are here for you to 'dump' your emotions anytime,
Lacey
jorola
1181 Posts
Hi andra

I am a caregiver to my husband with stage 3b NSCLC. I have also lost a few family members to small cell. Just wanted to add another voice of support.

You are doing everything you can and an awesome job by the way. It is a hard thing to do and harder to see your Mom go through this. Still you are doing what you need to to ensure she is cared for. You and your brother need to continue to stick together right now. You'll need each other. Teamwork is the way to get through this.

We are here too, for you. What are you doing to care for you? Are you taking breaks? Getting out with family/friends?

Thinking  of you, Jodie
andra
16 Posts
They released her today, against my better judgement she somehow managed to pass what they called a psych eval ( a 5 minute meet with the psychiatrist) it is wonderful to have her home.  I had to run out to get her script filled she had promised to stay in bed.  Lesson learned on my part she cannot be left alone at all.  I knew better but I tried she was out of breath shaking confused.  
I have jsut my brother here for support all the rest of my family is in BC and Alberta I havent lived here for 30 years there is no one else.  
I can do this its just hard.My brother has his kids this weekend so it is out of the question that he will be able to help at all.  
Thank you all for letting me vent
Addie
603 Posts
Dear andra‍ - It sounds like you are on the right track. Gradually finding options and putting things together. So glad your brother is on board and supportive. You will need each other.
It is my hope that they can keep her in hospital until yuou can figure out some adequate care. I know you are torn apart by all this, but if you were to bring her home you need people to help that you can count on.
Stay calm and do what you can. I wish you the best case scenario.
Contact the hospital. Ask for the social workers. Ask about home care, resources available to you for respite care and other care. One social worker in AB gave me a list of companies and resources that could be accessed. Get a Homecare assessment. They can assign a case manager and pull in all kinds of resources for you. Good luck. My mom passed in 2009 and would get less stable as the day went along but people would come to assess her early in the day when she was at her best. They have a tendency to try to keep people at home.
If she attends a cancer clinic they should also have social workers and can put you in touch with resources that can assist. The tip I was told was you need to continue to advocate, sometimes strongly, for you and your mom, and get material or a social worker who can explain the resources that should be available to you and your mom. Then push for them. Particularly scheduled respite care to allow you some time to do your thing while someone remains with her.
http://www.homecareontario.ca/ Andra - this looks like a good place to start.
jdtv
15 Posts

andra:
They released her today, against my better judgement she somehow managed to pass what they called a psych eval ( a 5 minute meet with the psychiatrist) it is wonderful to have her home.  I had to run out to get her script filled she had promised to stay in bed.  Lesson learned on my part she cannot be left alone at all.  I knew better but I tried she was out of breath shaking confused.  
I have jsut my brother here for support all the rest of my family is in BC and Alberta I havent lived here for 30 years there is no one else.  
I can do this its just hard.My brother has his kids this weekend so it is out of the question that he will be able to help at all.  
Thank you all for letting me vent

Sounds like a rough go to feel like you're completely out of options. I'd like to believe my dad is still independant but I find myself making sure that someone is constantly with him. I'm sure you can make things work, I see some other people posting resources and stuff. Stay strong
andra‍ 

How are you? How is mom? Haven't hear from you in a bit.

Thinking of you,
Lacey
andra
16 Posts
Thanks for caring!!
Wow had noidea it had been so long since I posted things have been hell.  She went ahead with the next round of chemo appox may 3. (an again reduced dose) and to no surprise ended up in hospital again with neutopenic fever.  She was in hospital for about 10n days, we amost lost her twice.  Wonderfully she pulled through and was sent home.  She had another doc apt prior to me going back to BC.  then doc at that time was unwilling to go ahead with chemo becausen of how weak she is and another infection she had going on. While I was in BC. (I had to put her into respite for two weeks while I went back to BC for my daughters grad.) my brother brought her to the doc .the doc finally admitted that anther round of chemo would be detrimental or fatal to her she would accept it.  two different docs spoke with her and they both said no more chemo.   the two docs said she was terminal  While in respite care she fell numerous times was unable or unwilling to accept much or any help from visiting nurses beacuse she felt she was doing fine.   I came back here about mid june got her back home  and went on to the next doctor.  The radiation doc told her of course there is hope that the cancer can be beat.  WHAT?? ok so schedule radiation.  It starts tomorrow.  She is doing everything in her powr to get me to leave.  We are constantly fighting she feels she can go this battle alone by begging rides or getting a stranger to move in with her.  I am at a point I do not know if I can do this anymore.  I am tired of constntly being harassed abused and controlled,  I have a life in BC which is now in jeapordy beeacuse of the time spent here and her unwillingness to comply with what the docs have told her to do,  I do not mean to sound selfish.  But i am lost snd do not know what to do,  She has said some frightening things about what would happen if she has to go into a retirement home.  I am stuck if i leave my mom dies if i stay she may live but the end rsult is still that shen cannot live alone.  Many more services are being set up however because of how much she sleeps she is unable to get up and open the door to let them in or she canceks them because she isnt feeling well.  
sorry for the ramble , typos and confusion I need help
happyhooker
178 Posts
Hi Andra I feel your frustration... few questions, who is her power of attorney? does the POA have some clout over her care? have you thought of contacting a social worker who is at the hospital to have a meeting with the both of you? Has anyone spoken to her about her QUALITY OF LIFE? Is there family or close friends near by to keep an eye on her and communicate with you. Part of her wanting to do everything is she still wants her independance.. change is difficult for all of us. If she tells you to move the table across the room - that is ok. but if you do it- not good because you have taken her control away.
As having worked in long term care here are a few things to keep in mind. Retiterment homes are run in Ontario by the ministry of Housing. they charge xtra for everything.. also they have psw's like moi give meds including narcotics- they take a drug coarse and off they go. A practical nurse has 2 years training and much drug training A registered nurse RN has 4 years of university and years of drug training. rules and regulations are far and few between in a retirerment home- they are good for someone who is relatively healthy and needs a little help. Nursing homes are ministered by the ministry of long term care and RPN or RN administer meds. The care is much more hands on , A ton of rules and regulations It is much more structured and I believe probalbly better for your mom. I hope this information is of some help to you and that your mom will understand how much you love her and want the best for you good luck willy happy hooker ps please keep us posted on how your mom is doing- hugs
Addie
603 Posts
Dear andra‍ -  What a heart wrenching position to be in. Does your brother live  close to her. Is he an ally to you? It sounds like one of you needs to enlist some help, at least in the near future for dealing with her. 
Can you go with her to her appointment with her doctor, and make an arrangement to speak to them yourself about her difficulties. She sounds like a tough lady, and obviously independent. She may have difficulty admitting to herself that this is even going on and that she may need help. 
But I think it would be important for all of you to have a plan in place in case/when it is needed.
If you can't speak with her doctor, then ask him/her who you could speak to about this. Perhaps her nurse navigator.?
They may not be aware of how she is dealing with it all and that she may need help.
andra
16 Posts
If only it were that simple, lol.  My brother is a great ally for me however die to the fact that my Mom is who she is and has many obvious mental issues(no offense meant just not sure how else to word it). He cannot not will not be involved with her any more whch I understand and do not blame  him at all.  

I go wth her to every appointment and while all the powers tht be see what she is like the fact that she is stil competent (knows what day it is and where she is at ) there is nothing that can be done.  
  She outright refuses to go into a retirement home because acording to her they are beneath her and no way no how will she ever go back to one.  
I have decided to go nstay with my brother this weekend and leave Mom on her own so tht she can see and try it on her own.  I will be a 5 or 10 minute drive away.  As she has said she wants to be alone but is now livid with me for trying this I am being unreasnable or a B**CH.  
There are 2 different social workers involved about to be a 3rd.
I can no longer tolerate the abuse beng thrown me.  Your point of the table is perfect. 
Thank you I am lost confused and drowning
andra‍ - Has she been deemed competent to live on her own? Has an assessment been done by CCAC?
djkelly
1 Posts
Hi,
My name is Donna and I am so happy to have been directed to this site!  My Mom was diagnosed with Breast Cancer June 27, 2017.  We don't know what stage/kind or anything like that yet but she is scheduled for a Mastectomy on her Left Breast with removal of the Lymph Nodes for testing as well on July 12, 2017. 
I am an only child and married with an adult son so I am very fortunate to be able to move in with my Parents for a little while after her surgery to care for her and really not have to worry about home too much.  My Dad loves her so much but is not handling the diagnoses very well and is not going to appointments with us, reading any of the Material I bring home and generally burying his head in the sand about the whole thing but you can see it is really upsetting him.  He won't talk to me or my Mom about it so I am hoping he will open up to friends or family so that he has an outlet of some sort.  He is a little stubborn but I need for him to understand that I also have a full time job that I will have to return to at some point during the day so I would like him to be able to help with Mom's needs after surgery.... I'll be there for Monrings/evenings and nights for as long as she requires.   My husband doesn't know what to say or do and is being very logical about the whole thing which really.... I don't want logical... I really don't know what I want other than this whole thing to go away... haha
I sometimes feel like I am handling it too well??  That worries me but I have always been the "rock" in our Family.  I certainly have good  days and bad times where I could cry at the drop of a hat but afraid that if I start that I may not stop. 
There is so much information available and it is really hard to sort through so I guess we are going to wait until surgery and get some results from there and then deal with whatever it is we need to deal with. 
Thanks to all of you.  xoxo
 
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