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Coping with a Parent's Diagnosis

Coping with a Parent's Diagnosis

Posted by Lacey_adminCCS on Mar 9, 2017 11:15 am

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.

Re: Coping with a Parent's Diagnosis

Posted by Lacey_adminCCS on Mar 9, 2017 11:52 am

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

Re: Coping with a Parent's Diagnosis

Posted by PBear60 on Mar 10, 2017 10:56 pm

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.

Re: Coping with a Parent's Diagnosis

Posted by Lacey_adminCCS on Apr 7, 2017 12:30 pm

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

Re: Coping with a Parent's Diagnosis

Posted by PBear60 on Apr 7, 2017 2:01 pm

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.

Re: Coping with a Parent's Diagnosis

Posted by Lacey_adminCCS on Apr 7, 2017 2:17 pm

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

Re: Coping with a Parent's Diagnosis

Posted by andra on Apr 20, 2017 8:30 am

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.  

Re: Coping with a Parent's Diagnosis

Posted by Addie on Apr 21, 2017 9:28 am

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. 

Re: Coping with a Parent's Diagnosis

Posted by andra on Apr 21, 2017 12:27 pm

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

Re: Coping with a Parent's Diagnosis

Posted by Lacey_adminCCS on Apr 21, 2017 12:31 pm

andra‍ !

That is great glad you got some help! 

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

Lacey

Re: Coping with a Parent's Diagnosis

Posted by andra on Apr 27, 2017 6:46 am

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
 

Re: Coping with a Parent's Diagnosis

Posted by Addie on Apr 27, 2017 12:05 pm

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.

Re: Coping with a Parent's Diagnosis

Posted by Roll-On on Apr 27, 2017 1:23 pm

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....

Re: Coping with a Parent's Diagnosis

Posted by andra on Apr 28, 2017 7:45 am

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

 
.  

Re: Coping with a Parent's Diagnosis

Posted by andra on Apr 28, 2017 7:46 am

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

 
.  

 

Re: Coping with a Parent's Diagnosis

Posted by Suzanne73 on Apr 28, 2017 8:59 am

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. 

Re: Coping with a Parent's Diagnosis

Posted by Lacey_adminCCS on Apr 28, 2017 9:41 am

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

Re: Coping with a Parent's Diagnosis

Posted by jorola on Apr 28, 2017 3:45 pm

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

Re: Coping with a Parent's Diagnosis

Posted by andra on Apr 28, 2017 6:44 pm

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

Re: Coping with a Parent's Diagnosis

Posted by Addie on Apr 29, 2017 8:59 am

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.

Re: Coping with a Parent's Diagnosis

Posted by itsawonderfullife on Apr 29, 2017 2:30 pm

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.

Re: Coping with a Parent's Diagnosis

Posted by itsawonderfullife on Apr 29, 2017 2:35 pm

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.

Re: Coping with a Parent's Diagnosis

Posted by itsawonderfullife on Apr 29, 2017 3:08 pm

http://www.homecareontario.ca/ Andra - this looks like a good place to start.

Re: Coping with a Parent's Diagnosis

Posted by jdtv on May 3, 2017 1:37 pm

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

Re: Coping with a Parent's Diagnosis

Posted by Lacey_adminCCS on Jul 5, 2017 2:49 pm

andra‍ 

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

Thinking of you,
Lacey