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Not sure what to do - boyfriend's mother terminal 
Started by caringgf
29 Mar 2014, 12:58 AM
First post - didn't think I'd ever be here.  I'm in Ontario.

My boyfriend's mother has metastatic colon cancer - it has spread to her liver - it's terminal - just keeping her comfortable now.  Her husband passed away 2 1/2 years ago.  She mentioned to me the other day she is worried about expenses for her cremation and funeral, and about the house and the mortgage (boyfriend lives with her - the house is left to him).  And I'm not sure that she has made the necessary arrangements to die at home - if there is arrangements that need to be made.

I am not there all the time, so I don't know what conversations they have had and I don't know how to bring it up with him.  I don't want to overstep, but I don't want her to spend her last days worrying about things that can be settled and I don't want him and his sister to have unnecessary challenges once she is gone.  I don't know how much time she has left - her stomach pain and nausea is increasing, she sleeps most of the time. I don't think that either her son or daughter are aware of exactly what is happening, as i think she hides this from them - she confides in me and tells me not to say anything to them - but I don't feel right not saying anything.  I know she doesn't want them to worry - but I think at least he needs to know.

I'm bothered that she only seems to have a PSW come in daily, a nurse once a week and a dietician every now and then - it seemed like once she and the doctors made the decision not to continue the chemotherapy, they washed their hands of her.  I don't know that she even knows what to expect.  :(

Any advice or direction would be greatly appreciated.  

caringgf 
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Reply by KathCull_admin
29 Mar 2014, 2:18 AM

Hi Caringgf
Welcome to our virtual community. Although no situation is the same, the members of our community will be able to understand how difficult this must be for you. They also come with a wealth of experience and compassion.

Husband has stage four head and neck cancer started by Melinda is a thread that you might want to check out if you have not already done so. If you post to this thread or any others, members already contributing will get email notification and I know will respond to you.

It seems so normal for a mother to want to protect her children, but sometimes it means not being able to have honest conversations, that might be painful but are necessary. I am thinking particularly if there are financial concerns that need attention.  Your concerns sound very valid.  Have you been able to talk to your boyfriend about the changes you see in his mother?

Reading your post, it seems to clear your boyfriend’s mother trusts and cares for you. This must be a difficult time for you too.  I would imagine the conversations you and his mother are having are not always easy. How you are doing?
 

I am glad you found our community. Another resource in this Canadian Virtual Hospice site that you might helpful is Ask a Professional.

Take care.

Katherine 

 


 

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Reply by marstin
29 Mar 2014, 4:18 AM
Hi Caringgf,

I think we all feel the same way when we first arrive here, and wonder how this could happen. It's a tough thing to go through.

My guess is that the nurse that comes in once a week is monitoring your boyfriends mom and reporting back to the doctor. In our case, when my partner made the decision to pass away at home, they only sent nurses to take care of him and see if he needed anything or if there were any major changes. As he drew near the end, a doctor started coming out once a week to check up on him and make changes in his medication as needed. I know with us that the doctor started pushing hard for Len or I to sign a DNR so that  when the time came, I wouldn't have to call an ambulance and have them try to bring him back. If your boyfriends mom has signed this already they may also have made arrangements for when the time comes. I signed the necessary papers after a short discussion with him a few days before he passed and also contacted the funeral home ahead of time to have them come and take him away once he had passed. I'm not sure how you could broach this subject with your boyfriend other than to ask him if any arrangements have been made. With his mom not sharing her concerns with him and him not sharing the information with you, it makes it very difficult.

Is there any way that you could talk to your boyfriend and explain his mom's concerns without him asking her why she didn't talk to him about it? It's a very delicate subject but sadly it seems like if he knew how she felt, he might be able to reassure her that everything is being taken care of and she wouldn't feel so stressed. I can well imagine that you feel like you might be betraying her trust but I think that your boyfriend would want to know. As you are the only one who knows how he would react to this, ultimately you have to be the judge as to what is right for both of them.

I hope you continue to come back here and share. Many of us have gone down this road and although we are not professionals we are definitely experienced in this painful journey.

Hugs,
Tracie
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Reply by JennJilks
30 Mar 2014, 12:11 PM
Since you are in Ontario, you can have your BF talk to the Charge Nurse. She should be able to talk to him. With the privacy laws, they are often unable or unwilling to have conversations with significant others unless they have specific permission of the client/patient.

Your BF should ask the Charge Nurse about disease trajectory. There are many ways to determine levels of pain. Read Signs of Pain, if you have doubts. Unmanaged pain is one of the worst symptoms of home care. The Charge Nurse, again, should be talking to the patient about all this. The good ones do. I've sat with a client, as a volunteer, while our 5 questionsfabulous nurse had the end-of-life conversation about extra support, what happens when her husband cannot manage her care, and how she deserves a hospital bed, if needed. Also, your local hospice (ontario211) can send you a volunteer to help out when she cannot be left alone. Finally, often the dying patient is much more comfortable talking to a daughter-in-law, rather than her own children. If you want to have this conversation with her, you can let her know you are open to it. The Five Questions are a good place to start.

Uppermost, however, is not to allow her to languish, alone,at home, even if she wishes to die at home. This grand wish of dying at home might not be achieveable without extended family members, and much support. Your BF must ensure that she is comfortable (pain-free) and safe. If there isn't enough support do do this, protect yourself and your BF and take her to hospital. I've seen too many ill caregivers trying to respect the patients wishes, only to become ill themselves.  

All the best, good for you for advocating. I've found that sons aren't always the best advocates!  
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Reply by KathCull_admin
04 Apr 2014, 2:19 AM
Hi caringgf
I have been thinking about you the last few days. Just wondering how things have been for all of you this week?  

Katherine
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Reply by caringgf
04 Apr 2014, 5:08 PM
Thank you for your replies.  It has been a rough 24 hours - I finally let my bf know about his mother's concerns last night and did discover that she has not expressed any of them to him or his sister.  :(  They are both hurt and upset.  He is upset that I didn't share, his sister is upset that his mother didn't speak to them.  I have promised that I will share any important information from now on but also suggested that we need to have a discussion about the whole thing.  He is still processing the hurt and we haven't really discussed much other than the fact that he is angry that neither his mother or I have communicated with him.  His sister and I have texted and are also going to spend some time tomorrow together and will discuss it further.  Communication has always been a problem in their family and I see now that we all have to work together to fix this problem.

She did get some legal things changed over this week and I encouraged her to talk to her nurse, who was coming to visit yesterday, about her increasing nausea and about getting the EDITH program in place, if that's what she wanted.  She seems to have her pain under control with the meds she has, but the nausea is become bothersome. I told her that she doesn't need to be uncomfortable and that the nurse was there to make sure she was.  I also noticed Wednesday evening at supper that she is not eating as much and she is also sleeping a lot more.  BF mentioned to me that he didn't like that she was sleeping more - I couldn'r bring myself to tell him that was a sign of the end getting closer, but I know I have to.  I'm so scared he's going to come home from work and find her gone.  We don't live together, and I usually get over there at least once a week and on the weekends.  I would like to be there more, but I don't want to overstep either.  

As for me and about me - it's all a bit complicated.  We are both older, in our mid (to late) forties.  We were highschool sweethearts that reconnected as friends six years ago, but have been drawn together as a more committed relationship over the years.  Since then, I have separated from my husband of 22 years and moved out, leaving 3 of my children with him, (we have 4 boys, aged 11, 14, 19 and 21 - the 19 year old is at university in Ottawa) because I can't afford to support them and myself, and felt that asking him for child support would put him in a financial hardship.  I am also struggling with the soon to be ex, because even though I have been very amicable and did my best to help him along during the first few months of separation, ever since I told him about bf and I being in a relationship, he very quickly decided to tell me about his other relationship (which I believe has been going on longer than he tells me), and is now not communicating with me and being very difficult.  So, needless to say, I am a bundle of emotions but doing my very best to remain positive for bf, his mother and his sister as well as show a strong mother with a positive attitude for my children.  

 
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Reply by moderator | modératrice
10 Apr 2014, 1:23 AM
Hi Caringgf,

Thank you for sharing. Families are so complex. In children's books it all seems so simple, but in reality it almost never is and every family is unique in its complexities.

So many emotions, so much strength. It does take its toll, so I'm glad that you found us and feel comfortable sharing. I hope we can walk along side you and carry some of the burden for a bit through listening.

Is you boyfriend a little less angry now? I suspect his anger was a replacement for feeling hurt that his mother wasn't able to communicate directly with him. That can't be easy, but like you said, this is not a new communication problem. How are things today?

Colleen 
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Reply by caringgf
10 Apr 2014, 3:40 AM
Things have progressed since my last post.  Bf's mother seems to have rallied a bit - still sleeping a fair bit, but more alert when she is awake.  Still sharp as a tack and quick witted!  Always making me laugh!  We had a wonderful conversation a few nights ago where she in a round about way let me know that she has known that bf and I have had a close relationship for a few years now - even though he and I didn't really admit it to each other until about a year ago.  She told me she knew when we buried bf's fathers ashes a few years ago - because bf insisted on getting a rose for me to lay on the urn along with the ones he and his mother laid.  

We spent the weekend together (at his house with his mom), we have agreed that I will share any important information I think he should know right away so that the lines of communication are open.  I don't know if his mother will ever feel comfortable communicating with him or his sister directly, but all i can do is try to facilitate that as much as I can.

I'm working on sorting things out with my soon to be ex, one step at a time.  I refuse to allow his behaviour or actions towards me dictate how I will act towards him.  I will remain friendly and amicable, co-operative and easy going - but I did warn him that if I am pushed, I will protect my children and myself.  I think he is beginning to realize that just because I'm nice, doesn't mean i'm stupid.

It was a stressful week, the weekend helped relieve some of that stress but I'm continuing with my positive thinking and I've also started listening to some meditation recordings when I go to bed at night as well.  I am looking forward to the day when I sleep well...it's not too far away.

Thanks again for your support.  I appreciate that thoughts and prayers - I love how the internet can be such a large and caring community.

Laura

 
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Reply by KathCull_admin
15 Apr 2014, 2:35 PM

Hi 
I have been thinking about you the last few days Laura and wondered how things are. (I just read my last post and I started with the same sentence - but it's still true:) 

It's good to hear that you, bf and bf's mother have been able to have good conversations - I wonder if that doesn't help her rest a little more easily as well. 

What was it about the weekend that helped to relieve the stress do you think? It would be nice if you could bottle up whatever it was and take a glass every so often:) 

eKIM started a thread 
Special People In Our Lives with  poem that you might enjoy.

Take care Laura  
Katherine 

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Reply by KathCull_admin
28 Apr 2014, 3:19 PM
Hi Laura
It's a cold, wet day here - spring seems to have taken a vacation. How are things where you live?

I am interested in the relaxation recordings you are using - did someone recommend them?

Katherine

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