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Introducing myself and situation with mom with end stage cancer


Dosh Garnett

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Hi, I am totally new to this forum today. I have had a look around at other posts but not had a chance to respond to much yet. I intend to try to keep checking in here daily for the next while.

Just to give everyone reading this some background and a timeline:

I am a 41yr old female with one slightly younger brother and a lot of stepsiblings. My parents separate/divorced in about 1978 and had joint custody of us. My dad never remarried when we were children although he did live common law with a woman for several years up until I was 14. My mom remained single for a few years after the separation but then got remarried around 1984. My stepfather has 5 children from 2 previous marriages.

2011 - Unrelated to the cancer now, my mom started having vision problems which required a lot of travel to specialized medical centres as where she lives is not equipped. My mom and stepdad were in Vancouver so they could see an eye specialist for my mom. By the fall of this same year, my stepdad (quite overweight) had a series of massive strokes which led to him being removed from the house they lived in up to the hospital and then directly into full time care. My mom was unable to care for him herself due to his needs being more than she could accomplish, not to mention not being able to move him on her own. To complicate matters, she is also an alcoholic. She spiralled downwards at this point, heavily drinking and became verbally abusive to both my brother and myself. Neither of us lives in our hometown although we both live in the same province (but not the same cities as each other). Our family has had a very difficult time over the years reconciling the alcohol abuse of our mother and stepfather so we don't communicate very well or at all. It seems like my brother and I got out of the situation and both "ran for our lives", trying to forget it all and put it behind us. I have been to many counselling sessions since I was in my late teens, my brother has not (until recently). I love my mom (the bit where she wasn't drinking) but I couldn't deal with her verbal abuse so I stopped taking her calls in late 2011 through the beginning of 2012 until my brother called to ask me if I knew of her situation at home. Apparently she had deteriorated to the point where she could not function at home on her own, even with home care. She fell down the stairs while drinking and broke her arm. She was admitted to the hospital and the application for assisted living began.

May 2012 - my boyfriend and I went to my hometown to help my mom but the entire time that we were there, she was still in the hospital so we couldn't get much done. My dad and his common law partner were still living in my hometown. My relationship with my dad is a fairly healthy one so he and his partner were a great help and comfort to me.

June 2012 - my boyfriend and I went to my hometown to help my mother pack up her house and move into assisted living. She was reluctant but came to terms with the move and it seemed as if this solved some issues for my brother and myself. We thought that we wouldn't have to worry so much about her falling and so on. She had numerous incidents with alcohol that summer in her assisted living suite but it still seemed better.

Fall 2012 - my mom shared with us that she had abnormal tests and there were cancerous cells so she was scheduled for a full hysterectomy in December 2012

Dec 2012 - my mom successfully had surgery and things were reported as stable and hopeful

Jan 2013 - the tests showed that they were not able to stop the cancer growth and that it had spread to nearby lymph nodes so she would be starting chemo. This made my mom pretty sick but she went for a full course and then she was scheduled for radiation at another centre in a town about 8 hours away where she would live in the cancer care house for 6 weeks during treatment.

Jun 2013 - my mom was in the last week of her radiation treatment when they shared the news with her that her cancer had metastisized in her spine/rib cage and they didn't think that even more aggressive treatment would help. My mom, from what I understand, also opted to not continue with more treatment at this time as she felt the chemo made her too sick. She went home to her assisted living. She told me her news over the phone while I was on my way home from a business trip from Edmonton. I just started a new position at my job in the spring and there is a degree of travel involved. Needless to say, I went into shock and didn't really process much for a few days. When I did, I cried a lot and then got practical.

I should mention here that one of the good things is that the assisted living and full time care units are right next door to each other, enabling my mom and stepadad to see each other more frequently so this seems to be a good thing. The airfare to get here is fairly expensive for two people (over $1000) but driving would take about 2 days time. My workplace has been fairly understanding about my situation but I am still in a new job with a lot to learn, a lot of responsibility and not a whole lot of cross training. I feel conflicted about the job and spending time with my mom. On one hand, I want to spend time with her to ease my mind and hers, to a certain extent and I don't want to regret that I didn't make an effort after she dies but on the other hand, I will still have this job after she dies and I need to be able to focus on it more at times. This leads to me overextending myself and feeling so overwhelmed that I feel like EPIC FAIL. My partner has been trying his best to support me and he is doing a good job but there is a limit to what you can ask of someone else as well as what they can do.

Sep/Oct 2013 - my partner and I went up north to see my mom for just over a week. She was in her assisted living suite still, looking frail but not as bad as I thought she might. It became clear that she was at the point where she would have to start thinking/deciding whether she would move to full time care. Her doctor, myself and the site manager all felt that it was important that she still make as many decisions for herself as possible. She chose to stay in her assisted living situation with home care a few times a day. It was a very difficult visit as the reality of the cancer and her death sentence became clear. Her doctor told me that he thought that she would likely go before Christmas. I left my hometown with half a mind that she might go before I could visit again.

Nov 2013 - we went back up but this time only from Friday afternoon to Monday morning. She had fallen several times in the last 1-2 months since I had seen her last. A combination of the morphine, drinking episodes, and weakness/pain from the cancer. She had been admitted to the hospital and then moved to a room in the full time care unit but on a temporary respite basis as they felt she needed extra attention and that her home care attendants needed a small break. Neither my brother nor myself feel that it would be wise to apply for the compassionate care leave to be her primary caretaker. Myself, I don't feel like I would have the expertise or patience needed. My brother and mother were barely on speaking terms until about a month ago. I try very hard to keep in touch with my mom and be there for her but she can be a very demanding, mean spirited and difficult person to be around. This is partially the alcohol, partially a very insecure personality, and partially the pain. Whatever it is though, there are times when it's best if we are not around each other. In some ways, she looks better but in others I can see the decline in her health again. The site manager (also a school friend of mine) tells me that they can leave the room that she is in open for her (if she chooses to stay there) as a palliative care room until the end. This might be a good thing as she is starting to leave bills unpaid and so on. She gets confused hourly but they still deem her of enough sound mind to make her own decision. I feel the same way somewhat although I am encouraging her to consider staying in the room that she is in. There is so much more company and help here although it does limit her freedom somewhat and she is not near her home, which is important to her.

Emotional side - I wish that I felt that I could stay with her and help so she could stay in her apartment but I feel like I cannot. I am still working, it's really busy this time of the year for me as I am in a management transportation planning position at a courier type company. As I said earlier, my boss is pretty good so I have some option to work from home on some days which is good because I am pretty prone to random crying. I looked up cumulative stress symptoms http://www.helpguide.org/mental/stress_signs.htm and found that I matched literally every symptom. I constantly forget things, I cry a lot, I have gained weight then lost it, I am sometimes not hungry and other times starving, irritable, anxious, have sleep issues, headaches, agitation/sense of not being able to function and so on. In order to manage all this, I have started going back to the gym, riding my bike more (which I love), going for weekly massage, and counselling. It all helps at the time but then when I am feeling really low, it's like I am all alone in this and nobody can possibly understand how I am feeling. There are so many emotions attached to this kind of thing. Guilt because I want this to end so I can start planning my life again and I am not in this limbo. Sadness because I want my mom to be better when I know that is not possible and even if she was better there would be other issues. Anger because I feel pressured from others to do what they THINK I should do or people think they are helping by telling me "It's all for the best" when no, it really isn't. Also, many people feel because she was a horrible person at times when drinking that maybe I shouldn't be doing or giving as much as I am. I don't see the sense in that and think, down the road, I will only feel worse for not doing all that I can which I am. I know that I am doing the best that I can do. It was really sad though the other day because my mom said to me "One of the worst things about this now is that she doesn't want to die. She doesn't want to miss out on life events. She wants to get old". My partner and I were going to try for a late life baby (she has no grandkids from my brother or I) but now doesn't seem the time and it will also be made harder by all the stress. She will miss that if I do. We have been thinking about getting married but again she won't be there. My brother doesn't seem to be able to find his peace so there is that driving us all apart. I feel like it's too much stress for me and my partner. I hope we make it through this. I don't want to overburden him (or anyone) but I also don't want to run around telling everone "Hey, my mom is dying" or crying with strangers. I want to tell people so they will cut me a temporary break (either at home or work) but that doesn't alway work as some people have a different view of appropriate behaviour when dealing with family members dealing with anticipatory grief. I think that a lot of people who have not had to cope with this don't understand the level of grieving happening even now prior to her death and how that won't change how I feel *after* her death.

Gah, sorry this is very long but apparently I had a lot to say. I hope to offer support and comfort to others going through this now as well as gain some insight into how others are dealing with it. If nothing else, just band together and we can all hope for a better tomorrow. Peace! :)

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Hi Dosh and welcome. I am relatively new here too. My gosh Dosh, how many shoulders do you have with all that weight on them? I think you are doing a marvelous job of laying down all of your thoughts, worries and concerns and you seem to know how to take care of yourself in terms of exercise, talking therapy and such like. You know, we can love people because they are our Mother, Father, Sister or Brother but it doesn't' mean we have to like their behaviour OR feel guilty because we feel a curtain way.

You know you are going through anticipatory grief and that is a tough one because you know she is not going to be around much longer as opposed to it coming out of the blue. And your right, people cannot know how you are feeling exactly, they can only have empathy for you if they themselves have been though a similar experience.

You seem to have very mixed emotions over all of this. Maybe you could try to have a heart to heart with her and tell her how you feel? I think that it will be something she as a mother can have some control over her situation by seeing your heartfelt feelings. Its very common and normal to want some control over our lives even when we are faced with death. And maybe if she hear you, it would give her something to work on.

I hope i haven't sounded too interfering and i think you are very brave but you need to stop beating yourself up but venting your inner stuff on here, i believe is a great resource.

Warm wishes

Sogovia

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Dosh Garnett

Hi Dosh and welcome. I am relatively new here too. My gosh Dosh, how many shoulders do you have with all that weight on them? I think you are doing a marvelous job of laying down all of your thoughts, worries and concerns and you seem to know how to take care of yourself in terms of exercise, talking therapy and such like. You know, we can love people because they are our Mother, Father, Sister or Brother but it doesn't' mean we have to like their behaviour OR feel guilty because we feel a curtain way.

You know you are going through anticipatory grief and that is a tough one because you know she is not going to be around much longer as opposed to it coming out of the blue. And your right, people cannot know how you are feeling exactly, they can only have empathy for you if they themselves have been though a similar experience.

You seem to have very mixed emotions over all of this. Maybe you could try to have a heart to heart with her and tell her how you feel? I think that it will be something she as a mother can have some control over her situation by seeing your heartfelt feelings. Its very common and normal to want some control over our lives even when we are faced with death. And maybe if she hear you, it would give her something to work on.

I hope i haven't sounded too interfering and i think you are very brave but you need to stop beating yourself up but venting your inner stuff on here, i believe is a great resource.

Warm wishes

Sogovia

Thank you Sogovia for your kind words. Between the time that I first wrote this and now, my mom passed away. She went on Saturday, December 14th in the evening. I wasn't able to get back in time to see her one last time but I feel satisfied that I had been twice before this time. Lots of mixed emotions, for sure, and some that may not be resolved in a traditional manner now but what can I do now... Now, at least, I can properly grieve for her. I am still in a bit of shock and processing my mom's death. Again, thanks for responding, I appreciate it. :)

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