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How do other people deal with caring for a loved one 
Started by Charlie1
03 Mar 2015, 8:08 AM

since my mom has been been diagnosed with secondary liver cancer in January, I feel like my life has stopped and I'm going through the motions. it has been busy getting things set up, with home are and hospice and banking. This is all in my shoulders and my moms. shes still living on her own for now and we will keep her at home as long as possible, but some days I feel so overwhelmed by everything, I work full time, and have my boyfriend. some days are ok but others I feel overwhelming grief and sadness.
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Reply by KathCull_admin
03 Mar 2015, 9:41 AM

Hello Charlie1
Welcome to our community Charlie1.  The members here will understand very well the responsibilities you carry.

“..my life has stopped.. it has been busy” those words give such a clear picture of how your life has been the last couple of months. I imagine the time before your mom’s diagnosis were stressful too.  You do carry a heavy load – the physical, financial and emotional plus the sadness you feel and anticipate.

Kika started the thread Caring for my mom who was recently diagnosed  where she talks about caring for her mom as well.

If you are not sure what is available in your area if you click on Programs and Services you will be directed to a map and from there you can get information on what services are available for your mom. Does your mom have any homecare?


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Reply by Charlie1
03 Mar 2015, 10:12 AM

Yes she has home care, I can honestly say that since she was diagnosed with secondary cancer. Everything has moved very quickly within the system, home care has been set up now for afew weeks and they have been wonderful, very knowledgeable and helpful. 
the paperwork for hospice and evything has been set up.  Even a goals of care. our plan is to keep her at home as long As we can. she is doing farely well right now, the morphine is making her a little dopey and sleepy, but she still manages to go for tea. In her building occasionaly, I spend as much time  as I  can with her, I go and cook a few days a week, and do her shopping. It's the feeling of guilt when I'm not there all the time, I would like her to come live with me but she is stubborn and refuses.
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Reply by worried daughter
03 Mar 2015, 5:51 PM

Hi Charlie1,

I lost my Mom in June 2014 and she too was very stuborn! It sounds to me that you are doing everything possible for your Mom. We have to respect the wishes of our loved ones no matter how hard it is for us. It's very important for you to take time for yourself and I know you feel guilty when you do but try not to...take the time with your Mom to say the things you need too! When you are feeling overwhelmed I hope you will come on here and vent as much as you need. We have all been through this in one form or another and are here for you. I am sending you a virtual hug Charlie1 and will say a prayer for you and your Mom.

Hugs Tracy

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Reply by Xenia
08 Mar 2015, 2:56 PM

Good Morning Charlie
Caring for a loved one who has a terminal illess is a feeling of mixed emotions, love, worry and as you say overelmed feeling.

You are fortunate that you have care coming in and all the paperwork has been done as this is very worriesome for many of us on the CVH had to work had to achieve.  The fact that she has homecare is the main thing.

Feedling guilty is what many of us have gone through.  Not that we have done anything wrong, the feeling of guilt is that we are not with our loved on 24/7 in case they needed us.  We feel we have to be there for everything yet we have our own lives to worry for and if we have a family we need to care for them and if we work we need to be at the job.

Your mother's illness will let you know when she is able to make a choice of living with you as she may feel the need to be there however you must prpeare yourself for the caring 24/7 and this can be very hard as most of us who have cared for a loved one at home know.   It is good you have prepared your home for her home coming now you must prepare yourself for looking after yourself as well. Will  you have a caregiver in the home when you are at work?  Do you have family, sister, brother, who will come in and relieve you so you can have time for yourself and your boyfriend.

I cared for my husband for 18 months before he passed away and the last few weeks were hard as it was in and out of the hospital, trying to find a care home as he was not ready for hospice and I can appreicate all your mixed feelings about caring for a loved one.  You want the best, then guilt sets in.

That was when I turned so often to the friends on CVH (Canadian Virtual Hospice) and received good advice, understanding and feelings of being able to let the guilt go and know that I was and had been doing all I could for my husband and when the time came I could no longer be the caregiver as he needed more than I could give and not get ill myself by wearing myself out doing all things.

Please keep in touch and read some of the other messages such as on Who Advocates for me, there is such good advice there and on the other messages as well.

I send you virtual hugs and prayers to help you through your caring for your mother.

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Reply by Charlie1
08 Mar 2015, 4:53 PM

Thank you so much for sharing with me your story. It really helps knowing that there are other people who are going through this also, it's very hard to try and stay strong for everyone, and be the main support in my family. And the hardest part is also not knowing, she refused any more testing after we found out it was in her liver. And now they have increased her morphine, so it's making her a little dopey. But she is actually doing really.. Very tired. But still on living on her own, which is even harder some days, i work full time, and just feel mentally exhausted some times. 
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Reply by Nouce
08 Mar 2015, 7:00 PM

Greetings, Charlie,

I had my parents living next door for 10 years, and was their primary care-giver throughout, including the last two years when they failed dramatically before they died. In the midst, my husband reached the late stages of his chronic lymphocytic leukemia; he's still living and at home, but I care for him every day, along with aides. There's no way to avoid the guilt game, or the feeling that your life is not your own. It comes with the territory.

But I am trying to learn to build in spaces for myself. It's scary. This week I went away for two days to a camp in the mountains. I felt guilty as I left, but when I came back I felt a little stronger, and ready for the next period of care-giving. Now, to figure out how to keep up this pattern.

I send you lots of love and courage, and patience with yourself. You are a loving, caring daughter and are doing absolutely everything you can--and doing it well. Take care of yourself (some people say that glibly to us caregivers, but when we say it to each other we understand what that means).

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Reply by Charlie1
22 Mar 2015, 5:11 PM

oh i need advice please, my mom is still at her own place, doing fairly well, if that is how you want to put it i guess, i wnat to go over there eveyday but the last few days she doesnt want me too!! she says she is just sleeping anyway and if i go there she cant sleep, do i respect that or go anyway, shes been sleeping alot lately and not eating as much, but we also have her on slow release morphine since wednesday, are these changes normal or is it becuase of the new morphine. i dont know what to do??? shes still mobile but just wants to sleep.
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Reply by Xenia
22 Mar 2015, 5:50 PM

Good Morning Charlie:

I cannot offer you any advice on what is causing your mother to react so differently day to day, however, having been through much of the same symptoms with my husband I turned to our palliative care nurses, his doctor and ask a professional on the CVH.  There are so many different symptoms one sees and hears from a loved one when they are on morphone and changes in their medication.

The changes in eating patterns, etc may be an indication that she is too tired to eat and it is an effort for her to chew and eat her food.  John, my husband, who was on two types of morphone slept a lot as well.  Sleeping helped him get trhough the pain and as our doctor said.  The morphone was to make him comfortable and ease the pain, this is part of palliative care.  

I too worried about him sleeping but came to realize this was the best for him and as such was comforted in knowing the guilt of not being able to be all things for him all the time was not justified and I had done all things possible for him, comforting him, caring for hime and loving him through many a difficult day.  John passed away January 10, 5 days before our 59th wedding anniversary and I found this very difficult to deal with, however, the doctor and palliaitve care nurses helped me understand that once again I and family had done all humanily possible caring for him the last 18 months of his life.  We gave him love, caring and his wish to stay home through his illness but he was in hospital the last 5 days of his life. 

Your mothers wish of not wanting you to come over and be with her may be that she does not want to burden you.  Does she have palliative care coming in, is it safe for her to be home alone, has the doctor or nurse talked to her about needing someone to look after her in her home?  Perhaps she feels she needs to be alone in her illness and needs to have someone other than you speak to her about why she doesn;t want you to visit her.  Perhaps someone from her church if she attended one, perhaps a counsellor from the hospital who is aware of her condition.

I share you despair and wish I could reach out to you in a more affirmative way and let you know that you are not alone, even though it feels like it is, and there are many on Canadian Virtual Hospice who have and are going through what you are facing at the moment.  

I encourage you to get in touch with your family doctor, the palliaitive care nurses and the Ask a professional on this message board. I send you love and understanding and trust you will find some solace in the messages on CVH.

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Reply by Charlie1
22 Mar 2015, 6:28 PM

She has home care calling or dropping in daily, i usually go everyday after work and see her and make dinner,  and we have everyhting inplace if hopsice is needed, when the time comes which i dont know how quick, i will stay with her or still try to connvince her to move in with me, which im sure she will still refuse lol she is very stubborn and shows ittle emotion,and very independant. i just dont know what the time frame is, your right when she says she doesnt want to be a burden. i just dont want to be pushy and make her feel bad. this is so frustrating sometimes, trying to figure out what is right or wrong. And shoudl i be taking  a leave from work now or do i wait....i know we all wish there was one answer for how this goes.
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