Help? Discussion on how to deal with caregiving a family member. How to not lose yourself...

Sherry Dowling

Hello anyone,

For the last few months I've been my younger sisters primary caregiver. My sister was diagnosed July 2017 with stage 4 lung cancer (I don't know which kind) and is not seeking treatment (I am fine with her decision). She is still with  us. 

 

I've got a list of things I'd like to discuss:

 

1. What to do when your family will not help you with care or barley even visiting and will not understand they need to be schooled on her medications, if/when they visit.

2. What do I do when my sister wants me to make her alcoholic beverages (she has been an alcoholic for years). I hate this part because I have made her drinks in the past and she gets angry that "The dying chick" has to make her own drink.

3. What do I do to help myself, when there is no one here to help her but me.

4. What do I do if/when her husband (also an alcoholic) although he's trying to drink less, makes her more anxious when he is trying to help her.

5. She is petrified about dying, is there anything I can say that will comfort her?

 

There are more things I'd like to get off my chest, but am new to this forum. I am looking for someone who is going through or has been through the same situation.

Thank you.

 

DanieJo76

Here for you

Good Evening,

I understand where you are coming from. My father was diagnosed with Non-Small Cell Stage 4 lung cancer this October. He had small cell 10 years ago that was cured. Small cell is not staged so your sister may have non-small cell. My father and mother lived an hour away and I had to take care of my family and keep my job, but I was his primary care giver as my mother was in denial until the end. I agreed with his choices, but my mother would not. I am not saying that giving your sister a drink is a good thing, but it may be her way to deal with the pain. My father did not tell us he was in pain until well into his treatment, by that time he was in lots of pain and was very anxious. The doctors told us he would not last until Feb, except for the oncologiest that kept saying there was hope. The pallative care doctor gave him pain meds and meds for anxitey and it really helped at the end. He had been waking up in the hospital and pulling all the tubes out, seeing things that weren't there and being very argumentative which was not his nature. I only tell you this because no one told me how he would change or what to expect. He wanted to go to chemo again, even though he had hospice care at home. I stayed the night with him so I could get him up early in the morning. I woke up to him coughing which was normal but it sounded funny, this was the night that he died in my arms. It was not something you see on a movie where they just fall asleep, it was a very hard thing to witness and mom was on the phone with 911 while I held his hand and tried to keep him from choking. When 911 got there, there was no need for CPR, etc. I don't know what to say to comfort your sister, my father would talk in his sleep about dying, but when he was awake he was scared. All I could do was hold his hand tell him I loved him and I asked questions about what it was like growing up. Research helped me, it helped me prepare and realize that he was in his final weeks. No matter what I could not make my mother understand and she would relay to others that he was on the mend, so no one really understood what I was going through except others who cared for loved ones that had been through it already. What I hate most is that everyone who hears that he had lung cancer shakes their head in disgust and says "He smoked didn't he?" Like that made him who he was, he did not smoke much of his life, but he did have a hazardous job and my mom smoked like a chimney. I wish you and your sister the best and you can reach out to me at anytime. I will be here with non-judgemental, friendly advice. 

Danielle

Sherry Dowling

DanieJo76 said:

Here for you

Good Evening,

I understand where you are coming from. My father was diagnosed with Non-Small Cell Stage 4 lung cancer this October. He had small cell 10 years ago that was cured. Small cell is not staged so your sister may have non-small cell. My father and mother lived an hour away and I had to take care of my family and keep my job, but I was his primary care giver as my mother was in denial until the end. I agreed with his choices, but my mother would not. I am not saying that giving your sister a drink is a good thing, but it may be her way to deal with the pain. My father did not tell us he was in pain until well into his treatment, by that time he was in lots of pain and was very anxious. The doctors told us he would not last until Feb, except for the oncologiest that kept saying there was hope. The pallative care doctor gave him pain meds and meds for anxitey and it really helped at the end. He had been waking up in the hospital and pulling all the tubes out, seeing things that weren't there and being very argumentative which was not his nature. I only tell you this because no one told me how he would change or what to expect. He wanted to go to chemo again, even though he had hospice care at home. I stayed the night with him so I could get him up early in the morning. I woke up to him coughing which was normal but it sounded funny, this was the night that he died in my arms. It was not something you see on a movie where they just fall asleep, it was a very hard thing to witness and mom was on the phone with 911 while I held his hand and tried to keep him from choking. When 911 got there, there was no need for CPR, etc. I don't know what to say to comfort your sister, my father would talk in his sleep about dying, but when he was awake he was scared. All I could do was hold his hand tell him I loved him and I asked questions about what it was like growing up. Research helped me, it helped me prepare and realize that he was in his final weeks. No matter what I could not make my mother understand and she would relay to others that he was on the mend, so no one really understood what I was going through except others who cared for loved ones that had been through it already. What I hate most is that everyone who hears that he had lung cancer shakes their head in disgust and says "He smoked didn't he?" Like that made him who he was, he did not smoke much of his life, but he did have a hazardous job and my mom smoked like a chimney. I wish you and your sister the best and you can reach out to me at anytime. I will be here with non-judgemental, friendly advice. 

Danielle

Thank you Danielle

Thank you so much for responding, I was not sure I was using this correctly. I'm so sorry you had to see your father pass like that, it's sounds so terrible and painful, not just for him, but for you as well. This is one of my greatest fears that my sister will go down hard and like you wrote "not like on TV". I've had a few times, where I thought it was the end (of course I was by myself). Yesterday, my sister aked me to call her husband home from work, she decided she didn't want to live with the pain anymore and wanted to go to the hospital to get a morphine drip to end her life. It was so scary. Her hospice nurse came over and her pain was due to me, not giving her medications correctly. I've been with her for 2 months, 24-7 and it's been overwhelming. I cannot belive I was the cause of her pain (I know it's the cancer as well), but I was in charge of her medications, and apparently am so exhaused that I obviously didn't remember to take care of her pain like a nurse would. I'm trying not to get so down on myself about this, but it has opened all of our eyes, that we need more people to help. Her husband works all day, and I'm just here, not being productive. I sleep when she sleeps, I eat poorly, I've only been out of the house twice since I got here. I've asked my sister to be more productive around the house, start packing boxes, cleaning items that can be sold and such. Not sure her husband is on board with it. My sister still smokes and does drink some. Luckily, her hubby has cut back on the booze and is more aware, however, he is an engineer and cannot really read my sisters expressions. He tends to sigh alot when she asks him to do something, which pisses me off A LOT. I'm angry at my immediate family members because they have not stepped up. My brother, who thinks he's the big brother only comes over when I tell him to, his wife apparently cannot handle it either. She's made excusess time and again for not being able to come over to even visit her. I'm trying to not let that get to me (apparently I'm venting here).. Today is a new day, my sis feels better since we've been giving her morphine every hour to get her pain under control. Even though this is tough, I would not want to be anywhere else. I feel so blessed that she has let me take care of her. I dread the day she's gone, but my biggest concern is her pain. I don't want her to be in pain anymore.  I really appreciate you responding to me, writing this is very cathartic, especially with someone who has been in this position. Thank you Danielle.  I am here for you as well. 

Sherry Dowling

DanieJo76 said:

Here for you

Good Evening,

I understand where you are coming from. My father was diagnosed with Non-Small Cell Stage 4 lung cancer this October. He had small cell 10 years ago that was cured. Small cell is not staged so your sister may have non-small cell. My father and mother lived an hour away and I had to take care of my family and keep my job, but I was his primary care giver as my mother was in denial until the end. I agreed with his choices, but my mother would not. I am not saying that giving your sister a drink is a good thing, but it may be her way to deal with the pain. My father did not tell us he was in pain until well into his treatment, by that time he was in lots of pain and was very anxious. The doctors told us he would not last until Feb, except for the oncologiest that kept saying there was hope. The pallative care doctor gave him pain meds and meds for anxitey and it really helped at the end. He had been waking up in the hospital and pulling all the tubes out, seeing things that weren't there and being very argumentative which was not his nature. I only tell you this because no one told me how he would change or what to expect. He wanted to go to chemo again, even though he had hospice care at home. I stayed the night with him so I could get him up early in the morning. I woke up to him coughing which was normal but it sounded funny, this was the night that he died in my arms. It was not something you see on a movie where they just fall asleep, it was a very hard thing to witness and mom was on the phone with 911 while I held his hand and tried to keep him from choking. When 911 got there, there was no need for CPR, etc. I don't know what to say to comfort your sister, my father would talk in his sleep about dying, but when he was awake he was scared. All I could do was hold his hand tell him I loved him and I asked questions about what it was like growing up. Research helped me, it helped me prepare and realize that he was in his final weeks. No matter what I could not make my mother understand and she would relay to others that he was on the mend, so no one really understood what I was going through except others who cared for loved ones that had been through it already. What I hate most is that everyone who hears that he had lung cancer shakes their head in disgust and says "He smoked didn't he?" Like that made him who he was, he did not smoke much of his life, but he did have a hazardous job and my mom smoked like a chimney. I wish you and your sister the best and you can reach out to me at anytime. I will be here with non-judgemental, friendly advice. 

Danielle

Losing myself

Hi Danielle,

 

I am wanting to go home and take a 2 week break from taking care of my sister. I am scared to bring it up to her because I fear she'll see it as abandoment. I've been taking care of her for 4 months with 1.5 days of repreive. I need to take care of medical needs for myself that I cannot get in her state. I need and want to see my kitties, I need an want to get brain and body back in order. I am at a crossroad. I do not want to see her take her final breath. She has whittled away to less that 100 lbs. She barely speaks, unless she's angry. She is holding onto something, but no one knows what. We do have other caregivers to help her. I want to just toss the daily/nightly duties to other people and let them take the wheel. My mind is in pretty bad shape. Do you have any suggestions on how you coped with your fathers caregiving? I feel like I'm losing myself in all of this. Thank you for any help you can give me.

ACU

Take the time you need

Sherry, I empathize with your pain and feelings of guilt. I am just starting a similiar situation although there are no other possible caregiver save for me and im terrified of the toll my mother's illness will take on her and I. That said, you cant be expected to give your all without caring for your own well being. I know it will be difficult to step away for a couple of weeks, but i think that being upfront with your sister (and all parties) is the best you can do. Take the time and heal yourself. Do it guilt free. Then come back and be that rock your loved ones need. I don't necessarily want to see my mother pass as well, but the fear of her passing without her only son by her side is unbearable. It will tear my heart out but i will be there to say goodbye to my mother when that time comes.

We only get one chance to do this 'right', so i think we need to trust our gut and intentions understanding always that we did/are doing our best.