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Confused and crushed caregiver

mommyandme
Posts: 12
Joined: Aug 2012

Hi everyone
Apologies for a very long first post, but after being a lurker here since august I've reached a point in my caregiver situation where I am just lost. I realise there is a caregiver forum here as well, but this board seems more active and I could use some advice from both caregivers and patiens.

Backstory:
I am the only caregiver to my mother (in her 60s, I'm mid 30s) with stage IV colon cancer, mets to liver and lungs. Inoperable (including primary tumor in colon). She lives alone and I have no siblings or family, so the full responsibility is on me alone. It's been almost a year since her diagnosis, almost a year since the doctors "gave her" one year to live. Only recently have we come to realize the doctors are probably wrong about that.

But the year has been devastating. At the same time my mother got her diagnosis, her sister (my beloved aunt) was also diagnosed with cancer. We were crushed when we lost her this spring, but we are trying to fight on - for her. We were with her till the end, and saw how gruesome cancer is. Had she been alive, she would have been the person helping us both in this situation. This is still very hard for us, mentally.

After 11 rounds of Folfox the tumors were stable enough so they put mom on a break this summer. The break turned out to be 4 months long, even though I asked them if this was not very risky. I was unfortunately right. One of the tumors in her liver has doubled in size since august, to almost 4 cm. The biggest one is 5 cm. But the biggest shock is when they told us she has about twenty! tumors in her liver. She will begin folfiri (5FU + ironetecan) shortly. She cannot have avastin due to medical history.

Questions:
That was the background, now for the questions. My mom and I have agreed to always get the same information from the doctors, so I can't ask them. But the information I need, is information I don't want her to have. I have a very busy job, and I've been trying to keep my head above water but it is so difficult to combine it with being a caregiver. I often end up in tears at work, or end up having to ignore important calls because I'm in the hospital with her. I've had to change some of my work tasks and priorities, but I realise that when the time comes when she gets sicker, I want/need to be with her 100%.

My problem is that I don't know what to do with the information we have, and I can't ask the doctors behind her back. Does 20 mets to the liver, one very fast growing one, mean that she is nearing the end? How long can the liver function filled with that many tumors? Should I carefully tell her to start making preparations for the time to come, while she is still feeling healthy? What's killing me is what if I keep on working full steam ahead, and something suddenly happens and I wasn't there with her. Can I leave her alone at night? Can I even let her live alone in that big house, or should I move in with her right away? How serious is this? I know some of these are questions with no answers, but any kind of advice would be appreciated.

I feel so alone in this, having no one to ask for help, and still trying to be strong for her. I love her so much and I just don't want to have any regrets, or not be there with her in a time of need.
Thank you to anyone who reads this long thing:)

Lovekitties's picture
Lovekitties
Posts: 2878
Joined: Jan 2010

You and all other caregivers are welcome here. Even with the caregiver board, I feel there is much support and information you can get from those who are dealing with this diagnosis.

Regardless of age or medical conditions, folks need to have legal documents regarding their wishes, both medical and finanacial. Even at your age, particularly since you have no close family other than your mom. Perhaps the way to approach her with this task is to do your own and encourage her to join in doing hers. Creating a will, financial power of attorny and advanced medical directive insures that your wishes will be followed, but they are not written in stone. In fact they should be reviewed and changed as life situations change.

There is no getting around the fact that your mom's situation is not good. Yet, there is always hope until all treatment options have been exhausted. There are some folks on here who have been deemed inoperable, only to have gone thru treatments and ultimately been able to have surgery.

None of us knows when our time will be up. It could be today from an accident or it could be many decades away due to old age. You mention that she lives alone. The doctor should be able to give advice regarding live in care requirements. Just let mom know that if/when she needs it you are more than willing to move in the help share the daily tasks.

You cannot under any circumstances put worry and blame on your shoulders if something serious changes and you are not physically there. The best you can do is talk with your mom to see if she feels she needs help and wants it. Perhaps you could suggest a medical assistance alert service...like the ones shown on tv. They are good for folk who live alone. It might give you and her a bit of comfort knowing that she can press a button for help if she needs it.

Come back and let us know how you are doing and ask all the questions you want. We will try to help.

Hugs to you and mom,

Marie who loves kitties

mommyandme
Posts: 12
Joined: Aug 2012

So true everything you wrote. And I will try to use myself as an example when asking her about her affairs. And am even inspired get started myself! Earlier when I've carefully tried to make some hints, she either just cried or she felt too good to want to think about it.
Hugs back to you, and thank you so much for taking the time to reply.

here4lfe
Posts: 294
Joined: Jan 2010

Leaving her alone at night - it depends on what sleep/pain medication she is on. If she does not sleep through the night you may want to have someone with her.
Getting her affairs in order - it will happen anyway, so why not do it now while she can participate.
Treatment and prognosis - No one can say for sure. The next time you are at the doctors with her, just ask them for complete honesty. If your mom starts to decline, you will know. My wife went through a lot of treatments and tolerated them well. People on this forum talk about quality of life versus quantity, so you may want to talk to your mother in those terms.
In the end, it will be up to your mother what she wants, so just try to help her as she travels this road.

Best.

mommyandme
Posts: 12
Joined: Aug 2012

All good points. Her sleep meds no longer have effect, but I try to stay with her at least weekends and the days of treatment. But sometimes we drive eachother mad and need breathers:) About prognosis, mom switches between wanting to fight and wanting to give up. She is very clear about not wanting to be in pain, though. I have promised her I will do everything in my power to prevent that. My heartfelt condolences to you, I read about your wife here. I hope you are doing as well as can be...

tko683
Posts: 257
Joined: Aug 2011

Mommyandme,
First I would like to say that your mom is very very lucky to have such a wonderful daughter......I am the caregiver to my husband who also has stage 4 and has been fighting for a little over a year year. I will say that FOlfox did not work very well on him but he is now on folfiri with Vectibix which is strinking all his liver tumors. The doctor said he had a complete response.
I think that the questions that we all want to know ----how long do I have to live===can't be answered by the doctors because they don't know. I do agree with everyone else though, it is good to have some of those hard discussions now....as hard as it is. I pray that folfiri is able to shrink those tumors. I have seen many people on here who have had great results with folfiri. Hugs,

mommyandme
Posts: 12
Joined: Aug 2012

Thanks so much for your reply. My mom started on Folfox and in the beginning it shrank her tumors some milimeters, but mostly just kept them stable. So happy for you and your husband that Folfiri worked! She has just started Folfiri this week. Vectibix I haven't heard of, but we're not in the US so I guess some drugs are different. Would you believe Folfiri is called Flir here, which is the word for GRIN in my country. I am glad the doctors don't know how long, but mad that they told us anyway... Good luck and hugs to you and your husband.

have2believe
Posts: 135
Joined: Dec 2010

I'm also a caregiver for my mom, though she has stomach cancer. I'm 27 and my mom is 60. Because she's a single mom and isn't fluent in English, I'm the person that manages her care. I think it's good to be prepared no matter what, as in just in case. I was encouraged to make sure my mom has a will and Power of Attorney. If anything should happen, someone told me that getting access to her things can be really challenging and slow. Wills are not fun to talk about, but it's necessary. I used legal zoom and it takes 5 minutes to complete. It's good to have and there's also a place where she can complete her wishes, etc. I think it's best to do it when she's feeling well.

With regards to time, I don't think doctors can really say. It's really stressful managing work and caregiving, but my advice is to just be there as much as you can. I am always thinking about how to make life meaningful.

mommyandme
Posts: 12
Joined: Aug 2012

That puts us in a somewhat similar situation, wishing you all the best on the hard journey. I notice that my mom has a hard time remembering everything the doctors tell her, remember names of medications etc, mostly because she gets so so nervous when she is there. So we always go together, but she still doesn't want me to speak for her. At some point I guess I have to. I am more determined than ever to have the convo about her affairs, after all of your good advice. Not sure Legal zoom will work here in Scandinavia, but as a way to get us started it could be good:)

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Getting medical information from your mothers onc and insurance provider are legal issues which may be easily addressed. First ask her doc (in her presence) what is required for you to be able to get this information. I've authorized my father and my sister to have full access to all of my information. It's important to remember that knowledge is power. I like to know everything that's going on with my case, but your mom may not so talk with her about what her wishes are.

As for living alone, I was 51 and living alone when I was dx'd. During that first year, there were so many times that I had to be alone and should not have been. This could be something as sudden as having bad diarrhea which resulted in laying on the bathroom floor for as long as 10 minutes in agony. If it is feasible for you to do so, I would recommend considering moving in with her and getting a Life Alert system in case of middle of the night occurances.

Your mother is truly blessed with having such a kind and loving daughter and I pray for strength for the both of you.

God Bless

Ray/Doc

mommyandme
Posts: 12
Joined: Aug 2012

Thanks so much for useful input and kind words. I'm not in the US, so things work a little differently here in Scandinavia but I realise I just have to start figuring out exactly HOW it works:) We are so fortunate to have free healthcare (no insurance troubles), but the downside is that there's a new onc almost everytime we are at the hospital. So it's like starting over each time, and none of them know us.

She is a bit hesitant about giving me full access, but we go to all appointments together and get the same info. But last week the onc took me aside to stress the seriousness of the latest development, which I have not dared to tell her yet. This was very weird for me, as I had not asked to speak with him alone. And it was after we both got all the facts, but he seemd to think she was too stressed to hear that it was serious.

So sorry to hear about the agony of that first year! We have yet to experience the horrible rumoured Folfiri-diarrhea, but she only had her first treatment two days ago. I stay with her the days after treatment and weekends, but I do plan to move in with her at some point. So far our plan is to see how she reacts to the Folfiri.

Thanks so much for replying and wishing you blessings and strenght right back.

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

All the caregivers out there have it so hard. You have to be strong for everyone and yet can't always show your emotions to others. This forum is a great place. It sounds like you and your mom are relalistic about what is going on so talking and planning the what ifs should be done right away. Having power of attorney, will ect...needs to be done. In your area there may be groups that can help you in taking care of your mom at mimimum costs. My neighbor pays someone to stay overnight with her. Its not cheap but there is such piece of mind. Your church may have volunteers to help out too. Would your mom consider staying with you since that may be more convienat on you? Stay on the board and address one issue at a time to see what kind of response you get from the members. Praying hard for you and your mom. Jeff

mommyandme
Posts: 12
Joined: Aug 2012

Thanks for the kind words. Your description is spot on, but though it is hard to be a caregiver I try to remind myself it is nothing compared to the fight of the patient. My mom and I sometimes say that "we" have cancer together. I'm going to look into what care offers we have in our country. Though I know my mom prefers me rather than strangers in her house, a little help with the care could give me some extra strenght to be there for her. My place is too small. I'll definitely take the advice to address one issue at a time, instead of pouring it all out in one confused marathon post:) Thank you again!

lepperl's picture
lepperl
Posts: 39
Joined: Jul 2012

Your post brought me to tears. This damn cancer. As far as liver mets. I am not sure if each cancer is different but a friend of mine has been stage 4 ovarian cancer with liver mets for 5 years. I still talk to her. She is trudging along. No one has an expiration date posted on their body. I believe only God knows. That being said it is a good idea to get affairs in order. I did it after diagnosis and I still plan to beat this thing. I put everything in a box and then put it away so I could move on and fight this thing. I hope they get your mother back on chemo soon. Maybe she could shrink these things. I wonder if she would be eligable for an HAI pump. They pump chemo right into the liver and it bypasses the systemic system so I think the side effects are less. Its worth asking about. Only you know if you can leave your mother alone. I can understand how you would worry. It seems when the end comes it comes on fast. Just take it one day at a time. I am so sorry you have to go through this but what a wonderful daughter you are. Being a care giver sometimes is tougher than being the patient. I will keep you in my thoughts and prayers
Lori

mommyandme
Posts: 12
Joined: Aug 2012

Sorry I didn't mean for you to get teary eyed reading this:) I hate cancer so much too. I hate how it shows no mercy. But at least it doesn't discriminate. I loved what you said about getting the affairs in order, and putting it in a box so you can fully focus on beating this. That is exactly what I will tell my mom to do! A very good way to look at things.
As for the HAI pump, I do not think it is offered in my country. At least the onc just shook his head and said a similar procedure was out of the question for her. He never explained why though, so I will definitely ask again!
After reading all these wonderful replies here, I think I will look into getting some help for mom, for when she wants to. Right now she doesn't want help from anyone but me. Wishing you so much luck in the fight.

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

of all i am sorry you & your Mom are going thru this. i would check with hospice to see what they might be able to do with the nite time. also during the day to help you out. hospice care does not mean it is the end of life for someone. they were wonderful for my Mom & Dad. they would come & relieve my Dad so he could do what ever he wanted. sometimes he played golf or had lunch with buddies. there was no charge. they also if we wanted them to, which we did not, clean house, give her a bath, do grocery shopping. states may vary but i would check with them. prayers for both of you.
hugs
judy

mommyandme
Posts: 12
Joined: Aug 2012

What a cute baby in your picture:) We did get a little help with someone to talk to at the hospital's hospice institution when mom lost her sister to cancer. I'm not in the US so here we only have public hospice service, that I know of. And she is not sick enough to qualify there it seems. Inspired to look into private possibilites now, though. That sounds so wonderful what they did for your parents, I hope they offer similar things here. All the best to you and yours.

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