I honestly don't know what the hell I'm doing...

[cynatnite]

A few weeks ago my mom had some vertigo. We went to the doctor and they ordered tests. The next day, it got so bad that she was vomiting and I had to call an ambulance. To make a long story short she has been diagnosed with small cell lung cancer with metastasis to the brain.

She's been going to radiation therapy. This Friday she gets her port and Tuesday after her last day of radiation, she starts chemo.

The doctor told us a probability of 9-12 months is what my mom might have. He made a point of saying that patients have been known to live much longer. Either way, it's gotten me rather depressed and I can't say what my mother is feeling. She's not ready to have that conversation yet...at least not with me.

I want to start her on a better diet before and during chemo. They've warned about blood count problems that could arise. I'm trying to find good recipes that hopefully are easy on her GI tract and that she will like, but I honestly don't know what to look for.

So many decisions have to get made and I don't feel ready for them at all. The house, the car, dealing with family...my sister especially. Mom has always been a pennypincher, the cheaper the better and she talked about cremation. My sister is as hardcore Christian as it gets and cremation is offensive to her for purely religious reasons. I'm an atheist. She's already trying to make those plans behind my back. She's in Oklahoma and I'm in TN with my mom. I'm the only family here for Mom, plus my kids. They all have jobs, their own kids and lives to deal with.

Mother's Day is coming. My husband (truck driver) was talking about taking time off for that week and I absolutely shut him down. I can't handle thinking about that either.

I want to do everything I can for my mother and I feel fucking helpless as it is. I'm trying to contend with all of this and I don't fucking know how to do it. I feel like everything is piling on and it's hard. I have to be strong and keep it together for my mom.

I just don't know what I'm doing and I'm scared I'm going to fuck it all up. I feel very isolated and it's hard to talk about this with anyone. I'm afraid I would totally lose it and I don't want that or anyone around for that. Any advice would mean a lot. Thanks.

[voteearlyvoteoften]

1. Trust your instincts

Love your Mom and don’t worry about burial at this time.

[Turbineguy]

2. Nobody knows what the hell they are doing.

And the learning curve is straight up.

I went through this 5 years ago. We got my Mother in Hospice care. These people can really help you. You are doing this once and for the first time, they have experience.

It sounds to me like you know a lot about what needs to be done. If you are the one on the scene and have to make the decisions, then nobody else can complain later (well they can, but you don't have to feel bad about it).

BTW I organized and prepaid for the cremation, saving 400 bucks. I never told my Mother, but she would have appreciated the savings!

[blueinredohio]

7. I agree with hospice, my mother passed in December and was first in palliative care

then when she got worse it was hospice. Not only will they help you with bathing, housework etc. They have counselors to talk to and can refer you to services you never even considered. It's so overwhelming you can't do it alone. I would advise calling and at least talking to them. I know what you are going through and I wish you the best of luck.

[Turbineguy]

14. During the last couple of days I was able call them

at all hours for advice and "a hug and a kind word".

[Rorey]

3. How could anyone expect you to know what you're doing?

It sounds like this is very new to you, and it's understandable that you'd be in a panic.

Maybe your mother's oncologist will have some ideas of where you can get support, and also some direction for what to do and when. I would say that if your mother is still of sound mind, she should get to make the decisions.

My parents both had cancer and died eight months apart. We were given a thing called "Five Wishes" which is an advance directive that your mother can fill out to make sure that HER wishes are honored. You can check out this site for Advance Directive options for your state: https://www.tn.gov/health/health-program-areas/health-professional-boards/hcf-board/hcf-board/advance-directives.html

[Siwsan]

4. First, my heart goes out to you.

I've been in a similar situation with both of my parents. My Dad was misdiagnosed with MS when he actually had a brain tumor. We had steeled ourselves for dealing with MS, but at least it wasn't something worse. Until it was. Mom died of Alzheimer's.

My best advice is going to sound overly practical, but here it is. Make sure all of your mother's legal/financial ducks are in a row - beneficiaries on everything. I can't stress strongly enough how important it is to have a durable power of attorney, advanced medical directive and medical advocate paperwork, all in order. Your Mom's decision on what she wants done with her remains are the most important and should be honored. If necessary, see if your Mom will convey, to your sister, what she wants. Getting arrangements all set and paid for, in advance, is a blessing when the time comes.

Check around for some support groups in your area. And, of course, you know that all of us on DU will be here for you, when ever you need us. If there are social workers available, talk to them. And, when the time comes, I cannot recommend Hospice highly enough. We used Hospice for Dad, Mom, my sister and my Aunt.

And spend time just talking to your Mom. Ask her questions about her youth. Keep her engaged. Both of my parents were 'disconnected' for the last months of their lives - Dad in a coma and Mom with her Alzheimer's. That didn't stop us from talking to and with them. With Mom, we spent a lot of time looking at old photographs. Even when she was lost in her own mind, there was some level of connection.

And play music. What ever kind she likes. The soothing powers of music should never be underestimated.

So take a deep breath. Make a list of things you think need to be taken care of and keep it handy so you can check things off. And never be afraid to reach out for advice.

[samnsara]

24. great advice! Long Term memory goes last but im not sure how that works..

..with Alzheimer's..Get all that oral history down on tape. My MIL died of natural causes at 104 but wow do we have some great taped stories. This is what keeps their memory alive forever and what a legacy!

[Phoenix61]

5. I'm so sorry

That is a lot to deal with. A nutritionist can help with diet and where your mom is having chemo should be able to recommend one. Hospice can be really helpful. They can provide services for a lot longer than people realize, including a social worker. It's nice to talk to someone you don't have to worry about dumping on. That's what they are there for. They also have a nurse on call 24/7. I called them in when my mom's Alzheimer's got really bad. It was nice knowing there was support a phone call away. I don't think anyone knows what they are doing in your situation. I know I didn't when I became my Mom's caregiver when my dad passed. It's putting one foot in front of the other and tackling one thing at a time. Try and take care of yourself. Lean on the people who love you.

[sinkingfeeling]

6. First, I suggest you find a local cancer support group. They can assist you in whatever way you need

Go to a library. They should have numerous cancer cookbooks. One that I have has different recipes for foods to relieve different side affects.
Make sure your mother has a will in place and let her write out the instructions for her death. If she wants cremation, your sister would have to fight your mom's written instructions.
Keep posting here. A lot of us are cancer survivors.

[enough]

9. You have perfectly described what its like to be a caregiver for a seriously ill parent.

We don’t know what the hell we’re doing. And we don’t know what will happen, how long it will take, or how much suffering will be involved.

You are expressing your love for you mother by being with her on this unknown path. You will not fuck up because being on this path with her is what is needed.

[cynatnite]

10. Thank you all!

You're advice has made a huge difference. I feel like I'm thinking a little more clearly. So much of this, I don't feel like I can talk about it face-to-face with family right now. I'm just trying to get my head together.

Anyway, we do have an appointment on the first at the cancer clinic regarding directives. I suggested that and Mom agreed. Does anyone know how far that goes? Does it include power of attorney, living will and all that? I googled the forms, but that's overwhelming, too.

I'm going to hit the bookstore tomorrow for some ideas. What I've googled has been pretty confusing. The ketogenic diet sounded interesting, but mom's already a thin person and weight loss isn't what she needs. I'm looking at high protein things like Ensure and iron rich foods to begin with. I know what she likes that could help sooth her stomach.

I think what I will do is make a phone call to hospice next week. I know we're not ready for that just yet, but I feel it's a place to start. The one thing mom is sure about is that she does not want to die at home. She made that very clear not long ago. I still want to talk to them anyway. I'm not telling a soul about that.

This is the thing with my sister. She came for a short visit not long after we got the diagnosis. While she was here, behind my back, she went to see a funeral home and had an estimate for a basic everything. She wants to have Mom in a casket and buried in Oklahoma next to our Dad. The estimate is only $3000. My Dad passed away 20 years ago and his funeral was over $8000. How in the hell is that even possible? It blew me away when I looked at it today. She set the paper on my dresser where it remained untouched until today. That's how hard this whole thing is. I just can't even deal with that right now. Either way, I see a fight coming no matter what Mom wants and I don't have the stomach for it.

Anyway, thanks again for the support. It means the world. I want you all to know I will be coming back here a lot for advice, ranting or whatever. I flipped off a couple of ladies in the grocery store parking lot today for not moving from a handicapped parking spot that my mom needed. They were standing around chatting and refused to move after I asked very nicely. Yeah, that's the day I had today.

[Rorey]

12. I believe that Advance Directives are legally binding

Your sister can plan all she wants, but if your mother specifies otherwise in the Advance Directive, your sister's plans won't be considered.

[Rorey]

13. Your sister may not mean harm

Maybe she feels like she's doing "something". It might help with her own feeling of helplessness to do this planning thing. But you don't have to follow through on her planning.

[RandomAccess]

18. Your state probably has rules about Advance Directives

in my state -- it covers only medical stuff, NOT anything to do with Power of Attorney, etc. So you'll have to get those separately, and please do. It's my understanding that Living Will is basically now called Advance Directives.

If she doesn't have a will, may need to do that. Unless she has complicated financial issues, you might be able to get a decent will online.

As someone already suggested, let your mother decide how she wants her remains to be attended to -- THAT was also in my state's Advance Directive, btw, altho it woudn't have mattered since the funeral home didn't ask for that so I could've overridden it had I wanted to. Maybe your sister could arrange for her own memorial, if that would help her feel better.

[Rorey]

11. As far as diet goes....

When my dad was undergoing chemo and radiation, it was very difficult to find things that he wanted to eat. Everything that he used to like tasted different. It's difficult to keep from getting discouraged when you try so hard to provide nutritious things for your loved one to eat to help them get through their treatments. It got to a point where I made sure he got whatever he felt like having, and if he took two bites and didn't like it any more, that was fine too. We wasted a lot of food, but that was okay.

[procon]

15. My dad had lung cancer.

There are four of us siblings and we wanted to help our dad, to save him, to do anything... something. We got him through all the medical treatments, but the end was inevitable. Everyone had ideas that ranged from the desperate to the impossible, and dad resisted everything. It took us awhile to see that the problem wasn't him, but us. All our earnest efforts to help were driving him away and making him angry. He wasn't a child, and he did not want to be treated like invalid, but that's how our intervention made him feel. That was a harsh lesson to learn and we felt useless, but that was what our dad wanted.

Dad had a basic will, but like your mom, he hadn't made any end of life decisions and didn't want to talk about those issues. It would end up being our decision in the end, anyway, and we chose my brother who was closest to dad, to be the final arbiter if there was any disagreement, an arrangement that worked very well for us.

Dad didn't want our interference and our concerns only made him more upset. He was determined to do things his ways and he was content with his regular daily routine. We came to the realization that dad just wanted us to do the things he couldn't, so we did the little support services he allowed. We took turns doing a little house cleaning and his laundry. We cooked all the very unhealthy, but delicious meals he liked, delivered all plated and ready to heat up and he enjoyed all that. We kept him supplied with his favorite snacks because that's what he wanted, and all those little comforts made him happy.

We were heartbroken that he didn't want us to help him, and didn't want to discuss the things we felt were important. It was very hard onus kids, but we had to remember that it wasn't about us. Our dad was always a private man, the strong, silent type, and very independent, and he remained in charge the rest of his days.

I don't know if my experience is useful, but when it was all said and done, I know we did the right thing in letting our dad be his irascible, curmudgeonly old self. It's hard for any caregiver to get through the death of a loved one, so remember to take care of yourself. Let your own family in, they need you, and like yourself, they want to help and don't know how.

Peace to you and yours.

[RandomAccess]

19. what a great account

Everyone could probably benefit from hearing that. Thanks.

[Yonnie3]

16. Lots of good advice above.

Here are some thoughts about my experience. I didn't know what I was doing,

I helped my father through his chemo. I discovered that for food it is important to go with the flow. What tastes good one day may seem nasty the next day. For my father, I tried to plan good nutrition and at first I wrongly pushed my plan on him. He lost a lot of weight and I realized calories in any form were "good" nutrition. I kept a variety of things on hand to prepare small meals and never pushed him to eat anything. We found flavors of Ensure that were palatable and always kept them on hand. The meat and potatoes guy developed a liking for flavored yogurt cups and fruit salads too. We began to look at it as an adventure in discovering what was palatable. On his better days we would go to the store and wander the aisles looking for possibilities.

We made sure his papers (a Will and a letter regarding his cremation and disposition of his ashes) and power of attorney (limited to one person) were in order and then we talked no more of the details. Time was too short to waste on that. Decisions about his material possessions were deferred. My siblings and I assured him not to worry about any of it, that we would take care of it all per his wishes.

I found that there were just too many variables to make a solid plan. I wanted to have everything in place, but it was not possible. My father lived much, much longer than they predicted. In hindsight I see that we became equal partners in this and I certainly wasn't in charge.

I find it difficult to think of and write of those times. It was tough, but we did OK.

[Farmer-Rick]

17. When my uncle went into a coma for 4 weeks, I learned a few things

1. Accept all the help you can get. Hospital visits, taking care of pets, organzing and paying bills, laundry and getting food. It all becomes difficult and you need help. Accept it.

2. Have someone you trust to talk to. Again you can't take on someone else's life tasks without help yourself. I had my better half, use the support of your family. Talking about decisions before you make them helps clarify situations and information.

3. Take care of yourself too. You can't help others if you are sick too.

4. Understand that sick people can be difficult. They are in pain and have little patience. But it doesn't mean you have to take abuse. If they get mean and rude, sometimes just leaving and going to another room helps but sometimes you just have to tell them to treat you with the respect you deserve. Don't feel bad about it. It just a part of life.

5. Don't second guess yourself. Decisions will come at you that you've never experienced before. You'll be in situations that you've never had to deal with before. If you get through them then you've done good. Sometimes there is no right way, there are just more uncomfortable ways.

6. Let yourself and others feel sad. You don't always have to be the one who brings the cheer and cake. And you shouldn't demand everyone look happy all the time. It will be tough, but you will make it through.

7. Friends and relatives will be the same after this. The obnoxious Aunt will still be obnoxious. The kind and caring person will still be kind and caring. This experience maybe life changing for you. But others will float through it without any notion about the importance of it.

So, that's the things I wish I knew before my uncle went into a coma, came out, had open heart surgery then lost his kidney functions. A year of hell for him but he survived.

[alfredo]

20. You are stronger than you think.

[JayhawkSD]

21. Make sure you mother knows you love her and will care for her.

Anything you do pursuant to that end will be the "right thing." Everything else doesn't matter.

[Jim Lane]

22. My experience with food when on chemo

My experience is probably different because I had no vomiting problem UNTIL the chemo began, so I didn't have to worry as much about kindness to the GI tract.

For me, one noticeable effect of chemo was that many things lost much or all of their taste. My normal preference is for pretty bland food. I'm not the type to order a vindaloo or one of the dishes that has a bright red mark on the menu as a warning. What I found during chemo, though, was that it worked better for me to seek out stronger flavors, because my normal fare was a lot less interesting.

So, while it makes sense that you want to find foods that won't further upset her digestion, you might also need to find foods with stronger tastes -- and, of course, these goals may be in conflict.

Best of luck to you and your mother!

[samnsara]

23. (((hugs)))