Any words of wisdom???

[onlychild*]

Hello,

Need some advice/words of wisdom.

My mom is only just 62 and only a week ago, or maybe 2 weeks now, did she finally go to a doctor after all my months of pleading (she is very stubborn, independent and hasn't seen a doctor for 10+ yrs). The doctor told her and I that she most likely has lung cancer due to a large tumor taking up 50% of her lung. The doctor right away referred us to Home Hospice Care as my mom didn't want any further tests and has no insurance. It has been very unnerving and scary. Am not even sure yet what hospice is supposed to do. I began leave from work over a month ago when she started to not be able to get around to help her with toileting, feeding, drinking, household jobs, etc. The hospice nurse has been over twice for about 15mins and keeps encouraging my mom to take morphine, but my mom is lucky right now as she is not in pain. Is this normal to be encouraged to take morphine when not experiencing pain? Does anyone have preferences to Home Hospice Care over Hospice Care at a Hospital, etc?

Also, any recommendations on foods, nutrients or medicines to help my mom gain weight back and some strength, she hates being weak and it is very scary to see her so thin from cachexia (right now I hide Flaxseed Oil in the 1/2 of a small McD hamburger she craves a day and Vit C in some juice she sips on - she detests Boost and Ensure and detected it right away in her Frappacino).

Any advice for my Mom and I? Many many thanks as I feel quite lost and overwhelmed with all of this being so new and my mom and I not having any other family. She's all that I have. Thank you.

[RandyW]

If you get a chance do a search for hospice. Click on the search button and type in Hospice for Keyword. We do have a lot in the data bank about this. I personally never useed hospice so I can not offer advice on their services. I can say that let mom eat what she wants, when she wants. Try some home made milkshakes possibly. I think that with the morphine, they are offering it and not realizing mom is not in pain. This is the best I cna offer, and you will get more throughout the day. saying a prayer for you and Mom.

[Nova]

I'm sorry that you and your Mom are going thru this.

My first thought was,did the doctor say "for sure" that she had lung cancer??? Did he give any thoughts to which type he thought it was?

I know they're pretty good at guessing, by looking at the scans, but there are a few different types of lung cancer, and hers could possibly be treated...??? Maybe you could talk her into getting a second opinion??

I haven't had to deal with Hospice, other then when my step-dad received their services. I didn't care for it, but some people have had very good experiences with them..... Guess it just depends.

Take care of yourself. I'm adding you guys to my prayer list.

Nova

[Ry]

Try her with Carnation Instant Breakfast, it tastes good, you can make it with whole milk and it has the same nutrients as Ensure. There is also a powder you can get at the health food store that is called Weight Gainer that you can mix in anything for calories. As to hospice, most people prefer to be in their own home where they are comfortable. Some areas have residential hospices that are set up for family to stay and are quite nice. Hospice units in a hospital are not always the most comfortable places. As to the morphine...not sure.

I would also apply for Social Security disability and ask about getting her on Medicaid. You might also want to call the Lance Armstrong Foundation about help with what she is eligible for- someone else posted that they recently did that and LAF was a big help.

[Connie B]

Do they know for SURE your mom has Lung Cancer? Has her cancer spread anywhere else in her body? Did they do any tests to determine she has lung cancer?

If her cancer has NOT spread, she could very well have surgery and maybe have that lung or part of her lung removed and live a very normal life. I am a one lunger and have been for 12 years.

Just because she doesn't have ins., doesn't mean she can't be treated. You need to contact a Hospital Social Worker and they can guide you through all the ups and downs of not having insurance.

Your mom is still very young, and she may very well have a GOOD CHANCE of beating this. Lung Cancer is NOT the death sentence it USE TO BE!

Dr. Dudeck at the U of M is a WONDERFUL Lung Cancer Doctor. Please don't give up because of what ONE doctor THINKS might be lung cancer. That's not how things are done in the lung cancer world. We don't go with "It's MOST LIKELY" She deserves answers and so do you.

I have a Lung Cancer Support Group at Regions Hospital. The group is for patients and caregivers. We meet on the First Tuesday of the month from 1:00p.m. to 2:30 p.m. in the Minnesota Room. (free parking and drinks and cookies)

We also meet on the THIRD Tuesday of the month from 6:00 p.m. to 7:30 p.m. in the Cancer Center.

We have a wonderful Social Worker named Scott Cruse that always attends and also runs our group. We can offer you some good information and support for both you and your mom.

Please talk to your mom and PLEASE TELL HER she STILL might be able to beat and fight this.

Best wishes to you both.

[Laura Ann]

Here is a good place to start:

www.hospicepatients.org

Hope this helps.

Laura

[onlychild*]

Thank you all so much for your advice and kind words! I can't express how much I appreciate it... it has been so scary and lonely the past few weeks.

I too don't feel comfortable with this diagnosis as it feels like a brush off. I have even tried talking with the doctor on the phone about having my mom's chest x-ray reviewed by a pulmonary specialist or someone else,and asked about pulmonary exercises and nutritional advice, but she says that further diagnostic tests would need to be run before a pulmonary specialist would even review my mom's case. And since my mom is declining to be admitted to hospital this cannot be done, thus she recommends hospice care. I am very upset about this as we were not even given options, nor did the doctor even attempt to encourage my mom to get another opinion or explain that many people with 1 tumor on the lung have lived healthy lives, etc. She didn't even explain that a CT scan can be done in a non-invasive way (no needles). She took one look at my mom and gave 15 mins of her time and that was that.

The MN Hennepin Cty Social Worker, the Hospice Social Worker and I tried to talk with mom about other options and that she should seek another opinion but my mom says the Urgent Care doctor was horrible and now this doctor gave her a "death sentence" and she doesn't have the energy or money to seek another opinion. Which it is horrific and very hard on her to get her from point A to B even with a wheelchair because she is so weak and her breathing so labored.

I will give her a few more days after she has eaten more and hopefully gained some more energy before I approach her on this subject again. I am hoping when she reads this message board that it will give her some hope or make her think more about it.

I will find the Carnation Breakfast and check another co-op on weight gain formulas and check out the hospice website. Maybe I will try to contact U of M or other places outside of this provider and see if they can recommend options.

Sorry so long winded, I just don't have anyone to talk to as this hospice doesn't provide family resources or counseling and I am trying to focus all my energy on keeping my mom comfortable - many many thanks again for your support.

[kamataca]

I am just so sorry that you are going through this right now. I lived in Mpls for 10 winters, and always thought of as a mecca for great health care. Unfortunately it doesn't sound like this is your Mom's experience.

Do NOT let them brush off your mother, or treat her like a statistic. This is your mother! I know how hard this is (I was primary care giver for my mom), and I know that your Mom has to want to move forward after being treated so horribly. Please read through some of the stories in the LC Survivors section, or the Good News forum. There is a lot that can be done for LC. There is hope.

Keep us updated. I'll be praying for you guys.

Kelly

[Lady Salt]

Hubby developed instant dislike for those meal replacement drinks such as ensure, boost, etc. He has not been able to tolerate them well.

But one thing he likes (600 calories per glass) is "Skandyshake". You can buy the pouches at the drugstore (usually hospital drugstores) or request your neighboring pharmacy they get it for you. It tastes just like an icecream or milkshake. You can add to it (or at least I do) powdered milk (more calories and more protein), icecream, fruits, anything you like and just blend them together.

I hope your mom likes them as well.

There is a recipe that I also prepare for hubby at least once a week and that he seems to enjoy very much. It has almost 800 calories per serving and it is very easy to make and even easier to eat. It is called "Baked chicken salad" and here is the site:

http://www.hdny.org/recipes.html

I hope it helps

[ErinC1973]

I'm so sorry this is happening to you and your mom. I am an only child, too, and my mom lived with us for three years before she died last year. We did not have hospice with her, but we did with my dad, who died of LC in 1999. My mom was wheelchair-bound, and my dad was at a hospice facility. I swear that the people who work there have got to be angels in disguise. My mom felt so guilty about having to put him in there, but they made it as easy as possible for her. They were extremely kind to all of us. That being said, I know that most people want to either keep their family member at home, or bring them to their home, since the general consensus is that they'd be more comfortable there.

But, all in all, your mom is YOUNG, and I am sorry that people have treated you like cr@p because of the insurance issue. It is overwhelming for both of you to care for your mom; my mom was handicapped and it still was heartbreaking for her to lose the independence she did have. It was hard for my husband and I, too; we had to learn all of her little quirks and requests. We all got on each others' nerves from time to time but I would have never traded caring for her in a million years.

I really have no advice on boosting her nutrition. Seems like you've gotten some good advice already, though. Carnation Instant Breakfast is good stuff--my kids like it! Other than that, you could try GNC. We had an especially hard time because my mom was not only taking chemo, so she needed her strength, but she was on dialysis, so she needed high protein, low sodium/potassium/phosphorus foods. Most foods she was instructed to eat that were good for chemo patients were NOT good for renal failure patients.

I think that you have definitely come to the right place, and what answers you CAN'T get from hospice or doctors, you can get here. We will do whatever we can to help!!!!

Thinking of you,

[Lady Salt]

I had forgotten another little trick: A product called "Polycose". It is a powder that has absolutely no taste, and you can add it to just about anything, from soups, to mashed potatoes,to juices, milk and even water. It adds 200 calories per spoonfull.

You can also get it at hospital drugstores (here they have both Polycose and Skandyshake readily available at the kids hospital) or have your pharmacy order it for you.

[onlychild*]

Wow! Thank you! Thank you! Thank you, all.

Is very nice to hear reassuring words and have the support. I just feel heartbroken that so many people are going through such difficult times - I wish there was something I could do to help. I hope I can be able to offer advice, resources, reassurance someday. Right now this is all so new.

I will certainly try Skandyshake and Polycose. I just won't tell mom and see if she detects it - was pretty funny the look she made when she took a sip of the Frappacino with Boost in it. Is good thing I bought two Fraps for just in case!. I think the hospice nurses think I am crazy asking them questions about breathing techniques and nutritional advice. They only recommend IV or feeding tube and morphine - but mom is still my mom (albeit very thin)and very concious and very hungry for Mc.D's, and ice cream etc... her stomach just fills up fast so we do little meals throughout the day. If my mom wasn't hungry or didn't complain about hating feeling so weak (she really has a desire to be able to walk around a bit again) I wouldn't be trying to find supplements.

Must run to pick up some McD's kids hamburgers for her. Many thanks again!

Best wishes,

k

[shineladysue]

I wish I had answers. My heart goes out to you and your mom. I just feel something is missing here. How do we know it is lung cancer your mom has ? I may be wrong in my suggestion , but I would possibly start by making a call to the American cancer society in your area and tell them your mom's financial situation, lack of insurance etc. I know that care is given to everyone regardless of their ability to pay, if you can only find the resources. No one is turned away.

Another suggestion for food is Lipton Sides. When my husbands appetite was down, I found he would eat the pasta and rice dishes . They are economical and easy to prepare. Most only take water or milk + margarine.

Please keep us informed as to how you and your mom are. God bless.

Sue

[Don M]

I think your mom should find a different doctor and get more answers and treatment if it is cancer. My brother had no insurance and Medicaid took care of him. He had lc.

Don M

[fillise]

I second the idea that you get a definitive diagnosis. There is help out there. Some folks have mentioned Medicaid. Livestrong.org also has a phone number you can call to get information on financial resources. Most pharmaceutical companies have foundations to help low income patients. Don't give up simply because of money.

Susan

[Steph74]

I understand what you are going through - I'm an only child as well and sole caregiver to my mom (she's been divorced for over 25 yrs) and I have no family here in Illinois, you are not alone. This is not a death sentance - Hang in there and I'm praying for you!

[dtay]

I agree with everyone here - get more info and a second opinion. Your mum is young and I think she should have the chance to be treated. Saying a prayer for you and your mum, I know how hard it is but you must stay positive (((Hugs)))

Dawn x

[Brandie721]

Hi there,

Absolutely push for answers. If I learned anything in this whole thing, it is that you have to advocate constantly to get good care.

In regards to eating, my mom like ensure and also ramen noodles (which have a ton of fat...I didn't know). The doctors said let her eat anything she feels like. She was also a fan of Egg McMuffins!

Regarding hospice, I just faced this decision last month. I had always said I would take care of Mom at home but when things went quickly down hill and I needed the support of the Visiting Nurses (who would also provide hospice care), it wasn't there. Many hospitals do keep a set number of hospice patients. My Mom was able to be kept inpatient based on the fact that her level of care was too much for me to handle. Her care was wonderful and I am glad I did it. I was able to still sleep there with her, so it didn't limit our time together.

Good luck with everything. Please let me know if there is anything else I can do. My Mom sounds so similar to yours. She had symptoms for years and between avoiding the doctor and seeing a bad one, it was all too late.

Brandie