I'm so sorry you're going through this, it's tough. I'll mostly echo what others have said. My FIL was diagnosed with a metastatic brain tumor (from melanoma) a couple of years ago. He was turned away from 2 doctors (told to go home, enjoy the last weeks of his life) before we found a dream team of doctors who operated (a few times), treated him (chemo/radiation) and gave him quality of life for 17 months past the original diagnosis. It was an awful period. I would say that the best thing I "did" was to tell my DH to go to him and do whatever he needed to do, whenever he wanted (help sort things out financially/estate-wise, just visit, take his dad to appointments, help manage his care, etc.). During that time we had our first DS and the best thing we did was to just spend time with him (and MIL). My IL's live 15 minutes away, so DH was able to see his dad 2-4 times a week (usually without me since I worked and then had a baby to care for) and I just picked up the slack. We also listened to MIL a lot (who didn't want to cry in front of FIL) and let her know what a great care taker she was (a lot). Hugs to you.
Similarly to diam, my MIL was diagnosed with advanced cancer. We had one very young son at the time and I was expecting our second. DH and his family rotated nights caring for MIL and bringing meals. I cooked meals often for him to bring over, just emotionally supported him and let him know he should spend as much time with her as he could. I was the primary caregiver for DS during that month. Since DH is one of five siblings (and MIL had siblings as well involved in her care), I stayed out of the decision making and discussions (and I got the feeling they only wanted it to be the "inner circle").
I'm so sorry to hear about this and I will pray for your family and MIL.
As I read other responses, I also wanted to say, it was super important to me when my Dad died that my DH never once gave me any grief about being away from home.
As I mentioned, my Dad had been in a coma for a year. He was in my home country of Argentina, and we live in Boston. Back home, we do funerals the next day after someone passes, so when we got the call from my step-mother that he was gone, my sister and I had to drop everything and fly out that same day. There were no flights leaving from Boston available, so my DH and my BIL drove us 4 hours down to New York. My sister and I paid our exorbitant same-day airfare and got on a plane. My husband took care of the kids, the house, and the dog for the 6 weeks I was gone.
I will always be grateful for him for allowing me the freedom to travel and do what I needed to do without worrying about him or the kids. He assumed all of my responsibilities at home so I could deal with this as I needed to.
So be patient with your husband. Step up to do more so you can free him up to spend time with his mom. It will be hard for you, you'll miss him, you'll have a lot of work, but he will appreciate it and will remember it forever if you cut him all the slack he needs so he can be with his Mom.
Again, hugs and good thoughts to you all.
"...human beings are not born once and for all on the day their mothers give birth to them, but life obliges them over and over again to give birth to themselves."
Photobug, I am so sorry for what you're going through. And I appreciate you sharing your side of it. I often feel that way about my MIL too. When I am with her, I try to let her guide the conversation to a certain extent. If she wants to talk about her situation, I'm all ears. And if she wants to be distracted, I do my best. I can't imagine how it feels but I try. One of the things that MIL has been focusing on lately is her regrets in life. She was not the best mother (she did her best most of the time with her situation and her own upbringing) and she's been feeling very guilty about it. And she's been thinking about all that she still wants to do. I've been trying to encourage DH to tell her to make lists--ranging from small things, like re-doing a portion of her yard (she loves gardening) to going someplace (like the beach with the grandkids or somewhere she's always wanted to go), etc. So that way she's focusing on something and on some non-medical goals. Is that crazy? Again, I am sorry and you're in my thoughts as well.
I appreciate all of your advice. I'm sorry that all of you had to go through heartache like this in some form or the other. But you've given some really good tips--some already I've been trying to do and others which are good, new things. My DH and I run a business together with a partner (whose been very understanding and supportive) so we are very lucky in the fact that DH can take the time to go down there and take her to appointments, etc. And he calls her every day. I try to do everything I can to pick up any slack he leaves but I need to be reminded sometime of the importance of that so thank you, skyblu.
Do any of you have any experience with any really good cancer resources? Part of my "job" is to help with research so if you guys have any sources that were particularly good for you..? Like Daisy, how were you able to find the dream team?
I did not read through all the responses but thin you have been given good advise. My DH's uncle passed away just months after his lung cancer diagnosis and we just tried to visit as much as we could and DH offered to take care of anything with his house that he needed done. My FIL recently passed away after an illness that we did not realize would take him quickly (at all). We did try to visit him often while he was in the hospital and my young children kept getting sick, so I would stay with them while DH would go visit FIL. I do wish that I had run out for a visit of my own while my kids were sick though, so don't hesitate to ask a sitter or someone to watch your little one so that you can visit.
ETA: If you are short of photos of her, maybe you can get some photos in? This was one thing that I was able to do with FIL before he passed -when we learned he had a tumor I picked up the pace with taking photos of him, and I am glad to have those for the little ones and was able to give copies to MIL and have them for his service.
Photobug
Do any of you have any experience with any really good cancer resources? Part of my "job" is to help with research so if you guys have any sources that were particularly good for you..? Like Daisy, how were you able to find the dream team?
Do you mean that the family has asked you to work on finding the best doctors/options for MIL? We had access to the very best doctors in the world for what FIL had here in our city, but FIL and SMIL were not wanting to travel outside of their state. Usually the "best" are in a very large city. We tried. I talked to the local hospital and they told me and DH what we had to do to get his case reviewed by the doctors here. I'm not sure where you are or if your family are willing to travel, but usually a quick internet search will show you who is "the best" for a specific type of cancer, and they are used to taking calls from around the country and reviewing cases, but usually it will require the patient then traveling to that city.
Millie03 - We found our "dream team" through a few different routes: internet research / message boards (this was big for treatment options/drugs/overall knowledge), a lot of phones calls and meetings and honestly, OSIL, who, at the time, worked at a very large medical device company and had access/information on who/what/where (and got us a direct call with the head of neurology at a major center, who operated the next day). We also live in a large city with more than one cancer center and a large research hospital (so that helped). DH did a TON of research and networking to figure out what FIL needed in terms of options/treatments/drugs. I almost hate to say it, but I believe that FIL lasted so long because DH/Family managed his care so well and was his advocate (this is so huge) and because of who OSIL knew and had access to. Managing/advocating is like a second job and everything moves so fast because time is of the essence with treatment. I'll also mention that MIL was an amazing caretaker and did a great job providing the best nutrition to him while being treated.
FWIW - we were told to go home by the first hospital (a smaller, surburban hospital outside the major city we live) and the second, a big doc at a MAJOR, well-known cancer research center in town (who I would never, ever go to or let anyone I know go to). You really need to keep trying and keep getting second opinions and interview doctors before settling on a team / course of treatment. It's tough to keep going when everyone is telling you to go home and find a hospice.
FIL had several brain tumors caused by melanoma (7 years prior) - one was large and surrounded by fluid, the others were small and all were near the surface. Up until the end, there was no other tumors in his body. Also, the only travel they did with FIL was to a nearby large city (3 hr drive) that had a trial drug that DH was trying to get FIL on - FIL didn't make it long enough to get on it, but the melonoma drug has since been approved, the first new drug in about 25 years.
In 2010, both of my parents were diagnosed with terminal cancer within a month of each other (mother - pancreatic; father - lung). My mother died very quickly, within a month of her diagnosis; my father came to live with me (because he was so far advanced it was not advised for him to live on his own). He lived 8 months with us before he died. While I did have siblings who provided some emotional and logistical support, all of them live 4 hours away (300 miles) so pretty much I (and my husband) were his sole caretakers. We had some nursing support in the last few weeks, but primarily, it was me. I cooked pretty much all his meals; I took him to every doctor's appointment.
So, having gone down this road, this is my advice:
Diagnosis: You need to nail that down, stat. No messing about. Get a referral, get a second opinion. Take the first available apppointments. Have all test and lab results sent to the second opinion doctor prior to the visit. It sounds like your MIL is very likely Stage IV, and I am sorry to say, may not have a lot of options. Realitically, you are looking at simply slowing the progression, rather than curing or eradicating the cancer. So every day's delay is critical.
Treatment: Are you in a major city? I lived in a major city so that is one factor in why it made sensce for my dad to come live with us for treatment. You have not mentioned if your MIL has a spouse or not. If your mother lives alone she may simply not be able to remain on her own during chemotherapy. My dad was simply not up to the day to day talks of managing a home at all - even getting groceries, fixing meals, etc. It was much easier for him to come stay with us so we could run the house. I went to every doctor appointment with him; took a notebook and made notes. That was very helpful because he would often get confused and forget things. This was a very, very competent man, who worked a very complex job until the day of his doagnosis. Illness does that. Your MIL will need someone - prereably the same person - to go to every appointment. Because if that doesn't happen, things will get missed, lost, or forgotten.
Hospice: Much has been said about hospice care and while I think much of it is very good, if your MIL lives alone, she very likely cannot have in-home hospice. Hospice does not run the home for the dying person. They provide much care and support, but they require a cognizant adult to run the home. That does not mean a cognizant adult has to be present 24/7, but they do have to be there quite a bit.
Figure out the money: Lots of things are covered by insurance. hospice is covered by insurance; most drug treatment plans are covered by insurance (but not all clinical trials are) but a lot of the supplemental nutrition that might be recommended by her doctors may not; nursing homes are not; in home nursing care (Certified Nursing Assistants) is not. Home health is, but that is just 30-45 min visits 2-3 times per week at most (and does not encompass feeding, bathing, grooming, etc). We were very fortunate that my parents had very good health insurance and my dad did have money for non-covered items, such as in -home nursing care. That said, NO ONE will provide the attention to detail and the care like you will for your own family. I was fortunate that at the time his happened I was self employed, and so could pull back from work as needed. That said, there were months I earned very little money while the expenses of my household were quadrupling because of dad's special needs. Just be aware.
Get the paperwork done: My mother and father were terrible procrastinators when it came to their will, their advanced directives, and their wishes for their funerals, etc. My mother died without a will, and so we were left trying to figure out what she wanted. Some things were clear cut legally but other things were not, especially with her possessions. She had promised the same things to multiple people. I don't think everything worked out exactly as she would have wanted it and there was/is some hurt feelings (though nothing terrible). We did get my dad to make his arrangements, so that was easier.
Know your limits: financially, emotionally, physically. One might expect that I would have received a larger share from my father because I cared so much for him (and his care cost my household money) but he did not provide for that and none of my siblings offered. I am not terribly hurt by this because I did not really expect to be reimbursed or "made whole" by them and I did what I did for my father because I thought it was the right thing to do. Just be aware because I do know others in similar situations who become very hurt or bitter when they "do more" but don't "get more." Know what you and your spouse can do. I was never alone in my house for the 8 months my dad was there, and it was like caring for a child in many ways. This did put a strain on my husband and I, but he had lost both of his parents at that point so he was extremely accomodating. That said, there were some ramifications for our marriage and it has taken us a year to work through them, and we still are. You and your spouse should talk a LOT and have very candid conversations about the amount of time and level of commitment with which both of you feel comfortable.
And after all of that, this last one might seem contradictory, but Don't Live Cancer Every Day: With my dad, we talked about his disease just prior to his appointments (when determining points to be addressed), at the doctor appointments, and on the way home if necessary. We also addressed medical issues as they came up (and they will). Other than that, especially in the early months, while we had to use the word "terminal" some times, we tried to live normally. we talked about politics and history and anything we could so we did not have top talk about cancer. We went to performances (my dad loved the theatre) and after he beame too weak, I would watch Masterpiece Theatre with him at the house. My dad wanted to have days without pity, without having to be different. becasue yes, everything was different and of that he was very aware simply by living in my house, but some days he just wanted to feel like himself, not DYING CANCER PATIENT. I think I gave him that - and more - and I think that is about the best thing you can do for a person in this circumstance.
Sorry this is far, far too long. I hesitated to even post because I knew if I did, it woudl come out all rambling and maybe too much. But there you have it, my advice on what to do.
Reading along. I'm in a similar situation. MY father probably has cancer. There are spots on his lungs, lymph nodes, liver & kidney (think this one is a cyst though). They have done all kinds of scans, but cannot give a firm diagnosis b/c he is a heavy smoker and there is too much tar to see clearly. They cannot biopsy b/c he has severe COPD and the risks from that are too high. My dad has seen an oncologist (referred by my sister's BF who had lymphoma at one time), urologist and he is seeing a lung dr on Tue. I am a total daddy's girl, but I seem to be the only one who is NOT in denial. My dad has dementia, so this adds to things as well.
Like MCG- I am taking pictures of my father with my children. I highly recommend doing the same.
I wrote my dad a letter telling him how much I love him, why I love him, appreciate him, etc...
I can tell sometimes that he doesn't recognize me due to the dementia, but it still matters to me that he knows how much I love him.
I see him 3x/wk usually and I tell him every time that I love him and I give him a hug.
These things are making me at peace.
I am fortunate to have 3 siblings and I am the baby. My brothers have pretty much taken over the POA and other legal stuff. My sister seems to be the more emotional support for my mother. We are very worried about her too obviously. She has her church friends and we're trying to encourage her to social out. My oldest brother* engages my dad in daily living; otherwise, my dad would just lay on the couch all day and give up.
*He and his wife live with my parents now due to their own financial difficulties, so cooking and cleaning are well taken care of.
DH lost his step-bro to liver cancer at age 31 and hospice was fantastic. He lived with MIL and on pudding til the end. They knew it was time and called the appropriate people, like others have mentioned. DH's aunt was in inpatient hospice and had a great experience as well.
DH fully expects me to be a basket case and I know he will want to fix things when all I want to do is cry it out. Telling me the whole "life goes on blah blah blah" is insensitive IMO. I know he will not mean to be insensitive, but I won't need practical advise, I'll just need to cry.
I hope any of this helps some. DH's family is very stoic. His father passed away right before Christmas and DH has never expressed any emotion over it. Nothing changed. I just let it go as his way of coping, but told him to let me know if he needed anything at all. I know my DH's personality and not to press.
*Most suspect he had cancer but didn't tell anyone
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Originally Posted by Millie03
