Help me help you!

My MIL was diagnosed with rectal cancer about 5 years ago. While they were examining her they also found that she had breast cancer. HRPR+ HER2- (she suspected she had both for about a year and never told anyone) The breast cancer is totally unrelated to the rectal cancer. She had a surgery, radiation, and chemo for the rectal cancer, which she did really well with, and then they advised she start treating the breast cancer after a six month rest from the treatments she had just finished.
Fast forward to THREE YEARS LATER, Feb of 2010, she finally had a double mastectomy and chemo. Her breast was necrotic, and had been for quite some time. It smelled horrible and bled profusely at the slightest touch. All this while living with my husband and I, and our son, who was born in 2008. (She was taking my son's diapers and lining her bra with them to absorb the liquids.) This is a woman who never had a colonoscopy or mammogram prior to her diagnoses. Denial is not just a river in Egypt. Obviously, I am very frustrated as we are living with and trying to help a person who does very little to care for herself. She and I play a game of adding and removing me, my husband, and her daughter from her HIPAA forms, as I have told her that it is not fair or acceptable for her to live with us if she is not going to keep us apprised of her health, for the safety of my son. She recently (about 6 months ago) became very confused and we took her to the hospital. They believed she was having a stroke, and they admitted her to the neurology floor. It wasn't until I asked them to check her calcium, sodium, and potassium levels that they figured out that she had extensive bone mets and the calcium was leeching out into her blood stream. She is now on Zometa monthly, and her marker has gone from 23.9 to 13.1 (I'm back on the HIPAA...). Her blood pressure is more of a concern at this point than her cancer, as she is responding well to the Zometa. She has actually responded well to everything they have done. Each time some doc tells us to encourage her to get her affairs in order and look into hospice, she surprises everyone and beats each new obstacle. She eats like The Fly: a 12pk of Pepsi and as much sugar and junk food as possible each day; she seems to do everything you are not supposed to do and it still keeps working out for her. I suggested to my husband that she move in with us when she was first diagnosed so that he could spend whatever time she has, with him and our son. It was a very uncomfortable situation, and remains that way. So, it looks like with all of the wonderful advances with treatments and medications, that this is really being treated as more of a chronic condition. My question is: Has anyone been in this situation? Would it be wrong of me to suggest she get her own place and a car? (We are very tired of Driving Miss Daisy) If I sound bitter, I'm not. I am just very tired of the situation and we have a very small house. Did I mention she was a hoarder prior to moving in with us, and very rarely washes her hands after attending to her ostomy? It breaks my heart to see what so many people go through, doing everything right, and they still lose their loved one to this horrible disease. Life is definitely not fair! I am happy that she is doing so well cancer-wise, I just need for her to do it in her own place. Any suggestions or advice? Thanks for letting me vent! Sorry so long!

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Gray cat,
It is hard to be a care giver, especially with a person in denial... but you are doing a very good service.
I am sorry that you are struggling with your MIL.. but it is very unlikely that she will live much longer.
Only about 15% of us with Metastatic Breast Cancer will live for 5 years... some get really lucky and live for 10 or more... but not a lot. The doctors refer to it as a chronic condition, because it is easier to hear... but it is a terminal condition.
Zometa is not really a cancer treatment... it is a bone strengthening agent. It can indeed help to strengthen her decaying bones, but without an actual cancer fighting drug added to the mix, the cancer is likely to spread. In fact even with cancer fighting agents... it is likely to spread, just not as fast. She should be on an anti-hormone therapy drug.

Most of us on this site are fighting for every day, and primarily sharing the good reports with each other. And we are exceedingly grateful to our family and friends that help us. Unfortunately many with the disease are in denial, as it is hard to accept being terminal.
As the disease progresses we tend to need help and it is unlikely that your MIL could live independently for very long. Could her daughter help with her care, so that you share the burden. It is hard because you are asking for advice from those of us that often Are the Burden.
I am praying for you and your MIL.
You are doing a good thing and I hope that you are willing to continue.
Timarie

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Dear Graycat11,
"Fast forward to THREE YEARS LATER, Feb of 2010, she finally had a double mastectomy and chemo. Her breast was necrotic, and had been for quite some time. It smelled horrible and bled profusely at the slightest touch."
What oncologist was taking care of her between the time it was discovered and the rectal treatments. To me, it seems like medical malpractice. I can't imagine the psychological pain she must have been going through. Does she go to a cancer treatment/hospital? They have social workers there who deal with this stuff all the time.She needs someone she feels she can trust to talk to....it's not always easy between family members, as much as you are trying to...she seems to need something else.

I have told her that it is not fair or acceptable for her to live with us if she is not going to keep us apprised of her health, for the "safety of my son". She recently (about 6 months ago) became very confused and we took her to the hospital. They believed she was having a stroke, and they admitted her to the neurology floor. It wasn't until I asked them to check her calcium, sodium, and potassium levels that they figured out that she had extensive bone mets and the calcium was leeching out into her blood stream.
Again, it doesn't quite fit...is she going to a local hospital or did you take her to a regular ER when she became confused? Local hospitals are definitely not the place to have the trust to take care of metastatic breast cancer. You are very wise in having them check her calcium, sodium, and potassium levels. You shouldn't have to tell THEM what to do.
You seem like an exhausted DIL who is trying and at her wits ends.

Have you thought about finding a social worker at a Cancer Hospital and asking about assisted living where aides, and nurses, and PTs and social workers come every week to help her. I AM ALSO THAT BURDEN and I have it set up in my own home where I have and aide every day from 9-1, social worker once a week, nurse once a week, and PT once a week. That way my children, I do have a 16 year old who is at home but has a pretty normal life considering - but my daughters can then put in as much or as little time as they want to see me and then go home.

BELIEVE ME NO ONE WANTS TO BE A BURDEN. But we all will be at some point....hopefully your Mil can get the breast cancer care she really needs and can have an independent time as long as possible. I know it is so hard, but it really needs to be about her right now. I don't mean to be mean about that. But if the situation is stressing you out, then it's stressing her out and that's no way to lovingly transcend the next part of the journey. Think about what's good for your family and good for her so you can relieve this frustration. There are options....you just need to find the right case manager, social worker at a cancer hospital or call American Cancer Society for advice.

Also, since you are talking to the burdens ourselves, perhaps you should check out the "caregivers" part of Inspire. I'm sure they could be very helpful and that they are going through a lot of the same thing.
God bless your family and your MIL, I hope you can find the care that she needs.
Frenchy

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Thank you so very much for your response! I really do hate to sound that way, I guess we are just all very frustrated. It is very hard to live with someone who makes it so hard to help her. I have offered to be the one who could be the semi-objective listener at the doctor, take notes, go home and spend hours on Google, etc. to take the burden off of her and my husband. I can only imagine how hard it must be to keep track of and process everything you are told by your doctors. She continues to say that's what she wants, but she spends so much time in denial that it is hard to get her to discuss it at all.
I have tried backing off and letting her know that this is her life and she can do whatever she chooses with it and that we would support it, but that we still need to know at least a little bit about what is going on with her. We just want to know what to watch for. The last time we did that was when her calcium spiked. She put a tupperware container in the toaster oven and melted it. She insists that she wants to get her own apartment and vehicle, but I think after your e-mail that might be a very bad idea. If she doesn't have very much time left, then we can definitely make it work somehow! Even if we are all driving each other crazy, I still love her. (By the way, to answer your question, her daughter is in the same city and has never helped, and her husband passed away several years ago.)
It is so hard to get the docs or her to say anything that is similar to what you said. I know that no one really knows how much time ANYONE has. I'm not looking for that, but we definitely need a better idea of what we are facing.
You sound like a wonderful person, and I very much appreciate your advice. I will keep you in my prayers as well, Miss Timarie...

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Dear Frenchy,
Thank you for your thoughtful response as well. Please let me say that SHE is not the burden. I love her and I have always been willing to do whatever it takes to help make whatever time she has as happy and healthy as possible. We knew it was going to be very difficult when we decided to do it. The BURDEN is how she seems to do everything she can to BE difficult. She cancels appointments, won’t fill prescriptions, can’t remember anything the doc has told her, won’t write anything down, won’t bathe, lets her ostomy get infected, lies, --wait---I know that this can all be attributed to being very scared and possibly depressed. Often we can’t get her to tell us ANYTHING. It is like driving with no headlights. I have suggested anti-depressants or anti anxiety medication (I take them!) I have tried to be gentle, then assertive, I have tried asking about it frequently and reminding her we are here, I have tried leaving her alone and letting her bring it up. We have both tried everything we know to make it better for all of us and we ARE at our wits end. To answer your question about the three years, she just refused to go. She cancelled so many appointments I think they just gave up.
To answer your second question, when her calcium spiked we did take her to the emergency room. If we had known anything about what could possibly happen, we could maybe have identified the problem earlier. I was not allowed to speak to her doctors on the neurology floor, as she had removed us all from her HIPAA again. When we finally got one signed is when I asked them to check her calcium.
We are looking into getting some help, but she has made it so that none of us can even inquire about her. She has no power of attorney, she has no Bank, and she has her SS check deposited to her WalMart card. We can’t speak to Medicaid or Medicare (which she just qualified for last summer) on her behalf, often our hands are tied. We are left to just wonder what has been going on with her most of the time. I think that’s where most of my frustration comes from. She has a really great doctor, whom I spoke to just this morning for the first time in 6 months. (HIPAA) Until this morning, I didn’t even know what type of BC she had, and we have lived with her not knowing for 5+ years. Even with him though, she cancels appointments all the time, and I am pretty sure that the next time I call I will have been removed from the HIPAA again. She always tells us she doesn’t know anything about it.
One more thing, I thought this WAS the caregivers part of Inspire. That’s what it says at the top of my page…I am sorry if I have offended anyone, I am not a terrible ogre, I just want to help and I can’t! I am so sorry for everything that you are going through right now, and I really do try very hard to understand what it must be like. I’m sorry Frenchy. I’m sorry…

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To All,
I am not trying to be insensitive, I am telling the whole story honestly (I can obviously be a butt-head, too) because I value your advice and need your help. Also, pretty relieving to just get it out. I am sorry if this is not the correct forum. But THANK YOU from the bottom of my heart.

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Also, her breast tumor was 17cm when it was removed...

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Graycat,
It sounds like a senior center or extended care facility may be an option. Is definitely talk with a social worker about all of these concerns. I understand wanting to 'help',...............but, she doesn't seem to be helping herself. Do you think that she is having some 'dementia' problems? She might need an appointed 'caregivers'..............at the very least, someone to make decisions, when she is no longer able to.
Be regards.

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Thank you Warrior, that is good advice. Stay strong!

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Yes, Speak with a social worker maybe she needs 24 hour care they will will put her in a nursing home. I'm just curious how is she related to you?

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I share the dementia theory. You might see if you can talk to her Dr privately (if she hasn't taken you off again) and explain the confusion, memory lapses, and the difficulties in caring for her.

Once her Dr knows more about this side (and with all the canceled appts), maybe he can guide you in being appointed to handle her affairs.

Dealing with someone who no longer is able to think clearly, but doesn't recognize it is very stressful. My dad had Altzheimers.

Bless you for taking care of her.

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Msdebym, she is my MIL. Kauaigal, thank you for your encouragement! You have all offered some really great suggestions that we need to try. I appreciate it so very much! Hugs to all of you fighting this battle!

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You are a wonderful DIL, however you need to take care of yourself! There is a theory I subscribe to that breast cancer if not caused by at least is hastened from stress, you need to get some of this stress out of your life. I second having her moved ASAP to an assisted living situation if at all possible. You may even need to go to the courts to get the power to make decisions for her care, her doctor may be able to tell you how to go about that or maybe even an attorney. Best of luck to you, glad you were able to vent as that is a help in relieving stress. I for one understand your frustration, again you must take care of yourself!
Nancy

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Nancy,I am definitely going to look further into that. Thank you as we'll for your encouragement! We have definitely broached the subject before, but most of the doctors we have spoken to think she is completely lucid and capable of making all of her own decisions. Often, they have gone behind me and told her that I asked, which does not go over very well. She thinks she is perfectly capable and of sound mind. If I were to tell you all of the crazy things she has done over the past five years, I would be here for a while. Some of the incidents are tragic and comical at the same time. Example: right before the hypocalcemia incident, she was at home with our son. She had been doing well medically for about a year. It was Summer and we had one of those inflatable ring pools. I came home to find her in the pool with him . My exact instructions were that he was never allowed inside the fence or in the pool without an adult. She had wrapped Saran Wrap completely around her torso, thinking that would be sufficient to protect the water from her colostomy bag. When she went to get out, she slipped and fell and broke her shoulder. She has not been left alone with him since. She has always been a little different, but we never worried that she could be alone with him for short periods of time. I mean seriously, I can't imagine that there is someone I here who waited three years after their diagnosis to seek treatment for breast cancer. Clearly, that is just plain weird in my opinion. I can understand not wanting to continue treatment at a certain point, but she was only 59 at the time of her DXs, and the docs were very sure they could do many things that would help her and prolong her life considerably. She practically sailed through her rectal cancer treatment and surgery (her words). She responded well to the chemo, had very few side effects, and recovered quickly from her surgery. The doctors were amazed. She didn't have terribly adverse reactions to the meds (according to her), and he first thing they tried was immediately very effective. Why then, go through that--even though she did so well it could not have been a walk in the park--and then do nothing for three years with your breasts dying I your body and do absolutely nothing. No one could understand it, and she never really gave a reason for it when asked. Now remember, I had just had a baby. Would you not want to fight for the sake of your only grandchild, if no other reason?

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It doesn't stop there. Her daughter, in the same city, is a licensed substance abuse counselor with a masters degree. She lives with her court-ordered patient, who has significant issues. She has been with him since before I met my husband. She was arrested twice in the same weekend for stealing DVDs to support his habit. She lost her job, but not her license. She didn't work for a year, and my MIL gave her a large portion of her SS check (still does) whenever she asks. She is not allowed at my house or around my son, and she has never contributed in any way to taking care of her mother. I often joke that I need to just call Jerry Springer. Sometimes if you don't laugh, you cry. Maybe I should just write a book...thanks for listening <3

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graycat,
you have had some really good advice, as I know you realise.

However you need to remember that your family and yourself have needs too,

I worked for over 20 years in caring. To often I have seen people come into care, because the carer had passed away or became so ill they need care.

If you cant bare to let your mother-in law move out your home - can you not get carers respite. Your mother in law would go into care for a few days - to a fortnight on a regular bases.

This would give you and your family time to be together and relax knowing the she was being well looked after.

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Thank you Happy, we definitely need to figure something out very quickly while I can still put sentences together...

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Start documenting (dates, times, exactly what she did or how she reacted.. details details details) all her "behavior" .... at least then you'll have written information that could further your case when the need arises.

The problem with many dementia folks is because the dr's only see them at times, of course, they can seem "of sound mind".

It's all very challenging. She is very lucky to have you even if she doesn't realize or appreciate it.

Hugs

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Nothing you said is wrong or selfish or bitter. You are in a very difficult situation. I'm sorry it's so hard.

LW

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Graycat,
No, I am the one who is sorry. I wrote it right after, but I guess I didn't press the post button. My gosh, you really have been through a lot. I agree with the ladies here that you need to document and call the eldercare services end of social security. They will usually come for a visit to see her in person. When they came to see my grandma she asked them if they wanted coffee and then proceeded to place the coffee maker (regular black and decker plastic coffee maker) on the gas stove and turned on the stove to make the coffee).....that's when my uncle turned off the gas and got meals on wheels....and he also got power of attorney through the courts. We giggle about it now, but not then. It was heart wrenching as I'm sure it is for you and your family.
I'm sorry for seeming so harsh at first, you have been through so much....and it was the caregivers board....I'm often on it to see if I can help.....some help huh? But please first try to get power of attorney and immediately have her SS deposited in an account not her WalMart card so someone else uses it. Right there is something you should document. And when it's in the account her your name put on it with her so you can track everything.

Please forgive my harshness at first, I wasn't understanding the whole story. I'll send good vibes your way and hope that you guys can figure a better way for your sakes and hers.

Frenchy

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Frenchy, thank you for your kind words. Please don't be sorry. You and the other ladies on here have helped me more than you know. This is an amazing group, and I wish I could meet you all in person! I am touched and in awe of all of your strength and wisdom. I have felt very lost, as has my husband, but we really feel like anything we might go through pales in comparison to what anyone who actually has to fight this monster is going through. Everyone can say things to you like "oh I can imagine what that must be like" No, we can't! There just isn't any way that we can. Period. Our problem is that we agreed with each other that we could make it for as long as we needed to, no matter how hard it got, it just got hard in a way we have trouble wrapping our minds around . I love my husband with all my heart, and he had already lost his dad, I couldn't bear the thought of him not spending whatever time he and his mom have left, together. I couldn't bear the thought of depriving her of knowing her 1st and only grandchild. (I am 48...) I couldn't fathom not letting my baby get to know and love his grandma. We just never expected anything like what we have experienced. It has never been anything like what I could even imagine. I was ready to fight, and support her, and pray with her, and love her. She is just not doing anything that her son or I can understand most of the time. I get so angry that I can't do anything. I vacillate between giving up trying to help her, feeling like its more important to us than it is to her, and wanting to hug her and tell her it's going to be alright...
We are going to be OK, we just need to come up with a better plan and explore the resources that are out there. You all have given me a fresh outlook and lots of hope that we can preserve our sanity and still do the very best we can for M.
Off now to pray for peace and love and strength for all of you! Thank you again <3

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