Angry, exhausted, and looking for realistic answers - GBMIV caregiver

techieGirlVA

My mother-in-law was diagnosed in February of this year with an inoperable GBM, stage IV. She is 60 years old, and is also an insulin dependent diabetic, has advanced COPD, and advanced heart disease. My husband and I drive four hours each way every weekend to provide my father-in-law with respite care, as the medical bills have left him unable to hire in-home care.

Before I get into this details, let me preface. I have always thought the world of my mother-in-law. We have had a wonderful relationship, and have enjoyed many happy times together. My husband as well, has been very grateful for her presence in both his own and his father's life, as she brought laughter into their home after his mother's very sudden and tragic death when he was teenager.

Since my MIL was diagnosed, she rapidly ceased to be the person that I knew. The tumor is located in her brain in such place that it primarily affects her short term memory. Until this experience I had no idea how much of our indivdual personalities are defined by our most recent experiences. Most of our visits revolve around what my husband and I have come to call the "litany of the dead". She gets stuck in the round of questions of who in her family is alive, and who is dead. This can go on for hours, with the same 20 family members, and attempts to kindly lead her in a different direction are almost always redirected back into the loop. She doesn't know what day it is, how old she is, where she is (living in the house she's been in for 20 years), she's forgotten my father-in-law and the loving relationship that they have had for these last 20 years and is thrown back into the fear and anxiety that she experienced in her abusive first marriage. She doesn't sleep at night because she doesn't know whether its nighttime or daytime, and her addiction to cigarrettes compels her to chain smoke as she forgets as soon as one cigarrette is out that she has just had one. She no longer can cook or sew - two things she dearly loved to do. She can't do crafts because she can no longer follow simple directions. In short, she seems to be simply a shell of a person, existing completely and totally in her confusing and terrifying present.

She has had radiation treatments, as much as she can safely be given. She has been on chemotherapy for 8 months. We have prepared ourselves for the inevitable end that we have been told by doctors since the beginning would be coming. My father-in-law has aged 10 years in the past 8 months, and his health is declining from lack of sleep. My husband and I have put both our careers, hobbies, and other obligations on hold - all the things that make our daily lives enjoyable - and are burned out to the point of exhaustion. She has been slowly, but progessively declining, all the while trapped in a mind that no longer functions correctly. I am horrified at myself, because I find myself just wishing it would all end.

We have had no hope throughout this process that she would recover. The rounds of chemo were simply hoping that she would regain enough of her memory to be able to have SOME quality of life, rather than existing at the whim of her base emotions. My father-in-law continues chemo against the wishes of her son - an EMT and firefighter - simply because he can't bear to be the one that decides to stop treatment. Now suddenly, there has been a slight improvement in her memory, although her motor skills have declined and her body's ability to regulate its blood sugar levels - even with insulin - seems to have become wildly unreliable. Has anyone heard of a GBM, stage 4, inoperable patient, suddenly getting better after 8 months of failed treatment? Are we looking at a possible remission? If she does regain her short-term memory, are the memories that she had previously - of her family, of her loving second marriage to my father-in-law, of the weddings and births and happiness - lost completely? I am fearful that this slight upswing is just a delay of the inevitable... another drain on the already strained resources that my father-in-law has as well as on his own fragile psyche, and more importantly prolonged torture of my mother-in-law. What have people experienced in the end stages? How have people coped with the feelings of frustrations and impotence associated with prolonged caregiving?

Thank you all so much for the opportunity to vent, and for any responses you may have.

zahalene

No pat answers here...
but i would suggest that you check into getting hospice immediately. This situation sounds far beyond the abilities of the family, no matter how dedicated. Money spent on plane tickets alone could be applied to hiring help if needed.
There are options even if none of them seem 'perfect'.
The urge is to sacrifice everything to care for the seriously ill one, but the reality is that the life of others will go on and their needs are very real too.
God bless.

soccerfreaks

Next steps
Your emotions, your anger, your exhaustion, your frustration, your confusion, these are to be expected. Do not feel guilty about any of them as they are among the litany that caregivers experience over the course of treatment of a loved one.

Zahalene offers very good advice re hospice. At this point, it sounds as though some help for dad would do a world of good for everyone, including mom. I offer the following few sites that may or may not offer financial help directly, but through their networks may be able to point you in the right direction:

http://www.cancer.gov/cancertopics/factsheet/Support/financial-resources

This site is put up by the National Institute of Health or some such, and is government-supported. TereB has responded in other discussion areas with some excellent suggestions, and they may apply for you as well. I am taking the liberty of copying and pasting them as well:

Cancer Care, a non-profit org., offers free support and counseling for cancer patients by oncology social workers. They have face-to-face counseling and counceling on the phone. Support groups on the phone are available too and are moderated by an oncology social worker. Call 800-813-HOPE. They can also give you info about financial resources. Check their website: www.cancercare.org

Gilda's Club - www.gildasclub.org - they offer free social and emotional support. Not sure if they may have financial information but check it out just in case.

Live Strong - www.livestrong.org - offers one-on-one support.

American Cancer Society (here) can also give you financial, support, etc. information available in different cities.

Try these, see if they can offer your father-in-law and his wife some assistance at this critical time.

As for when to pull the plug on treatment, so to speak, that is a most personal decision. While it may be difficult to bring the subject up overtly, perhaps your husband and you can do so by bringing up a corollary but related subject: what are we expecting for the future and what are we going to do when this happens or that happens, that sort of thing.

At the same time, of course, it is important, as cold as it may seem to get legal matters in order. Dad does not want to have all of that drop on him at the last minute, in the midst of great grief, and you don't either. It sounds as though the time has come to address matters of this type if they have not been previously covered.

This is a difficult situation for all.

I wish your mother-in-law, her family and loved ones the very best.

Take care,

Joe

techieGirlVA

soccerfreaks said:

Next steps
Your emotions, your anger, your exhaustion, your frustration, your confusion, these are to be expected. Do not feel guilty about any of them as they are among the litany that caregivers experience over the course of treatment of a loved one.

Zahalene offers very good advice re hospice. At this point, it sounds as though some help for dad would do a world of good for everyone, including mom. I offer the following few sites that may or may not offer financial help directly, but through their networks may be able to point you in the right direction:

http://www.cancer.gov/cancertopics/factsheet/Support/financial-resources

This site is put up by the National Institute of Health or some such, and is government-supported. TereB has responded in other discussion areas with some excellent suggestions, and they may apply for you as well. I am taking the liberty of copying and pasting them as well:

Cancer Care, a non-profit org., offers free support and counseling for cancer patients by oncology social workers. They have face-to-face counseling and counceling on the phone. Support groups on the phone are available too and are moderated by an oncology social worker. Call 800-813-HOPE. They can also give you info about financial resources. Check their website: www.cancercare.org

Gilda's Club - www.gildasclub.org - they offer free social and emotional support. Not sure if they may have financial information but check it out just in case.

Live Strong - www.livestrong.org - offers one-on-one support.

American Cancer Society (here) can also give you financial, support, etc. information available in different cities.

Try these, see if they can offer your father-in-law and his wife some assistance at this critical time.

As for when to pull the plug on treatment, so to speak, that is a most personal decision. While it may be difficult to bring the subject up overtly, perhaps your husband and you can do so by bringing up a corollary but related subject: what are we expecting for the future and what are we going to do when this happens or that happens, that sort of thing.

At the same time, of course, it is important, as cold as it may seem to get legal matters in order. Dad does not want to have all of that drop on him at the last minute, in the midst of great grief, and you don't either. It sounds as though the time has come to address matters of this type if they have not been previously covered.

This is a difficult situation for all.

I wish your mother-in-law, her family and loved ones the very best.

Take care,

Joe

Can't decide for him
Links to financial options are much appreciated. Hopefully we can get my FIL to review them.

Both my husband and I have been trying to get him to look into hospice, unfortunately all the the organizations we've found in his area require the patient to have stopped any extraordinary measures at prolonging life. My father-in-law's reluctance to stop chemo has meant that he is unable to participate in these programs. Lots of deep-seeded issues regarding his first wife and his inability to do anything to help her when she died suddenly. My husband and I have also tried to get him to speak to a lawyer about getting a checklist of items together that he will need to have in order at the end, and to review the terms/conditions of the will (which has some complications associated with it as well), but he seems to be sticking his head into the sand when it comes to any practicalities of the situation. I think he is just overwhelmed, and the idea of trying to handle any of the details is just too much for him. Its frustrating, since my husband and I can only suggest and cajole... he is the one that actually needs to take some of the steps himself and until he is emotionally willing to do them... it would seem that we are looking at a very long road ahead of us.

soccerfreaks

techieGirlVA said:

Can't decide for him
Links to financial options are much appreciated. Hopefully we can get my FIL to review them.

Both my husband and I have been trying to get him to look into hospice, unfortunately all the the organizations we've found in his area require the patient to have stopped any extraordinary measures at prolonging life. My father-in-law's reluctance to stop chemo has meant that he is unable to participate in these programs. Lots of deep-seeded issues regarding his first wife and his inability to do anything to help her when she died suddenly. My husband and I have also tried to get him to speak to a lawyer about getting a checklist of items together that he will need to have in order at the end, and to review the terms/conditions of the will (which has some complications associated with it as well), but he seems to be sticking his head into the sand when it comes to any practicalities of the situation. I think he is just overwhelmed, and the idea of trying to handle any of the details is just too much for him. Its frustrating, since my husband and I can only suggest and cajole... he is the one that actually needs to take some of the steps himself and until he is emotionally willing to do them... it would seem that we are looking at a very long road ahead of us.

Belaboring the issue
Not to belabor the issue, but it may be that home hospice, if available, would alleviate dad's feelings that he was not able to help his first wife, since, from my experience, home hospice folks encourage the caregivers to be involved in care, even to the point of showing them how to perform various functions including providing injections.

Your observation that the folks that can help will not at this point is both interesting and poignant: they are saying, in effect, we will not help until she won't or can't help herself. I suppose that makes sense, but it still strikes me as sad.

If none of the sites provided can be of assistance at this point, you might also consider local charities. I know that in my area of Virginia (I am a VaTech boy, by the way), there are any number of them dedicated to loved ones who have died from cancer, offering visitation, transportation, and so forth. Maybe there is something down that avenue that might relieve dad's burden?

At this point I suppose the real issue is between mom-in-law and her doctors, as it should be. As long as they see some reason to provide the chemotherapy (and they can choose to stop it when THEY find it to be counterproductive) and as long as she wants to receive it, it is in their hands. As it should be.

Hope is a wonderful thing, even if it sometimes cultivates tragic circumstances, tragic endings.

Again, best wishes.

Take care,

Joe

grandmafay

I don't have any realistic
I don't have any realistic answers because it sounds like those will need to come from your father-in-law. Do the doctors really think the chemo is working? Have you talked to the doctors directly? If not maybe you need to do that with her permission, of course. What hope are they offering? I know my husband was given an extra treatment because he wanted so badly to buy more time. It wasn't until I asked the doctor directly and asked him to be "brutally honest" with us that he said that he thought the chemo was just making my husband sick and he had nothing left to offer. It was hard to hear and I think hard for the doctor to say, but it gave my husband a different prospective. The doctor contacted Hospice for us. That made things easier. I didn't have to feel like I was giving up and neither did my husband. We could say that the doctor called in Hospice. I know that sounds silly, but it helped us. I would add that our Hospice has recently changed its rules. They now allow some treatment if its for pain or quality of life not to extend life. You might check with them again.

I note that the son is offering opinions but is he offering help? He needs to step up. I know this is hard for him, too, but he needs to step up. If he can't be physically there, maybe he can offer some financial aid.

My heart goes out to all of you. Facing these end of life issues is difficult at best. I know all the anger, guilt, hope, and hopelessness that you are feeling. Know that you have many people on this board who share those feelings. Best wishes, Fay

SonSon

techieGirlVA said:

Can't decide for him
Links to financial options are much appreciated. Hopefully we can get my FIL to review them.

Both my husband and I have been trying to get him to look into hospice, unfortunately all the the organizations we've found in his area require the patient to have stopped any extraordinary measures at prolonging life. My father-in-law's reluctance to stop chemo has meant that he is unable to participate in these programs. Lots of deep-seeded issues regarding his first wife and his inability to do anything to help her when she died suddenly. My husband and I have also tried to get him to speak to a lawyer about getting a checklist of items together that he will need to have in order at the end, and to review the terms/conditions of the will (which has some complications associated with it as well), but he seems to be sticking his head into the sand when it comes to any practicalities of the situation. I think he is just overwhelmed, and the idea of trying to handle any of the details is just too much for him. Its frustrating, since my husband and I can only suggest and cajole... he is the one that actually needs to take some of the steps himself and until he is emotionally willing to do them... it would seem that we are looking at a very long road ahead of us.

Hospice...
Excerpt from your comment [[trying to get him to look into hospice, unfortunately all the the organizations we've found in his area require the patient to have stopped any extraordinary measures at prolonging life.]]
Hospice defines itself as caring for those individuals who have received a terminal diagnosis. Period. Now, as far as "life-saving" measures such as chemotherapy that is arguable. Some therapies, chemo or radiation are NOT life saving but palliative. My mother-in-law was given radiation treatment for metastasis on her chest when it was clear that the cancer was just running her over. It was palliative.
When we had hospice come in there were medicines that they did "approve" - which they provided. No, they did not approve the Tamoxafen which is chemotherapy. (we chose not to continue the Tamoxafen and instead work on making her comfortable) However, they did say that if we wanted to continue giving it to her that we could. They did approve of Decadron which was prescribed to her to reduce the swelling in the brain from the tumors there. This is considered life saving but they approved it because it improved the quality of life remaining (less aggitation, more lucid etc).
Also, about paying for this stuff...contact the social worker at the hospital or with the hospice service. Often there are programs that assist with this. Our mother-in-law was cared for by Season's Hospice which has offices in many places in the country and they sponsored the entire cost of her care through foundation programs.
It is possible - just keep asking.
Fatima