I am new here, I have been lurking on these boards for a while and could use some advise.
My mother has the early onset type of Alzheimer's disease and she started having memory problems about 11 years ago. She is now 66. She had been living on her own until about 4 years ago. In the spring of 2003 we learned she had Stage 3 advanced breast cancer. She never told anyone that she had a large lump on her breast because of her Alzheimer's. I am the oldest of 4 children, and I lived in the same town as Mom, so it was decided that I become her POA. So we decided to go ahead with chemo, radiation and mastectomy. We then moved Mom to an Assisted Living facility, because it was obvious she was unable to take care of herself anymore. For 3 years the cancer went in remission.
Then in August of 2006, Mom fell at the ALF and broke her left femur, and they did an MRI and found out that her leg had fractured because the breast cancer was back and had metasticized to her bone. We learned she had areas of cancer on her spine, lung and femur. She went through surgery and a rod was placed in her femur. We placed her in a nursing home at that time, and 2 months later she fell at the nursing home and rebroke the same bone in her leg. She went through surgery again. Meanwhile her Alzheimer's disease is getting worse, the anesthesia made her so much more confused.
Her oncologist wanted to start her on chemo again. But after I talked to him regarding her quality of life and her Alzheimer's disease, he decided to not recommend any more chemotherapy for her cancer. This is where my brothers and sister and I got in a disagreement. The doctor wanted to start her on Femara pills to keep her cancer from growing. Mom has a living will that states she does not want to be kept alive by machines if she is dying. I interpreted that as she would not want any more chemo, since her cancer is terminal. But as POA I had the right to decide what I thought was the right treatment for my mother. And I did not want to prolong her life when she has Alzheimer's (Stage 5) and terminal cancer. Well my brother's and sister wanted Mom to take the Femara and prolong her life, they think she has some quality of life yet, but I didn't. She doesn't remember anything she did a minute ago. She still knows her immediate family, but gets our names mixed up. She cries and gets frustrated at the staff at the nursing home at times.
I worked for years as a CNA in a nursing home, so I saw first hand how an Alzheimer's patient suffers in the end stages of the disease. But my family doesn't understand this, they have never seen it up close like I have. Plus they live out of town and see Mom maybe twice a year.
Well anyway, we ended up putting Mom on Femara about a year ago, because my family wouldn't allow me to stop cancer treatment. Long story. Well her tumor marker stayed down for about 9 months and 3 months ago her tumor marker started going up again, which means the Femara quit working and her cancer is growing again. I have to go with Mom to her next doctor appointment in a week and I know the doctor wants to put Mom on a different hormone treatment, which the doctor said, may give her another 6 months to a year and a half of the cancer not growing.
I want to tell the doctor to stop all treatment, but how do I deal with my family who are in denial.
Has anyone had to deal with their family member having Alzheimer's disease and terminal cancer.
I feel for you being the one who has to make such a controversial decision but I personally agree with what you have said here. I see no point in subjecting an Alzheimer patient with other extenuating health problem to treatments that have side effects especially when it will only extend life for another few months.
You have to ask yourself.... what would Mom want if she could rationalize thought this problem. You have her directive but you also have her previous decision. Was it influenced by your siblings? You know how you feel and why. Talk to your siblings and ask them to give you rational reasons for how they feel and what they plan to do with that extra time. The doctor usually falls on the side of extended treatments because that is what they do. You need to know from him the benefits and all the side effects. Get you a pros and cons sheet and put everybody's thoughts down on paper. See if you can come up with a decision after you get all the facts. Perhaps your siblings will change their minds when they see it all in black and white.... perhaps you will.
On the flip side.... this is terminal cancer. At best you are just delaying the inevitable not curing her cancer. If this time can be used by you and your siblings to find quality time with your Mom then there is a reason to stay the course. If the siblings are going to stay away and your Mom is going to be frustrated where she is then there is reason to discontinue.
I may be facing a similar but different situation with my Dad. He has Vascular Dementia, has had 3 heart attacks, 5 bypasses, and a stint, and he is 87 years old. He has no current memory, recognizes immediate family some of the time, is getting feeble and sleeps a lot. His liver function test show elevated numbers. My sister insisted on taking him to a gastroentrologist. They are discussing a colonoscopy. I finally ask why they were even considering putting him through this procedure. Even if his liver is failing what can they do? Could it be a result of the extended use of Statins and their side effects? Why not stop that medication? What difference will it make in the time he has left.
We have to ask these questions with each intervention. We have to weigh the benefits vs the effects. Then we have to realize that life is not about quantity but about quality. I do wish you luck in your decision. I lurked a while before I finally typed and found an amazing group of people here. Each is having similar experiences and willing to listen and share experiences and advice that you cannot get from those that have not walked where we walk. Know I keep you in my thoughts and prayers..
I also think you should tell the doctors "no more."
She has suffered enough. Let her go. This is not only what she wanted when she was still in her right mind, but the rational and humane thing to do. YOU have the POA, which is a blessing to your Mom. Don't put it up to a family vote. YOU decide in your Mom's name.
You are in my thoughts and prayers. We just lost Mom 2 days ago (it seems much longer). The last stages were really hard. She had a small loug cancer, and her final days she was having problems breathing. But it was ultimately old age that killed her. We were lucky that none of this began until she was over 90. I am your mothers age, approximately - I would ask you to let me go and give me no further chemo treatments if you were my daughter.
Thank you both for your kind words. This has been a difficult 4 years. Hopefully I can convince my family that I am doing the right thing. The more I think about it I need to be Mom's advocate, since she is unable to make her own decisions anymore. I did give in to my family a year ago to keep her on the Femara to keep the peace. I think and hope that they will understand if I decide to stop Mom's treatments.
It seems like everyone else I talk to about this feels the same as me, but my own family disagrees, I can't understand why. I can understand they don't want to let go of Mom, but when is it time to stop cancer treatment and end the suffering. The ironic thing, is that my sister is a Doctor, and a Neurologist. So she sees Alzheimer's patients, but she never sees them in the last stages. But she is a doctor and they want to try everything to keep there patients alive, even if their quality of life is not good.
It seems no one is going through what my mother is going through, having to deal with 2 terminal illnesses. I can't find any message board that deals with this problem.
I am so sorry you have lost your mother, Martha, you have my sympathy.
Deb, I am so sorry you are going through this with your Dad also. Keep strong.
Do what you know in your heart is right Shari. You are the one that has watched your Mom's decline. You are the one that knows where it is going. Family members that are detached cannot grasp the reality of the situation. Detachment also bring guilt with it. So by advocating for further treatement and quantity of life they over look the quality of life and think they are being kind. They are grasping for a way to feel better. It is hard to say good bye when you are not at peace with yourself.
No matter how hightly educated or trained in the medical field, your sister is her mother's CHILD. They are not reacting professionally, but as children. They can't stand her dying. They are unable at this point to distinguish between living a halfway decent life and wasting away with great suffering. You are the only one thinking rationally, and your decision is the only one that counts.
I worked with someone whose mother-in-law was also being treated for breast cancer while she had Alzheimer's. This woman couldn't understand the family's decision, which seemed to be based on some kind of belief that her MIL would get "better." Her MIL inevitably just became sicker and sicker, and more and more confused by the pain, doctors and changes in routines.
Getting another 6-months of the pain and debilitation of fighting cancer -- even without the continuing degeneration of Alzheimer's -- is not a blessing for your Mother OR her family. What your family has to understand is that in this case, your Mother is not getting another six months to enjoy a full life, make final arrangements, resolve open issues or to say good-bye to her family. Another six months for her will only be filled with pain, loss of functions and more confusion.
It may be time to ask your doctor to a referral to hospice, and to have the family focus on making her last months as comfortable and stress-free as possible. Hospice will also be able to help your family members understand what is actually happening, and the fact that hospice is involved in her care will make your family members understand that this is not a situation in which treatment is going to lead to an improvement in quality of life -- only length of suffering.
Shari, fight for your Mom no matter what your sister and the rest of the family "feels" is right. My mom passed on the first of November this past year, my dad on the 29 of September this year. In addition to mom having AZ, she also had breast cancer which I chose not to treat. We discovered the lump when she was in the psych hospital getting her meds adjusted. after discussing this with several of the doctors, we decided that at this stage of her life and journey, it would do no good for anybody to put her through any type of treatment. Fortunately, or un as the case may be, I am an only child and the burden fell on my shoulders to make this decision. My father was looking to me to take care of Mom and so I didn't even bring this up with him. He worried about his wife of 64 years enough.
To add to this burden, Daddy had an abdominal aoritic anuerism (7 cm) along with vascular dementia that ultimatly took him. But on top of all of this, his own prostrate cancer had returned and I was also dealing with that. So yes, I have walked in your shoes and it isn't an easy path to take.
There are alot of rocks and pebbles on that path and they often creep up to cause you to stumble and twist your ankle along the way. But keep in your mind that what you are doing is the best for your Mom and that nothing is more important than that. When I went to bed at night, that allowed me to sleep. That and knowing that my parents had guardian angels that would take care of them and keep them safe until it was their time to leave me.
You do what you think is best and you leave the rest to god.
you are in my prayers....
Thanks again for all of your replies, they have been very helpful. My husband also supports me fully, he also believes we should stop all cancer treatment for my mother.
A part of me feels guilty also for wanting to stop treatment, but I know in my heart this is the right decision. Putting Mom on another hormone treatment will only prolong the suffering from the cancer and the Alzheimer's disease. She will suffer at the end of her life, but hopefully the nursing home can make her as comfortable as possible.
And another part of me is scared to tell my family of my decision, because a I'm afraid they won't understand. I want to keep a good relationship with them. I just can't seem to get through to them no matter what I say. They seem unable to let go, no matter what quality of life Mom has now.
Thanks everyone for helping me with my decision, and I am going to tell the doctor to stop treatment at Mom's next appointment on Jan. 9th.
Shari, the person that you are treating for the cancer isn't your mother. Your mom has already left you. The disease has taken her away from you already. It is am imposter that is in her body now. If thinking about it that way helps, do so. I found it easier to think that it wasn't my mother that I was treating, because my mother would never have allowed herself to get like this...this made it easier for me to work with the problem and not take it personal. I could take a step back and deal with it with the staff and it was as if the person was someone I needed to care for without getting too deeply involved. Does this make sense?
Your family is clinging to the hope that somehow your Mom is going to wake up someday and she is going to be your Mom again. I know, I saw this with my dad. He so desparately wanted my mother to return to his wife of over 64 years. It ached to see his misery. I hurt for him and for me. But your family needs to see that your Mom isn't ever going to be there again for them, and they may never get to that point and for that I'm sorry.
Do what you think is right. My brother made the decision to NOT put my Grandmother on a feeding tube...and he was right. They were very close, best buds, and he made the decision that was right for her. My Mother and Uncle didn't want to deal with it.
A rational person might feel that further treatment, despite all the negatives, might be worth a few extra months to tie up lose ends. Your Mom is not a rational person, she would suffer with for no good reason, and with little understanding as to why she is suffering.
Do what you think is best. With the HIPPA laws the Doctor can only speak with the patient or her representative. You have POA. Tell the Doctor that should your siblings approach or call him that he is to only say that there is nothing left to do and that he is not permitted, by law, to discuss anything else with them.