My mom

robinbach

Hi all - I'm new to this site. My mom was diagnosed with stage IV metastatic CUP at the end of February. She just turned 80 on Feb. 22nd - the woman is amazing. Has never been sick - plays golf twice a week, exercises, reads 5 novels a week, has tons of friends and a wonderful social network. She's also fiercely independent. She has had two cycles of chemo - carbo and taxol. The chemo was halted this week because she has very severe neuropathy in her right leg and right foot. She's now afraid to drive because she can't always feel the gas pedal and brake. We started her on an antidepressant this week too - although I'm not sure if she'll actually take it or not. She hates taking drugs and she's so overwhelmed by this whole process she tends to shut down. I am the oldest of three - I live about an hour from my mom. My brother lives 1/2 hour from her and calls her almost every day and sees her on Sunday for dinner, but he can't handle anything beyond that. My sister lives in Atlanta and calls me once a week so I can update her on what's up with mom. So basically, I'm it - and I don't have a problem with that role - I'm very comfortable with it actually. I am the closest to my mom - she's my best friend. I think we're doing pretty well so far given the circumstances - she was told upon diagnosis that she should think of the future in months, not years. We got her affairs in order during week #1 - I'm very proud of her and how well she's been handling things. She lost her hair week #4 of chemo - now wears a fantastic wig that she's getting used to. Sorry if I'm rambling. Here's the deal - as time moves forward, I'm finding she's feeling very hopeless, especially with this neuropathy taking away her independence and I know she hates using the cane to help her walk but she has no choice. I know she feels like she's a burden on me - I tell her all the time that I'm happy to do whatever I can for her. I deal with the doctors and nurses, keep track of her blood work, etc. She doesn't want to be an active participant in this whole thing - she counts on me for that. Anyway - rambling again, sorry - I was wondering if anyone has any advice for me as I move forward with this whole process? She's having a CT scan next week so we can determine if the chemo has done any good and what our next step, if any, will be. If any of you have any advice I'd love to hear it.

AKAngel

Help isn't far
I understand you all too well. My mom has lost sensation in hands and feet, up to elbows and knees, and she hates being dependant on me or my father for any help tying shoes, buttoning shirts,etc. She is completely a control-based person and this cancer is definitely taking its toll on her independence. My mom's only 61, but she doesn't have the advantage of having friends to help support her. Do your mom's friends still participate in her life? Is she still trying to be as active as possible? Maybe she's overdoing it, trying to be what she was, vs what she is now. Have you had a chance to check into a hospice facility?? Ask your mom's doctor or go online to see if one is near you. My mom finally agreed to hospice care and they can help a lot. It's almost always covered by insurance and they don't just help your mom, they help you too with counseling and giving you time to breathe. They can come to her home or they can do hospital care if needed. It is really an amazing service and will help out in many ways. Prayers to you, and hugs.

Barbara53

caring for moms
I’ve been caring for my mother for over a year, through surgery and chemo and various complications from everything. Like your mother, my Mom always moved fast, busy all the time. Slowing down has been hard for her, still is.

After spending so much time with Mom and her 80-something friends, it looks to me like the Greatest Generation believes they can prevail over anything and remain independent. I’ve spent a lot of time and breath life-coaching on this issue! For example: it is not a personal failure to get sick and old and need help. Mom also believed that she had to “get well” to please everyone, and thought she would disappoint us if she didn’t manifest a miracle.

These days Mom’s energy levels are very low, but she doing just what Maggie Callahan (hospice nurse, author of Final Gifts and other books on dying) said she might do – become a more intense version of herself. Every day she will have things she HAS to do in order to “accomplish something.” Unfortunately, she has also become more anxious, fearful and obsessive, which is sad to watch.

My mom has lower limb lymphedema (from surgery) and neuropathy in her hands (from carbo/taxol chemo). For the neuropathy, she takes Lyrica and Neurontin (sp?), which help a lot. I know what you mean about meds. A couple of months ago it was like pulling teeth to get Mom to add two new meds to her regimen, which were needed to manage a new chronic condition. I left for a few days and she decided to try going without them and got really sick. It’s the dark side of the Greatest Generation.

grandmafay

Rambling is Good
Rambling is good and there are many here who are willing to listen. I have found that sharing here is really helpful. I am sorry that you and your mom are now a part of this cancer family but glad you found this board. The things you and your mother are feeling and going through are not unusual. You will find many here who have experienced many of the same things. I won't say that they are normal because normal has changed for you. I can relate to several things you rambled. I lost my husband about 6 month ago to colon cancer and have a 91 year old mom I have cared for. She is now living with my sister for which I am very grateful . My husband also left all the information stuff to me. He didn't want to be bothered with the details. The first time he went through chemo, he tried to do too much. He hated it when I had to do the driving. He hated the neurophothy. He did handle the diagnosis and being told that his cancer would be life shortening very well. He just accepted it and moved forward. As far as what happens next and your moving forward, the results of the CT will help with determining that. I would talk with hospice. Even if you are not yet ready for their full services, they are able to offer you help moving forward. It is really helpful to have that connection. I especially appreciated having a number I could could call with questions 24/7. I wish we had contacted them sooner. Now about that generation, I agree that they have real problems accepting that they need help. I belong to a church with many older people. Convincing them that they cannot always be independent is a real challenge at times. My mom finally agreed to move in with me only after my husband became ill and I told her I just couldn't continue to go to her daily. She had also just suffered the trauma of having two brothers and her 16 year old dog die within two weeks. She, too, hates taking pills. Even though she only takes three a day, it is a constant battle. I don't know if any of this helps, Hey, I like to ramble, too. The only thing I can say for sure is that caregiving is really tough. Each day is different and brings new challenges. Just do the best you can and recognize that that's all you can do. Take care of yourself. Fay