First, I am so sorry you are going through this. It is so hard to be so far away--I went through this with my own father being so uninterested in hearing what was wrong and avoiding treatment, and my being in the Berkeley while he and mom were in Southern CA. Is there any possible way to move her closer to you and put her in assisted living? I know it's a long stretch, but it's what came to mind first. That did not work with my father, but thankfully after my father was gone my mother realized she needed to make some changes and preferred to make them herself and she moved in with us. Another thought might be to involve the social worker at her hospital, although they will not discuss her case with you without her permission. You and your sister might have to make a trip to your aunt and try and get things moving for her, simply letting her know that if she does not want to end up in a care facility she needs to be more open to other care. I wish I had the right answers and gobs of great advice for you to solve your problem, but alas I do not. I wish the best of luck and please keep us posted on what your outcome is. I suspect others on this board have much better knowledge and advice for you.
Bladder Cancer Questions
How to handle an obstenant patient?
Asked by ggr1868 on Tuesday, April 9, 2013
How to handle an obstenant patient?
My aunt lives in Dallas and my sister and I are her only relatives. We both live in St. Louis. She is relying on her friends but they are all elderly with their own health problems. She will not let us get her any home help and we cannot be there.
Today she found a lot of blood in her urine and went back to the urologist that performed the biopsy in December. He told her she has a bladder infection and gave her a prescript for antibiotics.
Last week, she went to her oncologist and they did another scan. They saw active lymph node activity in her lower abdomen and noted her legs were swollen. They have asked her to take a mild chemo that will minimize symptoms and slow down the disease. Thus far, she has refused.
My sister and I are at wit's end with her refusal of help. She will not entertain in-home hospice or any type of personal care.
Has anyone dealt with this situation? Does anyone have any suggestions? Thanks and your advice is much appreciated.
9 Answers from the Community
Sorry your in this situation. It's a tough one being that far away and her not agreeing to your help. I have an Uncle in another state and we have the same problem. He has a son that isn't much good, won't take care of his own father, yet Uncle won't let us do anything for him. So in our case hands are tied. It's frustrating. In the end of the whole discussion, if they are of sound mind, and able to make their own decisions, there isn't much we can do.
If you find the answer of how to deal with an elderly patient/parent who does not want to face the reality of life, let me know. Part of it is fear, part of it is history worship and part of it is wanting to be in control. As they get older, they see more and more of the way of life they knew disappearing and this is one place they feel they can hold on too.
How old is your aunt? Do you feel she is competent to make her own decisions regarding her health care? One of you may need to get legal services involved if she is no longer able to make decisions. However...if she is competent and fully understands what her choices mean in the long run for her prognosis, there may not be too much you can do. What a difficult situation you are in...I hope you can all come to an acceptable solution. Good luck and keep us informed. God bless!
I think its time for you and your sister to make a trip to see her. Then sit down with her and ask her what she wants you to do for her. How can you support her wishes for her life. I think you need to make the time to go and see her and comfort her.
My sister used to call my Mom on the phone and tell her what she should do..She lived 15 minutes from my mom but was too busy to actiually go and see her. I had to drive 2 hours each way almost every single day to care for my Mom. Being with her in person will make all the difference.
She is your Mom's sister and therfore really is a close family memeber who needs your help and understanding. Please consider going to her to help her plan out the last days of her life. This will be an enormous gift you will give yourself. Doing for others brings the most joy in life. You won't regret this you will only regret not doing it.
Hello. I'm Aliza, a Breast Cancer patient and the site's resident unofficial Medical Librarian. I have a Master's in Library Science with a concentration in Medicine and practiced in that field, running several Medical Libraries. These days I offer my services here and elsewhere by offering advice (usually non medical [librarians don't offer medical advice. It's considered bad form and is more or less illegal}). I offer referrals to doctors, other professionals (when warranted), hospitals/institutions, agencies, etc. and research when required/requested.
I empathize with your situation. The one detail you didn't cover was the aunt's age. Just so you know, I am permitted to speak from my own personal experience and that of my family and friends. My own mother had dementia.
No one likes growing old (it's not for sissies, as Bette Davis said). Less so, being ill with relatives at a distance. One of the first things I might do if I were in the situation in which you and your sister find yourselves, and your aunt (obviously) meaning a great deal to you is (unbeknownst to her, while in town in Dallas), is to visit an Eldercare attorney. He or she, depending upon your aunt's age and the information you've shared with us here (with his/her experience) should be able to determine if this is "normal" behavior of an elderly person, or if there's something pathological, in which case, steps must be taken. That might involve first being assessed in-person by a social worker. Then decisions will have to be made if she's found to be infirm: would you be willing to leave her in an Assisted Living Facility (with/without arrangements for chemo) or prefer that she be somehow transferred to St. Louis where though it's not home, she'll get to see her two nieces. Having dealt with a Mom who declined steadily over two years and a brother and daughter as well as myself who cared for her so that she never had to be cared for anywhere but home (except for short stays in a Rehab [and we practically lived there when she did]), being in a strange city in a facility where they know there's no family nearby (I don't know if there are good friends who can visit often [that can be a consideration]), there are often difficulties with places unless there's family who can check up (in our experience, and even then...)
These decisions are ever easy (I know from my own mother), but unless she's truly making a rational decision, and even if she is, steps must be taken. Some people make a rational decision to decline treatment, but if she's of advanced years and rational, she likely wouldn't be averse to chemotherapy that would relieve her symptoms and a case could be made perhaps for whether your aunt is in any state to determine such matters.
I however, am not an attorney and do not practice or attempt to practice either Eldercare Medicine or the Law. As I've written his, I see that both a Geriatrician (physician who specializes in treating elderly patients) as well as ElderCare Attorney should probably be consulted in this situation.
You have my best wishes for the best possible outcome for your aunt. It's admirable of you to be so concerned about her.
If you have any further questions, please feel free to contact me here or offsite through my email address.
My best wishes,
Thank you so much for all of your responses. I value each and every one. My aunt is 86 years old. She and her husband never had children and he passed away in 1991. She is a very independent woman. Currently she is talking about her cancer like it is just another 'bout' with an illness.
She is forgetful and, though she will not admit it, very hard of hearing. Her friends have been taking her to doctor appointments but she sometimes becomes very mean to anyone who is helping her.
I understand her desire to stay in her home but she could use some help with medicines, and routine things around the home. I believe she is afraid to let strangers in her home to help her which I understand.
My sister has been down three times in the last few months and I am going in the next two weeks. Admittedly, I'm no care giver. But, I have extensive experience with cancer as my mother spent 12 years, 4 rounds of chemo for breast and ovarian cancer, and passed away in 1996 of leukemia that her oncologist believes was brought on by all the chemo for the other cancers. Anyway, I spent every weekend with her and we were able to have her at home for her last 30 days. I really dreaded it but we all had a blast. She was so comfortable with her spirituality and so happy to have all of her friends and family right with her.
We all laughed and laughed, told stories, prayed and had the best 30 days (almost to the hour) that any of us ever spent together. She had great docs who prepared us well with what to expect til the end. She died in peace and we celebrated her life.
However, my aunt is just the opposite. She has no spiritual life at all. None of her docs have been able to tell us how quickly or what to expect at the end. Being so far away, we want to make these trips count. Can anyone suggest the stages of care she'll need and we'll need to plan? My mom had hospice and those folks are the most wonderful people in the world. Not only did mom love them, but they really endeared themselves and helped our whole family. I cannot say enough great things about hospice.
Thank you so much for your feedback and suggestions. I appreciate it immensely.
Your great. You know the deal.
Why not call hospice while you are there and meet with someone and talk about what they can do. At least you will have the information, and know the people, when the time is right. Would they speak to her and would she allow them to talk with her?
She is feeling like a wounded animal right now.. So vulnerable
No one knows how she will progress. But usually with cancer and her advanced age she will not linger. And that is a blessing all things considered. I would start to put things in place.
I would try and do the same things with her that you did with your Mom. I would read the scripture to her as well and if she didn't listen thats o.k...You are blessing her by doing this. Is there a pastor or priest you can call upon down there who might also pray over her? Her sould needs to get ready and maybe its your Mom urging you to carry on and help your Aunt. Your blessings are happening and your Mom is beside you right now and she is so proud of you and your sister.
Those that fight it the most are the ones who need it the most. You are a care giver. You decide who you will be during this time and don't let her anger or difficulty change your course. None of us know how we will be if we reach this age.
You are both good people you and your sister. You were raised right. I am proud of you too.
God bless, it will all work out..you will see. Look up and ask him to show you the way. The answers are all there..Just listen with your heart open.
All the best,
What was your aunt ever planning to do when she got older? WAS there a plan? Now that she is sick, I think it's time for you & sis to talk to her about her future. I don't know ANY older person who wants to leave their home, familiar surroundings and routine. But sadly, there comes a time when it isn't their choice anymore--it's a safety issue. Was she ever planning to give power of atty to either of you? Talk about that, too. I think you might want to get some good ideas from a social worker before you visit her. I'm sure social workers help children take the car keys away from their parents when they get too old, frequently. It will be PLENTY TOUGH WORK to do this "talk", but afterwards, you all will have a PLAN to follow. Maybe it would be best for Auntie to move closer so that you can see her more often? Remember, NOBODY WANTS TO LEAVE HOME. But sometimes, it's necessary for their health and everyone else's peace of mind. Good luck and I think you turned to the right source to get some answers.