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CARENOTES / Past Carenotes / Discussion Forum / Let's Talk

Carenotes

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 05/08/09

My 86 year old mother has been diagnosed with cancer.  Right now she is living with my sister (who we will call Sis) who is her primary caregiver. Sis is an attorney and has a fledgling practice.  Her husband works from home 4 days a week. He is with my mother a good deal of the time. My husband and I are retired and live about an hour away. We have two other sisters, and a brother who see and call my mother when they can.    I call regularly and see her at least once a week. So 95% of the caregiving falls on Sis and her husband.
 
My mother is in the middle of radiation treatments.  She goes 5 days a week.  My sister takes her 4 of the days, I take her one day. I take her to her various doctor's appointments and am in the process of cleaning out her apartment and moving her permanently to Sis. 
 
My mom is experiencing some problems with short term memory loss.  She is also taking Percoset for pain which probably adds to that problem. The radiation is starting to take a toll on her.  She is experiencing vomiting and diarrhea.   In my mother's mind, it seems that she can only deal with the fact that she is feeling sick.  She cannot seem to understand that this is short term and if she can get through these next couple of weeks, she will start to feel better.  The doctors seem to feel that she has somewhat of a chance of curing the cancer. One of the issues is that my mom does not seem to have much of a will to try to fight the cancer. 
 
Sis has been taking such good care of  my mother. She has a wound which has to be dressed twice a day.  Not a pleasant thing, but Sis has been doing it since February.  She fights my sister every step of the way and it is really taking on toll on Sis.  She doesn't want to take the anti-nausea and anti diarrhea medicine.  She complains when Sis leaves for work.  She doesn't want to get out of bed.   Today she refused to go for radiation. Sis is a very strong person, but I think she is at her breaking point.
 
What more can I say.  I'm sure our story is a familiar one.  What can we do to make it easier on all of us?  Are there resources available? And how do we find out about them?
 
Any help you can give will be so very much appreciated.
 
Thank you.


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Name: BETTE
Location: Delaware County, PA
Date: 05/08/2009
Time: 06:07 AM

Comments

Every county in the U.S. has an Area Agency on Aging (under different names: Ours in Delco is "COSA"; in Philly it's "PCA"), which is supported by our government and has MANY types of resources. Call them today (check the blue pages of the phone book), and ask for a free assessment. They'll come out to her home within a week or so, and provide her with info, as well as telling her what benefits she qualifies for.


Name: PAM
Location: APTOS, CA
Date: 05/08/2009
Time: 06:24 AM

Comments

HI, I WENT THROUGH SOMETHING SIMILAR WITH MY MOM LAST YEAR. IS YOUR MOM A CANDIDATE FOR HOSPICE TRANSITIONS WHICH WILL PROVIDE RESPITE VOULUNTEERS TO HELP COOK, VISIT, SHOP FOR YOUR MOM AND SIS. WITH REGARDS TO THE WOUND CAN THEY HIRE SOMEONE PRIVATELY ONE VISIT A DAY TO CHANGE THE BANDAGE? AND YOUR SIS IS ABLE TO COMPLETE THE OTHER TIME. ALSO, HOSPICE TRANSITIONS WILL SOMETIMES PROVIDE PEER COUNSELING OR YOUR LOCAL AMERICAN CANCER SOCIETY CAN DIRECT YOU TOWARDS SOME HELP FOR YOUR MOM. DEALING WITH RADIATION, CHEMO AND CANCER IS A TREMENDOUS BURDEN TO CARRY AND ALL OF THIS MAY BE SCARING YOUR MOM. LASTLY, DO YOU HAVE ANY CHURCH CONNECTIONS? OUR PASTOR VISITED MOM TWICE A WEEK AND IT WAS A TIME TO TALK ABOUT HOW SHE WAS FEELING AND WHAT CAN BE DONE. BEING FEARFUL WILL PREVENT PEOPLE FROM DOING WHAT THEY KNOW THEY NEED TO DO. LASTLY, LOCAL SENIOR CENTERS USUALLY HAVE A RESOURCE HANDBOOK WHICH WILL LIST MANY RESOURCES IN YOUR AREA FOR VARIOUS SERVICES. I HAVE BEEN IN HEALTH CARE FOR OVER 30 YEARS AND I STILL AM AMAZED AT ALL THAT CAN BE MADE AVAILABLE TO PEOPLE IN NEED. TAKE CARE AND KNOW THIS TOO SHALL PASS. BE THINKING AND PRAYING FOR YOUR FAMILY PAM IN APTOS, CALIFORNIA


Name: Judy
Location: Montana
Date: 05/08/2009
Time: 07:39 AM

Comments

"Sis" is in a tough position. Is it possible for her to get a respite worker or PCA in to help care for your mother? Contact your local Area Agency on Aging, Hospice organization, County Council on Aging. These organizations should be able to network you to available help. Don't just assume that you cannot afford help. As for getting mom to take her medication, how about slipping it into food. She may be having trouble swallowing pills. I also wonder if anyone has asked her if she wants to continue the fight. Sometimes we assume that our parents want treatment when what they really want is to be comfortable. You all are doing wonders for your Mother and maybe she is really having trouble managing pain and feelings of helplessness. There are a lot of life changes going on for all of you so now would be a good time to locate nearby caregiver support groups where each family lives. Don't hesitate to intervene where "Sis" is concerned because she is also at risk from the stresses she is under. Know that you are not alone and that there are a lot of us out here and we shamelessly use our caregiver support groups to get through this process.


Name: Jane Anthony
Location: Maryland
Date: 05/08/2009
Time: 10:27 AM

Comments

As hard as it is, sometimes we have to listen to and respect the wishes of those we are providing care for. If you mother is still able to make decisions and understands the consequences or benefits from the decisions she makes, then I would back off a little and let her determine her course of care. You should be able to tap in to resources by contacting your local area agency on aging. If you are not sure who that is, log on to eldercare locator and that website should be able to navigate you to information in your area.


Name: Penny Stollmeyer
Location: Edison, NJ
Date: 05/08/2009
Time: 12:59 PM

Comments

Hello. I want to first say how sorry I am that your mom has been diagnosed with cancer. I know this is not easy for you and your family. It sounds like your mom has two great daughters who show such love and concern. It also sounds like as a family, you are doing all you can to help your mom through this difficult time. I'm glad you reached out to ask for help for all of you because it will be important for you and your family to stay as strong and as positive as you can. It will be so important for all of you to connect with some type of support group. I'm not sure where you live but the internet offers a huge supply of resources. You could simply google support groups for cancer patients and family in your area and see what comes up. You may want to talk to your mom's doctors to see if they can offer you some assistance also. Visit: supportgroupforcancer.com. This site offers a variety of resources that will be helpful to you and your mom. As a life coach I would like to share some coping tips with you. The hardest part about being a caregiver for a loved one is "accepting what is"(I've been there myself). It sounds like you are being very positive in this situation, recognizing that things can get better. This is a great quality and your hope and faith are wonderful! The problem is your mom is not in the same place as you. At 86 years old, she probably feels like she is too old to fight the cancer. Now I know there are many people who live to their 90's with determination and positive thinking, along with good health; but your mom has to first accept what has happened to her before she can move forward to fight. You cannot do this for her, but you can do it for yourself, along with your sister. May I suggest that you journal how you are feeling, talk it out with SUPPORTIVE friends, or even a therapist/counselor. You need to give yourself time to deal with the anger and sadness of a loved one being sick. If your sister is the primary caregiver, chances are she has hit her breaking point because of the stress of it all. I'm sure you have your own level of stress yourself and the best thing you can do for your sister is listen when she needs to talk and simply ask her, "What would make things easier for you now? and "How can I help you?" I'm hearing you say that you live an hour away and I know you probably can't help out as much as you'd like but please remind yourself that you are doing the best you can. My mother took care of my grandmother before she passed away in March. I too, helped out as much as I could, but she was the primary caregiver. The most important thing for your sister will be to take little breaks, whether it be a short nap, a walk, listening to relaxing music, writing in a journal, a bath, etc. May I suggest that she schedule one day a week where she has someone else take over the caregiver role for the day, so she can go out. My mother had a hard time giving up total control, but the truth is if you don't take care of yourself, you can't take care of anyone else. This may sound strange, but laughter is the best way to fight through painful, stressful times. I'm not suggesting that your situation is something to laugh at(not at all!)just that you and your family find little moments to still smile and enjoy the silly things in life. When things got hard for my mom, we would watch comedy shows together when grandma was sleeping. Whenever my mom laughs it is contagious! It allowed her to just be in the moment and forget about her worries for just a little while. Your mom has to find her own way through this and the truth is she may never deal with this the way you would like her to. This is frustrating, I know because my grandma actually made things much harder on herself because of the way she looked at herself. She made up her mind that she couldn't do anything, so she didn't. Know matter what I said, it wasn't going to change it. If your mom feels sick constantly it is going to be hard for her to think positive. The best thing you can do for her is meet her "where she is at." I believe God is with all of us and when you don't know what else to do, pray for help. How long has your mom been going for radiation? Does she have any friends that come to see her? Before she was diagnosed with cancer, how active was she? Would you say that your mom is a positive or negative person? I only ask these questions to better understand your mom. I hope that my suggestions have helped in some way. There are many resources out there. The more you know the better you and your family will feel about your possibilities and options. The best thing you can do for your mom is to continue to love and support her and ask her what her needs are right now. You and your family will be in my thoughts and prayers. Let me know how you are doing. Much love


Name: cna
Location: indy
Date: 05/09/2009
Time: 08:08 AM

Comments

Have you and sis considered home health even a few days a week? I have worked ins this field and they could have someone come a few times a week maybe for dressing changes or even just to help with meals or baths


Name: grace bonavita
Location: 150 princeton ave ridley park pa
Date: 12/08/2009
Time: 05:18 AM

Comments

I am 65 and have a home,i live on a fixed income and my county tax is to high for me.I am deaf and can not work.Is there any way i can lower my tax. thank you grace bonavita


 







 

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