I wouldn't automatically assume that it has anything to do with rejection. Is there any one person you can talk to about coordinating the support you need? If there have been several people involved, it may well be that each of them is assuming that somebody else is taking care of things, especially if you have not been communicating the specifics of what you need all along. One person that could act as coordinator on your behalf could be very helpful to you and your family of caregivers.
Anaplastic Large Cell Lymphoma Questions
What do you do when your caregivers stop giving you care, even though you are still going through Chemotherapy?
Asked by Bashiemn on Friday, March 9, 2012
What do you do when your caregivers stop giving you care, even though you are still going through Chemotherapy?
I've noticed that the shock of my diagnosis has worn off. My family has stopped offering to help with things, even though I'm only 1/2 way through my Chemotherapy treatment. I'm not sure that I'm emotionally strong enough to take the rejection if I point out to people that they stopped being there for me even though I still need them (i.e. rides to Chemotherapy, emotionally). Do I give up and call the ACS for help? Has anyone experienced this feeling of "aloneness" and rejection? What have you done? What has worked?
18 Answers from the Community
It's a feeling of rejection and aloneness - not that other people are rejecting me. I have a care calendar, which I put my appointments on and hope that people will sign up. Unfortunately, I don't know what to do if the final hour comes and I don't have a way to get to chemo. I've also asked my husband to help coordinate stuff, but he won't (he's just not the kind of person who is comfortable doing that). Since he just started a new position and he's working extra hours, it's hard for me to ask him to take time off work to take me to appointments. Plus, he's never actually offered either.
I think that it's difficult for me to ask for help - always has been. I feel like if people aren't actually offering to help, then they don't want to help. Especially since the people I'm thinking should be helping (my sisters, for example) should know that I'm not the kind to ask for help.
I guess it's hardest because my sister and step sister and I have lost all of our parents/step parents, 3 of the 4 to cancer. I thought they would be a little more helpful or a little more "there for me".
I understand. I too have a problem with asking for help, but this experience has taught me that I need to get over it. I've also learned that most people don't really have a good idea of the kind of help cancer patients need. They don't have the frame of reference for the day to day things that we need help with. So we have to be very specific and not assume they will some how know. And I think a lot of people assume that if you are not asking for specific help, they don't want to intrude or play 20 questions tying to figure it out. By specific, I mean asking someone if they can take you here or there on such and such a date and time and that it will require X amount of time. I get that you want them to be "there for you", but you need to first know in your own mind what that means to you, and then communicate that very specifically to them. Having your appointments on a calendar is fine, but merely hoping somebody will look it at frequently and ask if you need a ride for a particular one is not. And by all means, don't wait until the 11th hour hoping. You need to maintain an ongoing dialog with your husband and sisters so that you know right after an appointment is made whether or not some one can take you to it. If they can't, then by all means contact one of the many organizations that provide rides to medical appointments. In fact, that may be a better route to go anyway. Then your husband and sisters can provide other kinds of support that may not be as readily available.
Thanks for the advice. Yes, I will reach out to those organizations for rides to my appointments.
You are right, i shouldn't expect them to know what I want or need. It's my own fault for expecting of others. The truth is, I shouldn't really expect anything of anyone. I have to learn how to ask for what I need help with.
Thanks for the link Davw. I will be calling as soon as I have my appointments set up. I think they ask for a weeks notice and i dont always get that much notice on the actual times of my chemo appointments, but i'll definitely call if i dont get a response when i swallow my nerve and make it known that i still ned help.
I was told by my best friend that since i LOOK ok. Healthy, etc... people forget that i'm not able to do everything. I guess I just need to remind people. I started today with my husband. It went ok, hopefully he responds.
I can emphasize with you perfectly where those that I had hoped would give me support entirely disappeared during my treatment. Others, when I found out I had cancer would quickly change the subject and then would avoid me. But I found out that others, when they found out I had cancer were always providing support. I decided after going through this twice now that it is better not to hide what you are going through. I have found that it helps people to grow as I share my experiences both good and bad so that others can learn. There are a lot of blessings that come to us if we look of them as we go though this experience. I personally think that I have grown enormously from this experience. Many individuals, who have never had cancer, have no idea how to react or give support and others get so wrapped up in their own lives that they forget that you may need support. It is okay to kindly remind them and ask for help.
People are funny. When the "newness" wore off, they just go on with their lives. My son and wife have totally abandoned me. Very hurtful but I have a life to fight for so I keep on.
You could call them a couple of times to ask for help, which is fine to do. If they don't respond or help you then go to ACS or other volunteer groups for help.
I have had the good fortune to not get sick from chemo and have maintained my looks (other than hair loss and eyelashes, brows) so people really think...Oh, she's doing great...I get how pretty I still look, all the time. Even my dr. told me...I didn't expect you to look like this. He was new to me and had read all the things wrong with me (tons) and he expected some frail, sickly old woman...did I fool him. LOL...
But you have to take care of you and people do and will hurt us, they just don't care what we are going through. Know you are fighting for your life and you want to win the fight. Don't let others unsympathetic ways get you down and it's hard but we are survivors for a reason.
Wow, as a caretaker, it breaks my heart to read of so many patience being abandoned by friends and family. I have been home with Mark since he got diagnosed and, by God's grace, we are surviving while I SLOWLY look for a job to return to once he is done with his treatments. He has gotten 7 out of 12 of his treatments and I hope to try and be home until the last one. He is doing MUCH better since I've been home. I'm at every appointment, every blood test, every chemo session (though he sometimes doesn't want me to stay so I use that time to run errands). I do admit that people stopped visiting and coming around other than family from time to time. But it's been nice because we can go about our normal lives without having to worry about people randomly dropping by. Thank you for the ACS link. I have forwarded to my husband and I so that, just in case, I have to go back to work I will call and make arrangements. It's my husbands job to take care of him and get better. I will handle the rest to be best of my ability. Blessings to all of you and I hope and pray that you will have someone from your local church or organization that can come and help. I would if I lived near you guys. :)
Jumping in a little late, but what the heck :D
I know it can be hard to ask for help. I think we all have that to varying degrees, some more than others and all for different reasons. The bottom line, we don't like to ask for help because it may make us look "needy", not to mention, we don't want to interfere with someone else's busy life/schedule. If that's how we feel, then we have to accept the responsibility that goes with feeling like that... if we can't take the time to ask when we need help, then how can we expect these busy people in our lives to read our minds and know when we need help vs when we don't?
For instance... right this very minute... perhaps your sister or stepsister needs help. Do you know this? Can you feel it? Can you read her mind and know exactly what she may be struggling with right this minute and how you can help? No, she is not asking for help and as far as you know, she's looking great and doesn't appear to be looking ill, or stressed or in dire need of help. Hmmm... maybe she doesn't need help at all and this is just a hypothetical situation. But do you know... or should you be expected to know?
Of course not! If something has come up and one of them is in dire need of help, then you are totally in the right to expect them to come to you, tell you what the problem is, and ask for help. It's at that time that you could jump right in and offer to help, or explain that because of your treatments/how you are feeling, that you can only give help on your "good days", or you could say you really wish you could help but at this time, you can't. That's called communication but for it to work, both parties have to be willing to talk to each other.
You need to draw up a plan where you put down exactly what kind of help/support it is you are needing/looking for. Is it important that family members/close friends fill this role, or is it more that you just need someone who is sympathetic and understanding so you don't have to do it all on your own? Once you have figured this out, then you can make plans of who you are going to ask to do what, so in the end you are totally comfortable with the plan. If there are volunteer drivers/homecare workers, etc. in your area, see what you can arrange with them. Then where there are still appts. needing filling, arrange with your sisters/family/friends, but explain to them why it's important to you that they are in your life and on your care team.
Most people would LOVE to help and know that what they are doing is important to the patient. The worst feeling in the world is to feel helpless, like you don't have a clue what to do to help so you feel useless. It can get so bad when you don't get feedback that you end up feeling you are being more of a nuisance than a helpful caregiver, so you stay away. Now this is where the patient may feel rejected... no one is coming around, no one is offering to help anymore... when it's quite possible the lack of communication and showing how much they mean to the patient has actually made them feel useless and not wanted.
It goes two ways. Whereas you may have these feelings that no one cares... it's possible your caregivers are going through something very similar... that you don't care whether they are around or not and you seem totally capable of looking after yourself because you keep telling them you are doing fine, so they feel inadequate and helpless with nothing to do.
I can't stress enough... COMMUNICATION is soooo important between patient and caregiver; patient and doctors. Although technology has come such a long way, man still hasn't found a way where humans can read other humans minds ;)
I guess most of us have similar experiences. I found my house full of people from the day of my diagnosis up until the middle of my pre-surgery chemo. They even created "Team Karen" so that all my needs would be met. After that it became hit and miss. Sometimes there was no one to help. My mom is 87 and the whole thing was overwhelming for her. She could not even stay in my room very long. When I was well enough, I took care of myself but of course there were times when I was not able to get out of bed. Once when I felt particularily abandoned I asked my cousin, "What happened to Team Karen? I began to cry and said, "There is no Team Karen, I am Team Karen." We laughed about that later; I was so dramatic. My cousin was the main person who began to sit with me everyday when I was ill. She kept saying she didn't want to bother me and I finally told her, I am happy when you are here and I hate when you leave. I so wanted someone to lean on and although I had many wonderful people looking in on me I guess I still felt alone.
But I don't have ill feelings toward anyone. I understand it is a difficult thing to deal with. I have family members who never came to see me at all. Some very good friends visited only a couple of times because I believe it was something they could not handle. I was in treatment for seven months.
I hope I don't have to go through this again but if I do I think I will ask for help instead of expecting people to automatically step up. I might have to pay someone to come in for a couple of hours to cook or handle other things I cannot do for myself.
Communication is probably the answer but I agree that it is hard for me to ask. I want people to just know what I need. Sometimes that is unrealistic.
You have gotten such good advice that I have little to add. However, what CherylHutch has just written hits the nail on the head. First off, all of us have a deep seated need to avoid any unpleasant situations. As we get older we learn how to "give" in circumstances which we may find upsetting. Not everyone can do this and if you want something from someone you just have to ask and keep asking. You have two things going on: First, many people just don't want to help unless they are made to look bad, so they help for a while which eases their conscience and they are able to say to themselves and the world, "Look I really helped her"; Second, you have cancer, most people are afraid of the word much less coming face to face with the reality of their own death. For these reasons people shy aware from being reminded of their own mortality.
YOU ARE NOT ALONE _THIS HAPPENS IN ONE FORM OR ANOTHER TO ALL OF US.
I tell you a short story in the hopes that you will realize of often this happens and you never hear about it. For the past 39 years I have been a very successful professional photographer, doing Bar Mitzvahs, Weddings, and a lot of work with family and kids. Maybe at the time I was diagnosed I had 60 - 70 people who were florists, DJ's, band leaders, hotel coordinators, caterers, promoters, etc. I had my prostate removed in January 2003 and kept it secret, recovered and went on with my business. One year later, a friend of a friend of a friend told someone of my condition, they were in CA. on vacation, I live near Chicago, IL. Within 3 months the business phone stopped ringing. Many people would not return my phone calls and my business dropped by 80%. One of my really good clients told me that one of my 30+ years friend, who was a top coordinator and who I worked with 15-18 times a year had just told her, "Well you know Michael is a really great photographer but he has cancer and he may to be around for your daughter's wedding next year". She hired me anyway but my business never recovered. SO, YOU ARE NOT ALONE IN THIS FIGHT. The general public does not want to hear about your cancer. They would just as soon you go away with all your problems It is not you, it is them. An earlier post mentioned making a list of what you need and when you need it and let people know when you need there help. THIS IS GOOD ADVICE!! I really feel for you and I know you will find family and friends who will come to your aid but you have "to put it in their face" and then let them know your progress and what you will need in the future. I don't know if any of this will help you but in reading all the posts you got some excellent advice and if nothing else realize that we all, in life deal with the same difficulties when we ask for help whether we have cancer or a broken leg(another one of my stories, but enough already :-) Best of everything you deserve and you deserve a lot!
On this same subject I want to tell all of you who have had the experience of help and caring one week and all alone for the rest of the weeks.
I did not have a stellar relationship with my mother. She became the evil XXX to the family and especially to my dad once she was diagnosed with MS in the early 60's. I played the "good son" but my dad did all the care-taking and putting up with her rants. I sat with him several times after one of my mom's rants and he had tears in his eyes and I had only seen that once when his mom died. I4 years into the MS my dad was diagnosed with mesothelioma, they gave him 3 months max and that was back in 1973. He went for "alternate" treatment besides the mustard gas he got from Mayo. He made it just over a year! For those last 6 months of my dad's life, I pitched in and was there for her when my dad was away for treatment. My dad had hired a caretaker to help my mom around while he was at work. I had a full time job, a wife and a 4 yr. old daughter. Hard to splice time to go and help mom and where were all her friends of 30+ years that she played bridge with all the time? Dad died and mom went back to FL with 2 caretakers for three months. Dad had come back to Chicago for all his treatments and put the house up for sale just before he died. One day the call that I knew would come, came. The caretakers(one a physical therapist and the other a cook who had been with my dad for 20 years) called and said, "We can't take it anymore, she is insulting, impossible and evil". Yeah, so what else is new. Well, I offered to pay them more as I was the executor of my Dad's estate along with his long time friend and lawyer. Well, the dust settled for another 3 months and then came the call I expected. "We quit, no amount of money is worth what we have to put with with with HER!". I brought my mom back from FL and was able to get her into a first class nursing home and if she didn't live more than about 9 years all would work out well. Since I am the one making all the decisions I had the rest of the family saying, " You should take her into your home and get another caregiver". My answer was, "Why don't you take her into your home if you think I doing such a terrible thing?" Taking about taking the wind out of the family sail!!!!!! So mom is in the nursing home and all is well. I call all her old friends who did not follow my parents to Florida and told them mom is back and in a wonderful place (it really was a great place) just minutes from all of you and she can have visitors from 9AM until 8PM. My plan was to go once or twice a week and let the rest of the family and friends pick up the slack. WRONG. The family that lived near by were cousins and they maybe came once or twice. Now hear comes something that really stunned me and that takes a lot. Five of her closest friends came to visit her in a group three weeks after she was in the nursing home. She had played bridge, gone to movies, gone on trips, went to parties with these five women for over 30 years. The stayed in the room visiting for about 45 min. They all lived within 10 minutes of the home. I got a phone call the next day and was told, "We can't stand seeing her like that", they never came back and my mom went through XXX for another 5 1/2 yrs before she died.
I said to myself, well, you hate your mom but she seems to love me and listen to me. I went there everyday for 3 years and fed here when possible. For the last 2 1/2 yrs. I came three times a week. No one should be left alone to die and I said to self, "If I were in her position I would want someone to care about me besides the staff, who did an excellent job. Sometimes mom was asleep and I was already their so I got to know some of the other patients in the home. I was amazed to find, alert, nice old ladies who had no one too come and see them. Most had son's and daughter's who live within 5 or 10 miles of the home. I was appalled!!! But that is life.m and many people do not want to see or think about sick people. I found out that that is the way it is. When you need help you will have to ask or else you may not get anything. I never got over the five friends who deserted mom. End of story.
All of your responses are so very much appreciated.
I think it's interesting that people say "I just don't want to bother you"...as mysecondchance stated. I've had people say this too when they call me. I always mention that it's not bothering me! I should start mentioning that people calling or stopping by is the highlight of my day.
I do have to mention that I updated my Caring Bridge site today and commented that I will be updating my carecalendar site with things that I need, so people who are still interested in helping out can check there. This is the "rides" thing.
As for help with other things - I want to comment that my sister and her son live with us (rent free) since last summer. Since I was diagnosed in January and started treatment, she took me to a couple of my appointments right in the beginning, but then king of stopped. One day when I mentioned when my wednesday chemo was (the day she had been taking me because she has it off) she snapped at me because the time didn't work for her. I guess I stopped mentioning it to her when that happened and figured if she wanted to help she would look on my calendar or ask me.
Anyways, she lives with us, but I feel she has been avoiding me. Not being home much, rarely being in the same room as me. Never asking how things are going or how I am doing. She tried to cook once for me a few weeks ago, but accidentally burnt the food, my nausea kicked in at the smell and I couldn't eat. I don't know if she was offended or what but she didn't offer to help with meals since.
Well, today I was asking my husband if he would clean the bathroom this weekend (that's once area i'm not comfortable trying to clean right now while I'm going through chemo). She was downstairs (I didn't even know she was home) and she kindly yelled up that she would clean the bathroom tomorrow. It's a bummer I had to ask - but I am appreciative that she offered to do it...
Sometimes it is very hard to ask for help. But it's okay to ask. It's okay for us to admit we need help. All of your words of encouragement and support are exactly what this message board is for. Thank you!
I understand what you mean. Only my husband youngest daughter and I live in this state. Now 16 months into treatments, I seem to be pretty much on my own. My husband does go to any appt I have and my daughter will usually meet us when we drive up for chemo (it's near the town she lives in) since she works at night. This gives us time to visit. But as long as I am able to do 'anything', my hubby just kind of kicks back. The newness of the illness has definitely worn off. I have never had assistance from outsie of the household. I guess when I get to the point where I'm not"looking so good", or am really so down that I just can't do things, I'll start requesting the assistance of those that have said whenever you need anything, just call me...
How are you doing nancyjac? I experienced the lows when my chemo was over and I wanted to get back to living. I'm cancer free from stage 4 colon cancer. To beat the emotional stress, I dove deeper into my spiritual practices. Get out into nature as much as possible
My house is a disaster, but I make it to work everyday.
One thing I have learned as I've gone through chemo is that it is OK to ask for help. Not only is it OK, but I would recommend it. I'm a "do it myself" kindof gal and being diagnosed with cancer has given me new perspective. Try expanding your caregiver group as well beyond family. A lot of times people don't know what to say or how to act. If you tell them what you want and/or need, it can help give people who want to help a specific thing to do. Caringbridge.org also has the ability for planning where your caregivers can sign up for tasks you need assistance with.
You and the people around you will have ups and downs as you go through this process. Be selfish, it is OK. Don't worry if someone can't assist. Ask the next person. Sending strength vibes your way.