Head above water...

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dropsofpain
dropsofpain Member Posts: 1
edited March 2014 in Caregivers #1
Where to begin…. Well my step father has lung cancer …. My mother-in-law also has lung cancer … each with different types … with different treatments … it has been quite the experience learning about cancer … things that work with one don’t work with the other … I do the little things for them that I can … make food that they want … call every day that I cant be there in person … go to countless doctor appointments … I have spent more time at the hospitals than I ever thought possible … even most of the nurses knows me by name … I work a job I hate because they allow me to take off when I need to (even though I cant afford to take off) … they both have kids that could be doing some of the things I do … but they don’t do anything … and that makes me angry … I feel like I am the only one that lets them both know someone cares … except for my mom and father-in-law of course … I get so overwhelmed … I am at the point I want to scream at people and make them show some type of caring … compassion … but I know if you have to force it …. It loses meaning …. I don’t understand them (the children they gave birth to) and most of the time I don’t even try to … but I am tired … tired to the bone … and there is no end in sight … the water has gathered all around me … .and its getting hard to keep my head above the water … I can take care of them …… that is not the problem … I just don’t know how to take care of me in the process … I need conversation with someone that understands what I’m feeling … I’m afraid to say anything to anyone about how I feel here (at home) because I don’t want it to sound like I’m doing something I don’t want to do … I just want someone other than me to step up and do what they should be doing … my step father has 2 children … one older than I am and one younger …. And my mother-in-law has 2 girls and 2 boys all older than I am and one right next door to her that cant put her differences aside to be a loving daughter …. I’m 42 … anyway I guess what I’m trying to get out of posting this here is just letting out some of the emotions I have … I do what I do because I care and because it is the right thing to do … why am I the only one that understands that …. And how do I get them to just pick up the phone and call a couple of times a week and say hay mom or dad are you feeling ok … do you need anything … that’s all I want from them … any suggestions?
Thanks in advance
Drops

Comments

  • bangormom
    bangormom Member Posts: 58
    #2
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    Hi Drops,
    Wow you are an
    Hi Drops,

    Wow you are an amazing person. The amount you care is so great. I don't know how you could get the others involved, have you asked them? If not ask them. Unfortunatly some wont, I have been in your shoes, and it is rough. You came to the right place to vent you need to take time for yourself, because if you get sick and run down you wont be able to help at all. Are you or them invovled in a church? If you are and can't get any of the family members to help a lot of times people in church will pitch in so try that. I wish I could be of more help, but I really wanted to reply to your post I can feel your exhaustion. I am sure that others will reply and have some great suggestions for you, but if I can think of anything else I will post, in the mean time you are in my prayers.

    Maryann
  • zahalene
    zahalene Member Posts: 670
    #3
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    It sounds as if...
    the other family members aren't pitching in because they know you are there and you will handle it.
    Maybe you could try calling one of them about once a week and say, 'ummm...I hafta be outta town on the 10th (or whatever), and the folks are going to need someone to see to them that day'. Let them wonder where you hafta go, and give them a taste of what it would be like if you were not available at all. Maybe they will appreciate you more and also learn the ins and outs of caring for the folks so they can step in when and where needed.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #4
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    SOS
    First, I would like to point out that you do not mention your significant other, whom I must assume is still in the picture if you are caring for your mother-in-law. What is this person doing to help out?

    Second, I will recommend to you what I recommend to all caregivers, who are certainly the strongest, most selfless people in the world: to be a good caregiver you must take good care of the giver! Do not let yourself go any deeper into this mire you are describing. It will do no good for you or for the folks you are trying to help.

    Another respondent suggested hooking up with a church if they or you are affiliated with one, and that is a great idea. I would also suggest looking up your closest ACS chapter and asking there about any groups in the area that help with things like visiting and driving to appointments and that sort of thing. I know that sounds impersonal, but I didn't mind a bit when some of the moms from my old soccer teams arranged to come around on a schedule they developed to get me to and from radiation treatments.

    As for these other children of the two, I wish that I could help. Maybe Zahalene's idea is the best possible solution. Some people either don't get it or don't want to get it until they have to get it.

    Best wishes to you and to your family.

    Take care,

    Joe
  • akbetty
    akbetty Member Posts: 38
    #5
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    drops of pain
    I understand where you are coming from. Sometimes it can be so hard to force yourself to keep going. Being a caregiver these past two years has been the most exhausting thing I've ever done--mentally, physically, and emotionally. I agree one hundred percent with the other comments: you have got to find a way to take care of yourself (I'm still trying to figure out how to do this too--I know it's the right thing, you've got to keep trying until you find some small amount of respite for yourself). Zahalene had a good suggestion: you may have to just get on the phone and tell them their Dad or Mom needs a ride on next Wednesday or whatever. I know how frustrating it can be when other family members don't seem to care. Even though my husband doesn't have much time left, his brother refuses to let old resentments go. He's only called twice in two years. If there is a poor relationship there to begin with, it can't necessarily be forced just because someone has cancer. I wish it was otherwise, but some people will never be able to let go of their anger. The most important thing to remember is that you are not alone. Your feelings of pain, resentment, and exhaustion are all perfectly understandable. It sounds like your step-dad and mother-in-law are very lucky to have you in their lives. Please don't give up on taking care of yourself. My thoughts are with you.
  • mizray
    mizray Member Posts: 8
    #6
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    I understand completely
    When my husband was diagnosed, EVERYONE said how they would help with rides to treatments (3 1/2 hr daily trips for 2 months) and anything else they could do to help. I realized that it was just talk for a lot of our friends, but I really thought our 3 boys would help out (They are all over 21). And my middle son is married to a CNA, so I thought she might come and help teach me how to deal with the trach and feeding tube, etc.

    Well, my mother-in-law takes him to treatment once a week (And she backed out 15 minutes before it was time to leave last week)and that is the extent of the help I have received.

    Before my husband was diagnosed, I babysat my 2 grandchildren ALL THE TIME. But since, I have not been able to do it because my husband needs a lot of care and frankly I am too exhausted. Well, last week my daughter-in-law called (again) to say she needed a babysitter while she worked and I told her I just can't do it right now.

    I got this message from my son. "You are the biggest excuse piece of s*** of a human being I have ever seen. I have never seen a person use their husband's cancer as an excuse to not have to do anything. You don't work (my boss "laid me off" so I could take my husband to treatments and care for him and get an unemployment check to help financially), clean your house (the woman's group at our church came and cleaned our house a couple of times because they wanted to do something to help). All you do is sit on your fat **** all day.

    My husband heard the message and went ballistic. They seem to have forgotten everything we have done for them. I can't tell you the thousands of dollars we have given them and I never have said "no" when they have asked me to babysit (which was numerous times a week). And yet I need 2 1/2 months to get my husband through treatments, and they can't cut me a break. I once told him (before this happened) how I had a new respect for nurses and caregivers. That I was putting in 16-18 hours a day caring for his father. And he said, "If you think YOU have it bad, you should try being Della (his wife.) She does way more at the nursing home than you do." She averages 6-8 days a month of work.

    I don't know how I raised a boy with such little compassion. Him of all my kids. He has asthma which was very severe when he was little. Every year like clockwork he would spend a week in the hospital in the spring and another one in the fall. There were other shorter stays throughout the year, not to mention the hundreds of hours spent in the emergency room. And I stayed with him every minute. He didn't even like it when I would run home every once in a while to get a shower. I would have to promise that I would be back within 2 hours. There were kids there whose parents I hardly ever or never saw. The nurse told us that some parents drop the kid off and tell the nurses to call them when they were getting discharged. He said he was sure glad I wasn't a parent like that. So you would think that HE would realize that his father is sick and doesn't want to be left alone.

    Sorry to ramble. Needed to get it off my chest.

    Michele
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #7
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    mizray said:

    I understand completely
    When my husband was diagnosed, EVERYONE said how they would help with rides to treatments (3 1/2 hr daily trips for 2 months) and anything else they could do to help. I realized that it was just talk for a lot of our friends, but I really thought our 3 boys would help out (They are all over 21). And my middle son is married to a CNA, so I thought she might come and help teach me how to deal with the trach and feeding tube, etc.

    Well, my mother-in-law takes him to treatment once a week (And she backed out 15 minutes before it was time to leave last week)and that is the extent of the help I have received.

    Before my husband was diagnosed, I babysat my 2 grandchildren ALL THE TIME. But since, I have not been able to do it because my husband needs a lot of care and frankly I am too exhausted. Well, last week my daughter-in-law called (again) to say she needed a babysitter while she worked and I told her I just can't do it right now.

    I got this message from my son. "You are the biggest excuse piece of s*** of a human being I have ever seen. I have never seen a person use their husband's cancer as an excuse to not have to do anything. You don't work (my boss "laid me off" so I could take my husband to treatments and care for him and get an unemployment check to help financially), clean your house (the woman's group at our church came and cleaned our house a couple of times because they wanted to do something to help). All you do is sit on your fat **** all day.

    My husband heard the message and went ballistic. They seem to have forgotten everything we have done for them. I can't tell you the thousands of dollars we have given them and I never have said "no" when they have asked me to babysit (which was numerous times a week). And yet I need 2 1/2 months to get my husband through treatments, and they can't cut me a break. I once told him (before this happened) how I had a new respect for nurses and caregivers. That I was putting in 16-18 hours a day caring for his father. And he said, "If you think YOU have it bad, you should try being Della (his wife.) She does way more at the nursing home than you do." She averages 6-8 days a month of work.

    I don't know how I raised a boy with such little compassion. Him of all my kids. He has asthma which was very severe when he was little. Every year like clockwork he would spend a week in the hospital in the spring and another one in the fall. There were other shorter stays throughout the year, not to mention the hundreds of hours spent in the emergency room. And I stayed with him every minute. He didn't even like it when I would run home every once in a while to get a shower. I would have to promise that I would be back within 2 hours. There were kids there whose parents I hardly ever or never saw. The nurse told us that some parents drop the kid off and tell the nurses to call them when they were getting discharged. He said he was sure glad I wasn't a parent like that. So you would think that HE would realize that his father is sick and doesn't want to be left alone.

    Sorry to ramble. Needed to get it off my chest.

    Michele

    WOW
    Michele,

    My heart goes out to you! I to am a caregiver for my husband (colon cancer that has metastized) who seems to spend more time in the hospital than at home latey. For the most part my husband is able to look after himself, but he has a reocurring abscess that just does not want to go away, so every couple of weeks when he get really sick, it is back to the hospital to get it drained again.

    I absolutely know the feeling of being completely drained, emotionally wiped out, and not knowing where the strength is going to come from to carry on. I work full time, but my employer gives me the time off when ever it is required to take Bill to appointments, for surgeries, or whatever. And to think I was going to look for another job closer to home before Bill was dx'ed.

    As for your son..... I think I would have had a few choice words for him. Selfish, self centered to name a few. I wouldn't think you would have to make him understand that your husband is your number one priority, And since he figures his wife works so hard 6-8 days a month.... I don't understand why he can not wrap his head around the fact you are doing this 24/7. Without the help of our daughter, and the support of some friends, I am not sure I would have made it thru this journey so far.


    A caregivers lot is not always easy, so you must find some time for yourself, an outing with some friends, a walk by yourself. Perhaps it is time to ask the kids to step up to the plate and help you out.

    Michele, please come rant and rave whenever you need to, There are a lot of caring people on this site, who have been in the same shoes as you.

    My thoughts and prayers are with you both!


    (((((HUGS))))

    Sue
  • mizray
    mizray Member Posts: 8
    #8
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    CanadaSue said:

    WOW
    Michele,

    My heart goes out to you! I to am a caregiver for my husband (colon cancer that has metastized) who seems to spend more time in the hospital than at home latey. For the most part my husband is able to look after himself, but he has a reocurring abscess that just does not want to go away, so every couple of weeks when he get really sick, it is back to the hospital to get it drained again.

    I absolutely know the feeling of being completely drained, emotionally wiped out, and not knowing where the strength is going to come from to carry on. I work full time, but my employer gives me the time off when ever it is required to take Bill to appointments, for surgeries, or whatever. And to think I was going to look for another job closer to home before Bill was dx'ed.

    As for your son..... I think I would have had a few choice words for him. Selfish, self centered to name a few. I wouldn't think you would have to make him understand that your husband is your number one priority, And since he figures his wife works so hard 6-8 days a month.... I don't understand why he can not wrap his head around the fact you are doing this 24/7. Without the help of our daughter, and the support of some friends, I am not sure I would have made it thru this journey so far.


    A caregivers lot is not always easy, so you must find some time for yourself, an outing with some friends, a walk by yourself. Perhaps it is time to ask the kids to step up to the plate and help you out.

    Michele, please come rant and rave whenever you need to, There are a lot of caring people on this site, who have been in the same shoes as you.

    My thoughts and prayers are with you both!


    (((((HUGS))))

    Sue

    Thanks for your reply
    Thanks for your reply.

    I have been feeling guilty for not helping with the grandkids as much as I used to (they are 1 and 2 so it is a lot of work for my daughter-in-law) and like I said, I have always jumped when she has asked me to watch them (she likes to go shopping) and it gave her a break and gave me a chance to bond with my grandbabies.

    But I warned them in advance that with having to take my husband to his daily treatments (long trips) and having to care for the trach and feeding tube (the doctors said he should not be left alone for more than a few minutes at a time in case there were any issues such as the trach blocking, etc.) that I would not be able to babysit for a few months. But she continually asks and I hate to keep having to tell her that I just can't do it right now.

    It is nice to come here where there are people who understand. Everyone on here is very sympathetic and so non-judgmental. You can write that you had a little mental breakdown and got angry with your cancer patient, and nobody thinks you are an evil monger. They just tell you that it is normal. Which is very reassuring.

    This site has brought me much comfort and I wish I had found it sooner as I wouldn't have had to feel guilty about so many of my feelings for as long as I did.

    It must be very difficult to have to work on top of everything else. My husband's last treatment is June 5, so I will be going back to work the following week. Thankfully my job is 1/4 mile from the house, so I will be able to come home at lunch to feed, medicate and clean his trach. I will probably start out part time and go from there. My boss will also allow me time off for appointments and then again if he does have to have the surgery. We are hoping that won't be the case.

    Good Luck and God Bless with your husband's cancer. I hope everything turns out okay. And thank God for your daughter. I would guess that probably in general daughters are more likely to help in the caregiving of a sick parent. But maybe I am wrong. I just know I have 3 sons and none of them have done much (anything) to help. My eldest told me when we got home from the first surgery (biopsy and trach insertion) that they had all talked and realized they were going to have to help out however they could. But whenever I have asked for help (ae come help me clean the fish tank (my husband always was able to get the siphon going for me before the trach) they are just too busy. So I just stopped even bothering to ask for help.

    Hopefully everything works out for everyone here.

    Michele

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