A Caregiver's Life

slg
slg Member Posts: 200
I am posting this in this section because my husband suffers from Liver Cancer and I know that there are plenty of caregivers who read this particular section because they too have a loved one who suffers from Cancer!

I have participated and read this page since my husband was diagnosed in 2009. Most of the time it has been helpful to get other opinions, learn more about certain procedures first hand. I hope my posts have been helpful to other people too.

A Caregiver's life is a lonely place. No one really knows except for other caregivers. I am so very frustrated right now that I had to share my feelings with someone.

I am sick of people asking how my husband is, or how are you holding up, or hang in there, or Love and Prayers, and offering "if there's anything I can do just let me know"... I am tired of having to monitor the health care proviers because they don't really care about my husband the way I do.

Everytime I have tried to reach out to someone just to talk they are always too busy... I am tired of hearing how everyone is going on vacation or living their lives while ours has been in Limbo for almost two years. We can't plan anything because we never know if he will feel up to it or if we'll be back in the ER!!

This, by far, has been the hardest thing I have ever done in my life. To watch the man that I have loved and shared my life with since I was 17 years old is so very hard. I am so afraid he will not get to transplant and I will have to watch him deteriorate even more.

Anyone else feel like me?
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Comments

  • mswijiknyc
    mswijiknyc Member Posts: 421
    yup
    Did and still do.
  • cathy4889
    cathy4889 Member Posts: 10
    Sentiments
    My sentiments exactly, and I am less than one month into this nightmare.

    We don't have too many people offering their support or help, for various reasons. So I feel very alone. My husband / best friend has always been my sounding board but I don't want to bother him with my pain and frustations that it seems no one cares because he has too many other things on his mind (he starts his treatments today), so I am keeping things bottled up.

    Every once in awhile I explode, like I did yesterday, at work (because no one is talking to me) and I am met with little to no support from my boss.

    My only saving grace has been praying to God everyday, all day.

    Reading other posts like yours tells me that I am not alone and I just need to keep reaching out and reading these posts.
  • sue5749
    sue5749 Member Posts: 170
    I know 100%
    Hi, My husband has supurgottic cancer now for 10 months had 35 rad treatments and cemo treatments been in and out of hospital several times. A lot of setbacks. I feel so alone also. My life has changed, I have changed, my husband has changed, he hardly talks anymore. I'm lying in the bed right now, his daughter is visiting him. Don't know when or if things will get better. I have become a nurse, transporter and a bookkeeper. Before all this came to pass I did none of this. I have just learned how to give a IV infusion. I can't complain, I feel terrible if I do. I keep a lot inside. My sister called yesterday and I said I could not talk right now. I don't like the person that I have become! Sue
  • womack1424
    womack1424 Member Posts: 38
    NO DOUBT
    I completely understand your frustration,I have been a caregiver for 7 years now. My partner has stage 4 colon cancer. Although I have a great support system the questions of how she is doing sometimes drives me crazy, I just want to say she is dying!!!!!! I find that i have little patience with those that wine and complain about little ailments, i just want to tell them to suck it up. To watch the person you love slowly fade away is the most difficult thing anyone can go through, but we still have to take care of ourselves and live the life we were given to live as hard as it might be. I hope you find your peace.
  • palmyrafan
    palmyrafan Member Posts: 396
    Caregivers
    I am the patient (brain cancer) and my beloved husband is my caregiver. I do understand what you are going through.

    I try very hard to make sure that my husband takes time for himself and pursues his passion. We are best friends but I understand he needs his own space and I encourage him to golf, go to baseball games when people give him tickets, to still take his business trips, etc. That is very important to me. He, on the other hand, always wants to make sure that I am okay. So we have a compromise: when he travels on business, we gather up all the people who have offered their services. He notifies are neighbors and friends that he is leaving and they call or stop by to see how I am doing and if I need anything.

    We both are in therapy, singly and together. We see a lady who specializes in chronic and long-term illness and marriage counseling, so she knows her stuff. We've been seeing her for 9 years since we have lived here and it is great to know that we have a sounding board to make sure we aren't losing what's left of our minds.

    I also try to keep a "normal" schedule, or as normal as I can for me. While I don't work, my husband helps me with all the errands and cooking. We also run a business that requires face time so he wears many hats.

    I love my husband very much and I don't for one minute take for granted anything he does for me. He has made many sacrifices over the years (17 since diagnosis) and he knows he always has an "out" if he needs it. His "out" is that if he decides he just can't do this anymore, he has the right, no questions asked, to walk away from the marriage. I love him enough to let him go if that is what he truly wants. But he always says no, that he is in it for the long haul and what part of our marriage vows don't I think he understands.

    God Bless you for being a caregiver. Many times it seems like a thankless job, but I can assure you, even during our mood swings (including anger) we never take you for granted and we can never thank you enough for what you do for us.

    Blessings,
    Teresa
  • ketziah35
    ketziah35 Member Posts: 1,145
    Completely understand.

    Completely understand.
  • slg
    slg Member Posts: 200
    ketziah35 said:

    Completely understand.

    Completely understand.

    Just when I thought it couldn't get any worse, it did!
    Thank you fellow caregiver's for your replies. I have just had a day from "you know where". Paul is back in the hospital!! And I had to walk out of there tonight at 11pm after spending 3 hours in the ER waiting room, then 3 more hours an ER exam room (waiting for the room upstairs) and then 2 more hours for the hospitalist to come examine him before prescribing antiobiotics, after, for the third time, I had a nurse tell me that the hospalist had 6 other people to see before my husband and they were all sicker than he!!! Since when is Cancer not sick!!! That was the third person to have said that to me today and I lost it!!! I had to leave there before I started saying things that I shouldn't. It is now 12:15am Saturday and I have yet to get a call from the Hospitalist so I am assuming Paul will not get any medication today until the AM shift comes on...
    I want to cry but I can't. I do try to stay tough and strong but I am losing that battle quickly... I have no one to talk to at this hour of night and I know that one of you probably can relate...
    An to add to my frustration, the Radiologist from Kansas was supposed to have called today to let us know the results of the CT scan he ordered on Wednesday that I sent a CD of to him at my expense!!!
    Saturday:
    I couldn't sleep at first so got up and called to check on my husband, At 2 am Dr. still hadn't come to see him. Finally got to sleep but woke up at 6 so got up again and called to check on him. Dr. prescribed an antibiotic but didn't put the orders in until 4:30 then didn't order all his usual meds until 5:30 and didn't even include all of he meds!! I had to call the oncall Dr. and he said he would be seeing my husband this morning.
    I am always scared to leave him at the hospital overnight. No one cares about him the way I do and because he gets confused at times I always want to be there especially when the Doctor comes to see him.
    When is this nightmare going to end!!!
  • sue5749
    sue5749 Member Posts: 170
    slg said:

    Just when I thought it couldn't get any worse, it did!
    Thank you fellow caregiver's for your replies. I have just had a day from "you know where". Paul is back in the hospital!! And I had to walk out of there tonight at 11pm after spending 3 hours in the ER waiting room, then 3 more hours an ER exam room (waiting for the room upstairs) and then 2 more hours for the hospitalist to come examine him before prescribing antiobiotics, after, for the third time, I had a nurse tell me that the hospalist had 6 other people to see before my husband and they were all sicker than he!!! Since when is Cancer not sick!!! That was the third person to have said that to me today and I lost it!!! I had to leave there before I started saying things that I shouldn't. It is now 12:15am Saturday and I have yet to get a call from the Hospitalist so I am assuming Paul will not get any medication today until the AM shift comes on...
    I want to cry but I can't. I do try to stay tough and strong but I am losing that battle quickly... I have no one to talk to at this hour of night and I know that one of you probably can relate...
    An to add to my frustration, the Radiologist from Kansas was supposed to have called today to let us know the results of the CT scan he ordered on Wednesday that I sent a CD of to him at my expense!!!
    Saturday:
    I couldn't sleep at first so got up and called to check on my husband, At 2 am Dr. still hadn't come to see him. Finally got to sleep but woke up at 6 so got up again and called to check on him. Dr. prescribed an antibiotic but didn't put the orders in until 4:30 then didn't order all his usual meds until 5:30 and didn't even include all of he meds!! I had to call the oncall Dr. and he said he would be seeing my husband this morning.
    I am always scared to leave him at the hospital overnight. No one cares about him the way I do and because he gets confused at times I always want to be there especially when the Doctor comes to see him.
    When is this nightmare going to end!!!

    i so relate to you!
    Hi, I feel like this is me that you are talking about! My husband had been admitted to the ER 2 times in the last 2 weeks been through everything that you are going through! He is home now, I have learned how to give IV antibiotics for him 2 times daily. I told the nurse that I would not draw blood, that is where I draw the line!! I have learned to check his sugar and give him shots of insulin. I am getting on the job training as being a home nurse, lol. His sodium levels feel while he was in the hospitol, I didn't even know such a thing happens! I guess all we can do is, do what we can. I had it yesterday, told my husband I just had to go get my hair done! I put it off for so long. I was feeling terrible! So I just got in my Jeep, got my roots touched up went to the Mall and had lunch at Oga'. He called me while I was eating and said "when are you coming home? I said who is with you? He said his son. So I walked around the my Mall for awhile/ I just needed the few hours by myself. To do the things that I use to do. And let me tell you I felt really good! Us caregivers have to take some time for ourselves. I was not liking the person that I was becoming. So I know that I have to do it for myself as much for my husband. It has been a very hard and long 11 months. Sue
  • Faithful_Angel
    Faithful_Angel Member Posts: 86
    sue5749 said:

    i so relate to you!
    Hi, I feel like this is me that you are talking about! My husband had been admitted to the ER 2 times in the last 2 weeks been through everything that you are going through! He is home now, I have learned how to give IV antibiotics for him 2 times daily. I told the nurse that I would not draw blood, that is where I draw the line!! I have learned to check his sugar and give him shots of insulin. I am getting on the job training as being a home nurse, lol. His sodium levels feel while he was in the hospitol, I didn't even know such a thing happens! I guess all we can do is, do what we can. I had it yesterday, told my husband I just had to go get my hair done! I put it off for so long. I was feeling terrible! So I just got in my Jeep, got my roots touched up went to the Mall and had lunch at Oga'. He called me while I was eating and said "when are you coming home? I said who is with you? He said his son. So I walked around the my Mall for awhile/ I just needed the few hours by myself. To do the things that I use to do. And let me tell you I felt really good! Us caregivers have to take some time for ourselves. I was not liking the person that I was becoming. So I know that I have to do it for myself as much for my husband. It has been a very hard and long 11 months. Sue

    Caregivers need Caregivers too!
    I sit and read these posts and find myself shaking my head in agreement. But I am in a little different spot than most of you. Yes I'm the primary caregiver, who am I kidding I'm the sole caregiver. Although It's not my husband it's my father, while his wife my mother she is present but so not in the picture. She's dealing with this her own way. She works through this and then is pulling away while at home. I know it's not that she doesn't care she just can't deal with it.

    So it's me that Does all the caregiving duties. My dad was diagnosed with stage IV stomach cancer in feb 2010. Let me tell you this has been the longest and hardest 18 months of my life.Even though my brother lives less than 30miles away he hasn't been in the picture until as of late, and very minimally now. He calls about 3 times a week and speaks to me to get updates. Comes over for 15 mins once every two weeks.

    I myself took a break today to go see my sister in law in the hospital today *his wife* while I was there my brother started asking about certain "belongings" so I Had my suspicions proven right he's looking at material items. He states "when dad dies ....."

    This is just something I can't even deal with right now. As if I wasn't feeling alone enough in all this Now I feel even more alone.

    It is so important for us to know we have others that truly understand where we are at. And take a moment to do something for you. Today the something for me ironically was to go up and cry in my room.

    Hold strong and know you aren't alone in all this. We do feel the same.

    Many hugs
    ~Valerie
  • slg
    slg Member Posts: 200

    Caregivers need Caregivers too!
    I sit and read these posts and find myself shaking my head in agreement. But I am in a little different spot than most of you. Yes I'm the primary caregiver, who am I kidding I'm the sole caregiver. Although It's not my husband it's my father, while his wife my mother she is present but so not in the picture. She's dealing with this her own way. She works through this and then is pulling away while at home. I know it's not that she doesn't care she just can't deal with it.

    So it's me that Does all the caregiving duties. My dad was diagnosed with stage IV stomach cancer in feb 2010. Let me tell you this has been the longest and hardest 18 months of my life.Even though my brother lives less than 30miles away he hasn't been in the picture until as of late, and very minimally now. He calls about 3 times a week and speaks to me to get updates. Comes over for 15 mins once every two weeks.

    I myself took a break today to go see my sister in law in the hospital today *his wife* while I was there my brother started asking about certain "belongings" so I Had my suspicions proven right he's looking at material items. He states "when dad dies ....."

    This is just something I can't even deal with right now. As if I wasn't feeling alone enough in all this Now I feel even more alone.

    It is so important for us to know we have others that truly understand where we are at. And take a moment to do something for you. Today the something for me ironically was to go up and cry in my room.

    Hold strong and know you aren't alone in all this. We do feel the same.

    Many hugs
    ~Valerie

    Faithful Angel and Sue5749
    I am so glad that I finally posted on this site. Although we all have loved ones who suffer from different types of cancer we all seem to share the same sentiment and feelings.

    Faithful, I shook my head right back at you. We have two daughters. One who is right there with me everytime and the other who wants to be informed but keeps her distance and does not call on a regular basis but actually expects us to do the calling... and she is in the medical field!!!

    She does not ask how I am doing nor does she really want to interact with me at all. We really don't know what is her problem but I do not have the energy to deal with her right now when I have more important things to be concerned with.

    Sue5749, I only have my hair appointments as my time!!! I am so afraid to leave my husband alone and I wish that I had someone to sit with him and keep him company while I have MY time. I am afraid to leave him because that might take away from OUR time just in case he doesn't make it to transplant.

    We can all have as much support as needed but no one really understands unless they have been a caregiver themselves...
    Thank you all!!!
  • palmyrafan
    palmyrafan Member Posts: 396
    slg said:

    Just when I thought it couldn't get any worse, it did!
    Thank you fellow caregiver's for your replies. I have just had a day from "you know where". Paul is back in the hospital!! And I had to walk out of there tonight at 11pm after spending 3 hours in the ER waiting room, then 3 more hours an ER exam room (waiting for the room upstairs) and then 2 more hours for the hospitalist to come examine him before prescribing antiobiotics, after, for the third time, I had a nurse tell me that the hospalist had 6 other people to see before my husband and they were all sicker than he!!! Since when is Cancer not sick!!! That was the third person to have said that to me today and I lost it!!! I had to leave there before I started saying things that I shouldn't. It is now 12:15am Saturday and I have yet to get a call from the Hospitalist so I am assuming Paul will not get any medication today until the AM shift comes on...
    I want to cry but I can't. I do try to stay tough and strong but I am losing that battle quickly... I have no one to talk to at this hour of night and I know that one of you probably can relate...
    An to add to my frustration, the Radiologist from Kansas was supposed to have called today to let us know the results of the CT scan he ordered on Wednesday that I sent a CD of to him at my expense!!!
    Saturday:
    I couldn't sleep at first so got up and called to check on my husband, At 2 am Dr. still hadn't come to see him. Finally got to sleep but woke up at 6 so got up again and called to check on him. Dr. prescribed an antibiotic but didn't put the orders in until 4:30 then didn't order all his usual meds until 5:30 and didn't even include all of he meds!! I had to call the oncall Dr. and he said he would be seeing my husband this morning.
    I am always scared to leave him at the hospital overnight. No one cares about him the way I do and because he gets confused at times I always want to be there especially when the Doctor comes to see him.
    When is this nightmare going to end!!!

    Hospital Stays
    My husband always gets permission from the doctor to spend the night(s) at the hospital with me. He demands it. He tells them that he is their eyes, ears, feet and hands when they are occupied with someone else. If I need to get up and go to the bathroom (with an iv pole) in the middle of the night, he takes me, we don't bother the nurses. He questions why, at 2:00 a.m. when I am sound asleep, they feel the need to come in and wake me to give me a sleeping pill. If I am napping during the day and the all the docs (teaching hospital) are making their rounds, he tells them to put me on the end of their rounds so I can get an extra hour of sleep, etc. He runs for ice, water, jello, juice, food, etc. He double-checks the medications, tests, etc. to make sure they are what the doctor ordered.

    My husband says that no one takes better care of me than he does and he makes it his mission to stay with me in the hospital room (unless I'm in ICU) the entire length of my stay.

    If you are allowed, and want to do it, you might consider asking for permission to stay overnight.

    Teresa
  • NayPaul
    NayPaul Member Posts: 230 Member
    very articulate
    I think as she get sicker.... after a point it is me who suffers the most. To explain why she cannot be at a party, or why I still have hope or that things r getting better, etc.

    At the same time, I have learned that people don't know what to say... they r awestruck. They want to be helpful.

    You have my sympathy, support and understanding.

    As a postthought.... your post grabbed me. I have never posted here before..... thanks.
  • sue5749
    sue5749 Member Posts: 170
    slg said:

    Faithful Angel and Sue5749
    I am so glad that I finally posted on this site. Although we all have loved ones who suffer from different types of cancer we all seem to share the same sentiment and feelings.

    Faithful, I shook my head right back at you. We have two daughters. One who is right there with me everytime and the other who wants to be informed but keeps her distance and does not call on a regular basis but actually expects us to do the calling... and she is in the medical field!!!

    She does not ask how I am doing nor does she really want to interact with me at all. We really don't know what is her problem but I do not have the energy to deal with her right now when I have more important things to be concerned with.

    Sue5749, I only have my hair appointments as my time!!! I am so afraid to leave my husband alone and I wish that I had someone to sit with him and keep him company while I have MY time. I am afraid to leave him because that might take away from OUR time just in case he doesn't make it to transplant.

    We can all have as much support as needed but no one really understands unless they have been a caregiver themselves...
    Thank you all!!!

    sig
    My husband has had a liver transplant back in 1998 was pretty sick until a liver was found. And now dealing with the CANCER. This man has been through a lot! Now he is back in the hospital for a bacteria infection they can't seem to find where it is coming from, so they have him on several different antibiotics. So if I can get somebody from the family to come by and sit with him, just for a little while it helps.
  • slg
    slg Member Posts: 200
    NayPaul said:

    very articulate
    I think as she get sicker.... after a point it is me who suffers the most. To explain why she cannot be at a party, or why I still have hope or that things r getting better, etc.

    At the same time, I have learned that people don't know what to say... they r awestruck. They want to be helpful.

    You have my sympathy, support and understanding.

    As a postthought.... your post grabbed me. I have never posted here before..... thanks.

    Today marks one week my
    Today marks one week my husband has been in the hospital and it doesn't look like he's coming home this weekend. I need to vent and I think this is the only site that has people just like me who truly understand. I am sick of the "love and prayers posting on our C/B site" I just wish one person would take the initiative to do something nice for me without me having to ask. a few friends actually call or text or email everyday for updates and they do let me vent. I do have one friend who we met at our support group who has come to the hospital every day for the past three days. I know she means well, but she always seems to come during a mealtime hour and whenever I start to talk about something my husband is suffering from I hear a story from her what she went through ( she has a transplant in December). Now everytime something goes wrong or I have to help my husband with something he is apologizing to me. I have cried so much this week, more than I have in the past two years!! This is soo bad. I am soo scared of him not making it through this.. BTW, I have never been offered a casserole even though we have been trying to get weight back on my husband.
  • Faithful_Angel
    Faithful_Angel Member Posts: 86
    slg said:

    Today marks one week my
    Today marks one week my husband has been in the hospital and it doesn't look like he's coming home this weekend. I need to vent and I think this is the only site that has people just like me who truly understand. I am sick of the "love and prayers posting on our C/B site" I just wish one person would take the initiative to do something nice for me without me having to ask. a few friends actually call or text or email everyday for updates and they do let me vent. I do have one friend who we met at our support group who has come to the hospital every day for the past three days. I know she means well, but she always seems to come during a mealtime hour and whenever I start to talk about something my husband is suffering from I hear a story from her what she went through ( she has a transplant in December). Now everytime something goes wrong or I have to help my husband with something he is apologizing to me. I have cried so much this week, more than I have in the past two years!! This is soo bad. I am soo scared of him not making it through this.. BTW, I have never been offered a casserole even though we have been trying to get weight back on my husband.

    So True
    I am sitting here and I feel that I understand exactly what you are going through. It's so hard when you need someone to just hear you. I want to just grab ahold of that person sitting across from you and shake them and say "shut up and listen, this isn't about you." Sometimes we just need to be heard and validated .

    That person as I call them the "DoGooder" sometimes they just need to hear you, to understand what you need without being led by the hand and saying "I NEED THIS" sometimes just being a compassionate friend can pull the layers off one by one and understand what you need at that moment.

    Since my dad's diagnosis I have just wished instead of hearing if you need anything or if we can do anything just let us know. Why wouldn't someone come over with sandwiches and sit and talk or come over and offer to go to the grocery store or even come sit with my dad so I can take a shower without worrying that he'll need me in mid shower.

    So I can completely understand where you are coming from.

    Yesterday was our 2 week marking since the diagnosis of brain involvement. It's a tough run and peoples compassion would make a world of difference.

    Sending much love,

    Valerie
  • dearfoam
    dearfoam Member Posts: 82
    slg said:

    Today marks one week my
    Today marks one week my husband has been in the hospital and it doesn't look like he's coming home this weekend. I need to vent and I think this is the only site that has people just like me who truly understand. I am sick of the "love and prayers posting on our C/B site" I just wish one person would take the initiative to do something nice for me without me having to ask. a few friends actually call or text or email everyday for updates and they do let me vent. I do have one friend who we met at our support group who has come to the hospital every day for the past three days. I know she means well, but she always seems to come during a mealtime hour and whenever I start to talk about something my husband is suffering from I hear a story from her what she went through ( she has a transplant in December). Now everytime something goes wrong or I have to help my husband with something he is apologizing to me. I have cried so much this week, more than I have in the past two years!! This is soo bad. I am soo scared of him not making it through this.. BTW, I have never been offered a casserole even though we have been trying to get weight back on my husband.

    Ask for what you need
    I'm in a different role but am the caregiver for my dad. No other family is in town but my in laws and friends have helped out. I set up an email list of my dad's friends and our family and when things were first getting crazy, I just asked for things in the emails. Such as, can someone take dad to such and such place, or sit with him, etc. I asked for a roof repair, someone to help walk all the dogs while at the hospital, and even about food. Not all at once, but maybe by making a list of things you could use and putting it out there, you will get a better response from those don't realize your needs.
  • NayPaul
    NayPaul Member Posts: 230 Member
    dearfoam said:

    Ask for what you need
    I'm in a different role but am the caregiver for my dad. No other family is in town but my in laws and friends have helped out. I set up an email list of my dad's friends and our family and when things were first getting crazy, I just asked for things in the emails. Such as, can someone take dad to such and such place, or sit with him, etc. I asked for a roof repair, someone to help walk all the dogs while at the hospital, and even about food. Not all at once, but maybe by making a list of things you could use and putting it out there, you will get a better response from those don't realize your needs.

    Absolutely...
    Many people just do not know what we need/want. I was very surprised that one day my wife asked for help with school supplies and back to shool shopping for our kids. We had a budget and a list, and before you know it several mothers (sorry that it sounds sexist, but it was all mothers) called/emailed and was done. We have asked for help getting our kids to and from events, and people with kids at the same events have stepped up and made a schedule of who would get our kids.

    It has been VERY DIFFICULT for me to ask for help, even though I clearly have needed it. But when I do ask for specific things, almost always someone helps. We've even had people offer to bring meals when/if needed. My wife gave those names and numbers to her mother. And when we need things, she calls around and people offer to bring a meal every other week or somthing.

    Other people have helped watch the kids during chemo days, mow my yard, and so much more.

    I'm not sure how we have been so fortunate, but we have had people that we've never met send us giftcards to local restaurants or grocery stores etc. One time, I even received an envelope in the mail with five $100 bills and a note that said, "Please use this for your family in anyway you see fit." To this day, I have NO CLUE where it came from.

    I have learned so many lessons from this experience... and while I and my wife have done much volunteer work and given donations in the past, I hope I am able to "pay it forward" in time.

    I do know our experience has been atypical and much more positive than most...but to dearfoam's point, asking for what one needs is the surest way to get it.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    Hello slg and welcome to you
    Hello slg and welcome to you and your husband. I was a caregiver for my dad. He passed in March 2010 from esophageal cancer with mets to the liver. I have felt like you. It is normal to have these thoughts and feelings. Thank God that your husband can have a liver transplant. My mom and dad had just celebrated their 51st wedding anniversary in January 2010. Liver cancer is one of the worst. It is so hard to watch your loved one be in such constant pain. It is so hard to watch your loved one suffer with side effects from the chemo and pain meds. It is so hard to watch your loved ones quality of life disappear. You both have a bright side to look to...his transplant! Live for that each and every day. Thank God for that. Keep us posted, we will keep you both in our prayers.
    Tina in Va
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member

    Caregivers need Caregivers too!
    I sit and read these posts and find myself shaking my head in agreement. But I am in a little different spot than most of you. Yes I'm the primary caregiver, who am I kidding I'm the sole caregiver. Although It's not my husband it's my father, while his wife my mother she is present but so not in the picture. She's dealing with this her own way. She works through this and then is pulling away while at home. I know it's not that she doesn't care she just can't deal with it.

    So it's me that Does all the caregiving duties. My dad was diagnosed with stage IV stomach cancer in feb 2010. Let me tell you this has been the longest and hardest 18 months of my life.Even though my brother lives less than 30miles away he hasn't been in the picture until as of late, and very minimally now. He calls about 3 times a week and speaks to me to get updates. Comes over for 15 mins once every two weeks.

    I myself took a break today to go see my sister in law in the hospital today *his wife* while I was there my brother started asking about certain "belongings" so I Had my suspicions proven right he's looking at material items. He states "when dad dies ....."

    This is just something I can't even deal with right now. As if I wasn't feeling alone enough in all this Now I feel even more alone.

    It is so important for us to know we have others that truly understand where we are at. And take a moment to do something for you. Today the something for me ironically was to go up and cry in my room.

    Hold strong and know you aren't alone in all this. We do feel the same.

    Many hugs
    ~Valerie

    Thinking of You
    Hello FaithfulAngel
    I was in the same boat as you almost 2 yrs ago March. My mom was the main caregiver to my dad, I was second. My brother....lives 8 hours away in NJ. My dad had been begging him to come see him for months. Do you know when my brother finally showed up? The day of the night my dad passed away. He saw my dad at his worst. My dad was so doped up on morphine he did not know who we were! Now...had he come months earlier like dad wanted him to....he would have seen a much different dad. It is soo sad. He also pulled some more crap when our mom had to have open heart surgery this past December. He did not come to be with me. I can not come....too much snow...what if it snows more? Oh please....what if our mom dies??? huh??? have you even thought of that??? I am so mad. I will never forgive him for doing this to our parents. Thank God for your dad that he does have his Faithful Angel. Keep in touch. We are thinking and praying for all of you.
    Tina in Va
  • jimwins
    jimwins Member Posts: 2,107
    NayPaul said:

    Absolutely...
    Many people just do not know what we need/want. I was very surprised that one day my wife asked for help with school supplies and back to shool shopping for our kids. We had a budget and a list, and before you know it several mothers (sorry that it sounds sexist, but it was all mothers) called/emailed and was done. We have asked for help getting our kids to and from events, and people with kids at the same events have stepped up and made a schedule of who would get our kids.

    It has been VERY DIFFICULT for me to ask for help, even though I clearly have needed it. But when I do ask for specific things, almost always someone helps. We've even had people offer to bring meals when/if needed. My wife gave those names and numbers to her mother. And when we need things, she calls around and people offer to bring a meal every other week or somthing.

    Other people have helped watch the kids during chemo days, mow my yard, and so much more.

    I'm not sure how we have been so fortunate, but we have had people that we've never met send us giftcards to local restaurants or grocery stores etc. One time, I even received an envelope in the mail with five $100 bills and a note that said, "Please use this for your family in anyway you see fit." To this day, I have NO CLUE where it came from.

    I have learned so many lessons from this experience... and while I and my wife have done much volunteer work and given donations in the past, I hope I am able to "pay it forward" in time.

    I do know our experience has been atypical and much more positive than most...but to dearfoam's point, asking for what one needs is the surest way to get it.

    Thanks for sharing
    Thank you NayPaul for sharing.

    It just reminds me there are truly good and unselfish people in the world.
    Of course I'm seeing that here on this site too.

    Warm and positive thoughts to you, your wife and family.

    Keep sharing!