New to the forum, but 8 years so far as a caregiver

stevie58
stevie58 Member Posts: 9
in Caregivers #1

My wife of 37 years was diagnosed with cancer of the appendix 8 years ago. It has been a battle for sure but she is a tough one. She just spent the month of May in the hospital getting two colostomy bags. We have been home less than two weeks and still just getting used to things. I have become suzie homemaker. Doing just about everything besides helping her with getting up and down and dumping the bags etc. We have a PT nurse come in twice a week to help her exercise and monitor her progress.

Her legs are weak so I put a strap on her and hold her up while she walks a few times a day. She is afraid of falling as she has already. Getting her to eat is difficult. She is trying but often gets nausea. We also have a RN that comes by once a week to see how things are going. It was easier for the first years but now it has become 24/7 care and does wear on me a bit. I am trying to be the strong one and trying to encourage her to push herself a little harder. If I can get her back on her feet and eating better I think she will be fine for awhile. At least until they start chemo again. Chemo kicks the crap out of her.

 

 Being a caregiver is one of the hardest things in life a person can do. I fully understand being at your wits end and struggling to survive yourself. Your spouse is the one dying slowly, but nobody knows that inside, you are dying also. You just can't show it. You can't complain or quit or run away from it. You have to be the strong one. You don't get to curl up in a corner and cry.

Our lives revolve around our next Dr appt. I could do a blog on different hospitals here in Washington. We have been to so many and so many specialists. We retired early mainly because of the cancer and because you really don't know how much time you have. Thank God we have really good health insurance.

 I guess I am here to vent and maybe complain. And maybe kind words for others who are in the same boat.

Comments

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #2
    Your wife

    I am sorry to hear about your wife but I definitely understand where you are coming from.  I have been the sole caregiver for my husband since we started this journey 5 years ago.  First couple of years wasn't bad and we thought he had it beat.  Now he is in the process of slowly dying and it is very hard.  People who are not caregivers just don't understand and that includes your children.

    As a caregiver, I have to do everything for my husband.  He says I'm mad and hateful.  Yes at times I am but not at him, but at the whole situation.  He has been a great husband for 53 years and even took care of my mother during her last two years of life (he was retired and I wasn't).  Not many son-in-laws would do what he did.  

    He has been on in-home hospice for quite sometime.  There are times when our nurse says I need to put him in-patient hospice so I can get some rest but I can't do it.  He doesn't want anyone, even including our children, helping him but me.  And that makes it hard.  All we can do as caregivers is to try our best to help them.  

    Be sure your take care of yourself too because during this journey you are important too.

    Wishing you both peace and comfort -- Sharon

  • stevie58
    stevie58 Member Posts: 9
    #3
    Ladylacy said:

    Your wife

    I am sorry to hear about your wife but I definitely understand where you are coming from.  I have been the sole caregiver for my husband since we started this journey 5 years ago.  First couple of years wasn't bad and we thought he had it beat.  Now he is in the process of slowly dying and it is very hard.  People who are not caregivers just don't understand and that includes your children.

    As a caregiver, I have to do everything for my husband.  He says I'm mad and hateful.  Yes at times I am but not at him, but at the whole situation.  He has been a great husband for 53 years and even took care of my mother during her last two years of life (he was retired and I wasn't).  Not many son-in-laws would do what he did.  

    He has been on in-home hospice for quite sometime.  There are times when our nurse says I need to put him in-patient hospice so I can get some rest but I can't do it.  He doesn't want anyone, even including our children, helping him but me.  And that makes it hard.  All we can do as caregivers is to try our best to help them.  

    Be sure your take care of yourself too because during this journey you are important too.

    Wishing you both peace and comfort -- Sharon

    These forums are full of

    These forums are full of tragic stories. We are all living one of sorts. I know the anger and frustration.

     

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #4
    stevie58 said:

    These forums are full of

    These forums are full of tragic stories. We are all living one of sorts. I know the anger and frustration.

     

    everybody

    What you said is true: everybody is trying to swallow something that won't go down.

    Caregiver for five years for husband of 37 years who survived the cancer but whose body was devastated by the treatment.  It is a good week if we don't see a doctor.

    It is a tough road for all.

     

  • Terri Sue
    Terri Sue Member Posts: 22
    #5
    stevie58 said:

    These forums are full of

    These forums are full of tragic stories. We are all living one of sorts. I know the anger and frustration.

     

    It's GD Greek Tragedy!

    You are so correct when you have stated something to the fact that non-caregivers don't understand.  When my husband aplogizes to be about our situation with his health I usually try to respond with, "It's for better or worse as we vowed.  Things will change and be better!"  I'm not sure who I am really trying to convince - him or myself.  All I know is that I have survived my upbringing which was total chaos so maybe I can survive this as a caregiver.  It's a hard job and I'm proud of you for hanging in there.  I'm sure you are doing a great job and someday something will change whether we like it or not.

  • angryx's5
    angryx's5 Member Posts: 2
    #6
    stevie58 said:

    These forums are full of

    These forums are full of tragic stories. We are all living one of sorts. I know the anger and frustration.

     

    anger

    Thanks for the validation, perhpas just coming into more feelings of being angry, along with the great sadness of the changes, the loss, the thing of "moving on", not sure at all what all of that means today.

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