Scared and Frustrated...

Chrisswife
Chrisswife Member Posts: 50
edited March 2014 in Colorectal Cancer #1
Hi all, I've been absentee for awhile but I read posts here semi-regularly. My story briefly is that my (then) husband Chris was dx w/ stage II Rectal ca in April '03, chemo/rads/surgery ensued. He prevailed except for our marriage which deteteriorated in fall of '05.
Speaking of which, I need a new tag name, chrisswife seems self serving but I'm semi-known by this one and besides, chrisssexwife sounds kind of **** LOL:)
But I digress...
Chris was dx stage IV last July with spine mets; I moved him in with our daughter and me soon after.
It's been real tough; he's inoperable because the tumor is in a previously rediated area and Folfox 4 + Cyberknife didn't work. His pain is chronic and intense. He's been bed ridden in a hospital bed since the first of the year, he hasn't walked more than a few steps since last fall.
He had a pain pump surgically implanted last month and we were so damn hopeful that he would get some relief. Not so much. He's been in and out of the ER with persistent fevers and pain ever since. They now have determined he has an abscess in his left butt; it's being drained now. Last night his left leg swelled up like a ballon indicating blood clots, and he has MRSA (staph).
Now he's in an isolation room in the onc ward at Evergreen in Kirkland, Wa. We have to gown/glove up to see him, he's feverish/nauseous/listless and still in a great deal of pain. He's very much looking forward to coming home but I'm really nervous about it. I know that I'm no longer qualified to provide the type of care that he needs at this point but I'm what he wants. His mom calls me Diana Ross and the rest of the family are only the Supremes. I'm the be-all-end-all for him. I care for him so deeply and I'm doing my best but I see the toll this is taking on our 9 y/o daughter as well as myself. I have no choice but to work F/T, Chris collects SSI but it's nowhere near enough to live on. I don't know what to do; once stable he can come home but I can't afford the type of care that he really needs and I don't know what to do for him. Our daughter is suffering and agry with ME of course (what is it with girls and moms?!?)
I'm venting I know, just really struggling now and I don't see an end in sight, rock bottom just keeps getting rock bottomer...

Comments

  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #2
    Hi. I can certainly understand your anxiety at bringing him back home. It's tough and scary to be a "caregiver" in a serious situation . I Had a similar situation with my mom years ago. Have you checked with the hospital and local & state agencies about getting a health aide to assist? Are there any cancer support groups in your area who can give recommendations or suggestions? Have you asked other family members to help out a bit. What about his doctor, does he/she have any recommendations/suggestions? Your daugther's reaction is normal. Daughters for some reason always vent at their mom's, especially since she's suffering ,probably angry and confused, and can't vent at dad for being sick. You'll get the brunt of the anger. In later years she'll realize that you are doing(did) all you could in a tough situation. She may need to speak to a counselor, minister, etc. someone other than mom, to express her fears. It's a tough spot to be in for both of you. I know how frustrating things can seem right now, but somtimes, just when you feel you can't take anything else, a light dawns, God steps in and gives you renewed strength. I wish you the best and your family will be in my prayers as all our on this site. God Bless
  • KathiM
    KathiM Member Posts: 8,028 Member
    #3
    Aw, sweetie, I wish I had a magic wand.....

    I agree with hopeful....check out the possibility (in fact, INSIST) of getting in-house help before bringing him home....it is flat-out dangerous for him to be alone all day, and you MUST work.

    He was a part of your life, and you shared many loving times. Don't discount those feelings. My ex-hubby died recently, and I was surprised at how much feeling I still had.

    This is a rough patch. But, don't compromise YOUR health in caring for him, regardless of what the family is saying. That is what makes caregiving such a tricky job.

    As far as the new tag...well, we have a gal on the breast board who is newboobs....she went to D.C. with us....we had such a laugh each time she had to introduce herself!!!!!

    Hugs to a REAL angel...

    Kathi
  • peacegift2002
    peacegift2002 Member Posts: 16
    #4
    Has anyone spoken to you about home care or hospice? The Social Worker should be bringing this up to you now. If not ask! They can be the blessing you need right now, and God bless you with all that you need.
  • chynabear
    chynabear Member Posts: 481 Member
    #5
    KathiM said:

    Aw, sweetie, I wish I had a magic wand.....

    I agree with hopeful....check out the possibility (in fact, INSIST) of getting in-house help before bringing him home....it is flat-out dangerous for him to be alone all day, and you MUST work.

    He was a part of your life, and you shared many loving times. Don't discount those feelings. My ex-hubby died recently, and I was surprised at how much feeling I still had.

    This is a rough patch. But, don't compromise YOUR health in caring for him, regardless of what the family is saying. That is what makes caregiving such a tricky job.

    As far as the new tag...well, we have a gal on the breast board who is newboobs....she went to D.C. with us....we had such a laugh each time she had to introduce herself!!!!!

    Hugs to a REAL angel...

    Kathi

    I was also going to suggest getting in touch with hospice.

    Have you thought about an assisted care living facility who is trained to care for him and deal with MRSA? In most states (maybe all, I'm not sure) Medicare will pick up the tab on an assisted care facility for 100 days (unless this has changed) for qualified patients. I would, in my opinion, say that this qualifies. Might be something to look into. I'm sure you can speak to a social worker at a health care facility to find out.

    You are such an amazing person.

    Patricia
  • Chrisswife
    Chrisswife Member Posts: 50
    #6
    Hi, and thanks for your well wishes and suggestions. I have definitely thought about hospice and spoke to his family about it. The hospital that Chris is in has a very highly regarded hospice facility on site and we were gently encouraged by his Onc to check it out. that being said, he's not in a hospice situation now; his cancer is quite stable, it's the complications and his high care needs that are the most pressing.
    I spoke to a social worker yesterday who will provide me with some info on DSHS resources; he does have a visiting nurse and an aid who comes to bathe him. Additionally, his parents provide a great deal of support to all of us, and my lovely if decidedly pissed off daughter will be spending a big chunk of spring break with her cousins up near the Canadian border. It'll do us both quite a bit of good :)
    I am getting/seeking help, I just needed vent a little. I was and still am very frightened by these seemingly unendless complications but I've been able to take a few breaths over the weekend and I'm feeling much better.
    Happy Easter to all, we're having a beautiful spring day here in the usually gloomy NW, how can you not find hope when the sun is shining and the flowers are in bloom?!
    Take care all and congrats to the many many people who have reported blessed good news!
    PS to Kathi - I was worried when you reported dizzy spells hon, are you alright?
    Misha
  • nudgie
    nudgie Member Posts: 1,478 Member
    #7
    First off can I ask a stupid question?, wasn't he receiving regular check-ups after is battle in 03? If so, I can't believe it reached Stage IV.

    Anyways, I know some insurance companies help pay for assisted home health care or even full-time home health aide. Some states also provide assistance.

    If all else fails you could speak to family members and even church members for help.

    Please keep us informed
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #8
    nudgie said:

    First off can I ask a stupid question?, wasn't he receiving regular check-ups after is battle in 03? If so, I can't believe it reached Stage IV.

    Anyways, I know some insurance companies help pay for assisted home health care or even full-time home health aide. Some states also provide assistance.

    If all else fails you could speak to family members and even church members for help.

    Please keep us informed

    Nudgie -

    I'll be the first to say you caught me at a bad time - PET and CT scans on Wednesday. So, if I sound abrupt, please forgive me.

    Your question isn't stupid, but "regular check-ups" are essentially looking for metastatic disease. And if that is found, well then you are Stage IV. Check-ups can't prevent Stage IV, they instead detect it early when hopefully there is the best possible chance of treatment. So, it is not hard to imagine a Stage III (or II or I) getting regular checkups and ending up with a Stage IV diagnosis - but hopefully with regular checkups an early Stage IV diagnosis.

    Meanwhile, I hope Chris's ex-wife can find some sort of home health care, short of hospice, to help with the situation.

    Take care,
    Betsy
  • KathiM
    KathiM Member Posts: 8,028 Member
    #9
    Chrisswife said:

    Hi, and thanks for your well wishes and suggestions. I have definitely thought about hospice and spoke to his family about it. The hospital that Chris is in has a very highly regarded hospice facility on site and we were gently encouraged by his Onc to check it out. that being said, he's not in a hospice situation now; his cancer is quite stable, it's the complications and his high care needs that are the most pressing.
    I spoke to a social worker yesterday who will provide me with some info on DSHS resources; he does have a visiting nurse and an aid who comes to bathe him. Additionally, his parents provide a great deal of support to all of us, and my lovely if decidedly pissed off daughter will be spending a big chunk of spring break with her cousins up near the Canadian border. It'll do us both quite a bit of good :)
    I am getting/seeking help, I just needed vent a little. I was and still am very frightened by these seemingly unendless complications but I've been able to take a few breaths over the weekend and I'm feeling much better.
    Happy Easter to all, we're having a beautiful spring day here in the usually gloomy NW, how can you not find hope when the sun is shining and the flowers are in bloom?!
    Take care all and congrats to the many many people who have reported blessed good news!
    PS to Kathi - I was worried when you reported dizzy spells hon, are you alright?
    Misha

    Thank you for the caring my dear! No cause yet...doing fasting blood work urine stuff...

    My "other" cancer was breast...on Tamoxifen...a post on the breast cancer board shows at least 3 of us with the same thing...and we are all over a year post-treatment....so, may be the drug....

    Thanks again for your concern!

    Hugs, Kathi
  • jsabol
    jsabol Member Posts: 1,145 Member
    #10
    I'm so sorry to hear about all the difficulties you and your family have had because of this disease. As a nurse (worked home care and nursing home), cancer survivor, and daughter of dad who died from colon cancer mets, many of your problems strike a chord. You certainly are an exemplary caregiver; your ex-husband is luckly to have so much care and devotion.
    Why is he not qualifed for hospice if his stage IV treatment didn't work? His doc needs to certify that he is suffering from a condition that MAY cause his death within 6 months. My aunt was on hospice care for nearly 2 years. Chris' multiple medical conditions certainly sound like they would also qualify him for a skilled nursing/rehab center, particularly if you, as his primary caregiver, stated that you would not be able to accept responsibilty for his discharge and the amount of care he needs at home. Sounds like a harsh step, but it is a way of comunicating the seriousness of your needs (and your daughters) in trying to care for a man who is bedridden and on isolation precautions. I saw too many caregivers get sick themselves from trying to do the impossible. Please let the discharge planner/social worker know that this is beyond your ability and ask that they make alternate plans (particularly now that you are not his wife.) Your involvement in his life can continue, but he will get the care he needs round the clock from multiple people. E-mail me here if you have any questions.
    Stay strong, hugs to you all, Judy

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