Stage 4 caregiver

whatis
whatis Member Posts: 1
in Esophageal Cancer #1
Hello everybody,

I am the caregiver for my father. I am 20, he is 60. He was diagnosed on Friday the thirteenth in May, a few days after his birthday. Our lives have been completely flipped over. He is stage iv. Every day gets tougher. He has lost about 45 pounds and now weighs as much as me which is less than 100 lbs. Eating is what was so hard throughout the start. He finally agreed to go to the doctor after 6 months of slowly losing weight and not being able to swallow food. After diagnosis, he received a stent which greatly helped, and had a second one placed a few months later. We tried to get a J-tube placed, we went so far as to be in the prep room for surgery, but a cat scan showed that his liver was too enlarged that it completely blocked the intestine, and would be a very risky surgery.

My dad did not have health insurance, so I applied for medicaid. With no income, I also applied for Social Security Disability for him, and was very disappointed that it takes six months to start collecting. So we are winging it until then.

My dad is so weak and scary thin, I am questioning if the next round of chemo is going to hurt him rather than help. He can't do much except lay on the couch. Sitting is a chore and walking without help is impossible. He passes out if he tries to walk on his own, with me waking up at 3 in the morning to a thud, finding him on the floor. Going up the stairs now requires two people to pull him up- a new thing this week- so I have to call around to see if someone is around at night to help him up.

I can't believe all of the stuff we have been through. I question how to cope with this? I don't know. Family comes over and get upset over seeing him. I don't want to think about not having him around, and I am constantly thinking about it.

People always say that this is such a weight on me and to ask for help, but what I really need is a clone of myself. Somebody to live here 24/7 and keep an eye on him, while I can take a nap and leave for a few days.

I have had every emotion possible and I am drained. I just hope we can have thanksgiving and christmas together and a merry one at that.

Thanks for all your great posts, they have been very helpful.

~b

Comments

  • LilChemoSmoker
    LilChemoSmoker Member Posts: 185
    #2
    Oh my goodness B!
    Hello and welcome to the sight! My heart pours to you and your father. Your post is so full of pain and exhaustion. I am a caregiver and wife to Eric (chomosmoker) for 16 years. He also is Stage IV and on palliative care only. I have a couple of questions I would like to ask you, if you don't mind.

    You said that you applied for his Social Security Disability and you have a 6 month wait for his benefits. Did you apply for SSI as well? It is a Social Security Income that is kind of like welfare but based on your disability and income. The program goes hand in hand with SS, and was designed to fill in the gap of income while you wait for full SS benefits. If he qualifies for SS and has no current income he should qualify and that should get you two some immediate income. All you have to do is opt in for SSI either through your case worker or online.

    You also said you would like to have a clone of yourself...Well, have you considered calling Hospice in to help. Stage IV is generally a palliative situation and if he is indeed a palliative only patient, even with Chemo he should qualify for Hospice care which will provide meds and round the clock care if needed all for free. You can get a referral from the doctor to Hospice. Most people think that Hospice is only for the "end days" and that is just not the case. They provide many services for patients on palliative care, for as long as their services are needed at no charge to the family. They can aide in things like a recliner for your father to sleep in so he doesn't have to climb upstairs, medical equipment, medications, and even resources for respite care for you. All you have to do is ask his Dr. for the referral and they will be out in a couple of days to get it all going. They are a blessing for caregivers and will focus on his quality of life, to make sure he is comfortable.

    I know that this is really tough on you and you must be a strong person to be handling all of this by yourself and at your age. Bless your heart for being such a pillar for him. I pray for you to find rest for yourself and some relief in your care for him. I also pray that you can find the strength to take care of your needs as well.

    Keep us updated on how things go and know that we are here to help in any way that we can!

    Hugs,
    -Michelle
  • ritawaite13
    ritawaite13 Member Posts: 236
    #3
    LilChemoSmoker said:

    Oh my goodness B!
    Hello and welcome to the sight! My heart pours to you and your father. Your post is so full of pain and exhaustion. I am a caregiver and wife to Eric (chomosmoker) for 16 years. He also is Stage IV and on palliative care only. I have a couple of questions I would like to ask you, if you don't mind.

    You said that you applied for his Social Security Disability and you have a 6 month wait for his benefits. Did you apply for SSI as well? It is a Social Security Income that is kind of like welfare but based on your disability and income. The program goes hand in hand with SS, and was designed to fill in the gap of income while you wait for full SS benefits. If he qualifies for SS and has no current income he should qualify and that should get you two some immediate income. All you have to do is opt in for SSI either through your case worker or online.

    You also said you would like to have a clone of yourself...Well, have you considered calling Hospice in to help. Stage IV is generally a palliative situation and if he is indeed a palliative only patient, even with Chemo he should qualify for Hospice care which will provide meds and round the clock care if needed all for free. You can get a referral from the doctor to Hospice. Most people think that Hospice is only for the "end days" and that is just not the case. They provide many services for patients on palliative care, for as long as their services are needed at no charge to the family. They can aide in things like a recliner for your father to sleep in so he doesn't have to climb upstairs, medical equipment, medications, and even resources for respite care for you. All you have to do is ask his Dr. for the referral and they will be out in a couple of days to get it all going. They are a blessing for caregivers and will focus on his quality of life, to make sure he is comfortable.

    I know that this is really tough on you and you must be a strong person to be handling all of this by yourself and at your age. Bless your heart for being such a pillar for him. I pray for you to find rest for yourself and some relief in your care for him. I also pray that you can find the strength to take care of your needs as well.

    Keep us updated on how things go and know that we are here to help in any way that we can!

    Hugs,
    -Michelle

    Hi B
    Michelle is SO right! Get a hospice referral immediately! With their help your life will be at least a little easier and your dad will be more at peace knowing you have some help.
    You have definately come to the right place here. I have gained so much knowledge and support from the folks on here. Take care.
    Rita
  • json_2011
    json_2011 Member Posts: 100
    #4
    With Michelle and Rita ,
    With Michelle and Rita , your dad should def. qualify for assistance asap. Also hospice will only help you , with all you need. I know your dad is grateful for you. We will pray that this will happen for you. My mother has stage iv , and can relate. Thats why were all here.



    Jason
  • chemosmoker
    chemosmoker Member Posts: 501
    #5
    HELP IS ON THE WAY!!!!! CALL THEM!!!
    B,
    I think you have gotten the right advice.....NOW FOLLOW IT!!!

    YOU NEED HOSPICE! They ARE a clone of you, in the form of a nurse, or nurses, they can keep him at home if you and he wish, or find you a facility nearby, only if you want, they will provide ALL medications and comfort and needs like a recliner for him to sit/sleep in, Oxygen, bathing aids, wheelchair, walker, ANYTHING you could ever need for him, and it is ALL FREE. You do NOT have to qualify for hospice, you dad IS qualified. Just sign the papers and relief is THERE NOW. They will come out that day or the next day if you called tonight!

    You said "Somebody to live here 24/7 and keep an eye on him, while I can take a nap and leave for a few days." Hospice DOES this! They call it respite care. Read on...

    They also have doctors on call, hospitals that work for them that will take Dad in with NO insurance, medicare, medicaid, money, etc etc, ALL you need is HOSPICE. That's ALL they do.
    You don't have 6 months to wait, that's a joke. Do the paperwork so it gets done and he get's his SS and benefits, but for TODAY, you need Hospice. Did I mention Hospice?

    They have social workers to help YOU with your needs and someone to talk to, and a Chaplin if you wish. They are really incredible. They even can come in and take over so YOU can go out and get some much needed relief or respite they call it. You cannot do this alone!

    The BIGGEST mistake people make is thinking that you call them at the END, in the last days. That's sadly what happens allot, but ideally they should already BE there helping you.

    Please, call his doctor or hospital, NOW, and get a referral for hospice or their phone number and get this done tonight, now, yesterday!

    We are here for you. Post ANY questions you have; ANYTHING.
    I look forward to hearing more from you soon and a good update about hospice so you get some relief and don't do yourself in before your time!

    May God bless you and grant your Dad relief and YOU TOO,

    -Eric

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