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My dad has been really healthy until about a month ago, when he fell. A trip to the hospital revealed a broken hip from the fall....and a whole lot of stage 4 cancer. He was just released to hospice yesterday and I am the primary caretaker. I still have kids and a husband at home, but for now I am staying with him at his home 1/2 hour away from my own. My dad and I get along but today I had to clean up his first bowel movement. It was everywhere, and the smell was overwhelming. I felt nauseous for about 2 hours after. He's also completely sound of mind and I know this is very embarrassing for him. I feel like a weakling--I know many of you have been doing this for years and I probably sound so silly, but does this get easier? Any advice? Thank you in advance.

I found myself in a terrifying situation when my dad fell & broke his hip in 2014 and rehab would not release him back to Independent Living with my mother. By the grace of God, I was able to find them an Assisted Living Facility that would accept dad (who was catheterized at the time and really in need of a nursing home vs. Assisted Living). Turned out he also had a terminal brain tumor with a grim prognosis in addition to a rare form of cancer. Although I had to do A LOT of the care giving ie: taking him back & forth to doctors & the ER for catheter care, etc., the Assisted Living Facility did the majority of the care, including the clean up of the Depends situations which I know I could not handle personally. Dad lasted 10 months and passed away under Hospice care at the ALF where he lived. Hospice provided him with a hospital bed, a CNA who came in 2x a week to bathe him, and a nurse who administered his comfort care medications and oxygen. Hospice needs to be doing this for YOU as well; otherwise, your dad needs to be in a hospice facility because this is TOO MUCH for you to handle alone. You are not a weakling, my dear, you are a terrified daughter, like I was, and just typing that out made me cry for what you are facing right now. It's the worst thing in the world, I know.
May God give you the guidance & strength that's needed right now to see your dear dad through to his next phase of eternal life.
All the best of luck.
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Reply to lealonnie1
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I’m so sorry, what an incredibly difficult situation. I’m going to give it to you straight—if your dad was sent home with a terminal diagnosis, it’s not going to get easier. His needs will increase as he gets sicker & weaker. Since he is on hospice, it will be expected that he has someone with him 24/7 providing hands on care. It is too much for one person. Especially someone with a spouse & children at home. Hospice will provide a bath aide a few times a week, to come bathe him & change his bedding but everything else will fall to his primary caregiver. If dads finances allow it, you should really consider hiring a couple caregivers if there aren’t enough family members willing/able to pull shifts.

You must remember, as difficult a time as this is for your dad, it is difficult for you too. you are a person too and you matter. Your feelings matter. Your needs matter. It is all too easy for caregivers to put the needs of everyone else before their own, to give up their own lives so their loved ones can remain at home and keep their same lifestyle. It’s often a recipe for disaster and leads to burnout and even death. It’s said that 40% of caregivers die before the person they are taking care of! So.....please don’t forget about your needs & try to get him some caregivers.
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Reply to worriedinCali
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You are very smart to reach out. I can only speak for myself but cleaning up poop is not my thing, I couldn't do it. My husband had cancer and it wasn't a pretty story. I hired a 24/7 nurse and for the last two months I put him in a rental that we owned, it was turnkey, and the nurses(s) stayed there with him, then he went to hospice. I had to do something as I was getting no sleep and trying to run our business(s). Had I to do it over, I would have placed him in a nursing home long before and skipped the at home thing. It took me to my knees. My advice, place him in a home/hospice. I wish you the best!
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Reply to DollyMe
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It is not going to get easier. You can make some adjustments however that will ease your mind and your burden.

For myself, when it was my dad, he wanted to die at home, so we had him at my house. That way I could take care of my kids and still help him. My family's routine was disturbed as little as possible. This was in 1974 before Hospice. It worked out well for me. I did have my mother to watch him at night and then she slept in the day and I took over. Some people didn't think my 10 and 8 years old girls should see it. I asked them if they would feel better if Grandpa was in the hospital. They both said, "no, because they couldn't see him". They were close to Grandpa and when he was dying they would sit and do homework with him and watch TV. It was a natural, circle of life for us. When he had hallucinations from the morphine, I just explained Grandpa was having a nightmare and he couldn't wake up from it. I realize we are a different sort of family, we believe this life is not all there is, and we all were calm about it. My telling you about this is for you to think about moving him to your house or your family coming to live with him.

Since then I have had lots of deaths of family and friends. I think it would be great to make full use of Hospice. You can shop around if the first company doesn't meet your needs. Perhaps you can hire a caregiver to be with him at night while you sleep.

It was my second time going through this and since then I have learned a lot. My heart and thoughts are with you. If I can help you please let me know. ((Hugs)) to all of you.
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Reply to MaryKathleen
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susiencalif Aug 13, 2019
MaryKathleen: Thank you for sharing about your Kids and their Grandfather. What a precious family you have.

And Tricia: I wish you all of God's blessings. I'd like to say it does get easier, but I've found out in the last several months that would not be the truth. Now just reaching out as you have at this forum is a true sign of strength. Never forget that. Hugs and all my best.
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Very sorry this is happening to you. I think you might want to sit down with hospice nurse or social worker and make a plan. Based on the fact that he has hospice in place, he is terminal and you are alone with him at home. Yes, I understand that this is where he wants to be but he cannot stay there without 24 hour care. If it is just you and no other siblings to share care, you are now taking on what a nursing home/hospice facility would be doing with 3 shifts of staff. Plus, he is aware and able to be embarrassed and upset with the messes you have had and will have to clean. If you just let this happen and "wait and see", you will be up in the middle of it all, alone at 2am. I am a nurse but I was not willing to do that with my father; we had not been close when he was healthy. If you want to do it, then that is fine but if you are only doing it because He wants it, you might really want to rethink this and look for a hospice facility he could go to. The hospice nurse will walk you thought what will happen and while they say they will help you, you will be alone with him most of the time. So you have to want to do this. If you don't, then see what your alternatives are and your dad is just going to have to understand.
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Reply to dogparkmomma
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I am an Hospice volunteer. The Hospice I am affiliated with has volunteers and paid staff that will come help you free of charge. Contact Hospice now. The first thing we are taught is to care for ourselves before helping our loved ones. You do not have to do everything yourself. The newness of it all is your worst enemy so take it slow and ask for help immediately before you lose the good relationship with your Dad. Unfortunately, resentment comes into play. Why let that happen? Just because you aren't physically doing all of the day to day things for him doesn't mean that you are not a good daughter. You will find out that this is your new normal and this last stage of your father's life can be beautiful and you can still create wonderful memories together. Wishing you strength, love and comfort...
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Reply to cindic0911
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You've come upon the crisis cluster where a lot of important issues converge and they need solving urgently. I'm so sorry to hear about your dad's diagnosis. You are very loving and valiant in being there for him and sacrificing your family life for now. Some practical matters first:

1) are you his medical Durable Power of Attorney? If not, who is? It is very important that someone trustworthy, responsible and local has this. Also financial PoA. He needs a Healthcare Directive, and also authorize you on his HIPAA release so his doctors can release and discuss his info with you.

2) Do you have any local relatives who can help you? Does your dad have any neighbors, friends, church that can be engaged until you get a handle on things?

3) Do you know what his financial means are? If good, you can seek in-home care services to do what you are willing to give up (and try to get a guy, for your dad's sake).

4) If finances not good you can contact social services to have him assessed and they can offer some in-home services.

Wishing you peace on this journey.
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Reply to Geaton777
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triciast Aug 11, 2019
Thank you so much for your response. I do have power of attorney (financial too) and they did the healthcare directive at the rehab clinic he was sent to for his hip (before he was returned to the hospital with pneumonia). Fortunately I've had about three weeks to get these things in order before him coming home. But now it's just me and him and I am suddenly overwhelmed and terrified. I really appreciate your good kind words. Thank you.
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Banana flakes help stop diarrhea. And I had the same thing when Dh returned from subacute care. It did stop.

if your Dad is in hospice care, you can have that at home or in a hospice facility. If you meet with the hospice nurse you can get a plan of care and ask for the maximum amount of help. Respite help, volunteers, cna visits, nurse visits, etc. if this won’t work for you, a facility near you might be a better choice.
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Reply to Silverspring
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He has to wear adult diapers from now on. Ask dr to write script for hospital bed. Get bed chucks / pads. Hire caregiver to do most of work . Caregiver can give sponge bed bath, if he can’t walk. Get adult wipes & put A& D ointment on tush. Also need vinyl gloves. Not really a job for a daughter to do for Father. ...He needs male caregiver to help. Hugs 🤗
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Reply to CaregiverL
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Is there a reason he was sent home instead of a nursing home or hospice house? Of course the care is too much for you, it would be for most of us here. Your family needs to be your top priority.

How does dad feel about this being so hard on you and your family because you are not where you should be?
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Reply to gladimhere
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triciast Aug 11, 2019
Well, those are good questions. We're all in crisis mode, I think. My dad wants to be home and I guess we're all just doing what we can to make him comfortable (by we all I mean me, my husband, and my kids.) But maybe we acted too soon. I'm going to bring this up to my husband. Thank you for your comment.
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