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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.

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It doesn't get any easier, but when my mother was released from the hospital, she had the runs for about two days. I had to change the diapers and it fell on the floor - big mess. I think that they had given her something for constipation. Hopefully this is the case for your dad. You could try things like coconut macaroons or fiber rich bread. Hospice will help you with the caregiving. Good luck
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triciast Aug 11, 2019
Thank you so much for your response. Yes, maybe you're right about the constipation meds. Here's hoping!
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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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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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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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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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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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For myself, I found that nothing was worse than the shock of the diagnosis.
You are certainly no weakling. You are there for him. If you weren’t strong, you wouldn’t be.
The course of my LO’s care was7 weeks. If you are able, focus on researching comfort care and doing what your dad wants done.
If he has a preference as to in home or residential services, I think the decision is his to make.
My own feeling is that children and teens should also be allowed to vent, visit, and/or FaceTime as they and your dad wish.
Everyone may feel somewhat better if you’re able to develop some sort of routine to balance your time between your dad’s home and yours.
Don’t let yourself forget about caring for yourself and your other dear ones.
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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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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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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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The worst thing about caregiving for me was the toileting. I can't take smells. And having to help Mom was awful. I would just about gag. Once she was in the AL I let the aides do it.

If Dad can afford it, get help for the times an aide isn't there.
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Quite understandable that you'd be freaking out!

I agree with others that this will not get easier. You might get more used to it and if you have a proper amount of help, you might find it tolerable. But you need LOTS of help. Don't be a hero. Don't feel guilty. You're only human and have normal limitations.
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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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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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I don't think it gets easier, but sometimes you have to listen to your gut.

My mom's a fall risk and I've had to stay home. Sometimes I feel I'm trapped and can't get out, but I have a strong and supportive sister and can text her all the time for help.

What my sister said was for me to take a handle on my stress before I spiral down. I take care of my mom and we get into arguments. Yet, my sister said to nip the arguments on the bud. I have to accept that my heart is racing and my mind is going crazy and I have to tell myself to shove it and wait for my stress level to go down. Sometimes I wait 10 minutes, maybe 15. I have to give myself a break and say, "I've done enough for now. It's time for me to rest." Make your mind and heart at ease.

I'm not perfect. It's not a fool-proof plan. I'm not a super hero. I have to listen to my body and if it says, "I'm too tired for this.", than accept it.

I have a part-time caregiver that helps. Caregivers are expensive, but they offer a lot of advice and experience so they can teach you what to do and give yourself a break.

I hoped I helped.
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Kittybee Aug 12, 2019
This is really good! The pausing and collecting yourself, not expecting yourself to be a perfect superhero, staying tuned in to your fatigue/hunger/exasperation and pacing yourself around it, and leveraging hired caregivers as you can afford and are appropriate. Wise words!
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I’m sorry to hear about your dad. His diagnosis must have been a real shock. Still is, I’m sure. I’m sorry. You are grieving, too. And that makes it all extra difficult.

My husband used to be extremely private. When he got sick, it was a shock for both of us to be in these new roles. What helped me was watching a friend (who I called to help get him up after he fell in the shower). Our friend was so professional and nonchalant about the intimacy of the situation- covered him properly with a towel keeping respect at all times, spoke out loud what he was going to do (without too much detail, of course), addressed him with a title of respect and provided encouragement throughout. It was actually kind of beautiful, and I learned so much from observing that day.

Also, I learned how to change him in bed from the nurses at the hospital. Knowing the technique has really helped! Also finding out about disposable pads and other useful gear has helped.

In in many ways, it has gotten easier. But things are always changing, so there are new challenges.

Tip: consider buying a bidet for the toilet so he can clean himself without reaching around. It helps as long as he can still use the toilet.
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PowerOf3 Aug 13, 2019
You’re so fortunate to have a person to learn from, oh my graces that’s worth a million dollars. Yes they are modest, they are a different breed of men and they are old school. It’s possible that it’s as difficult for him that she’s doing this, I often wonder if a stranger would be a better option because like you said, it’s got to be done.
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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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Speak to your hospice case manager to find out everything that can be done to assist you. You don't say whether he is on Medicare or Medicaid. They will help by sending aides (for a couple of hours a few times a week), helping you order equipment (costs usually will be covered by Medicare), etc. Hospice care is comfort care, so talk to your father about his medical wishes. People can go so far as to request no hospitalization and no feeding if they cannot feed themselves. If you don't have Power of Attorney (POA) for medical and financial matters, you should get it while your father is in sound mind. If he doesn't have a living will with his medical directives he should get one. And make sure he has a will. It's best to get an attorney for this. If you can afford it, hire an aide to help out. You also have responsibility for your husband and kids, so you'll need breaks from being a caregiver to your father. Talk to your hospice case manager about this.
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What you do is also going to depend on his and your financial situation and frankly, the estimated time they think he will be on hospice (i.e. how long until he is expected to pass on). If he has the means and you do not have to work/can get FMLA and he has a 90 day or less estimation then you can A. You stay most of the time with him with a caregiver at least 12-24 hours a day and go back and forth to see your family. My father would be very upset if I saw him naked. He is too modest for that, he would just want to crawl away in embarrassment. He would pay for 24 hour care for that not to happen. B. You take him to your house and get a caregiver at least 12 hours a day. C. He goes to a SNF or Hospice House (if your area has a live-in hospice - most areas do not have a live in hospice for more than a 1 week stay) if he has longer than 90 days or does not have the finances to pay for help you will have to make different choices because your family also has to be considered and you cannot do this yourself all by yourself. If your Dad says he doesn't want to spend the money - but he has the money - tell him "Dad, you saved it for a rainy day - and it is starting to sprinkle."
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CaregiverL Aug 13, 2019
saving for a rainy day like our parents did...& now it’s pouring ☔️ 🌧 so the $$$ has to be used for the care . Hugs 🤗
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.....And a whole lot of stage 4 cancer....
It appears Dad needs Hospice Now, Please, Medicaid will pay for this and he will get the Kind of Care he needs. You are an angel for Giving up much of your Life but the Strife? Will just get worse. Mom died last December of Stage 3 Lung Cancer, It began to Travel up her Throat. Her lung collapsed and we lost her, It is so hard for Dad, But thank God my own Dad has an Angel to care for him with his own Emphysema, My sister.
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BetseyP Aug 13, 2019
I agree with Parise. This sounds way too seriously medical for a novice, particularly for one person. In a nursing home he'll get proper care and you can visit as often as you are able. He could be in an institution close to your home, rather than his. It might not be too costly, under the circumstances and there are ways to pay for these things. Perhaps it would make more sense for you to tackle the financial part of it and get him the professional care he needs. Good luck. Blessings.
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We have more experience we can tell you your family right down to the dog and cat, need to present a united front. You would be surprised of the needs of a person who is even 5 percent defecient.



Those needs can't be met without a good lawyer good medical team great social worker and united front that is on step ahead of the person.

And even then there will be hard days.
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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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When you said "He was just released to hospice yesterday" I thought oh good tragic but sounds like the best series of events possible under the circumstances. I understand now you meant he was released home on Hospice and while Hospice is the best and only move for both of you IMHO I might have chosen to send him to a Hospice live in facility rather than home with their help where someone (you) needs to be the primary hands on caregiver. I don't know the exact details of his health situation or how long they expect him to live but "a whole lot of stage 4 cancer" sounds like his needs are going to increase and his body is going to break down fairly rapidly. Unfortunately that doesn't always mean they will pass quickly, some lucky ones (in my opinion) do while others survive in this somewhere in between life and death state for much longer than anyone expects. In some ways it's probably more difficult to have this conversation now that he is home but in others since he is cognitively sharp there is something to be said for being able to make decisions here on his own terms, for himself. Either way I would encourage you to talk with him and the Hospice people, maybe they should even be the ones to suggest it, about if and when it might be best for him to move to a Hospice facility. They are not all the same and they are not all the Nursing Homes we picture. My uncle who didn't have a penny to his name, he was a Medicaid patient I'm sure, also passed from stage 4 cancer and was on home Hospice for several months before moving to a beautiful Hospice facility where family could visit with him outside in the gardens and they had created a real "home" feeling with great care to privacy for each patient and their families. They catered to family and friends being able to spend as much time as they wanted with him, comfortably and without having to tend to the nitty gritty details of physical care, even my uncle who was adamantly against doctors and hospitals, was like your dad always in great physical shape a tree surgeon by trade, agreed that it was the right time and place to go better than being at home for his last days.

I don't know what the live in Hospice facilities are like around you or around him (another consideration) but even just to have all your options at the ready in case this does get to be too much it would be worth taking some time to visit them and gather all your info.

As to your question; Does this get easier, yes and no. It's like any big change in life, the brand new discoveries good or bad hit you like a bulldozer but as you navigate your way through, get skilled at the method that works best for you (and him) as you do it repetitively it becomes more habit and you just don't think about it as much. I hesitate to compare this way but it's like when you were a brand new mom and were faced with diaper changes and clean up, (well I don't know about you but my DH went running and it was left to me) at first it's a bit horrifying but it has to be done and soon it becomes brainless. Not the same as cleaning up your parent I know but same principal. There will be all kinds of "new" events & situations including wonderful ones. This time forces the opportunity to spend quality time and share a very special bond with your dad too, don't miss that by getting caught up in the negatives, bodily functions are bodily functions & loosing them are the disease not the person, you are so fortunate to have your dad fully present now, focus on that with him, tape conversations with him about family and family history, learn things about him you didn't know, find new joys he hasn't experienced things you enjoy maybe that he can still be some part of. Read together, garden together, paint together, puzzles...include him in your life, get his in order together, let him learn new things it will help push the negatives in the background and keep the end of his life from being simply about cancer and dying for both of you. Out of cha
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Check to see if hospice can give you help with him - there are many options out there it doesn't have to be just you
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He may be becoming bowel incontinent. I cared for my Gram for 10 years and this happened to me. She would refuse to wear depends and started pooping everywhere. She couldn't control it. As advised, I waited for the next hospitalization (small heart attack) and stated that I could not continue to provide the care she needed. She then went to a wonderful nursing home where she was well taken care of and they were able to keep her clean and comfortable. I was then able to visit and spend quality time with her.
She passed away after 3 months there. She was on hospice in the nursing home. They were wonderful.
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I think the answers that have been given to you are all on point. Over the course of 10 years of having Mom here at my home things have been better and worse. As others have explained, it is the CIRCLE OF LIFE. First when we are born we are 100% dependent, then we learn to talk, walk, run, learn, teenage years can be like an elderly person who is first told they can no longer drive or be left alone.... so very challenging for the person and for those who love and want to do what is best for them. As the parent approaches their death, backwards toward cane, walker, wheelchair, and then bedridden till death. You are part of the sandwich generation where care of your husband and kids is priority as well as care for an elderly parent or parents. Stay on this site!! Keep asking daily questions. It seems, right at this moment, cleaning up your Dad's bowel movement has been the hardest emotionally, and physically. That DOES get easier! As talking to your Dad and making sure you keep him in the loop. HUMOR, jokes, etc. will bring such joy to your Dad and you. Do you have siblings to help? Cousins that are close to their uncle? As with a child....it takes a village. Are you the type that has always done everything and hate to ask for help? That behavior HAS to be put to the side now for your own sanity and your family's well being. Please keep this group up to date on how things are going for you and how things might change for the next 3-5 weeks. As mentioned, but worth mentioning again, USE this support group daily, or even hourly, at the beginning. I am so glad you found everyone here sooner then later!
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triciast Aug 13, 2019
Thank you! I appreciate the advice! .xo
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I would highly recommend a Hospice facility. My experience with them was very positive. They not only help the client but the family too.

Your in my thoughts and prayers.
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If you are planning to try to keep him at home, see about getting some in-home health care for the big part of a day. You can go home, tend to family, and return. If kids are in school, perhaps staying nights with him would be best and hire day help. If they are preschool, maybe take them with you for part of a day and have the help come in. The clean up is difficult for both of you. He never, in his wildest, would have wanted a daughter to do that, but it's part of the caregiver role.

If he is agreeable to hospice facility, that would be best. You can come and go as needed at home (find a place as close to your house as possible) and he would have 24/7 staff to handle the more private things he needs.

I am a caregiver who never had kids - never changed a dirty diaper in my life. I've had animals and there is not a mess I cannot clean up that is created by an animal. Yet, cleaning a grown adult up is very, very difficult. Never gets easier, but if you have no choice you figure it out. If you have to do it, get some Vick's rub and put a tad under your nose. It does make a difference.
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worriedinCali Aug 13, 2019
If her kids are in school, she should hire night help and go to her dads during the day when the kids are in school. She should be home with her family at night & see the kids off to school.
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It gets much harder--at least in my case it did. Mom has end stage Alzheimer's disease and is bed ridden and I have to disimpact her every few days including oil enemas. She puts her hands in it and smears it everywhere including her other private parts, so the cleaning has to be very well done or she will get a urinary tract infection. Cleaning up poop gets easier because you get used to it but it is very back breaking. If you absolutely can't stand it put him in a nursing home. You are better off taking him to a nursing home, because they can live many many years at home and you will not be able to work a regular job. When they die you have nothing and can even end up homeless due to age discrimination and being out of the job market for a long time.

But since he's dying of cancer it probably won't take as long, so do the best you can. I know this sounds awful and I apologize but in a way he's lucky because death by other means can take many, many years. My mom has had Alzheimer's for 10 years, and the last five were very severe. Bedridden on tube feeding is far from easy. Apart from having virtually no brain--she cannot even talk--physically she is doing okay because her needs are met. She is taking in the tube feeds and fluids quite well. However, I got the tube put in because death by dehydration is slow and horrible and can take 3 weeks even under hospice.

My daddy died of cancer when he was 68 years old and he was a horrible sight. He ended up looking like a skeleton with a distended belly like those third-world people. When he threw up black stuff across the room, which was blood, he died shortly after that. Mom took care of him the whole time, and she was also 68 years old. Never put a peg tube into someone dying of cancer because they cannot digest the food. Keep him comfortable and hospice will give him a plentiful supply of narcotics. When daddy was unable to take anything in by mouth, I gave him pain medication rectally because that was the only other way to do it.

Mom is now 90.
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It doesn't get any easier, unfortunately! If he is in hospice, they should have provided help to clean and bathe him as well as respite for you. Talk to the social worker in charge of his case. Good luck
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It's not healthy to be separated from your own family. Not even to take care of your father.

RE: cleaning up a bowel movement, what helped me was to think in terms of food in and food waste out. Some people compare it to cleaning up a baby, a very large baby. Some never even get used to changing diapers on babies.
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My mom did recover from her broken hip and drove a car again etc. This was 18 years before 2 more falls and a final decline which left her bedridden for nearly 2 years on hospice in my home. She also lived nearly 14 years after a terminal cancer diagnosis where they said she had 6 months to live...they missed that prediction by thirteen and a half years. Sometimes these elders bounce back in totally unexpected ways.
I had to handle bad bowel issues the last 2 yrs. They way I dealt with that is to tell myself that nurses and professional caregivers do this all the time. People with children must do this too. By cleaning her and keeping her dry I was improving things by making her comfortable, so I focused on thinking I was making an improvement. You are not a weakling by any means, but a caring daughter. I wish you all the best, ((Hugs)), Katie22.
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