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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.

No it does not get easier. I have the same problem with my husband. (many years of this) Your Dad needs urgent care at this time. You cannot do this anymore. You have a husband, a family that needs you at home. Get the help he needs and do not feel guilty. My situation is different. He is my husband and I stand by, "for better or worse" Your first responsibility lies with your family and your Dad MUST understand!
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Reply to happy2stitch
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I appreciate this group so much. Things have progressed rapidly and tonight my dad told me he is ready to die. I see that he is leaving this earth in many ways. I don't want anyone to think that I didn't like the support I got here, because the opposite is true. I probably won't be around much anymore, except maybe over the next few days in the dying forums. I truly thank everyone so much for their past offerings of thoughts, prayers, and support. I with it back to you a million-fold.
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disgustedtoo Aug 18, 2019
Sorry to hear that everything has gone sour so quickly. Hopefully you two can have some quality time before he passes. Give him some extra hugs if you can.
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Ask for help! Insurance, church, service groups all can offer help and advice. If your dad is like most he will be resistant to letting “strangers” in the house but you need to start now marshaling helpers.

Catholic Family Services, Adult Services, in Ohio Passport, even local senior services. the sooner you reach out the sooner you can get assistance for your dad and get back to your family.

Involve your dad in making the contacts and interviews. Letting him have some choice in the matter will help. Like dealing with a small child, do you want to wear the red coat or the blue coat. You’re going to wear a coat but you get to pick the color!
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Reply to Frances73
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Triciast....
You poor baby. First, you are not so much your dad's "caretaker", but his Caregiver. Caretakers are usually associated with lawn care or property care of some sort.....just a technicality...😃.
Second, I'm sure your situation will not improve, but may become more exhausting and, at times, overwhelming.
Thank God you got hospice involved. Use them! They are an excellent source of practical help, physical assistance, and well-informed advice.
And third....this is vital to your sanity and well being: Make sure your soul is saved by Jesus Christ, and also that of your father! He needs to be Sure of where he is heading before very long. Take no chances. We all default to Hell if no choice is made for our soul's destination.
You want peace of mind.....ask Christ into your heart, in all sincerity....please make absolutely certain that your soul is saved, and safe, as well as your father's soul. He needs to be certain about where he will be heading. I can't stress this enough! Eternity is Forever! Don't mess up! Your precious souls are on the line! I tell you this in Love, ok.
Hospice is an excellent resource! Talk to them! And use them!
May God be with you always! 🌺🕊🌺
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Reply to Bronish
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Are you the only option for his care?  I don't know about you, but I have no desire to be a caregiver for an adult. It was thrust upon me and I have been arranging for supplemental care so that I only fill in the gaps.  Don't feel guilty because you want to be his daughter and aren't keen on wiping his bottom.  If your dad is still mentally competent, I am sure he is as mortified as you are.  Are they not treating the hip break because of the stage 4 cancer?  Surely he qualifies for some type of care...?  Someone that can come in and get him bathed and dressed in the morning and someone that can come in later in the day to get him settled at night?  I would talk with Hospice and see if they can help you figure out care for him.  Or if he is a veteran, there are resources out there.

To answer your question, some things get a little easier...then different problems arise.  What changes is that you get smarter about how to handle them!
Take care of yourself.
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Reply to Jamesj
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Since you mentioned broken hip and pneumonia, is/was he on antibiotics? Usually it happens earlier in the course, but antibiotics can cause nasty BMs. Mom had to take them for cellulitis, 2 rounds of meds, and within a day or so of starting those, she lost control in the kitchen. This delayed her move to MC a few days. OB was there and had to clean up floor and clothes.

She did NOT have any medical problems before that (only takes meds for BP, long term) and her major Dx at this point is dementia. Later in MC she had a UTI and had to take antibiotics again. At her regular review they mentioned bowel incontinence, so I got OTC probiotics. It isn't clear if that cleared her up or just time/off the meds, but at the following reviews, there was no mention of antibiotics.

While antibiotics are certainly helpful, could it be the cause of this? Has the follow up BMs been the same? Is the cancer digestive related?
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disgustedtoo Aug 14, 2019
Ooops, that should read:

"...but at the following reviews, there was no mention of bowel incontinence."

Even with the most recent review (every 6 mo) there is no mention of that, so I chalk it all up for her to the antibiotics.
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If either of your parents are/were veterans consider getting VA assistance. My dad was a veteran and we were able to get assistance for my mom. Contact your local office of the aging and social services to see if he qualifies for additional aid.
Sending hugs.
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Reply to tallpetsitter
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Like being a new parent, you learn and perfect skills and coping.

I am concerned that you have family 1/2 hour away but spend all your time with dad. Does his insurance cover some of hospice care? You should be able to arrange for paid caregivers to help ease the load on you. Your dad needs you, but so do your hubby and kids. Try to find a balance that allows you to spend some "time off" with your family as well as quality time with your dad.
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In my (hopefully, so far) brief experience of 6 months, it gets harder but then it gets easier. When my mom was put on hospice back then, she could still walk (not well, but she could do it) and feed herself. She had some memory abilities but they were fading fast. Since then she is bedridden, incontinent and can't feed herself. She remembers her children's names but that's about it, can't swallow well so food choices are limited (although she constantly wants food she can't have).

My mom has advanced dementia. Just when you get used to playing the cards you were dealt, the House deals a new hand. It's a new normal to get used to. But you do.

Our hospice program has an aide come in daily for wash up, teeth brushing etc and they'll change her while they're here. But I do all the rest of it. They also provide nurse visits every other day; if they think she's near death they come as often as needed - daily or more. They monitor vitals etc. A hospice social worker monitors how the caregivers (that would be you, siblings etc.) are doing and handling things and will help you find resources to cope.

My employer has been letting me work from home 3 days a week; my sister fills in one of the two days I go to work and a paid caregiver takes the other one. My brother (who travels a lot) takes Saturdays so I can get some time away. It's the best we can do and I'm carrying the lion's share of the workload...her laundry, administering medicine, grocery shopping (let me tell you, Amazon and Instacart are my two best friends these days). It can be overwhelming at times, especially when work is crazy. Fortunately my mom sleeps a lot more now so it's easier to balance everything.

I'm not a fan of BMs either - lately my mom's had a lot of them and she doesnt usually know when they are coming so - lately her new trick is having one AS I'm changing her (ugh!!) but I changed plenty of my kids' diapers so it's really not that bad. She'd prefer to use the potty but that's no longer possible and since our roles are reversed and I'm technically in the role of 'parent' she goes along because the only alternative is she doesn't get changed and has to sit in it.

Do the best you can but if you get to a point of no return consider hospice in a facility. I'm almost there myself as I can tell I am physically and mentally approaching my limit.
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Reply to NHLGAL77
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Yes Hospice should be providing you with suppliesie diapers, wipes, a daily or weekly nurse visits, CNA should come in to clean him up, and you may want to hire a caregiver for the time during the day or at night so you van take a breather, and no its gets harder so you may want to consider some help and you have to now take over your Dad finances and bill paying etc.. so you will need a POA for medical and financial so you can pay the bills and make medical decisions for him .. I got mine from LegalZoom at an affordable price. I am real sorry for this abrupt change in your life and the best thing to do is prepare yourself and take control of his and your new normal...
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Reply to fellowcaregiver
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Put Vicks Vapo Rub under your nose to help with the smell of bowel products. Help yourself out in this beginning journey as much as possible - possibly getting a Bidet toilet and plenty of toileting products including wipes.
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Reply to Llamalover47
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I'm sad to say from my experience ...it does not get easier...it becomes manageable as you learn how to juggle it all. When you say "released to Hospice" was there anyone set up to help you navigate his end of life care? Hospice programs in our area (SE PA) are wonderful at assisting the person on Hospice, their caregivers & loved ones.
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Reply to mdsimons30
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You did not say why you have not arranged for a caregiver to come in for maybe 4 or 5 hours per day for relief for you. If it is financially feasible, do that. We had to get help. I have a bad shoulder and it was impossible for me to handle my mother who was bedridden. We did 8 hours per day with private caregiver who charged much less than the caregivers who have overhead and is a chain. Mom had to wear diapers so we had the bowel movements to deal with too after the caregiver left. Just a recommendation for you if you all can handle it financially.
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Reply to elaineSC
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I deal with this on a daily basis. Handling your father's embarrassment will be easier for both of you if you approach it clinically. I try to not show any outward emotions except to get the job done. Try asking him what might make this easier on him. In my opinion it does get easier. And harder. Try to schedule time away for both of you. Stay connected with you family. I'm sorry you both are dealing with this hard issue. My mom was always very clean and capable. She was ill and hospitalized earlier this year and came home a different person. Please hang in there.
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My heart goes out to you. I know exactly what you are going thru. I , also have a home, kids and a husband along with a job at that time. My dad and mom both were released from the hospital two days apart. they were also released into hospice care at their home. I moved my parents from a home they lived in for fifty years as so they could be closer to us for the help they needed. I also felt I needed to move in with them as I could see the decline in their health. I was/am a very lucky woman to marry a man who stood by me every step of the way. he understood why I needed to do this and didn't fight me on this issue at all. he would come over their house as much as possible. my husband also had/ has health issues at the same time they did. he has Parkinsons
Disease, was being treated for prostrate cancer at the time. and

has COPD. I have four sisters two older and two younger and not one of them would step up to the plate at all. they made every excuse you could think of to me. after a while I stopped asking for help. I knew that my parents were dying and my sister didn't give a crap. so my option was to do it all myself. and I did.
you ask if it gets better with time ? I wont lie to you. there are times when they are ok and you can speak, feed, laugh with them and than there were days that were horrible and you wish the day would be over. It doesn't get better because their health is not going to get better. I trained myself to forget the bad times and enjoy the good times with them. we laughed and cried together told family stories to each other when they were up to it.
at night I would lay my head on the pillow and think of the funny things they said or did that day and was able to fall asleep.
I am so sorry you are going thru this but remember your dads time on this earth is limited. love him and enjoy him and you will get thru it all.... with wonderful memories.
my parents died three weeks apart. I don't regret my decision to help them thru their final days on this earth. I got to know them better than I ever had before, and even loved them more.
my parents gave me life and I wanted to be there for them when they took their last breath on this earth in my arms....
miss them both dearly.
I
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Bronish Aug 14, 2019
Lizzy....ohmygosh, I'm in tears! 😭.
We couldn't help my father much....he went to a nursing home...he had developed bed sores and my mother was legally blind, and had serious cataracts which we weren't aware of at the time....she was dealing with Mac Degen.
We lost my dad back in 2008. I then stepped up to help my mom....I lived out of state, but she and I have always been closer than even twins....we were each other, it would seem!
Long story short, I was able to move her in with my husband and myself, and being a cat rescuer, I have plenty cats as well.
I was ready to give my life, if need be, for my dear, sweet mother....I did everything I could for her, giving her the best of all things, like special meals I'd make sure she got the best....I took care of her with God's help.....Jesus loved her thru me....and He enabled me to have boundless patience, and after 3 1/2 years, I watched her slowly go into decline....this was the hardest part of my life...to watch the one person you can't live without, slipping away, and you can't stop it. I did my utmost for her in Jesus's name, and by His grace, I was steadfast to the end.
I would do it all over again, even knowing the sad outcome....I love my mother so much...your story of loving sacrifice really touched my heart. Thank you for sharing. Shalom.
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Yes and no.
Surprisingly no matter how squeamish you think you might be you learn to ignore it and just deal with it like you did with your children.

Hospice allows (in most situations and in most areas) Respite care for the Caregiver which is normally 5 days out of every 30 days which is paid for by Medicare, your dad will be taken to either a Nursing Home or the Hospice House for your Respite sometimes just knowing you'll get a break is enough to keep you going and help you get through it.

Unfortunately as you find a groove and things start to feel easier you may find your dads conditions change and it will sometimes feel like you're getting gut punched.

My dad had COPD It got easier for me with him even as he entered end stage...... Switching to my mother she's got Dementia and every time I felt like I got a grip on the situation her Dementia would change, right now I'm dealing with end stage with mom and it's not easy at all.... the diapers, feeding and clean ups that's the easy stuff.
The other aspects you'll be confronted with..... not so easy at times.
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Reply to madhatter632
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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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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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Reply to RayLinStephens
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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 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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Reply to cetude
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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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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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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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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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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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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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Reply to Lymie61
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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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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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Reply to Rbonuc2999
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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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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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