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.
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!
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! 🌺🕊🌺
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.
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?
"...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.
Sending hugs.
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.
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.
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
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.
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.
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.
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.
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.
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.
Your in my thoughts and prayers.
She passed away after 3 months there. She was on hospice in the nursing home. They were wonderful.
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
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.
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.