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.
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.
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.
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.
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.
Sending hugs.
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.
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.
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! 🌺🕊🌺
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!