How to get through a parent’s hospice intact

[Anonymous]

Looking for advice/suggestions as to how you have managed to get through your parent going through hospice, while trying to take care of yourself and your kids/other family members. Please, anyone?

[Anonymous]

Hospice is there to help you and to make your parent comfortable. IMHO, they are angels. They make sure pain meds are available, as well as other necessary supplies. My father was living with me and the hospice nurse answered every question. If your parent is in a nursing home, hospice is another set of eyes on him/her. As I said, my father was living with me. He ended up dying in my home, but a hospice facility could have removed taken him in for 7-10 days (if I had little children in my house). Another important factor for me, and my dad, was having the same nurse and nurse’s aid visit. The staff consistency vs a hospital setting was deeply appreciated.

[Anonymous]

Op, are you there, in the same location? You structure your day. Some time spent comforting your parent. Set aside time to do tasks that may not be time sensitive (returning phone calls, arranging visits from people who might want to come by)

Some time for normalcy (best you can, handling your own life). Your parent would not want you to suffer. Keep that in mind. You will of course but that is the last thing they would wish for you.

Staff can be a great comfort. The And connection, even friendship. Many have a depth of experience with grief and are open to sharing/talking about their own journey

[Anonymous]

I'm sorry OP, such a hard thing to go through. My two cents (and advice varies a bit for sure as pp's have said regarding the locations/distance involved.)

- prioritize quality time w/ your parent and let hospice manage any/all of the care to the maximum extent possible. Use the services and help to deal w/ the physical realities, use their expert advice about how to maximize quality time, and grab those minutes/hours.
- keep yourself sane and prioritize your kids' needs also. They all matter. Your parent would want you to be well and would not want their grandchildren to suffer anything as a result of their illness.
- don't be afraid to expose your kids to what it happening. My mother refused contact w/ her grandkids and my kids were really sorry they didn't get to see her. It would have been hard, for sure, but I wish they could have had one more visit with her, and the experience of being by a loved one's bedside in hard times.
- it won't be perfect. Whatever happens you will have grief and possibly regrets. Whatever happens, your parent will die and that is just so hard. There is no perfect way, and there is often pain and scary moments along the way. But hospice care can dramatically ease the path and they really, really know what they're doing. Let them guide you.
- remember that it really truly is ok, and even critical, to take care of yourself during this.

My mother's last weeks were fraught w/ terrifying times, then when we got hospice involved (way too late) she only had about 10 days left. There was an afternoon where she was calm, coherent, comfortable and the house was quiet. I spent about two hours chatting w/ her about her life, lots of inconsequential stuff, etc... It was a tiny little window of peace, during which she felt loved and happy, and I cherish it. Two hours amidst a sea of so much stress and pain, but two hours I wouldn't have had without hospice and an intentional decision to just sit with her when I and she could. There were a few other hours here and there, but that one afternoon stays with me as eternal comfort. So look for those moments and grab them when you can. And don't try to make every day full of them - you probably won't have that luxury, but a few hours can and will matter to all of you.

My sympathies. Be present, be kind to yourself, use ALL of the help you can, and know that you'll get through it. We all do, eventually.

[Anonymous]

My mom didn't make it into hospice but a couple of weeks before she died I ended up in the ER of the hospital she was in after fainting. Once they discharged me at 3 am I snuck into her room to return a phone charger and leave a note that I was ok. She was awake and asked me if I would mind staying for a little while. I sat next to her and held her hand and we chatted about inconsequential things. After about an hour, she was ready to sleep and I went home. It was really nice to just have quiet time together.

Anonymous wrote:I'm sorry OP, such a hard thing to go through. My two cents (and advice varies a bit for sure as pp's have said regarding the locations/distance involved.)

- prioritize quality time w/ your parent and let hospice manage any/all of the care to the maximum extent possible. Use the services and help to deal w/ the physical realities, use their expert advice about how to maximize quality time, and grab those minutes/hours.
- keep yourself sane and prioritize your kids' needs also. They all matter. Your parent would want you to be well and would not want their grandchildren to suffer anything as a result of their illness.
- don't be afraid to expose your kids to what it happening. My mother refused contact w/ her grandkids and my kids were really sorry they didn't get to see her. It would have been hard, for sure, but I wish they could have had one more visit with her, and the experience of being by a loved one's bedside in hard times.
- it won't be perfect. Whatever happens you will have grief and possibly regrets. Whatever happens, your parent will die and that is just so hard. There is no perfect way, and there is often pain and scary moments along the way. But hospice care can dramatically ease the path and they really, really know what they're doing. Let them guide you.
- remember that it really truly is ok, and even critical, to take care of yourself during this.

My mother's last weeks were fraught w/ terrifying times, then when we got hospice involved (way too late) she only had about 10 days left. There was an afternoon where she was calm, coherent, comfortable and the house was quiet. I spent about two hours chatting w/ her about her life, lots of inconsequential stuff, etc... It was a tiny little window of peace, during which she felt loved and happy, and I cherish it. Two hours amidst a sea of so much stress and pain, but two hours I wouldn't have had without hospice and an intentional decision to just sit with her when I and she could. There were a few other hours here and there, but that one afternoon stays with me as eternal comfort. So look for those moments and grab them when you can. And don't try to make every day full of them - you probably won't have that luxury, but a few hours can and will matter to all of you.

My sympathies. Be present, be kind to yourself, use ALL of the help you can, and know that you'll get through it. We all do, eventually.

[Anonymous]

I let DH travel to be at his mother's side holding her hand for almost 2 weeks except to leave to sleep. I stayed home and handled the kid.

In a facility, hospice might mean zero food or water. They might not even provide chapstick. I'd grab extra chapstick.

I'm sorry you are going thru this, and your parent.

[Anonymous]

Agree with the posters that say let hospice do as much as possible, expect there to be a lot of hard stuff, and look for those opportunities of calm to hang out with your parent. I had one of those nights during my dad’s last week when he rallied and drank wine and told stories about his teenage days. It’s something I know I’m going to hold on to. Lots of the rest of the week was hard though. I left my kids at home with DH to focus on my dad as much as I could at the end and really value that time. If there are ways to get away from other family responsibilities so you aren’t pulled in many directions (eg accepting friends offers of help, or telling a spouse you need them to step up) I’d definitely do so. Of course that’s easier when the hospice period is shorter. My mom lingered for a really long time and that was awful. In that case, know that it’s okay to take breaks and not be there every minute.

From my experience, the hospice people were pretty good at estimating time left. My dad’s wife was in denial and wouldn’t ask/could accept what they/we were telling her and in retrospect wished she had known as she would have spent those last couple of weeks differently.

Also - get fresh air, exercise, etc. If what you really need is a walk of some reflection after a hard day with your parent but feel badly for not spending that time with your kids, LET THAT GO and take care of yourself. It won’t matter to your kids in the long run but it can make a big difference for you and your ability to be there for your parent. Alternately, if what you need is to skip an afternoon visiting parent and cuddle with your kids and feed them your parents favorite flavor of Ben and Jerry’s for dinner, that’s okay too.

And remember, hospice workers support both you and the dying. They’ve seen it all, can answer your questions, and reassure you about what’s coming and/or about your reactions to it. Talk to them. Call the after hours line if you need it, etc.

[Anonymous]

Anonymous wrote:I let DH travel to be at his mother's side holding her hand for almost 2 weeks except to leave to sleep. I stayed home and handled the kid.

In a facility, hospice might mean zero food or water. They might not even provide chapstick. I'd grab extra chapstick.

I'm sorry you are going thru this, and your parent.

My husband spent the last few weeks at the nursing home as much as he could, including working there. Hospice will give food and water but most don't want it.

[Anonymous]

If your kids manage without you, even if it's very difficult, it's a good lesson for them.

[Anonymous]

I have been through this with my own parent and a close friend's parent and in both cases eventually the staff had to explain that it's OK to live your life. You visit. You show your love. You are allowed to take care of your kids and get exercise and go to your job too especially if hospice is lasting longer than expected. What would your parents want? Would they want you feeling so torn or would they want you to visit but also lead your life?

My friend's family made sure her dad was never alone and this want for over a month and they were getting burned out. Eventually the took the advice of hospice and have him breaks and that is when passed peacefully.

My family is more dysfunctional and people were throwing guilt trips and shame right and left, and sure enough in every way possible dad made it clear he was ready and finally when he got alone time he passed peacefully.

Often obituaries say the person died "surrounded by loved ones" but really them mean surrounded by love. I was told it is so rare for someone to pass with a circle of people around and that's totally fine. Many people somehow "chose" to pass away alone.

[Anonymous]

Just wanted to say that sincere and helpful threads like this make up for the snark that infuses certain corners of DCUM.

Thank you to everyone who is sharing their stories and their advice.

—NP

[Anonymous]

OP here—I agree, and want to thank all of you for your good advice. I will take it to heart. What a difficult thing this is.

[Anonymous]

Hire out help--grocery shopping, meal prep (personal chefs are a godsend), house cleaning, etc.

[Anonymous]

I just went through this with my mom, OP. It was so, so quick. She had colorectal cancer that had spread. It landed her in the hospital in Feb., and she ended up on hospice as there were no more options.

As far as time, what hospice told me is that cancer patients go quick, but other diseases, especially dementia, tend to hang on much longer. They told us at the hospital that she would go quick, but I didn't believe them She was so strong and not that old (72). The day she left the hosptial (March 8) she could walk. Two days later, she was bedridden Nine days later she passed. I still dont know what to think.

We did hospice at home. Your family member will get much better care with in home hospice than putting the family member in a facility, that is, if you or other family members can care. Our nurse came once/day -- hospice isn't 24/7 care with a nurse. Family members have to do A LOT. And I mean A LOT.

The hospice team was great -- they noted all of the actively dying stages on point - she passed almost right when they said she would.

It is VERY DIFFICULT. This is still really raw for me and I'm still trying to process this. How could my mom go from shopping at Target, eating full meals, WALKING, etc., and a month later, she's nonverbal and bedridden...and then dies. She was skin and bones when she passed and it's so so difficult for me to get that picture out of my head. Its so hard

If you have Tik Tok, I strongly suggest following one of the hospice nurse creators on there - Hospice Nurse Julie is fantastic. It really helped me know what to expect.

[Anonymous]

I agree that you don’t need to be there all the time. The truth is that patients often want to let go, but they don’t until everyone leaves the room. Give them the space to let go if they are ready to do so.