The Do's and Don'ts of being a caregiver (yes, it's hard!)

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#endoflife #hospice #activelydying

[catherinerose]

My mom watched her figure her whole life. We offered her a piece of cake when she was in Hospice. She wanted it but she was still worried about her weight. My sister told her it’s time to have your cake and eat it too. She laughed and then we all laughed. It was a wonderful moment. She sure enjoyed that big piece of carrot cake😊. She ate it all!

[schawnettarobinson]

Being a caregiver is isolating. People don’t really understand. They don’t care. They aren’t supportive.

[joyinthemorn]

I’m caring for both parents at their end of life. I appreciate this.

[roadchickie]

I wish I had found you before my precious mother died in Hospice care this past month. We (my sister, father and I) didn't know. Mom should have been in hospice care a good month or two before she passed but we did ALL of the wrong things. We demanded she eat, shower, move, get into her wheelchair, stay awake and up during the day (although she begged us to just sleep in bed all day). We thought we were doing the right things. I remember how petrified I was that if I didn't demand she live, she'd die. I never considered that I should let her die in grace and peace. I wish so badly I could go back two months ago and make very different decisions with how I talked to her and treated her. I will be haunted by that until the day I die. As for hospice care, It was like a wall of bricks to the head when we finally called a local hospice and got Mom set up at home in a hospital bed and began the caretaking. Thank God my aunt, Mom's sister, told use to call hospice care and not take Mom to the emergency room (where she would have died in a cold hospital bed). Fortunately, we had an angel (her name is Dana) for our hospice nurse. Her kindness, care, consideration, knowledge and empathy were everything to us - a lifeline that no one will appreciate until they are in our shoes. She told us what you explained in this video, all of it and more. My mother died at home after 2 days in hospice care and she died with us being her main caregivers. My last memories with her are of stroking her forehead, rubbing her chest, holding her hand, singing to her, telling her over and over that I loved her, that I'd be there for my sister and father. I know this will sound weird, but witnessing my mother die wasn't a horrific event. It was, however, jarring, traumatic, and emotionally so painful, but only because I was thrown into it last minute, completely unwilling to accept that Mom was in fact dying. This is why people like you and Dana are so, so critical. Families need this information desperately. Thank you for putting this information (and all of your videos) out for others to learn about end of life care. I'm now prepared to do the caregiving again. It will be just as emotionally painful but not jarring, not traumatic. I will be prepared. Bless you, Nurse Julie, you kind, lovely woman. We need more of you (and Dana).

[SofiaRodriguez-xvgr]

Ooh my gosh, my mom is on hospice and today was such a hard day for me she is bedridden with dementia and blind but the sweetest woman today we struggled with issues with dementia and I broke down crying she’s been bedridden over two years and I am sole caregiver my mom who is on hospice grabbed my hand and told me “you are doing a great job don’t beat yourself up, I am safe, I am comfortable and I am loved” I beat myself so much. I needed to hear that, your last comments thank you❤❤❤❤

[candicegaier]

I am so glad that I had found this channel. I never forced my son to eat. He just stopped eating the day after Christmas. I let him have his cigerettes and if he wanted a shot of some alcohol, I gave it to him.. The only thing he wouldn't do for me is shower. He would say he thought today would be a good day to shower, but not right now. Then by late afternoon it was too late. He would tease me with the shower thing many times. He never lost his sense of humor. Some days I think I didn't do a good job. But now I am glad I did what ever he needed and wanted. My niece and daughter gave him a bed bath and washed his hair and he looks so comfortable. He "slept" thur the whole bath. He died peacefully early the next morning. And I was able to remain sane only because you had told me what to expect. Thank you

[Happy-uywc]

Don't force feed.
Offer them their favorite foods.
Don't force them to stay on a healthy diet.
Let them have what ever they want... icecream, beer, whiskey, pizza, chocolate.
Don't force them to get up. If they want to stay in bed and watch YouTube, let them. Unless they need to get up so that you can change their sheets.
Do not be hard on yourself.

[raine]

I took care of my husband thru hospice... my hospice nurse was so helpful in teaching me what I needed to do. Hardest thing I've ever done.

[kbota]

Parental caregiver here, and I am really hard on myself. Thank you for reminding me to give myself grace.

[jonidee]

When I was doing my practicum as a nurse practitioner, there was a man in his 90s who was reported by nursing home staff having aggression. Looking at the time of the aggression, we figured there was probably something going on in his G.I. tract, and he did die of a G.I. bleed a few months later. His wife, obviously, given his age and dementia, did not want to pursue this. But I pulled in a behavioral psychologist who noted that most of the aggression was at meals because he was trying to steal other peoples desserts. He was a diabetic. We immediately pulled the dietary restrictions. People tend to focus on one problem and ignore the big picture. So thank you for pointing that out. It’s very important.

[melanieoconnor]

my husband was diagnosed with glioblastoma stage 4 brain cancer in January of 2024. he has been very difficult and angry, i am very sad i have lost my best friend. your video has helped me alot. you are fantastic.

[marathoner]

That last part struck a chord Julie. When Mom was on hospice, I was blaming myself for her being there. After Dad died, I was supposed to take care of her, and clearly I let her down.

I've dealt with that, but when the hospice sent out the social worker she was surprised. The other surprise I had for her was when she said "If this gets to be too much, we do have a hospice house." I told her "You will take me out in a body bag before I let you put her in a hospice house. I promised her she'd die at home, and so help me God, I'll do everything I can to make sure that happens."

You are right Julie, being a caregiver is a very hard job. I did it for both Mom and Dad, but leading up to hospice and finally hospice itself. I was holding both of their hands when their hearts stopped. I made sure both died in the home they loved, and had made into a home for over 60 years. There were nights of getting up at 3am because Mom wanted oatmeal at 3am. There were nights were Dad called out because he wasn't sure where he was (he was legally blind, so he couldn't see his surroundings well, and his mind wasn't working great, so he couldn't sense things the way he did before he went downhill). So many other things too. BUT, all that said, it is the hardest job you'll ever love. And, I take great comfort in keeping that promise...they did not die alone, and they died in the home they loved.

The one thing I would suggest to caregivers...ASK QUESTIONS. If you don't know something, ASK! Ask the hospice nurse. Ask the persons primary care doctor. Even if you think the question is stupid, ask it. That way you can give your loved one the best care that you can.

[bboyzgram]

I took care of my Mom during her last few weeks. I had very little support but would not trade the experience. One evening Mom said she wanted a Highball. I paused thinking of her meds....specifically the Ambien and Valium. She was adamant and I thought maybe it would help her sleep. So....1oz of Seagrams (yuck) and ginger ale. She nothing short of inhaled that drink. The pleasure on her face and her saying it was soo good. However, it did not help her sleep any better. The next night I asked if she wanted another Highball. So...glug glug glug went the Seagrams and glug went the ginger ale. It still didn't help her sleep, but the joy she felt....

[Lexington-nz]

My husband had TERRIBLE terminal agitation while he was in hospice. It was so bad that I couldn't stay with him. I stayed exhausted! Finally, the nurse pulled me aside and said "look, I'm not going to kick you out, but you look absolutely exhausted.". She went on to say " go home and get some rest... We ( the hospice nurses) got this.". My husband died that next morning and I wasn't there. I wanted so badly to be there when he passed away, but I just couldn't.

[yaassss]

My dad was a hospice patient and passed away today. Your videos were very helpful and comforting. Thank you.

[RyanWessell-rs]

Sometimes its frustrating when the person you're trying to take care of just doesn't do anything to help themselves. I know they are the patient, but I think patients need to be reminded how the decisions they make impact the caregivers.

[juliemackowiak]

Thank you, Julie for all those tips. I often do feel guilty, but sometimes I’m just so exhausted.

[SarahJohnson-bvsh]

Thanks to every hospice worker out there. My heart is eternally thankful for your help during my mother's last six months of life. Nurse Julie, do you have a talk on making the choice to put someone on hospice care. That was the hardest part for me

[sabrinalamarca]

I took care of my dad for two on in home hospice. He died in March 2024. I still ask myself what could I have done better. These thoughts haunt me daily. I think I did what was best for him, I am just sorry I couldnt save him longer. Big hugs to all the care givers out there, its tough, mentally exhausting, premourning, high anxiety, sleep depravation, doing whats best for them while forgetting about yourself-it is a tough job, but rewarding. I would do it all over again a trillon times.

[DrJanTaplin]

I have worked with so many caregivers that continue to do these things, despite being told by hospice nurses over and over. This is why I no longer do private caregiving with other private caregivers. The caregivers think that they know what is best, even when hospice is telling them something different. I hope and pray that people on hospice find caregivers that will honor what the patient/ client wants. It is heartbreaking when a client body language is saying "I have no desire to eat" and then a caregiver brings "the clients favorite soup" and offers in such a way that the client eats it even when they don't want it. Then the caregiver says "see, [patient name] still wants to eat" and tries to make you feel bad like you are depriving the patient/ client, when all you are doing is honoring his/ her wishes. Thank you so much for this video.