After a hard year with glioblastoma, my mom is nearing the end. Since my brother and I are still very young (under 30) we had to make the decision for my dad (who has a ton of health problems and an even worse personality) to be in charge of most of her care so we can keep working and making money for our own futures. He actually really enjoyed doing it, I think partly because he has something to give him purpose, but also maybe to try and make up for all the strife he caused my mom when she was well (he was not a very good dad or spouse, to put it lightly). We do come by every weekend, from Friday night to Sunday night to relieve my dad of some of the physical burdens as well as spend time with my mom. I can say that really nobody better understands her than me, so I make these moments count and she usually has a lot of fun and is in a great mood when we're there.
Even though my dad was in charge of most of the care, every week I was on pins and needles. My dad's health is horrible with COPD, heart problems, diabetes, the list goes on. He was hospitalized with pneumonia 3 times in 3 months. The first time he was hospitalized we crowdfunded a bunch of money to hire a home caregiver to help with some of the physical tasks considering my dad was falling ill over and over.
The caregivers have been for the most part great. They love my mom (who doesn't?) and try their best despite my dad's best efforts to make their lives a living hell. He argues with them daily, yells at them, but then calls me crying saying that my mom says she doesn't love him or something that's not true or out of context. She may not be all there with it anymore, but she knows what absolute rancid vibes my dad can bring into a situation, they were married for 30 years after all!
My dad was reluctant to bring hospice in at all (even though it's all in the home, as per my mom's request), mostly because he doesn't like having people tell him what to do even though he doesn't know anything. The nurses come in and he just starts yelling at them, telling them that my mom doesn't need extra supplies (she does), saying she doesn't need a bedside commode (she definitely does). My dad's been an antagonist to every nurse and caregiver that goes through these doors. He's also been very critical of my own caregiving abilities even though I'm really good with my mom (my dad gets sick so often that when I'm over I'm usually the one doing everything).
Now I have work from home capabilities and my work has been very understanding about the situation. I've decided to temporarily stay back in my parents house during the dying process, partly to be with my mom in her last moments but also in an effort to diffuse my dad's horrible personality just a little bit so that the dying process can be a little bit more pleasant and everyone helping can do their jobs in peace. Managing my dad's emotions is a full time job. I've lived with him before as an adult and it was one of the worst experiences of my life, so I'm really not excited to be doing this in such an emotionally vulnerable time (I will basically have no privacy or time away from my dad and his terrible personality). I do have friends in my hometown that have all been very supportive.
I want to be able to create an environment that is pleasant for my mom and calm my dad down at the same time. Why can't he understand that this has been hard on everyone and not just him? Why can't I focus on my dying mom instead of my dad's bad behavior? I hate that I'm even put in this situation but I love my mom more than I dislike my dad (he will NOT be getting the same treatment from me in the future). I understand that my dad is grieving, but this is a pattern of the same behavior I've been dealing with since childhood. Anyone else have family that are just making a bad situation even worse for no reason?
Your plan isn’t going to work. No one is going to be happy in this situation, least of all mom, who is going to be subjected to dad and all the turmoil during the last days of her life. This is a time when she deserves peace and love surrounding her instead of what you describe.
The root of a problem is often in the way it was set up
in the first place. Find a better plan. For instance, mom wants to die at home, apparently. Everyone would better off if she were in a hospice facility and dad was nowhere around. But you’re not going to consider that because mom has set the course, and she shouldn’t be the one to make everyone else miserable. She won’t know where she is is the last days anyway.
Good luck.
So let's walk into his home, a beautiful South Florida villa. He'd been seriously ill for almost 8 months. His hospital bed is on the sun porch. He loved to look out at the greenery and sky. The carpets are stained because he had accidents, bladder and bowel. Sometimes his bowels would just empty when we stood him up. We took precautions, the three and more caregivers and I. But it still happened. And food and drinks were spilled. He fell and bumped into things, leaving marks on the walls and furniture. His walker is in the corner. And the oxygen tanks. And the Hoyer lift. A stand to wheel his catheter bag when he walked outside. His suspenders tossed over the back of a chair. He needed them because his pants wouldn't stay up when he lost so much weight.
His medical supplies mingle with the food in the fridge. There are plastic bags of medical things and also morphine. Pills here and there, especially in the kitchen. Many bottles, many dispensers. All sorts of aids in the bathroom for toileting and showering. All kinds of bandages and boxes from catheters and other supplies. We had to make room for all the equipment throughout the house, so furniture and other items are piled in the dining room. We can't eat there. He can't either.
The whole house smells like a sickroom. Bodily fluids, disinfectant spray to cover the odor. Antiseptics. Rubbing alcohol. Ointments. Paperwork from his hospitalizations. Folders pertaining to chemo, appointments. Large message boards for caregivers, for appointment reminders. Little papers with phone messages. Always dirty dishes to be washed, large bags of adult diapers to be disposed of (the garbage can, which was built into the ground, wasn't large enough for all the room that we needed between trash pickups). Always laundry to be done.
Dad crying that he wanted to die. Hospice doctors, nurses, a minister, OTs, PTs and visitors in and out. Never quiet in the house until nighttime. Difficult to leave the house to buy food, and I'd cook it only to have visitors stop by and eat it. Dad begging doctor to give him a shot to end it. Doctor saying no.
This is what dying at home looks like.
Don't put that sort of image in people's heads, because it isn't true for all situations.
I'd make it really clear to him how things are going to be in your mom's last days:
--Hospice nurses are angels in disguise, and what they say goes -- period.
--If they want to order extra supplies, Dad gets no say -- period.
--Mom is going to die at home -- period.
--If Dad causes any more trouble, HE will be shipped out to a nursing home or a hotel for the duration -- period.
--His behavior now will determine how his last days will go -- period. He is and has been doing permanent damage to his relationships. Compassion is not a one-way street. (Repeat that one often.)
--Acknowledge his grief at your mom's imminent demise, but point out that no one has a greater right to rage at her situation than she does. He needs to temper his behavior in accordance with hers, or rage in private and without upsetting her or her caregivers, because she is going to die in comfort and in peace -- period.
My deepest condolences for this situation you're in. Glioblastoma is just devastating.
Sadly I don't think there are any easy answers here(other than removing your dad completely from the home)so I would just suggest that when the time gets closer to your mom actually dying(hospice can let you know when that is)that you have your mom brought to the hospice home so that she can at least have her final week in peace and at a beautiful facility, and so she can die in peace as well.
Medicare will cover the hospice home 100% if someone dies within a week while being there, if not you will have to pay out of pocket for her to stay there, but to me it would be worth every penny, so your mom like I said, could at least die in peace.
Enjoy whatever time you have left with your mom and leave noting left unsaid.
God bless you.
My experience: when my dad was in this situation the nurses were here 24 hours. When my sister was in the same situation I had to do everything. Make sure you ask your hospice company what their responsibility will be when it comes to the last 72 hours. I have been in this situation 4 times and each time its not easy and its different each time. Also, know that you will see you mom again and reassure your dad that he will see her again in heaven and she will be laughing and dancing. prayers for you and your family!
Many people on the forum have a bully, nasty, jerk parent.
Bullying makes them feel good.
It’s good he behaves slightly better when you’re around, but you’ll still never change him.
You’re already doing all you can for your Mom, by being there for her. Protect your own health.
Reading all these forum stories of terrible health, I’m super inspired to really take care of my health, so I can try to avoid future problems.
Protect your health, too. Keep super fit. THAT’S the best thing you can do against your Dad’s bullying. Think less about him. More about your health.
One suggestion I have is that someone from Hospice talks to him about how he's treating the hospice staffers. Especially if there's a man from the program who can explain things. Your father sounds like the kind of guy who would listen more to a fellow male, and it might be harder for him to bully that guy. You could stand behind the hospice guy and nod and take notes, then say, "Dad, remember what Dr. Sam said." or "Should we call Dr. Sam a It might have more impact.
I'd also suggest that you have your brother talk to him. "Dad, no. That's not allowed or appropriate, and you're upsetting Mom. Is this going to be how things are these last few weeks / months?" You say your father is trying to make up for being a crap husband…tell him how to do it. It's not about him, though. It's about your mom.
Your mother deserves peaceful companionship and gentle care. If your father can't be a part of that, maybe there's a way for him to go elsewhere.
Good luck during this beautiful and difficult time, Regina.
Sometimes habits and traditions need to end. Break the cycle so that your mom can receive the best care possible.
You can’t change your dad’s behavior but you can try to influence your mom to do what is right for her. I have compassion for your father having to deal with his own medical issues but that doesn’t mean that he should get to cause problems for your mother.
My mom died in an end of life hospice care home. Please see if this is available for your mom. Pay no attention to anyone who criticizes this. Tell your mom that you will be her advocate and visit her as often as possible.
Best wishes to you and your family.