Is it normal to not want to discuss a parent's end of life care as they age?

[Anonymous]

MIL is 93 and she suffers from dementia (Alzheimer's/vascular). She is aging in place and she has a team of home aides.

DH and his siblings, all in their 50s and 60s, seem to get more and more attached to their mother as every year passes. DH's sisters especially are extremely close to MIL.

My parents passed when they were in their 50s and 60s , so I don't know what it's like to have an elderly parent.

As MIL's dementia will progress they don't know if she will be able to stay in her own house until she passes, but equally they don't want to discuss MIL's future care (among each other)
MIL herself never made any plans for her own care.

Is this normal? I fear that one day there will be a crisis that none of them will be prepared for. I just find it strange that they're so close to their mother but her end of life care is not a topic they like to discuss.
I am more practically minded so I think I would like to have a plan B and C in my mind should something go wrong.

[Anonymous]

I mean she’s currently living out her end of life care plan. This is it, this is the plan.

[Anonymous]

This is the plan, she has hired a team of home health aides, and plans to age in place, and hopefully die at home. The plans for the care are the health aides. That's what they are there for. They aides, and the company they probably work for, have contingencies for when different layers of aide need to be in place. Not everyone wants to die in an Institution. Her plan is to die at home, and have care provided by the team of health aides.

[Anonymous]

Couple things Op. And this is going to sound so harsh, just to be precise ~ she may die tomorrow, problem solved. Everyday, any day, she could die that day. The care giving that works today -as you describe- works. It works for today and today is all that's known. A health event, short of death, sends her to the hospital. There she can not be released until plans are in place for where she would go. And all that matters is what facility has space, at that time. If siblings talk to each other too deeply they are going to disagree on something. Sometimes those "somethings" never have to get resolved because circumstances take care of it. When everyone's stressed it's hard to just keep relationships going without friction.

[Anonymous]

Anonymous wrote:This is the plan, she has hired a team of home health aides, and plans to age in place, and hopefully die at home. The plans for the care are the health aides. That's what they are there for. They aides, and the company they probably work for, have contingencies for when different layers of aide need to be in place. Not everyone wants to die in an Institution. Her plan is to die at home, and have care provided by the team of health aides.

I know, but there is only so much the home health aides can do.

MIL has had a couple of falls in the last 2 years. In her own house and outside. She has also started wandering around her house in the middle of the night, saying she wants to 'go home'.
There is always a home health aide who stays the night in a separate bexroom. MIL is not really steady on her feet as she once was and her house has stairs. Is this not a dangerous situation?

[Anonymous]

Anonymous wrote:

Anonymous wrote:This is the plan, she has hired a team of home health aides, and plans to age in place, and hopefully die at home. The plans for the care are the health aides. That's what they are there for. They aides, and the company they probably work for, have contingencies for when different layers of aide need to be in place. Not everyone wants to die in an Institution. Her plan is to die at home, and have care provided by the team of health aides.

I know, but there is only so much the home health aides can do.

MIL has had a couple of falls in the last 2 years. In her own house and outside. She has also started wandering around her house in the middle of the night, saying she wants to 'go home'.
There is always a home health aide who stays the night in a separate bexroom. MIL is not really steady on her feet as she once was and her house has stairs. Is this not a dangerous situation?

So what if it is? She's 92 years old. It's time. She's living the end the way she wants to. Leave her and your husband's family alone, as it's clear you are not willing to listen to anybody, but only believe your opinion is the right one.

[Anonymous]

OP, you being wound up and mad doesn't do any good to anyone.

[Anonymous]

OP I so get it and we were in this situation with my dad. It was awful. Mom ignored hospice and it was like watching him be tortured to death. He hated all the tubes and would thrash about pulling them off and she thought she was saving him from hospice who wanted to kill him. He could no longer do anything independently , not even walk or talk and was in diapers. The only humane part was she allowed them to give him pain killers. She had not read up on how end of life looks and why they remove all those wires/tubes or how to help someone die comfortably and humanely. He was livid too. For us he made signs he knew we were there with his eyes and noises. He would not even look at her other than to do an angry grunt.

[Anonymous]

Anonymous wrote:OP I so get it and we were in this situation with my dad. It was awful. Mom ignored hospice and it was like watching him be tortured to death. He hated all the tubes and would thrash about pulling them off and she thought she was saving him from hospice who wanted to kill him. He could no longer do anything independently , not even walk or talk and was in diapers. The only humane part was she allowed them to give him pain killers. She had not read up on how end of life looks and why they remove all those wires/tubes or how to help someone die comfortably and humanely. He was livid too. For us he made signs he knew we were there with his eyes and noises. He would not even look at her other than to do an angry grunt.

Sorry I forgot to add, before that they just decided he wanted to age in place. Mom as resentful and hostile having aides all the time, but I was the devil for suggesting memory care since he was so much happier when he went to a day program where people were kind to him and happy to see him. It's so hard to detach from it all, but in this case it is your inlaws and they have to do what they feel comfortable with even if you see the elder unhappy. If we don't make reasonable plans for ourselves like continued care retirement we are at the mercy of those around us some of who go into denial or just can't cope.

[Anonymous]

I sympathize OP - I ended up being responsible for my husband’s aunt and uncle when the uncle had a catastrophic stroke and the aunt was suffering from advanced dementia. No one had talked to them about planning for their care - they imagined they would care for each other in their home until death. After the uncle died (a few weeks after his stroke) I had to go through the courts to arrange for guardianship and conservatorship for the aunt so we could handle her medical care. People seldom plan for a crisis or catastrophe when they are thinking about their later years. Most are like your husband’s family hoping to make it through without a disaster.

[Anonymous]

My mom started talking to us about end of life issues when she hit 70. She didn't die until she was 90 but we were all pretty comfortable talking about all the issues involved long before then.

I'm approaching 70 myself and I'm doing pretty good but I have had those discussions with my adult kids too. I don't know why your H's family finds it awkward but lots of people do. Not much you can do about it.

[Anonymous]

My MIL is in the end stages of Parkinson's. Her sons take wonderful care of her, and she has a cast of rotating aides that come to help her in her apartment, who are ready to increase their hours as she progresses in her illness.

And that's the plan. There's none better, OP. She will die in her own home, or in hospital/hospice in the throes of her last illness. There will be no nursing home. My husband is a doctor, my BIL is a pharmacist, my other BIL oversees her finances, all the aides are devoted, and from her native country, speak her language, cook her native cuisine. I wish I'll be as well cared for at her age!

[Anonymous]

Anonymous wrote:My mom started talking to us about end of life issues when she hit 70. She didn't die until she was 90 but we were all pretty comfortable talking about all the issues involved long before then.

I'm approaching 70 myself and I'm doing pretty good but I have had those discussions with my adult kids too. I don't know why your H's family finds it awkward but lots of people do. Not much you can do about it.

OP. My MIL is a devout Catholic. The home health aide takes her to church every Sunday (if MIL is feeling well enough), or they pray together at her house. Religion has played a huge part in MIL's life.
I'm a Catholic too but I don't practice. Neither does my husband but my SILs do.
I wonder if it's to do with their strong religious connection.

[Anonymous]

Anonymous wrote:

Anonymous wrote:My mom started talking to us about end of life issues when she hit 70. She didn't die until she was 90 but we were all pretty comfortable talking about all the issues involved long before then.

I'm approaching 70 myself and I'm doing pretty good but I have had those discussions with my adult kids too. I don't know why your H's family finds it awkward but lots of people do. Not much you can do about it.

OP. My MIL is a devout Catholic. The home health aide takes her to church every Sunday (if MIL is feeling well enough), or they pray together at her house. Religion has played a huge part in MIL's life.
I'm a Catholic too but I don't practice. Neither does my husband but my SILs do.
I wonder if it's to do with their strong religious connection.

Probably not, since no religious texts specify one way or the other (people died earlier when they were written!). It's just that there isn't much to talk about, OP. The end usually comes with falls, strokes, heart attacks, heart failures, infection, or aspiration/pneumonia in the end stage of dementia (happened to both my paternal grandparents). These outcomes aren't necessarily better in institutions, and sometimes they're a lot worse. It depends on how well the patient is cared for at home. If your MIL wants to age at home, and the family has the means to keep paying for 24/7 care and oversee the aides, then it's better she remain at home. Her care will be a lot more personalized and she will be in the psychological and material comfort of her own home. Nursing homes are for people who don't have that.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My mom started talking to us about end of life issues when she hit 70. She didn't die until she was 90 but we were all pretty comfortable talking about all the issues involved long before then.

I'm approaching 70 myself and I'm doing pretty good but I have had those discussions with my adult kids too. I don't know why your H's family finds it awkward but lots of people do. Not much you can do about it.

OP. My MIL is a devout Catholic. The home health aide takes her to church every Sunday (if MIL is feeling well enough), or they pray together at her house. Religion has played a huge part in MIL's life.
I'm a Catholic too but I don't practice. Neither does my husband but my SILs do.
I wonder if it's to do with their strong religious connection.

Probably not, since no religious texts specify one way or the other (people died earlier when they were written!). It's just that there isn't much to talk about, OP. The end usually comes with falls, strokes, heart attacks, heart failures, infection, or aspiration/pneumonia in the end stage of dementia (happened to both my paternal grandparents). These outcomes aren't necessarily better in institutions, and sometimes they're a lot worse. It depends on how well the patient is cared for at home. If your MIL wants to age at home, and the family has the means to keep paying for 24/7 care and oversee the aides, then it's better she remain at home. Her care will be a lot more personalized and she will be in the psychological and material comfort of her own home. Nursing homes are for people who don't have that.

Not OP, but there is plenty to talk about and it's selfish not to talk about it while you are still of sound mind. Family needs to know their wishes and be able to say what their boundaries are. In many cases aging in place becomes unsustainable or incredible lonely and isolating. Some things are sustainable when a person remains in decent shape until death. I notice din my family, those who were actually involved in caring for a family member who declined substantially made reasonable plans for their own lives and didn't want to be a massive burden on family. It's the selfish ones who just checked in now and then and didn't have to see the dark side of aging who don't really plan or discuss.