End of Life, Hospice

[Turkish]

I haven't seen my mom for over a year and a half. The last time I and my kids saw her, she had no idea who we were, but she seemed happy. Her previous self would have been horrified about being in a home. She worked elder care the last 2 decades, and told me that she wanted to "die on the hill." I was kind of happy that she reverted in her mind to forget the last 40-some years to be happy. They found the meds to keep her stable since she was aggressive.

This week they called me and it's likely time for hospice. She's confined to bed, with a deep leg wound. It sounds horrible.

I had singed a DNR, but the hospice person asked me, since my mom hadn't. I told her, "not like Terry Shaivo, though I'm not suggesting euthanasia, but I know my mom wouldn't want extraordinary procedures." She knew my mom was an RN. I shared the 60 run down of my mom's life when asked. I left out the mental illnesses.

Due to covid, we will have a group zoom meeting later this week with a lot of people. There's an ethics board.

I so wish my mom had trusted me even a decade ago to take care of her, but she's under county conservatorship. Yet I'm next of kin, so involved.

I told the person that my mom's wish was to be cremated and buried on her property next to her husband. The property was seized by the county due to unpaid back taxes. That situation was an avoidable mess, my 5 acre inheritance gone. I'll contact the new owner when it's time, or make a late night commando raid in the forest like old times. 

I'm not sure what to tell my kids, of anything. I'm not sure what to "tell" myself. Or my coworkers, friends of many years. Deal with things and move on, like I've always done.
She's at the limit of our 150 mile covid lock down. Like, I have looked at alternate routes. California suggests this, as does my work, I'm an essential worker.

[Methuen]

I'm very sorry to hear this Turkish. All of it. Lots to deal with, physically, emotionally, and socially too (friends, coworkers who couldn't possibly comprehend...) .  Very very complicated. 

I'm not sure what to tell my kids, of anything. I'm not sure what to "tell" myself. Or my coworkers, friends of many years. Deal with things and move on, like I've always done.

Yes.  You managed the best you could. Tell people the minimum truth: elderly - care home - leg wound. People will understand that part.   Keep the mind in first or second gear, and keep breathing deep and slow.  One day at a time.  We kept my MIL's ashes for 7 years, before FIL passed, and then spread the ashes together.  Perhaps the burying of the ashes part could wait - post Covid?

Self-care of yourself and kids at this time.   Thinking of you.

[Notwendy]

I so wish my mom had trusted me even a decade ago to take care of her, but she's under county conservatorship. Yet I'm next of kin, so involved.

Hi Turkish, I wish you the best through this difficult time. People might think it's odd that we would grieve the impending loss of someone who has also caused us such difficulty, but I think it's understandable to have grief both over the loss of a parent as well as a loss of what we wished was different.

From your posts, I think you have done the very best anyone could do with your mother. You even tried having her move in with you. I know this is something I could not do, even though I wish I could have that kind of relationship with my mother- to wish we could be closer.

But we can't and I know that as well. I wish I also could have done more for my father, that our relationship in the later part of his life could have been better, but when a wish involves two people, the other person has to wish it too or at least allow it.

I understand the feeling that we just didn't get it right with our parents, but I think many of us have tried, and I think you have as well. At this time, the best you can do is do what you can to honor her wishes, to the extent it is possible. If the new property owner allows it, great. If not, I think you can come up with something meaningful to you and your family.

Take good care of yourself during this time. Your integrity will lead you to doing the best for your mother and for your family.

[formflier]

 

Where will you be (physically) during the Zoom meeting?  What options will you have for self care/healing after the call.

Please think that through now, even if you feel "fine" about it at the moment.

Sorry it's come to this.   

Best,

FF

[GaGrl]

I'm so sorry, Turkish. I've been having similar conversations. Fortunately, my mom has a Living Will, and I have a Durable Power of Attorney. That doesn't make the conversations any less painful.

During the Zoom session, what can you ask and find out about what her hospice and end of life will look like? That is important to know, I think.

[beatricex]

Hi Turkish,
First of all, you sound very stong and grounded.  That is important to note, for you well-being.  You calculated the distance and it just barely doesn't meet.  There's your answer.  As far as friends, coworkers, etc...well, you know how to answer this one too, it's what we've been doing most of our lives - finding an explanation that's acceptable to those who don't understand Mental illness.  I'm sure you will do great with that too.

Your kids, now that's a harder thing to find the right space, the right voice, your voice.  Be strong, be kind to yourself, be honest and be wise.  Wouldn't you want this if you were them?  You deserve this too afterall, she's Your mom, and you have had to (in some ways) raise yourself due to her mental illness.   I do think kids absorb a lot, and they know, without knowing, some things. 



b

[Turkish]

ff- beer   

I'm stuck at home this week (my work isn't happy, I'm sure because I work in a lab and maybe only 20% I can WFH or by phone). The kids were exposed to their aunt last Sunday who felt sick Monday, isolated, and I found out Saturday morning tested positive for covid. The kids got tested today and i get tested tomorrow. I guess I might be home for the zoom meeting as my work blocks it on their laptop, even not by VPN.

I found out my mom will receive hospice in the same home. A spiritual advisor called me today to see if it were possible to set up a zoom meeting with my mom since chaplains were not allowed on-site due to the virus. I said that it wasn't likely possible or helpful.

The Plan B burial site is on her ex husband's 3 acres in another part of the county. I think that it has back taxes due, a lot less than my mom's 5 acres i let go in March. I need to check it, as that might be worth rescuing. Unlike the 7 months I spent on my mom's property until I graduated high school, I lived on the 3 acres for a few years in a camper.

I still like the idea of a late night commando raid, but I don't want to get shot. I still have the number of her neighbor who wanted her property. I can ask him when the time comes.

I hope The Lord takes her home soon. She's suffered enough.

I'm also thinking I need to shore up my own plans so my kids don't have to deal with ambiguity.

[bethanny]

((Turkish) ... praying for you and your family.

Best,
Bethanny

[GaGrl]

Turkish, you will learn a great deal about how to pay out your plans to help your children. We thought we had all in order with out POAs, insurance, Living Wills, and estate wills when we married almost 15 years ago. Things change, circumstances change. We are revisiting everything now.

[zachira]

Turkish,
I have read your posts about your relationship with your mother for the last 3 years. You are a kind caring son who has done everything you can to help your mother, despite how badly she has treated you. With a disordered parent, their last days on earth and some of the years after their death, can be the most painful and cause a great deal of emotional upheaval. It seems that disordered parents often have ways of making their leaving and what is left to settle after they pass away so difficult and emotionally draining. Normal parents often want to make their deaths as easy as possible for their children, and do the things that would help their children to heal from losing their parent. I am wondering if the possibility of not being able to bury your mother on the property she once owned, is bringing up feelings for you that you can never please your mother, no matter what you do. You have done far more for your mother than most children who have been treated the way you were, would have done. You have also bent over backwards to be decent to the mother of your children, despite how badly she has treated you. Can you give yourself a pat on the back for doing the very best you can for your mother, and being your best self most of the time, despite the trying painful nature of your relationship with your mother?

[Cat Familiar]

So sorry, Turkish. 

It’s never easy, but all the obstacles with Covid make things far more difficult.

I know you will send her thoughts with love in your heart, even though it will be at a physical distance.

[Turkish]

I am wondering if the possibility of not being able to bury your mother on the property she once owned, is bringing up feelings for you that you can never please your mother, no matter what you do.

I hadn't thought of that, but you raise a good point.

I'll do the best I can do, and the 2 acres is an option. I might even contact the county to rescue that property from unpaid back taxes. My mom took $10k from my friend and his dad years ago because they wanted to purchase it. I think that was over 15 years ago. I remember she telling me, "they never gave me any money," and I was aghast. When it looked like the deal was dead after she denied they gave her money,  they stopped paying taxes.

My buddy is my executor, and I designated him a percentage of my retirement plan worth far more than the property, yet to this day, it still bugs me my mom did that. It's strange that I feel so bothered by it.

[Cat Familiar]

Real estate in rural Northern California is selling like you wouldn’t believe. It might be a good investment.

[formflier]

Hey Turkish.

If you pay the back taxes, you also need to make sure you have a pathway to get control of the title yourself.

Best,

FF

[Turkish]

The property isn't for me, the money isn't the issue. It's the honor (thinking Worf from TNG star trek). I would agree to the original terms. 

There's a thing if you pay taxes that you can claim a property. I'll look into that...

[Notwendy]

Turkish, I agree you have been a great son and father. I understand the wish to clear up the Karma between her and your friend.

I understand the wish to do "the right thing" for a disordered parent. They are still our parents regardless and it's about our own principles not them.

I felt that way about my father. Even after his passing, I wanted to "do right for him". He had several sentimental items that I wanted to get to pass on to my children- for the sake of his memory.

I can identify with not wanting the property. I didn't want the possessions for me personally- I wanted to pass them on to my kids.

First you can make the arrangement right with your friend, but If you were to gain any profit from the property eventually, it can go towards your childrens' college, or car, or downpayment on a home- something they will need in the future.

[Cat Familiar]

I don’t know how it works in other counties, but in mine, if property taxes aren’t paid for a certain number of years, the property is auctioned off to the public.

If you have the APN number, you could probably see its current ownership status online.

[Turkish]

I did look up the 3 acres, I need to do it again soon. I let it lapse due to covid. It would be worth more than $30k on the open market, but I'll abide by the original agreement and likely less. That family did so much for me back in the day and my buddy's mom, taken young by a massive stroke a few years ago, was instrumental in putting my on the path I followed.

We had the ethics committee meeting by zoom today. It was me the hospice manager, the hospice nurse who sees my mom, her care team at the facility (a doctor and two nurses)  her county conservator and the county lawyer.

At the end, the lawyer said that the POST/DNR form was not legally binding because my mom didn't sign it even if i signed it knowing what my mom wanted. I said that i was told to sign it since my mom wasn't of mind enough to do so. She went on to say that the county's position was to defer to what her doctor suggested. Lawyerese!

https://www.compassus.com/for-caregivers/what-is-a-post-or-polst-form

Prolonging life means extraordinary measures of my mom codes. She already fell and broke her hip last year and didn't take well, too the rehab so is confined to a restrictive wheelchair (I forget the term used).

I said that if CPR were performed, it would break her ribs, right?  I recert myself every year. They responded that was correct and that she wouldn't recover from that. She already aspirates and had pneumonia last year.  She's on a puree diet.

In the end, I asked the doctor how long? She responded weeks to a month. Though I'm not allowed to visit they all implied that if she were close, they'd call and likely allow me to say goodbye, especially given my distance. Just under 150 miles. They also will set up a zoom call with my mom.

The hospice supervisor later called me to ask what I thought and I mentioned the lawyer. Her view was similar to mine: CYA lawyerese though we didn't use those terms. She said that this happens a lot and that DNRs even change when health changes and that children often have to sign off the changes.

[formflier]

How did you feel after the meeting?  Are you "processing" all of this?

Best,

FF

[Turkish]

How did you feel after the meeting?  Are you "processing" all of this?

Best,

FF

I feel for my mother and am sorry she's in a lot of pain. From a detached point of view, I hope this story is helpful to others.

One other thing: the conservator also purchased funeral insurance (i forget the exact term) with my mother's SS money, so I won't have to worry about that, not that I was as I was expecting to take care of it. I'm grateful for all that the professionals are doing.

[GaGrl]

I have found that my mother's doctors and the hospital are very, very careful every step of the way. Mom had a colonoscopy yesterday, and even though she had consented, I got a 7 AM call requiring me to verbally consent to two different RNs.

The door to my mom's hospital room has a large DNR sign on the door.  Doctors have verbally confirmed her DNR wishes at least three times in my presence. During her aspiration pneumonia, that meant no possibility of intubation. She pushed through the pneumonia.

I'm sure some people change their minds at end of life. I am grateful my mom has a clear mind 90% of the time (she is fuzzy when she first wakes and again before bedtime), and that she has been consistent. One doctor kept talking to me, and I had to tell him that Mom was quite capable of making her own medical decisions, and he needed to talk to her -- we were all in the same room.

Be very good and kind to yourself over this next period. We are on Day 26 of Mom's hospitalization, and I've at least been able to be there every day for limited visits and, in some cases, advocacy. But I can feel myself tiring, and it's not physical, except for disturbed sleep.

[Kwamina]

Hi Turkish my old wolf friend and honorary parrot 

I am very sorry your mom's health is deteriorating and that she's in so much pain now.

Glad to see you sharing what you're going through, can indeed also help others, but perhaps most importantly, it allows others to support you. Even if it's just by providing a listening ear in these unusual times.

Take care my friend

The Board Parrot

[khibomsis]

Dear Turkish, you were such an inspiration during my first round on this board. Your kindness to a stranger has never been forgotten. I pray that all that good karma is coming back to you in your dark hours. Hugs, Khib

[Turkish]

Thank you. They called me the day before yesterday and said my mom tested positive for covid, but that it didn't seem to be worsening her condition. My buddy may have had a point that living in that filthy hoard house for over two decades boosted her immune system.

[Kwamina]

How is your mom doing now Turkish?

She certainly has proven to be quite resilient yes.

How did your mom get that deep leg wound?

The Board Parrot

[Turkish]

My mom's hospice nurse called me this morning. My mom was doing well, and now not so well. Pneumonia is a concern given her positive covid Dx. She's refusing food. They put her on a light morphine drip since she's unable to communicate her pain level. The nurse remembered my story on our zoom call how my mom was angry over 30 years ago when my coworker and friend had brain cancer and her medical team didn't want to prescribe, my friend too much drugs in case she got addicted. Ridiculous.

Yes, I'm sad, and I can't visit. I feel a little guilty for not visiting the 10 or so months before covid though my mom indicated no memory of who I was. I just hope I can bury her with her last wishes on her property next to her husband.

[Notwendy]

I am sorry Turkish. It's tough. I hope you can have peace of mind that you did all you could to help your mother. I think we all wish for the kind of relationship we could feel we achieved the kind of closeness and recognition we want, but we can only do the best we know to do - and you have certainly done all you can from what I can see in your posts.

I think I can relate, because I wanted this kind of assurance from my Dad who didn't have BPD but was so enmeshed with my mother, I don't know if I could get this from him. I take consolation from the faith that no effort, no love is wasted, even if it isn't perceived, perhaps he could perceive it now.

I know you are also a man with ethics and faith. I think in some way your mother will understand that. I think sometimes we judge ourselves strictly. You have certainly extended grace and compassion to your mother.
In this time, I think you deserve to extend some of that to yourself as well. I wish you peace during this difficult time.

[Turkish]

Thanks Notwendy.

I texted my mom's neighbor last night. He said the property goes up for sale on March, so I guess it may have been delayed a year due to covid. He's going to try to buy it. That's good news as I'll have access to carry out her last wishes to bury her near her husband. I still wish that she hadn't ruined the memory of the man who helped us and took us in homeless when I was 13, the closest person who acted as a dad to me, by telling me he had molested his daughters. He took me fishing, helped fix my dirt bike, gifted me my first rifle, and seemed proud of how I ended up. 

The neighbor told me that a girl had come to get things from the house. He called the cops. She said she had permission and it was OK. No she didn't. I think it was the then little girl of the Traveller like family my mom took in about 15 years ago. That ended badly, as did most of the people my mom tried to help.

I've always been sick of the people my mom befriended and helped who ended up stealing from or taking advantage of her.

[formflier]

Hang in there Turkish.

It is certainly good news that a neighbor is going to try and buy it.

Who owns it now?

Best,

FF

[Notwendy]

Turkish, maybe this is typical of us children of disordered parents. I also wish there I could have done more for my father, to protect him. The problem was, I wanted to protect him from my BPD mother and he would have none of that.  I understand that this was probably one of the most stressful moments for them- dealing with him being ill, but they both directed their anger at me, and there was only so much I could deal with.

I also felt some comfort in that he was burried according to his wishes and I played a part in advocating for that as much as possible. I hope you can do that for your mother as I think it will bring you comfort as well.

My mother also surrounds herself with people who have stolen from her. She is very controlling with her children about any material possessions. We don't want money or valuable things from her for financial gain.  If anything, we would want sentimental items. But she won't let us have them. Now, many of them have been stolen as well as money from her. I have no way to control her decisions, and you could not control your mother's decision.

As to memories, my mother has also said some cruel things to me about my father and I finally told her I would not speak to her about him.  I know how much good he did for us in these tough circumstances. I know how much you appreciate what this man did. Since a BPD mom doesn't have the same dynamics with their partners, it's possible they don't see it that way.

You can still keep your good memories and in addition, you can do good in his name.  One idea is to "pay it forward" maybe not in the same way- you don't have to take in homeless people, but you can donate to help them, or a charity that helps children in some way in his memory. I think this can bring you some solace.

Lastly, Turkish, you are the sum of the people who raised you and you are a good person. You are their greatest legacy. Continue to be the good person you are and that honors them. But also if you have taken on some co-dependent tendencies from how you were raised you can let go of them, and take care of yourself too.

[PearlsBefore]

I'm sorry to hear things are coming to their natural end, albeit in such an unnatural year. It's good that the final stage seems workable - meanwhile just remember it's possible (I really have no idea) that the BPD symptoms will remain even in the cloud of dementia/senility/drugs. She may still fear everyone hates her, or that she's been abandoned, so it's worth considering some cheesy "You were always an inspiration to everyone and we all love you" gesture even if she won't understand the relationship of the person saying it. 

Per the eating, is it possible to just arrange a nurse to bring her a box of chocolates or something similar? Sure it's not health food, but it may tempt her to nibble and enjoy herself and forget about her plans of starvation.

I sympathize with your frustration, I lost a dear relative who was elderly with multiple organ failure and given a month to live...but relatives argued it was disgraceful that the care home allowed her to have painkillers in the middle of an opiod epidemic because she'd become addicted. So often it seems even healthy people aren't able to understand the death is not about themselves.

[Turkish]

Thanks Nw.

That's really an odd reaction to palliative drugs. But you're right that there's often not clear thinking in such situations.

The county owns the property now.

[Cat Familiar]

Have you considered that what she told you about him may not be true?

My mother told me a variety of odd things as she was beginning to become cognitively impaired. And I think some of the things she told me when she had all her faculties are suspect too, such as my dad cheating on her when he went to night school.

But the lie/fantasy that really got me thinking that she was unhinged from reality is when she told me that she and her neighbor, who was a widower, had flown to Europe for a day.

She was adamant that this had really happened. And this was before she was obviously cognitively impaired.

[formflier]

Plus, you need to consider if statements like (whatever it is) are consistent with who they are or a complete change.

It turns out that some of my Mom's odd statements and reasoning were "markers" that vascular dementia was taking hold.

She is still in the "mild" stage, but it is undeniable.

Best,

FF

[GaGrl]

During my mom's recent illness, she had vivid dreams and had difficulty telling the difference between what happened in a dream and what actually occurred -- especially just after she woke up. I'm sure some of this were the drugs being used to fight off her pneumonia.

As to the eating...we were told when my dad moved from home health care to home hospice care that one of the markers for hospice was when the patient quit eating. It is a natural progression toward death, and trying to force eating is more for the family/caregivers than for the benefit of the patient. I learned a lot from Dad's hospice nurses -- they are angels.

[Turkish]

I have the feeling it might be true. She told me like 15 years ago. His wife left him for his brother and then was murdered by a subsequent lover. He raised the kids on his own. The eldest daughter went to prison for dealing coke (I met her once), and her younger sister struggled with addiction. The eldest boy seemed OK, but he was alienated from all of his kids.

When we lived on his property with another family who lived in a converted bus, the 12 year old girl and he seemed a little too affectionate. She was well developed for 12/13. Me at 13 picked up on it.  My mom didn't see the cuddling I saw (her mom was weird and her mom's boyfriend was annoyed by her kids, not a father figure at all though he liked me, an old soul) but she picked up on something. That family moved to Nevada. Later, we found a topless painting of a girl who looked suspiciously like that girl.

My mom later told me that she hated that painting (20 years ago). I never wanted to discuss, "it looks very much like... (that girl)."

[Turkish]

The county guardians office called me an hour ago to tell me my mom died. I told her that it made me rethink my end of life plans and she thought so for herself.

Just now, a representative from the hospice called to tell me the same thing. She was more business like and perfunctory.

I'm sad, but glad or thankful my mom isn't suffering anymore mentally and physically.

[SepiaScarf]

I am so sorry Turkish, I hope that you are able to find peace as well.

[Notwendy]

Best wishes to you Turkish and I also hope you find peace for yourself. Her memory will be honored in the good you do. Please include yourself in that good. Take care.

[zachira]

You do not have to worry about your mother suffering anymore. You have been a kind caring generous son and I hope you can give yourself a pat on the back for all you have done for your mother. Clearly your feelings are mixed about your mother's death as it was a challenging relationship. My condolences and heartfelt wishes for you to grieve the sadness with some comforting feelings as well.

[formflier]

Turkish,

Praying for you.  

 Her memory will be honored in the good you do.

Please find rest in the truth of Notwendy's words.

Best,

FF

[GaGrl]

My condolences, Turkish. These are such complicated relationships, with complicated emotions interwoven.

We do live on in our children. You do honor her in the good you do.

[mggt]

So sorry to hear of your mother’s passing. 

[Methuen]

My condolences Turkish for the loss.  So many complicated emotions, since we children of BPD parents also mourn for the relationship we always wanted, but which wasn’t ours to have.  Like others have said, your goodness will carry forward to others  in your life through  your actions.  Take especially good care of yourself through this time.

[I Am Redeemed]

I'm sorry you're going through this, Turkish. Grief is hard, even when the relationship was also hard and complex.

As much as I was sad (among other emotions) when each of my parents died, there was also a relief that I no longer had to feel bad about their suffering, and though my parents were both mentally ill in different ways and never were the parents I needed, I still grieved not only their passing, but the relationships I had with them (and the ones I wished I had).

You demonstrated great care and integrity towards your mother. You're a good man. I hope you can take time for some self care during this situation

[khibomsis]

Deepest sympathy Turkish. She is at peace now. May you find peace too.

[Turkish]

Thank you all 

I talked to the hospice supervisor this afternoon. I missed a call by the county guardian, but she left me the mortuary contact. She said that the funeral plan would cover most things but that the family would be responsible for other charges. I messaged one of my BFFs to get his opinion on what it might be though he's a funeral director in Washington, not Cali.

The hospice supervisor said that their bereavement support would reach out. I thanked her for all that they did. I don't think that I need it,  but as my former family therapist observed. "You have a healthy disrespect for my profession." Maybe, I don't know. 

I'm glad that her property isn't sold yet so I can carry out her last wishes.

[formflier]

 

Who is making decisions about funeral items? 

Having gone through this in the last several years, it was made clear to me ahead of time what the charges were, I signed for them before they were spent and then wrote the check after it was done.

So, I'm not aware of any situation where you will be "informed" of what you owe  (and perhaps I've misheard). 

I've personally done this and have "walked through" the process with friends and family and there were always choices (albeit unpleasant ones).

Maybe you can clarify via email.

Best,

FF

[Kwamina]

Very sorry to hear your mum has passed away Turkish 

Her suffering, both physical and mental, is indeed over now. Though the circumstances have been difficult, and the way she treated you quite hard to handle, this still is a significant loss. She was still your mother and you certainly have cared for her in an exemplary and admirable manner 

How are your kids? Have you already told them about their grandmother?

Take care Turkish, sending you peace and strength in this unusual time of loss 

The Board Parrot

[Cat Familiar]

So sorry about your mother’s passing, Turkish. 

As difficult as she was in life, as time passes, those memories will diminish and some very precious, long forgotten memories of kindness and love can re-emerge.

[Turkish]

Thanks everybody.

I told the kids that she was at end of life. I haven't told them she died yet. If they can process her remains by next weekend, I might take the kids to pick her up and then bury her. The distance, depending upon route, is just within the 150 mile covid demarcation radius so I'll be good, not that I'd let 151 miles stop me.

My mortician friend said it could be anywhere from $1k to $3k. I really don't want to hear anything from my ex. She kind of judged me about my mom though she didn't like her. What would my response be? "One less person on the planet that 'irritated you."

I called the funeral home today, but there wasn't even a message service which is weird. I've helped my buddy pick up bodies and unless he's on vacation, he's on call 24/7.  I'll call Monday during business hours.

[Woolspinner2000]

Hey Turkish,

I am so sorry to hear of your mom's passing. I know from all the years here on the board of how hard it was. Grief is tough, and you are grieving many things. You were a good son.  to you.

 
Wools