Follow
Share

My mom was diagnosed with Parkinson's on May 4th, she tried medication for 3 days and then my stepdad called to say my mom was choosing to die by hospice. The only words my mom spoke to me was "I'm on my way out and you can't stop me!" My mom had been extremely depressed, anxious, and suicidal the month before (and her entire life). My stepdad refused to get her psychiatric care. I am in a different state and have called her doctors, the sheriff, Adult Protective Services, Hospice, my mom's siblings.


My stepdad has told hospice not to give me any information. He and my mom both lied to any professionals about her stage of Parkinsons (only very early stages and could be very treatable) and has shut out anyone who doesn't agree with her. No one is stopping this. I am an only child and have dealt with my mom's mental illness my entire life).


I overnighted my mom a card telling her I love her and am thinking of her. I do not want to try to talk to her on the phone. My stepdad thinks I am not being loving and compassionate by disagreeing with this. I do not want to go there and plead and argue with him or my mom. Her siblings all went to say goodbye to her and don't understand why I won't call her up to say goodbye. She is having her body donated to science so there won't be a service. I am seeing a therapist and have a very supportive spouse and friends. I am so sad about this, that I couldn't stop it, that my mom is choosing this early death, and that I am being seen as an uncaring daughter in this.


Has anyone ever dealt with a parent choosing to die without having a terminal condition/late stage cancer/etc?

I don't know anything about Parkinson's so I defer to the other advice on that front. I do know (too much) about having a mom with lifelong depression and mental illness. If you were raised to be her emotional caretaker, told you were responsible for her happiness or sadness even as a young child, then of course you are going batty trying to do anything you can to prevent this latest threat of suicide. Maybe you have already been down this road, having to deal with a lifetime of suicide threats whenever you didn't do what she wanted.

Start by disregarding anyone and everyone who suggests you're doing the wrong thing, and if you loved her you'd do (something else, who knows). Maybe you just know more about what to expect from her than the know it alls. This is a crappy situation and I'd be mad as hell if I was being manipulated by threats of suicide and then belittled when I took those threats seriously. One thing I do know is you can't force a mentally competent (as someone said the bar is LOW for mental competence) adult to do anything they don't want, including eating or drinking. Please take good care of YOURSELF during this terrible time, especially if you're the only one looking out for you, and try to detach from her decisions. No matter how her decisions make you feel.
Helpful Answer (0)
Reply to Slartibartfast
Report

Sorry, this has probably been covered but too many long posts.

I don't see how Mom could get Hospice in the early stages of the disease. A schoolmate of mine has suffered with Parkenson's for over 20 years. Up until recently was fairly active even with needing a walker. He now is suffering from Dementia. He is 72.

I can't see Hospice supporting someone who is trying to commit suicide. They do not assist in suicide.
Helpful Answer (0)
Reply to JoAnn29
Report

Diane Rehm's husband who had Parkinson's did this in 2014. She has spoken and written about it extensively. Please google her name. You should now talk honestly with your Mom, and let her know you SUPPORT her choice if this is her wish, but you cannot bear the thought of losing her. And it is my opinion that if you truly love her you will do all you can to visit with her, tell her your real feelings. I have already spoken with my own daughter about my choice to exit this way if I have no illness that will give me final exit privileges with physician help (now legal in California if you have your diagnosis of a disease that will give you fewer than 6 months to live, but not legal for something like Parkinsons. I have already asked my daughter to help me and she agrees). One woman in New York has filmed her mother's last days exiting by this method when her osteoporosis was too painful to live with and all her friends gone. To me this is an honest choice. However, it should be discussed, say with the folks of Final Exit (look then up, google or look on Facebook). There are a few days when the body is shutting down that there is some confusion that truly requires sedation, an would be very frightening for those unprepared. As a retired RN, yes I am familiar with this choice. There are many in the world MAKING this choice when life has become for them too painful.
There are things your Mom and Dad need to know. This isn't something to be taken lightly. If even minimal sips of water are taken this can go on for torturous months and I don't think it should be done without discussion, research, and yes, without your Mom's doctor being aware, and with a psychiatric exam. There are many things that can help with pain and despair. Many medications.
Please do your own research, and then visit your Mom and discuss all you have learned. That is a way you can help her no matter her final decision.
And do look up Diane Rehm, who has, since 2014 worked so hard to foster right to die laws in our states.
Helpful Answer (1)
Reply to AlvaDeer
Report

Parkinson's is NOT a fatal disease. Just ask Mr. Google. Or how about asking one of the several Parkinson's organiztions for ACCURATE information? It's bad, but not fatal. Come on people, let's not make things worse with misinformation. And as I have mentioned in other posts, I am a "Parkie " myself.
Helpful Answer (1)
Reply to vegaslady
Report

My mom recently died in hospice with end stage Parkinson’s. You say that your mom has early stage Parkinson’s disease. I find it hard understand that they accepted her into hospice if it is truly in the beginning stages.

Mom had Parkinson’s disease for a very long time. She lived until 95 years of age.

I am so sorry that you going through this. It’s very sad.

Hospice will not speed up death. I suppose that you are more concerned with her not eating. Parkinson’s disease is controlled with meds but there isn’t a cure for it. Maybe she doesn’t want to reach the end stages of the disease which is dreadful. I know that my mom was ready to die long before she did. She would often comment that she didn’t know why God was allowing her to live so long.

As far as a service. You can still have a memorial service for her. My uncle had his body donated to science and we had a memorial service for him in the hospital chapel for him.
Helpful Answer (0)
Reply to NeedHelpWithMom
Report

I'm sorry you're having a hard time with your mom's choices. But, it is her choice. Parkinson's gets worse and worse.

I am 50 and not seeking treatment for a rare blood cancer. Any treatment would only "buy" me more time, not cure me.

Refusing treatment does not mean one is suicidal. It can mean we have come to terms with our mortality, do not want to drive our families into debt, or simply choose not to prolong our demise.
Helpful Answer (8)
Reply to mollymoose
Report

I'm sorry about your mom's diagnosis and the pain she's experienced for most of her life. However, she couldn't have hospice unless her dr ordered it - and patients don't qualify for hospice unless their death can be expected in 6 mos. - that doesn't mean that all hospice patients die within six months some live for a few years while on hospice and some graduate from hospice because their health improves enough that they no longer qualify for hospice services.

Hospice doesn't use euthanasia on their patients. They care for the whole person - body, mind, spirit. They also care for the family and educate them. I so appreciated the hospice provider that cared for my dad and if it comes to my mother I will use hospice again in a heartbeat.

If her diagnosis is for more than six months, then has she chosen not to actively treat her parkinson's, but instead is pursuing palliative treatment where she is kept comfortable and free from pain?

Most people will eat and drink when hungry and thirsty - however as death approaches people eat and drink less as their bodies shut down. Dad was literally skin and bones when he died. He continued to eat when hungry, though it was very little and he continued to drink though very little.

Parkinson's is a terminal disease - and I admit I don't know an awful lot about all the ins and outs of the disease - just that it is terminal at some point. Your mom is 72 and does have a right to face this disease her own way and if she is pursuing palliative or hospice then she is making a rational decision (these treatment choices are not an act of suicide). And as long as it is rational decision, it is her right to make it.

I am glad you are in therapy and have support of your husband and family/friends. I urge you to learn more about Parkinson's, and what you mother is facing. I also urge you to learn more about palliative care and hospice services. Right now you are grieving for your mother. Please try to accept and respect your mother's decision to meet life and death on her terms.

I pray that you and your family are blessed with grace and peace.
Helpful Answer (3)
Reply to cweissp
Report

You haven’t seen your mother or talked to her in person. You seem to be the only one involved who doesn’t think this is a reasonable choice. Perhaps other family members have seen more of the progression of Parkinsons, and that’s why they think it’s a reasonable choice.

You are trying very hard to rock the boat from a distance. You ‘do not want to go there and plead and argue’. The chances are that you haven’t talked (not argued) with her siblings about why they are accepting it. You are also very unhappy about being regarded as ‘an uncaring daughter’. You can see that you are alienating yourself from everyone in the family, and clearly it is very difficult for them to deal with the stream of agencies that you are asking to intervene.

If your mother has been ‘depressed, anxious, and suicidal ... her entire life’, perhaps this is her 'suicide of choice'. It is almost impossible to stop a determined suicide who does not have permanent supervision. In any case ‘die by hospice’ may mean nothing more than refusing the Parkinsons medication and opting for comfort care – not that a Hospice agency is actually involved.

If you don’t want to go and deal with this personally, it may be that your only real option is to let your mother make her choice, and let yourself accept it.
Helpful Answer (1)
Reply to MargaretMcKen
Report

My MIL, with dementia and likely lifelong mental illness (I didn't meet her until after she'd been dxed with dementia for several years) decided to starve herself to death after she had open heart surgery.

She was determined to die and didn't need hospice services until the very end.

If your mother is technically competent (it's a very low bar) there isn't anything you can do to prevent this. I know; my husband tried.

His two brothers (one of whom held POA) were determined to allow their mother to have her way.

By the way, MIL's mom died the same way, by self-starvation. So I guess it's a "thing".
Helpful Answer (1)
Reply to BarbBrooklyn
Report
Isthisrealyreal May 28, 2021
That generation, from my experience, has the viewpoint that if you don't eat you die. If you eat, you live.

Most of the 80+ people that I know have incredible appetites, until close to the end.
(0)
Report
I live in Canada where we have Medical Assistance in Dying. My Mum and I have had frequent conversations about what Mum wants at the end. We have a family member who chose MAiD and we supported that.

My godmother is a wonderful woman who has done all the prep to enlist MAiD when the pain from her bones breaking and her heart disease gets to be too much. I fully support her too.

Ridoride, it is your job to support your Mum and step Dad, not to create chaos by calling the sheriff, APS, other family members etc.
Helpful Answer (4)
Reply to Tothill
Report

Hospice is not a death sentence, as many people seem to think. They do not 'euthanize' people; they simply allow nature to take its course and provide medication to control pain & anxiety so the patient doesn't suffer in any way.

Hospice has to be warranted and ordered by the doctor, and the hospice organization has to do an evaluation to determine the patient has 6 months or less to live. Then they will agree to take the patient on, and to administer care during their end of life journey.

Your mom & stepdad cannot 'lie' to the professionals about your mother's health. Again, the hospice organization makes the determination as to whether a person has 6 months or less to live and only THEN will they accept the patient. My mother is 94+ with advanced dementia and STILL does not 'qualify' for hospice b/c she's too fat! She isn't losing weight, so the terminal dementia is not enough to get her qualified for hospice. So you see, it's not so easy to get onto a hospice program that Medicare will pay for!

Your stepdad may have 'refused' to get your mom psychiatric care, but your mom herself CAN get psychiatric care if she wants to. With a lifetime of mental health issues under her belt, she may be too tired and burned out now to go that route, which is her prerogative. We children can't make decisions FOR our parents in situations such as this, much as we'd like to.

It's your mother's right to choose her own destiny, as MJ has said. Why do you feel that you have the right to stop her from wanting to end her journey here? She's probably exhausted and fed up with constantly being sick and having so many issues. That's where my father was when he was ready to accept hospice services back in 2015. He passed 12 days later because he was ready to transition to the next phase of his eternal life. He was tired, and I was on board with it, even though I was sad to lose him.

Why don't you go visit your mom and let you know you're okay with her decision? Not to 'plead and argue' your case, though. Just to tell her you love her and support her decision, period. You're not happy to lose her, of course, but you understand. Work on acceptance of what is instead of what you'd like things to be. Going there for a visit may give you a clearer understanding of exactly what's going on, too, which seems to be a bit unclear at the moment. There's usually more going on than meets the eye or ear in such cases, especially when your siblings are all in agreement that hospice is the right course to take here.

And, who knows, your mother may change her mind and decide to discontinue hospice services some time in the near future. She can do that, you know.

Wishing you the best of luck reaching a place where you can accept your mother's decision.
Helpful Answer (4)
Reply to lealonnie1
Report

"Very treatable" versus delaying the inevitable. Parkinsons is terminal: "Parkinson's disease can't be cured, but medications can help control your symptoms..." (source: https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/diagnosis-treatment/drc-20376062). Read about the trajectory of the disease and all the chaos it wreaks on one's body and mind and maybe you'll better understand your mom's decision.

Depression in the early stages is common but I agree with MJ1929 that if she qualifies for hospice she may be worse than you thought or maybe even has some other medical malady going on. Donating her body to science doesn't mean her husband won't have a celebration of her life at a later date, but even if he doesn't, you and your siblings can certainly have one. I'm so sorry that you are losing your mom so early. May you receive peace in your heart to accept whatever comes to pass.
Helpful Answer (2)
Reply to Geaton777
Report

I don't blame her for wanting out with this diagnosis. Western society promotes fighting to live at any cost. It goes against most of our programming to not do everything medically possible. It also sounds like your mother is tired of fighting the depression she has had all her life and sees this as a way out without committing suicide. Just letting the disease take her. Plus medications have their own nasty side effevts which is why so many elders are takung so many meds to combat the side effects of other meds.
Helpful Answer (2)
Reply to sp19690
Report

I’m so sorry.

Yes. Hospice needs a doctor’s order. My mom needed one.

Let us know how you do. We care.
Helpful Answer (4)
Reply to cxmoody
Report

She does have a terminal disease and is choosing her destiny. It's very sad, but perhaps she doesn't want to live with Parkinson's and all that goes with it. She may change her mind, and she may not. Unless she is legally incompetent, I don't think anyone can interfere.

She can't just opt for hospice with only early stages of Parkinson's, though. Her doctor has to order it, and I don't know if he'd do that.
Perhaps there's more going on with her than you know about if all the siblings are going along with this.

I'm truly sorry, but at some point you'll have to come to the realization that it isn't your job to keep your mother alive.
Helpful Answer (6)
Reply to MJ1929
Report

Ask a Question
Subscribe to
Our Newsletter