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Topic Depression for our PWP vs Robin Williams's Ending? Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2014.08.13 17:21
This has been on my mind a lot these last few days, as it has been for many. So many questions go unasked and unanswered...So, here goes...

Robin Williams abused drugs, alcohol, and depression. That is well-known. He tried to pull himself out of his depression, but finally succumbed on Monday.

This makes me ask those of you who have dealt with depression in yourself or your PWP... It seems every time a doctor or specialist has an appointment with Carl, he is asked, "Are you depressed or anxious?" "Do you need more medication to alleviate the symptoms?"

Is depression in a PWP the same, or worse, than someone who does not have PD? Will it worsen and no one notice or do more than just medicate? And, the hard PWP become so depressed that they contemplate suicide?

No one really talks about the problem, or worse, what can be done to help watch for worsening symptoms. Our collective hearts break for a man who seemed to have it all, but whose despair overwhelmed him in the end. If a man who made us sometimes laugh to tears cannot win the fight against depression, what can WE do?

I really do not want this post to be a downer or cause undue concern...I really want answers, and so far, no one seems to say more than, "Depression is part of 45-65% percent of all PWPs' journey." That answer is no longer just a needs to be answered and resolved...and who better to ask than those who deal with it and face it throughout the course of PD. Hugs and love to you all, Jane
PS--I do not want to worry anyone, but if not here, where is it safe to start an open dialogue?

By makrivah On 2014.08.13 19:09
Jane, I have no answers for you. But would like to add something to your observation:
"This makes me ask those of you who have dealt with depression in yourself or your PWP... It seems every time a doctor or specialist has an appointment with Carl, he is asked, "Are you depressed or anxious?" "Do you need more medication to alleviate the symptoms?" "

My PWP is very self-UNaware. He wouldn't recognize whether he is depressed or not. Having the doctors ask him to self-diagnose is utterly ridiculous and frustrating to me. In my humble opinion, he IS depressed. I've shared my thoughts with the doctors, but since my PWP voices no concern, nothing happens.

Does anyone else feel trapped in this Catch-22?

By LOHENGR1N On 2014.08.13 23:17
Jane, you ask questions without any answers or at the least very hard answers which raise many more questions trying to answer.

First is depression worse with PD, can't answer I have PD. I can't. Base anything upon not having PD. Can depression in PWP lead to thoughts of suicide. You can bet your sit down it does. You cannot imaginge nor would anyone with PD want you to know how it feels to daily have to rely on medication and it's whims to be able to function. You're right it is worrisome. You ask if closer watch is needed, I can tell you what isn't needed to have used everything you've got to get to a chair or the comode to archive the goal only to be told you have to exercise more. To exte d more e edgy than one can imagine have your vocalization waining and be told you don't care or never converse anymore. To be asked over and over what did you say. To be expected to maneuver over to another room not knowing if you'll make it because you can't be heard and if you don't to hear you never do anything for yourself you know if you exercised you'd feel better. And people wonder why we decome depressed. To be robbed of say in who is hired as a Careiver for you and be told you'll just have to get used to them. Yes we get depressed and those who don't get depressed often spend our days fighting the disease along with fending off depression like Don Quoxtie tilting at windmills. I've more to add but too much typing for me right now so I'll continue this later..

By jcoff012 On 2014.08.13 23:24
To be honest, Carl's great neuro TOLD him he was depressed and showed clear signs of anxiety...on his first visit. He prescribed meds which he takes at bedtime.

I, too, knew he was depressed, but who wouldn't be after the bad several years we have endured?

But, to be honest, we read and read about depression and anxiety, but no one REALLY openly TALKS about it...and to me, that is scary...makes me wonder when it is appropriate to intervene between the PWP and the doctor...although, to be honest, his doctors DO ask me, too, if he shows signs...and I believe it is because I reacted to his initial queries that the first meds were diagnosed...

By jcoff012 On 2014.08.13 23:36
Al, as always, I value your input. I think what I am asking truly has no clear answer, but perhaps it should be thoroughly discussed on many levels...and who can better let us know than those PWP. I truly do not want anyone to dwell on this to the point of anger or despair, but if there is something any of us can do to help, I really want to know.

As I have said before, Carl is still highly functioning...he walks daily, just finished his daily half hour of exercises, still does LSVT, etc...but, as the days go by, I see it taking longer and his stamina is waning...and it worries me to know that this part of PD will be hardest for him...Hence, the questions...You know me by now, I don't push...he decides on his own...he reads and exercises by his own pattern and desires, not mine. I just want to be there to allow him to talk when he feels the need, so if I ask the hard questions now, we both might find life easier later on.

Always, Jane

By mylove On 2014.08.14 08:45
I know my answer to this one. It doesn't matter how good or bad, hard or easy it is TODAY. For Ben, he's already told me in no uncertain terms that he WILL NOT get to the diaper/dementia/wheelchair stage. So. How is a spouse supposed to deal with that card with which we have been dealt?

He does have a fair degree of depression. He unfortunately can't take most SSRI's and has no interest in trying to find another. I did finally get him to find a counselor he likes, who us helping him work through the grief of having to quit work, and I hope that counselor can help as we get further down this path.

But there's no way on Gods green earth you can undo those comments to fully ease my mind about whether or not he would seriously consider such a solution. I know I will struggle with the issue as progression moves on. It's the elephant in the room. For the last year our conversation has been peppered with "this is my last five years" or "it won't matter what our situation is right now because in five years" or "you have to learn to live on your own because I won't be around in five years".

Nothing I say changes his conviction that at 58, he is in his last decade of life. All I can do is deal with today. I suppose this has a great deal of effect on the fact that I'm pre-grieving so badly.

Ask the hard questions. I think it's worth knowing, and I'm not sorry he feels comfortable enough to tell me up front. But be prepared that your own emotions will be affected. Hugs, Jane. This all sucks so bad it's hard to bear sometimes.

PS. Also - it's our job to watch for signs that depression may be getting worse. I'm sorry if they feel 'watched like a hawk'. In depression, you often can't tell how low you yourself have gotten. I've also played the "is this PD or is this our unusually stressful year?" and have come to the conclusion that when you boil it down to treating the problem, the source really doesn't matter that much. Watch hard, treat first, and then figure out if there are things you can change to make life better, in that order.

By carman96 On 2014.08.14 10:17
I think at first my husband was depressed about his diagnosis. Now, I doubt if he is actually depressed, since he seems to live in the moment. He does get very anxious and agitated when he gets frustrated and confused. I am questioning whether he still needs to take Celexa.
I met two ladies at weight watchers whose husband's had Parkinson's. They are neighbors and good friends for years. Both of their husbands shot themselves, at different times. It seems from their stories that it was more from failing health and not wanting to be a burden than actual depression. Which comes to the other question, does a person get to choose a right to die?
It's a scary subject but I think an important discussion to have. I imagine everyone has their own beliefs about it.

By Mary556 On 2014.08.14 15:06
So sad.
His wife revealed today that Robin Williams had recently been diagnosed with Parkinson's Disease.

By jcoff012 On 2014.08.14 17:04
Holy cow...I am almost sorry I posted the original one...Then, again, I am not...I just want to help and to understand, but do not know how. If this latest news is true, and no one is saying it isn't, how sad that Mr. Williams was so overwhelmed that he felt this was the only way out. My heart hurts for him even more now.

We have to find a way through this, a way out of the do we do it? What can we do to help?

Blessings to all. KNOW you are loved and needed. We truly are in this fight together. JJane

By ResistanceFutil On 2014.08.14 17:29
My husband just posted in another forum, and he has told me, that the depression he experienced earlier in his life is nothing compared with the deep depression that he associates as a PD symptom. Since being dx'd last year he's been on several different SSRIs and is finally on one & at the dose where he is getting some relief. This is of course anecdotal but that's all anyone on the forum can offer.

When someone such as Robin Williams, with all the financial and personal resources, and I'm assuming the best medical and psychological care available anywhere in the world, our lack of control over our loved-one's outcomes is really brought home. We can just do our best and realize the outcomes are not up to us.

By Mary556 On 2014.08.14 17:35
Information and advice from the National Suicide Prevention Hotline
and Suicide Awareness Voices of Education:

By LOHENGR1N On 2014.08.14 20:36
So many questions, was Robin on any anti-parkinson medication if so did it interact with or worsen his depression.

Does prompting one to exercise or speak up tend to depress, does constant supervision lead one to anxiety or depression. Add in that all these are personal reactions by each individual... What a mess!

Ml, I can relate to your husbands statement, I've made it myself. I can also relate to Robin Williams action, a couple of years into diagnosis I was on the cusp too and the scary thing is it is so easy. There was no fear, not of the unknown, not of pain, nothing. It seems like the next natural act, at least to me it did. What stopped me I can't say for sure.

What is known of depression is it is a chemical imbalance in the brain. So with PD tinkering to balance brain chemical s for movement we're bound to mess up other functions. I'm amazed the incidence of depression isn't higher.

The catch 22 for caregivers is do you watch us like a hawk risking depressing us more by living under that microscope or let us take risks and deal with the bumps, breaks and bruses afterward.

Yes this is a mess...I don't know what can be done if anything to rectifie the problems. All I know is I hate this disease, it robs us of everything voice, writing all communication and those who in the end still cognizant are left in a body looking out depressed at all that has been lost....damn this is depressing typing about it....but I guess one has to from time to time raise their head look to the future, then lower their head again and trudge on. I hope I haven't depressed those reading this. Sometimes frank talk can be unsettling but without it we just tippy toe around and get nowhere.

By Michele On 2014.08.14 22:47

By jcoff012 On 2014.08.14 23:44
To be more uplifting....Had a weird discussion with Carl...He said he hasn't been depressed, but he has been anxious...which led at first to a strained, weird conversation about PD, death, etc...all in a pizza place! Lolol

I am beginning to think that Robin Williams has done a great service to everyone, and there are probably a GREAT number of folks alive today who were saved by the opening up of lines of communication about anxiety and depression surrounding his death.

Heavens, there are a lot of discussions now about it all...even here...Instead of being depressed about it, I am energized to know there IS help, that my own PWP is aware it CAN become a problem, but he is comfortable knowing that his deep faith in God and the afterlife really helps him make decisions.

So, thank you all for commenting...if it helps, know that you are NOT alone, your PWP is not alone, and I truly believe we will go forward being better informed and better prepared because his death forced us to dig deeper than we have....Hugs, love and onward! Jane

By carman96 On 2014.08.15 00:28
I was so shocked to find out about Robin's diagnosis, especially after Jane had already started this discussion. I hope they do more research on depression and Parkinson's.

By Freespirit On 2014.08.15 08:37
My concern is that the media will play this so that the general public will end up believing that everyone with PD is in jeopardy of killing themselves.

By mylove On 2014.08.15 10:20
You know? I don't even care. What I HAVE seen so far has been some very good messaging about how depression can happen to anyone, what it looks like from both the inside and outside, and when and how to get help. That's a conversation that needs to happen. I know it's uncomfortable, but so be it.

I'm sorry it's going to be associated with PD, but PD was associated with it from the beginning. It's opening up lines of conversations in many houses that need to happen. Hopefully, it's helping others to remember to keep an eye on how others might be doing, even if they want to think they're doing ok.

What about someone like Al, that lives alone? If no one touches base with his world, who would be to know if he were not doing ok? If he were to be depressed to that point he might not be willing or able to reach out. It's not just those with pd. There are a great many people in the world suffering in silence. Sometimes, one person reaching out can mean the difference between making that one final choice and choosing to live.

Some poor soul tied up traffic on the bridge into town yesterday. The bridge crosses over a 150' ravine with a dry, rocky creek bed in the bottom. Unfortunately, no one was there to talk to that person until two ladies driving by saw him/her jump. My heart goes out to all involved...the person in pain, the traumatized passers by, the family, and the rescuers who had to rappel down to recover a body.

Make those phone calls and visits. Don't forget about those you love or assume they're doing ok. Especially with pd, who steals away everything including sometimes the will to live.

By Maddie52 On 2014.08.15 11:05
I don't often post but read the forum everyday but since hearing the news about Robin Williams' PD I have been trying to shield that information from my husband. He is very depressed and has mentioned in the past that he doesn't ever want to be bed ridden, etc. This is a former triathalete and marathon runner who has battled PD for 20 years since his mid-forties. I know he will hear the Robin Williams' news and I am afraid of the conversation we will have. Lately he daily says that "he just doesn't feel good" and wants to know what we can do and I know he is loosing his will to go on. He constantly asks when our next appointment with the neuro is as he is looking for some sort of panacea. I know they will simply say it is up to me to adjust his meds as I see fit. More sinemet really isn't an answer as it just leads to more problems. He had a cardiac arrest 5 years ago which was followed by a quintuple bypass and now he is saying he is having some chest pain after walking. His confusion and dimentia are worsening and I am scared. Does anyone's PD loved one complain of just feeling bad all the time?

By mylove On 2014.08.15 12:03
YES. I never know what to say.

By jcoff012 On 2014.08.15 12:04
Michelle, Carl said the same as you...he doesn't want everyone to think his only alternative to PD is suicide. He said he feels strongly that *he* has no right to take away his life under any circumstances...

And, in another *good* thing that has happened to us personally...Most of you know that our oldest daughter has been distant and in denial since my husband's dx five years ago...Well, yesterday she wrote a poignant comment on Facebook stating, "Depression is devastating and real. In light of recent sad, sad events there has been a lot of sympathy and concern for those who are depressed. It seems depression and Parkinson's are linked and most didn't know that until the last few days. My Dad has Parkinson's. My grandmother had it...and she goes on from there, saying she will be there for anyone who feels down...just reach out....

This is the first time she has even acknowledged that my husband HAS PD! So, if all of this discussion has done one thing for our family, it has created a venue for her to finally come to grips that her Dad has a serious, life threatening disease and she needs to be more involved...Heavens, acceptance takes a long time, sometimes!

I had a friend tell me that I have nothing to fear with Carl because *I* can make anyone smile and enjoy life. He said, "Carl will never be so far down that you won't be able to bring him back up...but, if you need us, we will be there...I should have told you that five years ago." Yet another positive thing from all of the discussion...

Our lives are filled with more people than we knew that are willing to help. I suppose that is true for everyone...Reach out for help. Don't go it alone...For that, I am glad. If it took this episode to bring that back to us, something truly amazing has been cemented in our future journey with PD. Thank you, friends and RIP, Robin Williams. Jane

By LOHENGR1N On 2014.08.15 16:20
Not to be a wet blanket here but as has been stated here we need to talk frankly. To our rational thinking minds ....just reach out and help will be there is seeing through rose colored glasses. It sounds so right, but in reality those who want to commit suicide do it they don't reach out for help it seems the rational next step. Oh there ma y be some exceptions as there always are but all Mr. Williams needed to do was reach out to his Wife who was down stairs. A honey I'm feeling suicidal up here can you come stop me would not have gone unanswered. It's not as simple as saying just call me or reach out and I'll be right there. While it sounds nice action must follow checking on how it's going is required and in many cases even that doesn't work to prevention. While it can make those who say it feel better actions have to go along with the words or they are just that words. One in distress doesn't think rationally to reach out it is akin to telling a deaf person to listern for the sirens or a blind person to keep their eyes open and watch where they step. So many misconceptions on depression and suicide which need to be addressed I hope the discussions don't die down but continue to help all effected by death and those left dealing with the aftermath of these actions.

By moonswife On 2014.08.15 17:16
Last night "Awakinings" with Robin Williams replayed on a cable channel. He had a reputation for studying for a role thoroughly before he started memorizing a script. So it is less surprising to me this morning that he took his precious life. He knew his future. That movie is 25 years old. There has been no new breakthrough in medication such as the movie suggested was possible. He knew the impact the progression would have on his family. Tie those three sentences together, with the history of his depression recorded and you have disaster in the making

By makrivah On 2014.08.15 18:41
As a corollary question: with the often stated opinion that this disease can be devastatingly hard on the PD caregiver, has a study been made on caregiver depression leading to suicide? I debated with myself a long time before deciding to bring up the subject. I hope no one is offended, but this is something I've read nothing about.

By jcoff012 On 2014.08.15 21:18
Al, I am always optimistic and I firmly believe in God and the afterlife, so to me, it is wrong to take one's life...Carl feels the same...He said to me the other day, "I want to see my parents and our daughter again, so I HAVE to keep going on, no matter what." If that is rose colored glasses, so be it. Just the way we were raised...Suicide, we were told, is not ever an option. Period.

I started this topic a day before Mr. Williams took his own life...the despair is devastating, I am sure...We still do not know what the true cause of his death was...we may never know.

But, since our daughter's father in law is bipolar, we fully understand that depression manifests in other diseases with many of the same problems...I agree, no one can stop someone who is Hell bent on taking his life...I just want to know if there are signs for which to watch and what one does if the signs are serious enough to get the doctors onboard...without interfering with the doctor/patient confidentiality.

As for caregivers, I don't know...again...sadness and depression can become overwhelming...I just hope that there are more reasons to keep going than there are to end it all for those who are so distraught.

Much love to all reading this. I agree with all...This is a needed conversation, albeit difficult to ponder upon and even more difficult to contemplate. Jane

By moonswife On 2014.08.15 21:23
I hope this does not sound flippant, but in addition to caregivers suicide questions, maybe we ought to address the REAL question. On a FB post about your husband being your best friend I posted the message on our home answer machine, and my thoughts on a pertinent subject "'we're old, and we're slow, and we can't get to the phone on four rings", and we YELL at each other because we can't hear worth beans, but we have hung in there 45 years and this is still true. "In sickness and in health....." (Unless I kill him, which I would never be imprisoned for because it would be justifiable homicide OR he kills me, which he would never be imprisoned for because it would be justifiable homicide); to love and to cherish. For richer or poorer, 'til death do us part." And he will always be my best friend.

By carman96 On 2014.08.15 21:43
I admire your faith, Jane.
However, I don't believe that a person goes to hell if they commit suicide. The person has a mental illness and is so deep in despair that they don't think rationally. It is so sad they people are in so much pain. I don't believe St. Peter would close the pearly gates to them. They are tormented souls, not evil people. I believe only truly evil people go to hell, those that are in league with the devil.
Just my opinion.
Everyone has their own belief system, of course, and I respect that no matter what religion.

By LOHENGR1N On 2014.08.15 22:34
Jane what I was referring to as rose colored glasses was when people say to people just ask and I'll be there. Most will not ask, most won't reachout. It makes the speaker feel better and feel I offered but more interest is needed as to what is going on in the persons life than offering a phone number. It takes more interest and action than thinking telling one to call and thinking that it fixes everything.

As a side note suicide is a huge no, no in all major religions.

By jcoff012 On 2014.08.15 22:42
Carman, I agree with you...odd, huh?

By mylove On 2014.08.15 23:11
Jane, thank you so much for opening the conversation. I'm so tickled that it seems to have helped your family situation as well. That's huge progress!

It's been a trying day, but in the end, Ben and I had a conversation about the 'forbidden subject' as well. I guess we have progress. He agrees that jumping off a bridge would be bad.

I'll take it for now. ;)

By Mary556 On 2014.08.15 23:25
Life is very difficult and sad sometimes. That pain must be so overwhelming for someone who chooses to end his/her own life. Suicide does not really seem like a "choice" to me but some horrible, dark force that overtakes a person and makes them lose hope.
My belief is that each of us will someday go beyond this physical world to stand before the Lord and give an account of what we did here. Faith teaches us that it is very wrong to take anyone's life. "Thou shalt not kill." But when someone is in such despair that they cannot rise above the darkness enough to understand what is happening and to fight back, we believe they are not held responsible. Grave matter is there but not full knowledge and consent.
The Lord is kind and merciful. We can always trust in the love of God.

By Sheridan On 2014.08.16 08:29
Hello to the group. I rarely post but I come here daily because I know you understand and "really" get PD. I felt compelled to reply as several topics hit close to home. Short background: Married 37 years this month. Husband diagnosed with PD 1999 on same day I completed treatment for breast CA. He was very active and jogged daily as wanted to be healthy in retirement. Devastated by diagnosis but did not really understand what was coming. 5 yrs later PD reality, physical problems and decline in function took toll. I saw personality changes but he would not go to see therapist as saw that as a weakness. We all know how helpless it feels to see our PWP suffering and not be able to "fix" it. My husband has tried to commit suicide 3 times in the last 15 years. He was hospitalized each time and the last attempt in 2012 put him in ICU for 3 days and the Psych ward afterwards where he was weaned from many of his meds. He blamed me for intervening and putting him in the hospital. We have gone on with our lives but trust has been undermined and although much progress has been made we still struggle to make repairs to our relationship. Husband now has great therapist and has committed to a relationship with the Lord and says he will not make any more suicide attempts. I believe him but am never able to fully relax and always "watch" for signs. He was recently diagnosed with Prostate CA and felt that this was " His Way Out" and would let nature take its course...MD told him it would lead to bone CA which is a slow painful death. (kind of like PD itself) . He could not endure the thought of MORE pain added to his daily PD life. Not a candidate for surgery so just completed 8 weeks of radiation. Good prognosis. Husband says PD makes prostate CA seem easy. We too read about Robin Williams and understandd completely how despair can influence action. His story has brought back many feelings of pain, hurt and sorrow and I am grieving for his family. I want to thank you all for being out there for me. I cannot tell you how much support you are to me...

By ResistanceFutil On 2014.08.16 09:12
The cause of depression is largely unknown and despite what the drug companies say, no one knows how or why anti-depressants seem to work for some but for at least 25 0/0 of patients cause a worsening of the condition.

I personally support assisted death, which takes away the negative stigma of suicide. There is the Hemlock Society and Dignitas with more information.

I found this article to be most comforting in considering my own options depending on my conditions as I age:

I hope that our country will help all patients with terminal illness choose their own treatment. I wish all individuals had that option. I'm sorry that Robin Williams felt he had no option but to die alone in a highly stigmatized manner. If people who are ill, or even depressed, had a legal, non-stigmatized way of effecting a "permanent solution", that may be enough relief for them to fight another day. Only 25 percent of people accepted by Dignitas for assisted suicide take that path. The remainder seem to be content to let their life play out as having the option of a a painless death is enough.

I don't know that my PWP would make the choices I may have to make someday for myself. I will help him to achieve his wish, whatever it may be, to the best of my ability.

By jaxrock On 2014.08.16 09:46
I'm still in husband is still in shock and "thinking".
Lo's one set of words speaks volumes to me...and I thank you for writing it..
"one in distress doesn't think rationally"
That's all

By jcoff012 On 2014.08.16 11:52
Thank you all for expressing your have so eloquently detailed so many different opinions and possible solutions to this is amazing that we can do so without judgment...Hugs to you all...Jane

By Trusting On 2014.08.19 01:21
A different twist on depression. I'm the wife of the PWP and years ago I made an attempt on my own life. I am fine now and have never ever considered it again. What I would tell anyone who has had someone contemplate this is that person is not in their right minds. (Sometimes I look back and wonder who that woman was.) I do worry sometimes about my partner because of his depression, however, so far he's been a fighter. Depression is a disease too. The brain isn't working right. I believe that is what happened to Robin Williams. I wish he could have received help before he took this dreadful act. If you are a caregiver, trust your instincts. You know your partner better than the doctors. Don't be afraid to tell the doctors when you see changes in your partner. Blessings to all of you.

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