Having lost Jeff to Posterior Cortical Atrophy, and my dad to Parkinsons, I understand the suicide better. Not that everything in life, let alone every suicide, is something we can or should explain. But both of those most-loved men in my life were reduced to absolutely infantile states, and I am sometimes gripped with panic--hoping that if I find myself in a similar boat, I will retain the wherewithal to plan my exit strategy.
I saw a picture of Robin Williams taken recently, he had a gaunt, far away look. It struck me that there was something wrong with him. It was the same look I noticed on a dear friend just before we found out he Parkinsons. So very sad, sorry he felt so lost and alone. I feel for his family.
A couple of days ago I went to run the dishwasher knowing it was full and found everything was clean. I had no memory of running it and couldn't help but feel jumpy about that. Today I went to brush the cat but couldn't find the comb. I looked everywhere but it seems to have disappeared. I'm usually quite good about putting things back in the place for them.
And then tonight I looked for the big mixing bowl and this time I felt panic. It wasn't there and it's huge. What was going on? Then I remembered I used it to put the leftover ribs in and it was in the fridge. I never use that bowl like that but there were a lot of ribs left over.
I go back to that Billy Crystal/Meg Ryan movie When Harry Met Sally. She's giving him a ride and early on he explains that she's in denial about life and basically a goody two shoes. He goes on about his dark side and how he's ready for things to go wrong because they do. He thinks he's got her when she tells him he's wasting his life waiting for bad things to happen. That makes sense to me. Not always easy.
I'm a vet in mental patient care now where life is buyer beware by nature and life has been Kafka. Thank you Robin. I understand what you did now. To be a bright comedian trapped in a body that you can't control is a future I wouldn't want either. I honestly have no idea what I would do even though I've said I would go to Amsterdam.
Life at times takes real courage I'm noticing. I liked it better as a teenager. But I'm actually here at the other end facing certain decripitude with the difference that I've paid my dues. I've always known I'm going to die so that's not news. I know I can't do squat about it so that's not news. I know that random people die and also that random people push 100. Genes matter but are no guarantee. I have the same conclusion I had when I was young. You can't learn squat about what's going to happen until it does. And finally I know that heroes aren't without fear of death - they don't have excessive fear of fear. The waste of time Meg Ryan was talking about.
Living is harder than dying. At least that's what I believe.
Thanks for describing the "fear of dementia" panic Wolf. I have that too. If I'm uncertain about directions to somewhere I've been, or I can't remember where I put something, I find myself suddenly in the grip of panic (which, in itself, makes the brain unusable.) I calm down a little, and remember what I need to remember, when I need to remember it. Then I remind myself that I've always been absent-minded, and I've always had a terrible sense of direction. And it's true. I think I'm fully operational for now, and just need to practice deep breathing at certain trigger moments. Like you, I don't know how I'll handle it if I actually do start to lose it and retain enough self-awareness to act. But I reserve the right to believe I have the right.
I can understand even more why he did it. Sometimes things just pile up and you see no end in sight. Something happens, in this case the Parkinsons, that pushes you over the cliff. Knowing how long he struggled with the drug addiction and the constant battle to not go back, depression and now Parkinsons, I do not think his family are dwelling on 'how could you do this to us' like me left behind after a suicide. I sure would not.
I know that I do not want to go thru what my DH has gone thru or want to put my family thru what I am going thru watching his decline.Somethings are worse than death.I really think I will just end it all if I get to that point.Have things all planned.
I don't know what I will do if I find out I have AD or Parkinsons - but I do know there's a chinese wall here and it's a big one.
They didn't watch themselves get Alzheimer's - only you did that. They didn't go through an endless tragedy that sears the audience's sensibilities cruely time and again. The audience of one. And if we took a victim and tortured them by making them watch their love and life partner lose piece by piece while making their lives harder and harder - what would we think of such a sick story?
I know why I fear AD. I've earned that in the only legitimate way you can.
And I understand fear. Fear is what makes people do very odds things when they should be helping themselves. Fear is what introduces unintended mistakes. Fear is what throws you off your game by making you act differently. Fear causes turmoil in thought. And thought is necessary to see that fear is here and must be dealt with.
I'm terrified of getting AD. Walk a mile in my shoes or bite me.
The chinese wall is that that is not the only fear we come away with. But that is not this topic because there is a wall between this and the others. Which is BS. Fear is a feeling. It crosses intellectual topics. Fear wants supplication to it. I wouldn't do that.
If I had paid more attention to what I was doing none of those things would have happened. But that's not how it is - is it. Instead our minds are so full of some other thing we're not watching what we're doing and if I need to up my game on paying attention it doesn't matter what the reason is - it matters that I up my game.
I have all kinds of fears. And the only thing to do with fears is to fight them. Kick it in the family jewels. It won't go away but it will remember. If you don't believe me start telling one of your fears to FO and mean it and watch what happens. Bring a complete sick and tired of it set to the game and I will give you your money back if things don't change.
After what so many of us have experienced with our dementia spouses who can understand but us a fear of also becoming afflicted. I would want to commit suicide, too.
I agree with bluedaze*. I admire and envy those who have things all planned. Since this forum is anonymous would you be willing to share in a general way about your plans?
Legalities and hosting regulations prohibit any type of discussion of individual suicide plans on this forum. My website could be shut down by the company that provides the hosting for violating those rules. Nothing prohibits you from contacting one another via private email.
Understandable. We can seek this information elsewhere. I have found it interesting, really, in looking up ways in which people might do this, to encounter Alzheimers-related articles about how loved ones might assess the "risk" of someone with dementia making such a plan and carrying it out, so that surveillance can be increased and the plan can be thwarted. Makes me a little mad, actually. Obviously, we caregivers cannot assist with suicide, and are obligated to care lovingly for our Alz-victim loved ones until the end of their natural lives, but I cannot get on the bandwagon with anyone whose attitude is that suicide is to be hindered at all costs.
divvi, I agree with you. There is an assumption that suicide is always the result of disordered thinking, rather than a rational choice. Not so.
But with Robin Williams, you have to wonder about the "rational choice" vs. "disordered thinking" factors. He had a history of severe depression and drug and alcohol abuse. We don't know if his Parkinson's was already affecting his life or whether it was just the prospect of living with it that was too much. The method he chose also makes me question whether he did this after rationally weighing all the factors or whether he was in too much psychic pain at the moment.
My DH often talked to me about suicide. He knew he had ALZ (until 6 months before he died) and said he would “take care of it” when the time came. Occasionally he asked if it were time yet and I would always tell him “no, you are still having a good life”. I knew any other answer would upset him and that he was already not capable of making a plan or carrying it out. When things got really tough (anger, placement etc), our son was very angry at his dad because our son actually believed that his dad would really do suicide as he had promised our son.
After my DH died, I talked about this with my counselor. His wise question was whether I could go back in time and pinpoint when the “right time” would have been? Suicide would have left its own devastation on our son and on me. Even after my DH lost his ability to carry out a plan there were still good times that I would not have wanted to lose.
My conclusion is that when suicide takes place it is never at the “right time” for almost everyone involved. Generally “too soon” for those who are living. Even if you think about legally assisted suicide, when is the “right time”?
This has been an interesting discussion and we all have different ideas about what we'd do if we ever got this terrible disease. Because of my Christian faith, I don't think I'd ever be able to take my own life or help anyone else take their's. I certainly understand, though, and respect everyone's opinion about what they would do or consider doing if this happened to them.
Seems most everyone takes the side of those left behind. My mom always said when she started forgetting like her mom, she would use the gun my brother had left her years earlier. Don know if she ever tried cause a few years later when mentioning it he said the gun was too rusty to fire. But if she had I would not have thought of what I lost and be angry at her for it because I knew what lay ahead and do not wish that on anyone. My dad's mom jumped off a bridge in 1944 so I never knew her. Was I upset about it? No. I grew up on a farm. Animals are born, they live then die or usually slaughtered. Live and death have always been a part of life. When animals are sick or injured we put them down. People who are cruel to animals often sentenced longer than when same is done to humans. Why's is it ok to be compassionate to animals and not humans. Do you get angry at you pets when they die?
And then I thought more about it. People choose suicide.
I did not choose to be a caregiver. I do it out of duty and compassion for my spouse.
So, IMHO, caregiving is more like involuntary manslaughter than suicide. Our LO"s do not intend that our care giving kill us, it just does (if not actually, certainly figuratively).
Interesting, bqd, I will have to think about this some more.
Do you not think that in choosing to stay with your spouse, that led to the choice of being a caregiver (for whatever reason) and that led to caregiver suicide?
Perhaps "caregiver suicide" is not loss of life as much as loss of self.
The key word here is "loss." Our losses are as great, if different, as our spouses'.
Caregiving is the greatest thing I have ever done in my life and it will be first on the list of things I'm proud of.
I'm not challenging what's been said. We all have our own ways of seeing things. We're not the problem. Alzheimer's is the problem.
Suicide became irrelevant when it had slunk around long enough that the real me spoke up that "we're not doing that" and that was it. It became a sideshow and lost interest.
Coming out of severe depression is much harder. I was at a meeting today which the psychologist I saw last year also attended. Afterwards she commented it was nice to see I was out of my depression. I knew that but professional opinion is really appreciated.
"Hey depression! I got your groundhog day right here!" (rude gesture).
That about sums it up for how I feel about giving garbage that blocks my life any respect.
I equate staying with my spouse and being his caregiver to being drafted into the military. I did not chose to join in this war, but I will fulfill my duty because the only other option is to go AWOL, with all its repercussions. I may get an early discharge, because of the effects on my health, but I will continue to do my duty as long as I am able. I am not in this to become a martyr.
The time to leave would have been years ago, before any threat of a conflict emerged.
But in the end, whether one considers this suicide or manslaughter, you are right, the loss is the loss of self. And I am trying to take steps to make sure that I can preserve myself as much as possible.
Wolf, I am glad you are proud of your caregiving. I can't feel proud of anything I do not do by choice, but that is just me. And your climb out of depression has been long and hard, and that is another accomplishment for which you should feel proud.
marche, Your comparison of this experience to being in the military is inspired.
I was on active duty in the dementia service for seven years, but now that my husband is in LTC, I am in the Reserves. Although I am no longer on full-time active duty, I still have obligations and can be deployed at any time should the need arise.
As in the real military, some service members have better assignments than others. Compared to some others, my service has not been too bad since my husband is mostly agreeable and polite. But those whose spouses are aggressive or angry are like soldiers who are stationed in Afghanistan or Iraq. We all know, however, that without any warning, we can be stationed elsewhere.
bqd made the military analogy, btw. It is a good one. Whether it's suicide, the draft, or attempted (wo)manslaughter, you can come out relatively in one piece at the end. But there will be all kinds of "old war injuries" that crop up here and there, and a bit of PTSD. Just be glad you're alive, I say.
no problem, myrtle. Whatever analogy we choose to use, this is a difficult battle we fight, made easier by having this place of refuge to turn to. Thanks Joan!
My daughter sent me this link on Facebook which is self explanatory: http://www.vancouversun.com/health/Dead+noon+grandma+ends+life+rather+than+suffer+indignity+dementia/10132068/story.html
Charlotte - one of my DD's friends read the article and had the same comment as you did about compassion to animals.
Loved the article and even more the love and respect the family showed for their mom.
I read the blog she wrote explaining it all. I have great respect for her. I like when she talks about living will and putting in that if I am frail and ill and get something like pneumonia to not treat it. For me it would include UTI.