Monday, December 7, 2009

Caregivers and Suicide

excerpted from the Tampa Tribune:

Caregivers may look to suicide

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The rate of homicide-suicide in senior adult couples is 50 percent higher than younger adults. Those who suffer from Alzheimer's, the so-called Caregiver-Dependent Homicide-Suicides make up a large percentage of senior deaths. When a couple who has been married for a long period of time becomes totally dependent upon one another and one or both become irreversibly ill, homicide-suicide may appear to be the only answer. Periods of deep depression may trigger feelings of utter hopelessness, especially on the part of the husband who feels helpless in realizing he can no longer fulfill what deems to be his husbandly duties. This usually has the husband initiating the act. Do not interpret this as a suicide pact; this is an act of desperation and hopelessness.

One caregiver resource report showed nearly 60 percent of caregivers experience clinical signs of depression and 40 percent of former caregivers have mild to severe depression which can last up to three years after the patient has died.

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My Commentary:

Honestly, who doesn't think of suicide when you're living with a debilitating chronic condition that sucks the joy and vitality out of your life - whether you're the patient or the caregiver. I know I have found myself in moments of unrelenting pain thinking about death as the only cure. Having the option of suicide always available ironically allowed me to chose life -- because I knew that death was within a few pill's reach away. I could always swallow that handful tomorrow.

I would really like to know - have you ever considered suicide as your "cure?" What kept you from doing it? What thoughts ran through your mind that made you chose life?

23 comments:

FridaWrites said...

Yes--I have strongly considered it, both rationally and in a more emotional state (I'm not right now). My kids keep me from that--it would really screw them up. When my spine pain was relentless and absolutely unbearable and I was not on any significant pain medicine, I often said I'd commit suicide if it weren't for my kids. The pain was just too much. Moving to a scooter for distance has helped that a lot, plus actual pain medicine rather than just the NSAIDs. My spouse isn't feeling that burdened, but I can see how some would, when there's no help and they physically can't do what's required.

Anonymous said...

It's difficult to admit, but yes, I considered it. I was at the lowest point of my caregiving. It was not so much because of my husband's illness, because he is much worse today. It was because I was alone.

The illness was taking everything. Relationships, finances, comfort, energy, time and hope. I was doing everything, all day, all alone. I became isolated and depressed. I knew I needed help in a lot of areas, but my husband fought me the entire way. He wanted no one but me. I came to the end of my rope and told my husband, I get help today, or I will kill myself. There is no way I can continue this year after year. I'm not coping, you're not coping, our children are not coping.

I sought counseling, used medication for a while, and changed some things that I still had control over.

I couldn't change the illness, or the progression, my husband and so many other things. But I could change me. The way I let others control me, manipulate me, etc. And, I got rid of some toxic relationships, learned that I had value and that my needs were of equal importance to those of my ill husband.

Today, I am mentally stable and relatively happy. I still have "bad" days, but I don't contemplate suicide.

Was I seriously considering it? I believe I was. I hid pain medication so that I could take lots of it.

Always take thoughts of suicide seriously, whether it's someone you love, or yourself. Seek help.

Barbara K. said...

Thank you Frida and Anonymous for your candid responses. I think many people at least consider suicide when all they can see is a dark tunnel with no end and no light. Often, considering the impact on others and seeking help like counseling - anything that shifts the perspective -- can make the difference. When one feel alone in darkness, it's so hard to imagine anything else. I'm glad you both found a way to stay in life.

One of my favorite quotes (which is also my screen saver) is from the brilliant poet, singer, songwriter Leonard Cohen:
"Forget your perfect offering; there is a crack in everything; that's how the light gets in."

whitefoot said...

it seems like the right thing to do now. leave this planet after providing professional care for my wife, my girlfriend, my life of 19-years. for the past 8-years, we have been ripped to destruction by brain aneurism called AVM where an artery and a vein leak together compressing the brain to create excruciating pain and physical paralysis a bit like a stroke but it NEVER stops "stroking". 8-years now... not a treatment or surgery or relief in any way. all savings and support are gone - there is nothing left.

it is not about money, not about resources, not about friends and support. they have been gone for years now. it is just about never-ending pain and constant awareness of my failure to be of any help. there is no support group or tips or tricks of care. nothing is the future that we look toward everyday

i miss us. i miss her. i miss my wife, my girlfriend, my love for her... i miss sex, intimacy, caring and mutual nurture. i miss the 10-good years and i am destroyed by the last 8 to where i am fully spent. failure is more difficult for a guy. we have only accomplishments to show for life - women have so much more, like house, home,jobs, love, children, much much more. i manage the bedpans now and cry at her agony as my own.

i was a Marine and we dont quit. i never did, never cheated, never whined, never left anything that needed doing and now NOTHING is good enough... nothing helps or even hurts. it is just the constant rage of pain. drug relievers dont work - just make her vomit and add another sickness.

i would love the luxury of suicide - can i say that here? but i will not even tho our medical profession guarantees that there is NO hope. their conclusion is (and i quote) there is nothing we can do. how true. i am included in that statement.

i like to read about how many of you readers have discovered the ways to share intimately and help each other over the difficult times. i would do anything to just "talk", or hold her and be held - but everything hurts... constantly.

i read about lonliness and being alone in your efforts. i understand and see it everyday in my own mirror. get help, you rightly advise and even my counselor said that it is hopeless and merely offered a telephone number i could call. the VA could not offer anything either. so, i just suck it up with no end insight or even possible. if this little note depresses you, that is not my intention. i already OWN my depression. meds, counseling, well intentioned clergy ad nauseum border on the absurd. why is life so clung to? if heaven is so great, why obsess over the pain attached to this life? i have always wished some soul would return from heaven to tell us all how great it is but then there would be a mass exodus. i dont think this mess we are in will get us to a higher place anymore than war will lead to peace. i dont think this is a karma punishment or a religious reflection. i just believe it is my own little hell to watch and rage at my most precious love writhe and i have and am nothing that she needs or wants. i have failed her, i have failed my self and i am angry that i can even consider leaving. it would not relieve her of anything... or even me - just the illusion that ending my life would be better. the logic illudes me. and so, i am here - i will always be here with and for her and just when i find there are no more tears to cry, thre are more, there really are more.

God bless you all.

Barbara K. said...

Whitefoot - I can almost literally hear your howl of pain and sorrow. My heart goes out to you and your partner for your suffering and your losses. I often told my husband I'd prefer to be the ill person rather than the partner who has to witness, unable to cure.

I do think you may be giving your wife something of tremendous value, something only you can give; something that given the pain of her condition may be one of the most important things she has. That is, your presence. And I don't just mean physically being around. I mean your fullness, including your love and your sorrow and your hardships.

Sometimes, just the communion of sitting in silence while being fully present is a powerful experience for both partners.

One other thought - it is certainly OK to think about leaving and even suicide. Thinking sometimes relieves the pressure. But if your thoughts about this are starting to take over, or if you find yourself turning towards taking action, that's the time to get serious help. In fact, I do hope that you and your wife are are getting good help right now. And if the VA can't provide it, keep looking (options: ask for referrals from clergy, hospital social worker, local family service agency, Visiting Nurse Association. These people often come into contact with good therapists who have sliding fee scales.)

I wish you both strength and relief. I will keep you in my thoughts.

Jaliya said...

Barbara, I've just come upon your blog while searching for an image of despair ... I found it at this post ... and I'm going to gobble up your blog. Thank you so much for what you've done here.

I'm on Day 21 of a blown-apart marriage. I have been very ill for nearly three years and my husband's come to the end of his rope. Both of us are cracked right down the middle.

Last night was the nadir, I think ... and now we must begin the hard, hard work of disengaging our lives from one another after more than 8 years of marriage.

Even from a brief skim, I can see that your blog is a lifeline. Thank you, and I will be linking your blog to one of mine -- *A Post-Cynical Seer*. At this blog I write as a woman of 51 years old who lives with injuries and illnesses that are considered "mental" -- lifelong major depression, complex PTSD, and chronic disorders of sleep and sensory integration.

I, too, was once a therapist; there seems to be a particular agony for those of us who have had that professional experience. A certain kind of helplessness and sense of failure and uselessness -- "Hey! I've worked in this field ... I should be able to fix this ..."

My blog link: http://www.postcynicalseer.blogspot.com

Blessings,

Jaliya

Barbara Kivowitz said...

I'm glad you found my blog useful. I feel for the hardships you have endured. Please keep coming back here.

Anonymous said...

I consider it weekly and then I fool myself for a few days that the person beside me is OK. I can't do anything and nothing makes a difference. I shop, I do the dinners, I hang up her clothes, I turn down the bed, I find the glasses that are forever missing. She is asleep in the chair before 7 and the TV is at its loudest. She was, she is, the most beautiful woman in the world but she doesn't make sense a lot of the time. I bring her breakfast in bed around 6:30 but she does come out of the room usually until 10 o'clock.....At night I try to escape to 107.5 FM Classical...but then I have to get her out of the chair for bed.....I am happy to do this for a while but now she is in the tenth year and I lose my resolve quickly

Barbara Kivowitz said...

Anonymous - you have been shouldering a lot for a very long time. And it sounds like your partner is just not capable of appreciating what you do because of her own condition. You sound depleted - and anyone in your situation would be. I wonder if there are ways for you to replenish yourself that are accessible to you. Like - asking a friend or relative to stay with your wife while you do something you like (bowling, movies, visiting friends??). I don't mean to be overly simplistic in this suggestion - but it seems that you need fuel to continue and you need some respite care for your wife so you get a break. Caregiving is such a hard load to carry alone. Yes it has tender, loving moments, to be sure. But caregivers need their own support system too.

Anonymous said...

Watching my Wife of 27 years, Judy,
go down the mental and physical drain for the past 10 years was the most horrible time of my life. And it isn't over yet, even though Judy passed away on April 29th, 2014- just one day short of our wedding Anniversary. The only reasons I
haven't pulled my own "plug," is a stark Near-Death Experience which happened to me on Easter Sunday, 1999, and a few other things.
I can't begin to explain what happened,- I'll just say I made a "strong request" to return to life,
because I had "something I had yet to do." It turned out it was when Judy began to exhibit signs of Alzheimer's in 2006. Possibly BEFORE. I HAD to stay alive- Judy's siblings, co-workers and some of our "friends' didn't care. People
left us like we had ebola. In March of 2012, Judy had to leave our home and move into an "assisted living" facility. Sort of a "Purgatory," if you ask me. After Judy passed away at a local Hospice hospital (she had to be moved a week before because of so many seizures which left her unconscious), within a week after I received Judy's ashes, things began to happen. I was praying to GOD and to Judy to PLEASE show me a "sign" she was OK and that there really IS an Afterlife. I had placed a locket of Judy's hair, a stainless steel capsule of Judy's ashes, and our two wedding rings in a small transparent plastic bag, and placed it under a photo of Judy on our Wedding Day. The finger-sized metal tube was WEARING OUR TWO WEDDING RINGS. I had made sure the articles in the bag were not touching each other, for fear they would get scratched. But, when I looked (and to this day) Judy's capsule of ashes is wearing our rings.
A couple of weeks later, after I had prayed deeply, I glanced at the photo of Judy. It MOVED backward toward the small plastic bag I just wrote about. I thought it was an hallucination. I wasn't. Two hours later, I called my only living relative, a female cousin in NJ and as I was telling her about the picture moving, I glanced up at it again. It moved again- further back toward the bag. I began to "stutter" as I tried to explain what was happening. My cousin knew I wasn't hallucinating. She has known me for all of my 66 years. Later I tried moving the framed photo in various attempts to see if the surface it was on was slick enough to make it slide by air pressure (no air was blowing on it)
or vibration. No. Judy moved it to show me she was OK and in the next Life.
In my time on Earth, I have been an Aviator, Radio Announcer, and spent 8-1/2 years in the jungles of Nicaragua. I need PROOF in my life. I got it from GOD and from Judy. I miss her so very much, and can't wait to join her. Our two little dogs are in need of me right now.
Why not end it all? Our dogs need me, and Judy is waiting...patiently.

Barbara Kivowitz said...

Thank you Anonymous for this poignant story. The care you gave your wife for so many years and the connection you maintain even now are so special. I have heard similar stories about inexplicable messages or actions after the loved one passes. What a gift for both of you. Take good care of your dogs!

Originaluncleagent said...

Dear Barbara and everyone who has lost their Loved ones-

I'm the "Anonymous" who wrote of my 27 years of life with Judy. I neglected to add I was consumed by GUILT as well as GRIEF during Judy's illness and death. I really didn't know she had Alzheimer's when it began, and even well into her illness. I yelled back, sometimes. Sometimes I didn't know WHAT my feelings were. I thought, in the beginning, Judy was trying to "dump" me. You know- drive me crazy enough so I would leave. That had been a tactic used on me before- by my alcoholic first wife. I grew more confused with each passing day. I had wondered if her illness was the reason I begged to come back to life when I had my Near-death experience on Easter, 1999. Before that NDE, I had become, pretty much, an agnostic. What happened to me on that morning, though, certainly turned my thinking around. I had been raised Catholic, as had Judy been.
After the NDE, nothing happened until 2006, so by then, I was wondering WHAT I "came back" for.
All through Judy's illness, thoughts of suicide floated through my mind more than once. So many conflicting and confusing thoughts.
In addition, I have a severe spinal
disease, along with a bad vein condition in my legs (brought about by a sex, drugs, and alcohol addicted doctor in 1986). The pains that go with the emotional ones can become quite bad, leading to VERY "dark places." With Judy's Passing, all my Loved Ones (except for my two aging little dogs) are now gone.
The lonesome feelings get quite bad,
even with the assuring signs I got after Judy passed away. It's a STRUGGLE, hour-by-hour, sometimes.
My Mom said it best, over 37 years ago when my Dad passed away- "It doesn't get any BETTER! WHY?" I couldn't answer my Mom then, just like I couoldn't answer my own questions. Now, I know I "came back" to help Judy. She certainly would have been cast away by everyone had I not been with her. But even with the assuring signs, and my Faith, I am still partly human, and get depressed, sad, and lonely most all the time. I tell all of you this, so that it may make you feel not as
though you are unusual. We all are in the same, sad boat. That is- if we truly LOVE the ones we lost to Earthly death. I'm with all of you in your sorrow. I wish us all
Eternal Life with our Loved Ones. Until that time comes, we will suffer. GOD Bless all of you...

Barbara Kivowitz said...

Thank you again originaluncleagent. You're right - things get very hard and we can break. We all need to find the person or the belief that can tie us to life. In times of such pain it's not unusual to think about suicide. But if one gets close to acting on that, that's the time to reach out for help - from a clergyperson, a therapist, or others. Thank you for helping those of us who might feel as you do know that we're not alone

Anonymous said...

I don’t know if anyone is reading this but it’s worth a shot. I sit here at the end of my rope.

I am 28 years old and my 76-year-old father has Alzheimer’s. Officially diagnosed in March, his case is pretty advanced; we really became aware of it about 3 years ago. He can still use the bathroom, shower by himself (when prompted) and carry on a basic conversation with a stranger who doesn't realize nothing he is saying is true—like “I have a couple of little kids in elementary school” (we’re 38 and 31). But that’s it. He can’t drive, prepare food, complete any task lasting more than 3 minutes, remember anything, let alone his address or anything about my life. He can put on an outfit but often needs help; he can’t put himself to bed. He has had one true instance of wandering so far; a kindly neighbor brought him back.

My 66-year-old mother—easily the strongest, brightest, most hilarious and adaptable woman I know—is his caretaker. She is crumbling, and so am I.

Backstory: My Dad was a star. Wildly successful and respected in his career. Insanely charming, quick-witted, and talented, so much so that it still takes strangers some time to realize there is something wrong with him. He’s also stubborn to the core, and has a lot of anger left over from childhood abuse that has flared up throughout our lives. That said, he would never have lifted a hand to any of us.

If only Alzheimer’s meant Dad slowly forgetting everything, we could handle it. We’re already accustomed to the repeated questions, the constant losing of personal objects, the general 24/7 confusion. But in Dad’s case, it’s accompanied by severe anxiety, hyperactivity, and anger. (He's in great physical shape, a blessing and a curse.) He constantly tries leave for work at 1AM, even though he is in no condition to drive. The only activity he can do safely is watch TV and movies, only he gets sucked into their world (“How am I going to help these guys get out of prison?” or, in the case of a baseball game, “I have to go up to bat; I’m next up at bat”)-–flying into a rage when we tell him “it’s a misunderstanding.” Last night, he was insisting on wearing jeans and sneakers to bed. I begged and pleaded for him to get into his nightclothes and he kept screaming “YOU WON’T LET ME DO THAT. YOU WANT ME TO GO OUTSIDE LIKE THIS?!” It was cold and raining, but nobody made him go outside all day. Still, he insisted that *I* wanted him to “go outside” when I said “go to sleep.” He hears in opposites. He is hyperactive and constantly tearing our house to pieces trying to locate and fix things. Worst of all, he gets violent with my mother and I’ve seen bruises on her arm the size of a tennis ball (“Oh, he just grabs me.”)

So what are we doing? We have a part-time, daytime caretaker and are working on getting 24/7 care, but complications are delaying the process. My Mom is convinced that nobody will be able to put him to bed except her since he is constantly asking for her. (I can vouch for this.) She wants to put him into a facility. I don’t blame her but also don’t want her to skip the step of 24/7 care that is in arm’s reach.

I think about suicide, but I’m not serious. I worry more about my Mom. I want to do more, but I work about 55 hours a week, try to survive on a tight salary and NYC living expenses, cope with physical pain induced by anxiety, and try to be a normal 20-something in spite of this all. My Mom is my best friend and if she is in pain, I am in pain. I see her no less than once a month, and when I do I devote the entire weekend to figuring out ways to help. We talk, text, or email daily. What more can I do? How can I help her cope with the situation at hand, and also grieve the loss of her spouse (while grieving myself)? I am broken. She doesn’t want me to throw my life away in this ordeal. But she’s given me everything.

-KC

Barbara Kivowitz said...

Anonymous - your situation is heartbreaking, and you are not alone. Alzheimers is a terrorist of a disease and steals the mind while leaving the body to carry on. And it sounds like you and your mother have been pushed to the edge. If either of you fears falling over that edge and becoming suicidal - please get help. You both have given so much - don't give up on yourselves.

My suggestions are ones you have probably thought of - but here goes. Reach out to your local Alzheimers Association. They are one of the best disease associations and can point you at resources and education and support.

And perhaps your mother might be able to hear that while others can provide the daily and nightly hands on care, only she can provide the loving presence her husband might still be able to feel. That's where she can put her mighty energy.

I'll think of your family and wish for the best. Please keep reading and commenting and let us know how you're doing.

Anonymous said...

I can relate. I have become physically ill from caretaking. Parents in 80's .mom beginning of dementia. Dad is 88 and barely going. We are at a breaking point. I cannot afford nurses, she chased any we had because she was so combative. She is combative to me. She now took several heart attacks and may become bed ridden. If I lose my job, we will lose our house. My fiancé is at the end if his rope. Our relationship is in trouble. I can't afford for them to wipe us our financially but she needs residential skilled care. I am physically becoming a fatal stroke case and I need help badly.

Barbara Kivowitz said...

Anonymous - I'm going to post your comment as a lead post to see if readers have any thoughts to share with you.

You care clearly exhausted and overwhelmed (and who wouldn't be in your place) and doing the best you can in an awful situation.

And clearly you need resources to help. Would it be possible to reach out to your community - religious organizations, your town government, your local council on aging, the Alzheimer's association, the Veteran's Administration (if your father is a vet). There may be resources at little or no cost that are available to you.

You have probably heard this many times already - but it's a critical truth - take care of yourself. You deserve attention and recognition and support. It may not come to you - you may need to seek it out.

Originaluncleagent said...

Anonymous-
How I wish I could help. All I can give is my understanding and empathy and Prayers to ALL of you.

These illnesses are sheer HELL on
everyone.

In my case, it was my Wife. She Passed away last April 29th, and I still have, and will for GOD knows how long, guilt over the feelings that flooded me during the years (at least 10) Judy was ill.

I was scared the time I wasn't angry
or sick, myself. I will say special Prayers for all of you. I can only add- It will all be over one day, but I pray you don't lose your fiance or home in the process.

I send you much Love.........

Anonymous said...

how do you cope when it's your adult child?

Anonymous said...

I am a 63-year-old male caregiver, of my wife, who is a stroke survivor. I am so tired of life right now. My wife has constant needs and very little to contribute to the relationship. We are financially at the breaking point. We were turned down for funds to pay caregivers while I work. I pay them all of what I make in a month. We have been living off a home equity line of credit which is about to run dry.
I cannot work out at my health club because of the expense of a caregiver. I cannot plan things with close friends. I am seriously considering suicide. It is sometimes the best option. We live and we die. To die a little earlier than expected is no big deal because life goes on. I am tired and going to bed now.

Barbara Kivowitz said...

I hear how bleak and unending you see your situation as. I spent years in that state -- living with an untreatable pain condition and not knowing when or if hell would be over. The only light I can offer you is that - you never know. You never know when something sweet will happen. When a stranger's kindness, or a friend's will give you space to breathe, maybe smile. It's not unusual for people to think about suicide in a situation that feels endless. In fact, I found thoughts of suicide to be a bit of a release valve. It is unusual for people to make a plan and to commit suicide. If you reach that point, please consider reaching out to a therapist, minister, friend, family member. In fact, even way before that point, reach out. Support won't undo the fundamentals of your situation, but it can make carrying the load different, even lighter.

Originaluncleagent said...

I went through that Hell with my Father, my Mother, and 10 YEARS of watching my Wife, Judy, die of Alzheimer's. Each illness was different, but just as gut and heart wrenching as the other. Dad Passed Away in 1977; Mom in 1980; Judy one day before our 30th Wedding Anniversary in April, 2014.

I still have nightmares. I still cry during the days and nights. I STILL miss them. My life is without purpose except for my two little elderly dogs.
Do I think of suicide? YOU BET I DO. But I will wait, as the lonely days and nights fly by, until it's MY turn to join my Loved Ones. I will be leaving no one behind, which is a Blessing, if you think about it.

Dying is easy, actually. I have "been there" and CAME BACK. LIVING is hard. It takes GUTS to live with what you and the rest of us have to put up with. But rest assured, we will PRAY for you and your Loved One, and we know you will be together when it counts: FOR ETERNITY.
May GOD Help and Bless you...

Barbara Kivowitz said...

I am sorry for your suffering. You are right, going on is hard. The final loss of your wife is still pretty recent, after so many years of seeing her fade. I hope the loving memories offer you some comfort. And I hope your faith carries you.