Post-traumatic stress disorder (PTSD): An anxiety disorder that can occur after an individual has undergone extreme emotional trauma. It is most commonly associated with soldiers returning from war or victims of violent crime, but some experts now believe it can also befall caregivers. In fact, when I saw my doctor shortly after my mother died, it was something she mentioned.
Emotional Upheaval
In a way it sounds crazy; how could the impact of caregiving compare to war or violent crime? Obviously, they are very different, and I don’t think anyone is trying to imply they can be compared. But if you unravel what occurs in a caregiver’s life over many years, it’s reasonable to believe some form of PTSD is certainly within the realm of possibility – perhaps to varying degrees depending upon many factors.
Barry Jacobs is a clinical psychologist and author of The Emotional Survival Guide for Caregivers. Dr. Jacobs notes that many caregivers wrestle with uncontrollable disruptive, distressing thoughts months – and sometimes years – after a loved one has died.
It drives me nuts when well-meaning people say, “focus on the good memories.” (And for the record, I’m certain I’ve said the same thing to others a million times over my 47 years on this earth.) We’d all like to remember only the good times, and I imagine most of us constantly work toward that goal. But when you’ve watched someone suffer through years and years of an agonizing chronic illness, it’s tough to just flip it off like the light switch in the kitchen.
Dr. Jacobs says, “Many people find themselves unable to stop thinking about the suffering they witnessed, which is so powerfully seared into their brains that they cannot push it away.”
Haunting Memories
My mom died almost 9 months ago, and try as I might there are certain moments that regularly haunt me. Some nights, when I lay down and close my eyes at bedtime, the images are more vivid than I can bear. I just can’t shake it, and the only way sleep will come is with television to distract my thoughts and melatonin to help me drift off.
Sometimes, the images pop into my head without warning – no apparent trigger – but there they are. It’s a vicious cycle; the mental pictures tend to bring forth more unpleasant memories, particularly of the last several weeks of her life. Those thoughts lead to unreasonable worry about things that I couldn’t control at the time and certainly can’t control now.
For instance, in her last few days before going into the hospice facility, I had to administer morphine. Of course I was doing so under the direction of hospice nurses, but it was horrible. She was in so much agony; the morphine was the only thing that brought her peace. I know that. Yet, I still struggle and wonder if there was something I should have done differently.
Defying Logic
An image that is burned into my psyche is that frail, almost unrecognizable woman who, for nine days, occupied the bed in room 16 at Kobacker House. Face sunken in and unresponsive; so thin that at one point, I touched the sheet, wondering what the pointy thing was under there – only to realize it was a hip bone jutting out of her tiny body. I can still see her like it was yesterday, and if that’s not painful enough it’s a visual that never fails evoke memories of the moment she took her last breath.
Something that has bothered me for the past nine months; was I holding her hand at the very moment she crossed over or had I let go? Now what a ridiculous thing to obsess over! Even if I knew the answer, I couldn’t change it, yet I have to consciously remind myself how illogical it is to allow that thought to take up residence in my head!
I don’t doubt some people will read this and wonder why in the world I would put myself through reliving such painful memories, but it’s not a choice. I’ll be honest; I wish I understood it. What I do know is that I watched my mother’s gradual decline for almost a decade; it’s nearly impossible to even remember her BA (before Alzheimer’s).
PTSD or Not, Caregiving Takes Its Toll
Symptoms of post-traumatic stress disorder include flashbacks, feelings of anxiety, dread, guilt, apathy, numbness, and depression, but as Dr. Jacobs points out, each of those issues are common in caregivers. It’s really up to a physician to determine whether what you’re experiencing might be a form of PTSD.
Do I think I have it? Probably not. The thoughts and images I’ve described aren’t constantly present; they come and go. But at the end of the day we have to realize that years of witnessing the unthinkable, being forced to make life’s most troubling decisions, never being able to completely settle our racing minds, constantly facing wildly fluctuating ups and downs – all while confronting life’s “normal” daily challenges… it takes a toll.
I remind caregivers all the time they must be gentle with themselves, but the truth is, it’s still something I have to work at everyday. It’s only since my mom’s passing that I’ve realized the need extends well into life after caregiving…
I would love to hear your thoughts on caregiver PTSD, as well as how you’ve dealt with the unwelcome images and memories that come calling at the most unexpected moments.
The Long and Winding Road... 
Thank you for writing this. I was a Memory Care Coordinator for several years and although I was caring for people who were not related to me I cared deeply about their well being and I believe I made a difference for the better. I had to eventually take a break from that job. I became very ill from the stress of my work. I feel like I do have some form of PTSD. I have yet to hold a job for more than a few months since then. I saw so many sad things in that environment. I continue to try and heal from that experience. I’m glad to know about The Emotional Survivors Guide for Caregivers.
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Bless your heart, Jenn. Quite honestly, I feel like those who make careers of caring for others (and do it well) are angels. It definitely takes a special person. When my mom was in the hospice facility, I remember stopping to chat with one of the nurses in the wee hours one night… I asked how in the world they do what they do. She said it takes an incredible toll. I can’t even imagine… Sending you (((hugs))) — Thanks for being you. ~Ann
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Thanks so much Ann. Your reply means a lot to me. I am sad that I can’t do the actual caregiving right now. But I am actively looking for other ways to help. Take Care! Thank you again!
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You’re very welcome. xo
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Well said, Ann. My Mom is still with us (me), but visiting her at the nursing home every week takes its toll and I can only imagine what it will be like once she has passed. You are so right, we must be gentle with ourselves. There is no adequate preparation for being a caregiver. It’s a daily learning experience.
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Absolutely, Erica. Thanks for commenting. Enjoy every precious moment with your sweet mom! xo
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I helped take care of my father before he died and it was peaceful and accepting for both of us, but my younger sister had breast cancer, I took care of her in her last days and she treated me dreadfully,slapping me and saying that it should be me not her and so on. It was awful and the flashbacks are still here now 7 yrs later. I find it hard to get people to understand how painful it still is.when I think of death or dying that horror enters my head, I can’t shake it. The difference between my fathers death and my sisters are universes apart yet they both died of cancer.learning to let go is helping but ongoing. I can never forget that experience, but forgiving and letting go is the key else I will never have any peace.
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Paul, I’m sorry you’ve had to go through so much…. you’re definitely right about forgiving and letting go being the only way to find peace for yourself. Thankfully, I think time does dull the ache even if it doesn’t erase the pain completely. Sending you many blessings. ~Ann
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After reading all of this I must say that there is a wonderful work called Somatic Experiencing , a gentle trauma resolution work that can be very helpful for PTSD. There is help out there. I know the challenges being a caretaker can bring!!
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Lori, that’s wonderful information. I’ll look into it. Thank you!
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This should be require reading for every.one who is in caring for someone.
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My dads cancer spread in may of 2013 to his brain. One day he was coming home from work with in two weeks he was unable to walk without a walker.The cancer had gone to his brain. I left my job and my dad and I lived off his disability and social security since he was 69. He didn’t have long term care insurance so I was his “caregiver”. I had very little to almost no help at all from kaiser. My dads doctor came by twice between may and his passing in December. His hospice nurse who came to our home never came more than twice a week and stayed at the most for a half an hour. My dad at this point had nine tumors in his brain. During this time my dad had many seizures including multiple grand mal ones. He had lost his ability to make sense most of the time and he would fly in to rages calling me every name in the book. I never left my house for anymore then 30 minutes at a time. I didn’t have anyone to help. The last bunch of months my dad was bed bound in the living room. I slept next to him on the couch. I did diaper changes,administered meds and dealt with all the seizures. Never knowing when it would be the one that killed him. When my dad passed I felt an enormous amount of emotional pain. Then it passed abruptly I thought I was okay. In February I began to have problems sleeping. I had to turn off any thought of my dad or him being gone. I woke up in the middle of the night thinking I was hearing him scream out for me like he use to. I became socially awkward something I was far from and believed that everyone could see something was wrong with me. I was out on zoloft a few weeks ago. It seems to be making things a bit better. I was in the army and still have quite a few friends who are active duty. One of my buddies pointed out that I was having the same ptsd symptoms he was having. I felt stupid and brushed it off. After reading this I wonder
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Jenny, I’m so sorry for everything you’ve been through…. I’m glad you found this post helpful; above all, it has always made such a difference to me to know I’m not alone in my experiences and emotions… I hope that helps you as well.
Blessings,
Ann
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Yes, yes, yes! PTSD is real and it’s there. Many “classic” symptoms arise, sometimes during and very often after the person passes. I don’t want to admit it, but yes I had and still have symptoms. But I know things are getting better, at least not quite as painful and not so many negative reminders. It’s been almost two years. Time will help you, please don’t get discouraged.
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Thank you for your comment…. Blessings to you.
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I have been caring for my Mom with Alzheimer’s for almost three years. She is still with us and is in late middle stage of this dreadful disease. The most difficult part of caring for her is the treatment I receive from siblings. It has been a very ugly, ugly situation with them. They simply are in denial about my mom’s disease, and think that I make things up that are happening with my mom. It has become a court action because of, yes money, because I want to be paid to do this, they want to preserve assets for their inheritance. I have endured all sorts of attacks including an investigation by APS for financial exploitation which couldn’t be further from the truth. I have PTSD symptoms, but the cause is not the death of my Mom, but rather the treatment of me by siblings.
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I’m sorry, Pam… I hear this so often. As an only child, it isn’t something I faced myself, but I did deal with the disappearing family syndrome that is all too common. Stay strong; remember you’re doing your best given the situation. Find some time for yourself, even if it’s just going for a walk alone or having coffee with a friend. It’s so important that you take care of yourself. Sending you blessings.
~Ann
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Thank you Ann.
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Thank you, thank you, thank you. I (and my sister Shawnee) identified with every single story! I wish I had known about this site over the last seven years taking care of our mom. When we were going through it, it seemed like we were the only ones in our social circles and no one else had any idea what we were going through. I often thought that people thought I was making things up.
Both of us quit our jobs, tried to work part time, supposedly “squandered” the family “fortune” while losing our own homes and moving moving moving to better situations to take care of our mom. It was a living nightmare.
Thank you for putting PTSD as a possible explanation for what we are feeling weeks after the funeral. At least we’ll have some idea where to go from here with self care.
Again, bless you!
Valerie Moore
Ft. Collins, CO
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Valerie – I’m so glad you found my page. Like you, I was essentially alone during the course of my mom’s illness. I was floundering, dealing with all of it on my own with the wonderful support of my adult daughter. However, I realize now what I missed by not seeking out others in the same situation. Sending you many blessings across the miles. I’m so sorry for your loss….
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My twin brother and took care of our mom for nearly a decade as she died of ALS. We were 10 when she was finally diagnosed after years of slow, almost neglegable degeneration. She died when we were almost 17. It was just us taking care of her. I get angry when someone says “focus on the good memories” because almost all of my memories are haunted with her disease. There were nights when I would wake up at 2 or 3 in the morning and sneak into the living room (where she slept in a chair so she wouldn’t suffocate in her sleep while lying down) and watch her breath. One night she woke up and just looked at me, I panicked and said “Just checking” and scurried back to my room. There were times when we had to rush to the hospital because she fell. Everyday I would catch my breath before I entered the house to prepare myself if she were dead. Years after her death of pneumonia (a common complication of ALS) in an ER I still have moments where memories grip me, like the time she fell as i was walking her to the bathroom. I caught her and didn’t want to let go. Or the time she fell at my 8th grade choir concert and on the way home we all cried. That would be one of the last times she left the house. I don’t know about PTSD, and it doesn’t compare to veterans, but my childhood of caregiving certainly affected my life and psyche today.
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Thank you for this post, although from over a year ago. My Dad passed away only three months after being diagnosed with ALS. They thought it was cancer or a virus, anything but ALS. So while he was mysteriously sick for years, we only had three months with him after we understood what was happening to adjust and make peace. We never thought he was terminal. Then he died. He lost 70 lbs between March and June, essentially starving, went from able to walk in March to completely bedridden by May, completely lost his speech, couldn’t breath, fell into a coma, and died on Fathers Day. I was one of his primary caregivers. Now, seven months later, I still sob every night, haunted by the memories of watching him suffer, starving, gasping, and crying. He was cremated and all I can see are images of his body burning and just wishing I could see him again. I’m finally seeking grief counseling but have no idea if what I’m going through is treatable, honestly. It’s not so much his passing that I can’t get over, it’s the suffering and watching his pain that I can’t accept. I’m not sure I ever will. Anyway, I really relate to what you said so thank you. It’s nice to know I’m not alone.
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Thanks so much for putting into words that which many have thought.
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I’m still in the “thick of it”, so to speak. I’m the full time caregiver of my 85 year old Mother in law who was diagnosed with Alzheimer’s about 10 years ago. My husband, daughter, and I have lived with her, caring for her for 5 years now. She is now at the point where she doesn’t usually know who we are. She recognizes us as people she is supposed to know, but can’t make the connection. She is also bed ridden. I’ve seen lots of articles concerning the stress of caregiving, but it seems that very few people are willing to be COMPLETELY honest about many of the more unpleasant parts of caring for a loved one, specifically with dementia related diseases. I frequently see the words, “dealing with guilt” used, but no one wants to admit exactly WHAT it is that causes US to have those feelings. People don’t want to berate the person who has, or is, going through this miserable, absurd, cruel (to everyone involved) disease. I’ll be brave enough to admit at least SOME of what will haunt me with guilt long after she is gone.
Here is one example:
It seems as though my mother in law is somehow psychic. Even though we rarely tell her when we are about to go somewhere and leave her with a sitter, it seems like somehow SHE KNOWS! And THAT is the very moment she decides to be demanding, rude, and downright cruel. The day of my only chilld’s high school graduation, for instance. We were already running a few minutes behind, and were about 5 minutes from walking out the door. My MIL had been in reasonable spirits for several days in a row prior to this particular day (rare), but THIS day at THAT very moment, 5 minutes before rushing out the door, she starts screaming and cussing for help.
“Well, what did she need help with?”one may ask. She wanted to get up and go to her room. Even though she was in HER ROOM, she was very belligerently DEMANDING that she be taken to her room.
Well, I yelled at her. No, that’s not right…I SCREAMED bloody damned murder at her. I didn’t even remotely hold back my resentful emotions towards her acting that way at that moment.
I’ll give another, more dramatic example of a “thing” that I’ll feel guilty about for a long while:
As I said earlier, my MIL is bedridden. Her legs may as well be over cooked noodles for all the good they are. She also has very little strength in her arms or abdomen, YET, on another occasion, she wanted help getting up so she could go for a walk. I had to explain to her that it wasn’t possible. She, very angrily, accused me of being at fault for her atrophied body. I tried to calmly explain that she was bedridden due to HER unwillingness…flat out refusal…to keep up an exercise routine that would have prevented this particular demise. Of course, she called me, “a lying
b*#ch”, and again DEMANDED that I help her up. I knew she wouldn’t be able to, and that it would be extremely painful for her, but I did it anyway. I turned her in her bed so that her legs were over the side, supported her under her arms as though almost hugging her, and lifted her up. I said, in as calm a voice as possible, “Ok, so I’m a lying …..?
Well, then put your feet on the ground and STAND THE HELL UP!!!” There were actually more expletives than that.
She couldn’t, of course, and started yelling at me to put her down and let her do it herself. At that point MY arms were giving out, and since I had stepped a few feet too far from the bed, I had to put her down on the floor. She was a crumpled heap, without even enough strength in her arms to hold her torso, shoulders, and head up…a pile of sad flesh in the floor, in nothing but her tshirt and a diaper that she had filled with ‘both’ while I was lifting her.
Old people are NOT inherently kind, and sweet, and wise! They are, in fact, FREQUENTLY hateful, filled with resentment and EXTREME animosity, specifically towards the very people who are now doing EVERYTHING for them. The caregivers often become the epitome of EVERYTHING their frail minds and bodies are incapable of any more. They lash out, sometimes even become quite violent (I’ve been spat on, cussed out regularly with every foul name imaginable, been clawed, kicked, bitten, and punched.
Would you like to know something else I have to feel guilty about?
Even though I am MOST DEFINITELY NOT the reason for her physical condition, I, for mine and my little familie’s safety HAVE to be THANKFUL that she is bedridden, and too weak to actually hurt anyone.
This is just a VERY small fraction of the reality of living with, and being the full time caregiver to a loved one with such a disease.
It is an incomprehensibly stressful job, with the only reward being that this person, whose life you have cherished for so long, will NOT survive this thing. The ONLY light at the end of this tunnel is this person’s death.
People, like myself, far too often walk into this position with a romanticized idea of what this life will be. It’s time for more of the realities to come into full view.
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I’m so sorry, Rusty – I appreciate your honesty and courage in sharing your story. You’re right – very few people understand the true impact of 24×7 caregiving, particularly for someone living with dementia. To say it’s brutal would be an understatement. You and your family are in my prayers… ~Ann
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Everyone’s experience of being a dementia care partner is different. And while I would agree that it can be traumatic and stressful, life itself can also be traumatic and stressful. It can also be joyful and healing. I feel very fortunate to have found many gems in the tragedy and chaos. Is there anything at all positive about your experience caring for your MIL?
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My mother moved in with my husband & I into a new 2 befroom apartment a little over 3 years ago. I was her sole caregiver and she needed 24 supervision for most of it, but especially in the last year due to regular falls. She passed away last Monday, August1st, the day before her birthday & the day after the last words exchanged vetween us were while arguing. She said she hoped she did fall & hit her head & die because I was so burdened by her. Low blow. And that’s the last thing she ever told me. I can not function… We fought a lot & she always said that I would remember how I treated her once she was gone… Boy was she right. I can’t seem to remember all of the nasty, rude, or manipulative things SHE did or ever-growing paranoia, but I do remember every bitchy or frustrated interaction I had. I have no purpose anymore, no job & I’m grieving my mother who died all alone less than 50feet from me & I had no idea. I’ll never close my eyes without seeing her face as I screamed and cried for her to please wake up. Her cold skin, and the final I Love You never said. How do others deal?
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Lorie, I’m so sorry … sorry for the loss of your mother and sorry for everything you’re struggling with right now. I can imagine how painful this must be. Please remember that you did your best under the circumstances – we all do our best. We’re human and we make mistakes. There are many things I would change if I had it to do over again. This is going to take some time and perhaps talking to someone objective who can help you work through all of these feelings.
You aren’t alone – I want you to know that. If you’re on Facebook, please consider joining the UsAgainstAlzheimer’s closed support group that I co-moderate. You can find us here -> https://www.facebook.com/groups/usagainstalz/. Whether you choose share your story or not, you will be able to read what others post and that may help – my mom has been gone for over 3 1/2 years now, and interacting with people who understand the journey still helps to validate my feelings. Sending you many hugs and prayers. Please take care and be gentle with yourself.
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So sorry for your pain ❤
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Oh Lorie, I too am suffering with so much guilt after my husband died recently from Lewy Body Dementia. I was his sole carer for 4 years the last 2 years being a total living hell for both of us. But the tremendous carer burden turns you in to a different person, you cry and wail for the life you have lost. The mental and physical strain is unbearable and the day comes when you feel you cannot go on, it’s then things are said, you cannot unsay. I constantly go over and over every day, blaming myself for everything, wishing I could change what happened, take back the arguments. Why can’t I remember the good life we had before the Lewy monster took his life away? all I think about is the illness. I will never get over any of it.
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PTSD disorder also affects care givers of those that survive cancer treatments. Why do I think that I know about this? I’m from a military family-husband had PTSD and 5 tours to Vietnam; my son is a disabled vet-spinal injury and PTSD, an uncle with PTSD.
I have a friend that beat cancer, survived the surgeries and treatments. Her daughter is now falling apart.
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Thank you for your comment. This is so sad…. I hope she is able to get some help to work through it. Sending prayers.
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Thank you for your kindness in acknowledging my comment. I hope that you or somebody does some research on this- writes something—lots of support during cancer care and death—but people think that when there’s survival– care giver stress goes away. I think it’s sort of like somebody that has been deployed a lot—Anyway- my friend is thinking that she raised her daughter wrong- all sorts of guilt for having cancer in the first place.
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i am struggling. i’ve heard the term “caregiver PTSD” a couple of times and decided to try to find something about it and came across your site. i don’t even know where to begin…what timeframe. i tried to be a “caregiver” to my husband who didn’t think he needed to be taken care of. his type 2 diabetes was out of control…he had triple bypass heart surgery and 5 stents. he developed neuropathy in his lower extremities. the diabetes was winning. (his diabetes is rated Agent-Orange related from service in viet nam.) in october of 2012 he opted to take a chance on gastric bypass surgery to cure the diabetes…he was nearly 75 at the time.
a 2-3 night stay in the hospital has turned into a 4-year nightmare. 5 weeks in ICU…didn’t come home the first time for 5 months. and since then it’s been in and out of one facility or another. yes…the diabetes, high cholesterol, high blood pressure, and 120 pounds are gone. what we got in its place, however, does not resemble “health.”
i have spent all this time being his advocate, his caregiver, his CNA for things he couldn’t do himself, his nurse making sure meds (LOTS of meds) are taken properly, his chauffeur to all this appointments (he hasn’t been behind the wheel since the day he drove when we went to the hospital for his surgery). he’s undergone anesthesia so many time and every time it puts another chink in his brain. he was diagnosed with frontal lobe atrophy a year after his surgery. his short term memory is basically gone. his sense of time (days/weeks/months) is non-existent. he became more wobbly and unsteady.
i knew i couldn’t continue to do it on my own forever and last december i knew there was nothing left of me physically, mentally, emotionally. i began the hunt. in june he entered a veterans home which is more affordable than going on medicaid. but the closest one is 75 miles. i make the 150 mile round trip once a week.
people think i should feel “relieved” that i’m no longer “trapped at home” and having to do everything for him. if i DO feel any relief, it is totally lost under a pile of other stuff called anxiety, depression, maybe some guilt because i couldn’t do all i wanted to do, grieving the loss of him being here (hard as it was), detachment feelings, riding an emotional roller coaster, waking up crying, becoming stressed just before i am planning on making the trip to visit, and feeling drained of everything after visiting…just to name a few. i’m pretty sure all those feelings and emotions are what is draining me of energy (aside from being 71).
people were always telling me “be sure to take care of yourself!” what? really? i could hardly take care of him…there was no “me” any longer. i didn’t even know what “taking care of myself” looked like. now i’m trying to catch up with all of MY doctor appoints, etc. but even that is draining me. everything takes such effort. and i’m still inundated with paperwork (including dealings with the VA for disability claims…for 3 years!) and following up with his doctors there and how he’s doing and on and on and on.
it’s been 3 months and i am nowhere NEAR “snapping out of it.” in fact, i’m pretty sure i’m getting worse. i am now trying to get an appointment for myself with the “head doctors” where i would take him. i’m starting to realize that i’m probably not capable of handling this on my own. i’ve dealt with many ups and downs in 7 decades and i’ve always remained standing. i’m not so sure that’s happening this time. and now i’m developing fearfulness about my own health and well-being.
i know people who have dealt with these types of situations but with a parent, not a spouse. i think that adds another element to it. my dear friend went through it with both parents just a few years apart…she said to me “i know how hard that was one me but i still can’t imagine how much harder it is when it’s your husband.”
on top of all this, we moved from one state where it started to another state a year and a half ago. because of his condition, it was impossible to go places…especially to church which had always been a big part of our life and where we developed friendships. i know i need to start going again but i even fear going to church because it’s normally an emotional and moving thing for me…now i fear i will just break down into a weeping heap surrounded by strangers.
i almost wish for those days back of being “burdened” with my husband’s care because as hard as it was physically and emotionally, i didn’t have to think about myself and my life and what my life was supposed to look like.
if this ISN’T actually PTSD, then i think it’s something extremely close to that. and i thank you for listening.
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Barbara, I’m so glad you found my page and that seeing this piece helped, even if just to let you know you aren’t alone. If you’re on Facebook, please consider joining the Alzheimer’s/dementia support group that I co-moderate. You can find us at: https://www.facebook.com/groups/usagainstalz/
It is a truly wonderful group of caring, compassionate people and many are caring for or have cared for spouses. It’s also a closed group so only members can see the posts.
If you haven’t seen the post below, take a look when you have a minute. The A List 1000 might be something you would like to join. It’s a free initiative for dementia caregivers. I think you could benefit, and you certainly have so much to offer in the way of experience that could help others.
Members will be offered all kinds of opportunities; in fact, today, a study opened for 15 eligible caregivers who will receive eight free counseling sessions to help them manage stress and other caregiving issues. In return, they will provide feedback to help improve the service. That’s just one example – many more to come!
https://alzjourney.com/2016/08/20/magnify-your-voice-join-the-a-list-1000-today/
Please take care of yourself – I know that’s easier said than done, but it’s so important.
Along those lines, here is one more thing for you to look at to see if you’re interested. The Health eBrain Study aims to help scientists understand how the caregiving experience impacts brain performance. Participants will receive one of two apps/services designed to support caregivers and help them stay healthy. The first step is to take a survey to find out if you qualify for the study.
https://www.health-ebrainstudy.org/
It sounds to me like every single thing you’re feeling is completely normal, but having a chance to interact with others walking a similar journey – or folks who have been in your shoes – could be hugely beneficial. I lost my mom almost four years ago (to Alzheimer’s), and I still find such comfort and validation in the online group I moderate.
Take care, you are in my prayers… I hope to see you in our FB group.
~Ann
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Wow. Thanks so much for sharing your experience. I hope you find the strength to take you where you need to go. you are an inspiration ❤
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Having one of those….’I don’t think I can do this any longer….it’s taking a toll on my own mental and physical state….’….but …finding this website today and reading the posts gave me a boost…..so many people have it so much worse than me. I feel for them. I’ve been caring for my Mom at home for 10 years now…she’s 94…she’s a tough cookie…and somewhat negative and depressive…and of course my siblings seem to have disapearred…since I had no children, all the responsibilities fell on me..
I cook 3 meals a day for her, listen for a noise indicating a fall….checking on her up the stairs 15 times a day (or more)….clean up after her accidents….doctor visits ..do the wash….
no vacation or even a day off for 8 years…or more
I suffer from advanced osteoarthritis and have have spine surgery, Knee and hip replacements , and 2 wrist surgeries….all In all 12 or more surgeries while caring for Mom
Siblings stay with her while I’m in hospital and as soon as I come home they are gone!…up the stairs to care after knee replacements, hip replacements….
Brother and sister take their 2 or 3 vacations a year….of course
When they visit, they stay only one night….I lost many friends over the last years….
Some don’t understand why I don’t just put her in a home….others are demanding of my time ….and so I just let the friendships lapse……I can’t leave her alone more than a few hours….
And so one becomes isolated socially and the only communications is with someone who speaks about dying in almost every conversation…..
It’s no joke…..
When I was younger(Now 63), I travelled the world like a madman…..from Iceland to Ischia…from Singapore to Saigon…Rio to Peru to Tahiti…
And so, now that I am Locked in caregiving mode I at least have some good memories….
My only advice to all my fellow caregiving troopers……stay strong as possible….
And there will come a time when you have some freedom from the heavy responsibilites you are experiencing….after that…..you will need R and R….to de-stress!!!!
Take it…..travel to Japan and soak in the Onsen hot springs…..take a train trip thru the Alps….seek out spas…..they are cheap in many countries around the world.
Seek peace and solace in natural parks, if that is still possible…
Bali is a particularly beautiful place which has a soothing spiritual atmosphere….
Costa Rica is lovely, as I’d the desert southwest of the US>….
After the horrors of what some of you have been thru, you need real getaway to clear you minds……it can help….good luck to all…….thanks for listening..
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Thank you for your comment, Steve. Your world travel sounds incredible – so many unique and memorable experiences, I imagine. You’re such a good son to care for your mother the way you are, and I’m sorry you’re going through all of this. It truly is so exhausting – both mentally and physically – and terribly isolating.
I co-moderate a wonderful online support group on Facebook. If you’re interested, we would love to have you. You can find us at https://www.facebook.com/groups/usagainstalz/ It’s a safe place to share experiences and thoughts – from your deepest fears and frustrations to the special moments of joy and everything in between. You’ll be among people who understand what you’re going through and will offer support and compassion. Hope to see you there. Take good care of yourself.
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“and of course my siblings seem to have disapearred…since I had no children, all the responsibilities fell on me…” Yes, I know that feeling. You are not alone.
I cared for my mom in various ways for the last ten years; she died a month ago. Thanks for the travel tips. Maybe it’s time, now that we are both free.
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I lost my oldest son 3 years ago, Joshua, who was only 7 years old. He started fighting cancer when he was only 5 months old and beat it 3 times, only to have chemo kill his heart muscle and take his life 3 years ago. I have felt since hearing the signs of PTSD, that I might be affected by it but so afraid to ask anyone about it, fearful that I’m trying to be compared to anyone the has fought for our freedom. I am just so tired of being tired. Tired of avoiding everyone and everything. So tired. How do I find someone that will help me figure out if that is what is wrong with me? Thank you.
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After church today a random seating at lunch table brought together persons with military trauma, Alzheimer’s care giving continuing recovery and several dealing with aging challenges. Very quickly stories began to reveal inward pain. A military veteran told of a helicopter crash killings 16 that arose at the moment. We were all on the same page without intending to get into such a conversation. I believe it was a vivid immersion into healing. My own loss of Joan to Alzheimer’s is given a context through such a random events. May there be more such events. Del
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This article is 3 years old from the date i write this comment. I agree 100% ptsd on caregivers is real, i had and still have the same symptoms you described. Its been 2 years and i am still coping with my mother’s passing away due to cervical cancer. I took care of her thru 2 years. My case is a bit worse, because she did not have alzeimers but was lucid and aware and she was suffering from depression due to the death of her brother and mother within the same year. She would ask and beg me to please kill her, to end her suffering – it tore my soul and broke my all, all my being. I kept taking care of her thru hospice in my home, they just provided me with the meds. The memories are all bad, negative, sad i have barely no happy memories as the sad events took over all the good i remembered. My family does not understand, and i feel they dont want to understand what i went thru. I thank you for your article, im glad i found it and it helped me. Now i know that i am not crazy, that this is real and the way i feel is real and that im not alone.
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My wife died of cancer in 2013. She was only 34 years old. I was her caregiver for almost 2 years. I receive the bad news of her early stage of cancer while I was on Active Duty deployed in other country. Her parents and brother didn’t help much with the whole process of her illness. It begun as breast cancer and later extend to lymphatics nodules and skin. Still keep listening to their cries of suffering because of the pain, multiples tumors cover her skin. And I couldn’t do anything to stop that cancer, to stop her suffering. Her worries about the future of our daughters.
Now to many memories, feelings of guilt, anger, sadness, anxiety, lost interest in things I liked to do before. I don’t know if is PTSD or depression but I am not the same person now. I started to see a psychologist in Veterans Hospital almost a year ago, but I don’t feel any better.
But I have to take care of our daughters and that keep me on my feet.
Thanks for posting your experiences, I feel I am not alone.
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Hi…. I actually looked this subject up on Google, and this was exactly what I was looking for. Confirmation that I’m not crazy maybe? I’m only 20. 21 this coming up year. So how do I explain nearly the entire list you have as signs of PTSD…. I grew up being a caregiver of a mother with Lupus. Since I was 5, it’s been a series of ups and downs, and resenting the disease that pretty much ripped my childhood away from me. My mother is still alive, and well depending on the week. But I’ve noticed since moving out after graduation nearly 2 years ago, I’ve been having issues with anxiety. Flashbacks of memories of her in the hospital I didn’t know I remembered. I’ve dealt with depression since I was at least 15…. A friend of mine has been asking me to talk with a professional or something the last few months… I just don’t want to be labeled crazy, ya know? Maybe I am…. But this definitely helps me feel less like a freak, and more normal than I’ve felt in a long time.
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PTSD is something I had never really given much thought to until the events of my life the past 6 years. I am 52 years old and up until Jan. 2010, I had, from all accounts, a perfect life. A wonderful husband, two beautiful daughters, a good job, loving family and friends, a treasured mom who lived with me after the passing of my dad. In Jan. 2010, my mom was diagnosed with multiple myeloma…cancer. The next 9 months were a nightmare I could never have anticipated as I watched my once strong and independent mom deteriorate physically, emotionally and mentally until she passed Sep. 5, 2010. I was very close to my mom…so much so that she made me her medical power of attorney. A request I was initially honored to have bestowed on me until the time came that I had to utilize it. My ‘typical’ role in my family was that of the peacekeeper, the mature, reliable, responsible one who could always be depended on…patient, generous and loving. My life and how others felt about me, meant everything to me. I had always felt loved, respected, valued. During my mom’s illness, from all outward appearances, I held firm to the ‘Nesy’ my family had always known….but inside, I was crumbling…crashing…emotionally shutting down. When my mom passed, I completed all the formalities expected…planned the funeral, paid her bills, distributed her estate. After everything was done, I suddenly found myself one day waking up with an intense desire to run and hide. Suddenly the smallest task was insurmountable. I felt completely incapacitated. I didn’t want to go to work, I didn’t want to clean house, I didn’t want to eat, I didn’t want to sleep. I wanted to die…I didn’t want to kill myself, I just didn’t want to live anymore and I sincerely wished I could just lie down, close my eyes and have it all be over. Everything around me suffered. I was desperately looking for purpose, for a reason for living, for a reason for being here. At the time, all I could do was run and hide. I left my home, lost my job and found myself alone and incredibly afraid…of life, of death, of everything. I spent hours, days, weeks, months seeking the happiness and love that once occupied my heart. The compassion and empathy I had always felt for everyone and everything in the world was shoved so far down my gut, it was like I was a robot. Just automatically going through the motions of living but with a mechanical heart pumping the blood through my veins. I didn’t know how to ‘feel’ anymore. At that time, I thought that I just needed time…to be alone…to find myself again. But over the years, I now believe that I had lost my sense of self so deeply, it was like I was no longer the same person. I was so desperately unhappy, and felt that no one understood how those 9 months had impacted me…and no one cared enough to ask…though many, many people were involved in my mom’s care…I felt a particular responsibility to look after her. After all, I always did my homework, followed the rules, respected experts opinions, if I did everything that was expected of me, everything would work out right?….wrong….I failed, I did everything I thought was right and my mom still died. I probably could have handled that fact in and of itself, but I couldn’t handle how she suffered….and that I had to be the one to ultimately decide when to stop care when I was told ‘nothing more could be done’. For anyone who’s ever had to make that decision, the doctors don’t properly advise you on just what that means or how they discontinue ALL care, ALL food, ALL water and essentially starve your loved one to death in a lonely, desolate hospital room because they are unable to improve their condition. I am haunted by the images of my mother…I am haunted by the way she looked at me…I can’t forgive myself for letting her down…I can’t forgive myself for not doing more. I know now that my actions after her death were my way of punishing myself…for not doing enough for her…I desperately needed to be rescued, I needed someone…anyone to extend a loving hand and reach down into the depths of my despair and tell me I had done everything I could….because I didn’t believe myself if I said it. If there was any time in my life that I should have cried out for help, it was then…but ignorance and pride made me believe that the pain I felt was so great, surely everyone around me could see it? Why weren’t they trying to save me? Why did I feel like I had lost everything when my mom died…and why, 6 years later have I made such little progress….
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I met my fiancee in 1999…we moved in together in 2001, we were inseparable. We moved from a small house we shared in the suburbs to a larger house on 13 acres of land. We were home. This was in 2008…in 2011 she was diagnosed with ovarian cancer. We had 4 great yrs in that house , the next 4 were hell. I quit my job to be her full time caregiver. The memories I carry are being with her when they would drain her lungs, eventually I would be doing this at home for her, along with injecting her stomach twice a day, showering her…I was 2 people for those 4 yrs. I still can’t sleep, 2 hrs maybe. I’m so in debt now,living week to week. it’s a constant reminder of what I watched her go through. Sorry to go on and on. It helps sometimes to get it out. Hope you understand.
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My heart aches for you. What a wonderful partner you were to your fiancee, but now you’re left with such painful memories. Please try to find a support group to allow you to connect with others who have similar experiences. Sharing your story will be very therapeutic and validating, and at the same time you’ll be helping others to know they aren’t alone. May you find peace as you move forward with your life.
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It’s been 7 years now since my mom passed. I had a horrible time at first and several years after. I was her primary caregiver while she was sick, in and out of the hospital for about 6 months. Several times in ICU, and that’s where my first panic attack occurred. I was not expecting the machines breathing for her, they were pumping blood into her it was chaotic. I continued to be the one she counted on, my dad her husband refused to sign things and let me be the power of attorney over her medical matters. So I live with huge guilt of what decisions I made, or did I make the right ones. She had a horrible antibiotic resistant infection, turned into sepsis. She was also diabetic and contracted C-diff while on long term antibiotics. I was always by her side, she was also my best friend. I had no idea she would die, it just was never put to me like that, it happened so fast, I had to be brave sign a DNR. I hate my father for what he put me through. Just 2 days ago my mother-in-law had to go into the hospital for heart problems, this triggered a relapse I had a full blown panic attack and couldn’t breathe. I feel so scared for her and my anxiety is back, I can’t explain the feeling,it’s like the thought of her being there in the hospital alone is unbearable. It’s not my mom and I we aren’t that close but I can’t stand it. I feel a need to be there but at the same time the hospital setting horrifies me. I have avoided them at all costs since my mom passed. I can still remember every detail of that final day with my mom, it is such an empty feeling leaving with a bag, her pillow. I miss her so much. I just realized this was an Alzheimer’s website, I thought it was regarding PTSD and caregiver’s. Sorry
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I took care of my mother at her home
For 2-1/2 years with lung cancer and
Alzimers. Stayed every evening and
Went to my home showered and went
To work. Hospice and my mother in law
Were there during the day. I had no
Idea what was around the corner.
I finally had a stroke. That’s when they
Put mother in temporary nursing home
I was fortunate I only lost about 8 months memory than had to deal
With getting her in permanent nursing home. For memory loss. During all
This I had allready put step father in
A home. He’s a veteran try that.
I know many have. Mother passed
And stepfather is still alive with
Alzimers and very bad diabetic.
And then his sister that very seldom
Spoke called and accused me of
Mistreating him. And threatening to
Take me to court omg. The didn’t
Get along at all he raised me from
5 years old. I’ve only begun to start
To chill. Can’t work because of other
Disability. God bless you all
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I did intense caregiving for about 20 years for my dad who has ALS and now resides at a care facility. He is in a coma. Definitely identify with this information. It is very hard to let go of the suffering you have witnessed. I have been attempting to provide a shower to my friend who is a stroke survivor for several days. We both know it is difficult for me and I hope to be able to complete the task today. Thank you for writing about this topic and for the information. Not talked about a lot.
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Thank you for your comment, Mollia. I agree, this topic isn’t talked about enough and I hope that will change. Bless you for caring for your dad for such a long time and for helping your friend. It takes a very special person to do what you’ve done and continue to do. Please remember to take care of yourself as well.
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We were blessed with the ability to have mom stay home throughout her ten years with Alzheimer’s Disease. I became a Certified Nurse Aide in preparation for the time when I would be needed at her home full time. I had a full-time office job until mom went into the advanced stage of Alzheimer’s disease. At that time I became a full-time caregiver, partnering with my dad and receiving part-time help from a hired aide and from my 23 year old daughter. My daughter and I moved in with mom and dad and I took the night shift of rotating mom every three hours to prevent soreness. Daytime rotated around making and serving mom “power drinks”, repositioning her in her chair, transferring her to a toilet every three hours, providing soothing stimulus, and getting her outside when possible. Two years later mom passed peacefully at home with family by her side. Immediately after mom’s passing I began sleeping 10 to 14 hours at bedtime and napping throughout the day. We have our all to mom, knowing the end result would be death. Six years later I have held numerous jobs from one to ten months. I have not been successful in returning and growing in an office position. My experience working at a nursing home was awful. I was assigned to several patients with advanced dementia. I broke down in tears within the first hour and made it through my shift only because other aides stepped in to help. I never worked at a nursing home again- – until recently — six years later. My assignment was to be a personal home health aide to a 70-something year old going through physical therapy following back surgery. The first three weeks seemed to go well in leading her in upper and lower body exercises assigned by the physical therapists. However, week four involved a revealing by a neurologist that the patient has dementia. It is now week seven and the dementia is quite evident. Some sort of PTSD in me is now also quite evident. I am full of anxiety, depressed, and barely able to get personal tasks accomplished. My doctor just agreed to increase my anxiety medicine. But each visit to my client is becoming more and more difficult before, during and after the visit. I feel awful knowing that my attempts to strengthen her and get her reacclimated to the world outside of the nursing home are in vain — that her dementia will continue to worsen. I am coming to the conclusion that I can no longer help any patient with dementia without it causing me mental and emotional trauma because of my past. I just hope that my PTSD will not negatively affect my ability to work with younger adults with special needs.
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I was my husbands caregiver for ten years. After an unsuccessful quadruple bipass each year got worse after the bipass he started developing all kinds of health problems. Diabetes, kidney disease, copd. And many others. I felt like I had went into the hospital and sit by his bedside while he was unconscious for 6 days then brought home a similar stranger. Every year his health became worse. Many stays in ICU for weeks or as much as 2 months. I stayed every minute slept I. A recliner next to him. 14 stents and oxygen theropy later we rarly left the house. He spent most of his time in bed. In July of last year I planned to take him on a trip to see his family on the west coast. Being on edge all the time I wanted to go get a good checkup and breathing treatment before going. They immediately admitted to hospital once agin. This time a different dr ran a different test, pulmanary hypertension! Very advanced. Maybe 3 months left. There was a new treatment he wanted to try. I ended up having to take classes and pass them for him to come home. The meds were so dangerous no one would take him but I wouldn’t let that happen anyway. After 9 weeks in bed very little movement allowed my classes passed we came home with high hopes of new med. I had big boxes of med equipment and meds. Had to mix these dangerous meds from powder to fill a pump, it could not be shut off for than a. Rey few minutes or death. Change tubing for the cath they had put in his chest. I could go on and on about how stressful the whole situation was but pretended for his sake. Worried constantly for years that I could find him gone at any time. The has month of his life I had to call an ambulance twice. A line connector broke and I couldn’t repaire it. With a. Rey few minutes to get help. Next a bad spell it suddenly call for them again. He couldn’t even get to the wheel chair. Very bad. Going to big hospital had to stop to stabilize him then in. That was a Thursday night. I followed He seemed to have been doing better suddenly Sunday night he took a turn for the worse. Oxygen up all the way. I was used to these ups and downs so just sat by his bed and held his hand of course drs and nurses in and out but that wasn’t uncommon. At 4:45 a m a dr said I’m sorry he’s GONE. I just froze totally in shock. My sister arrived and I was like a zombie or something. They walked my through paperwork funeral home etc I still didn’t realize why. This couldn’t be?? Not after 10 years of ups and downs. I stayed like this for 3 months never a tear just blankness?? I didn’t get out of bed but when I was made to shower.
Still didn’t comprehend he was gone. Then I finally go up. Weak for eating very little then the tears started! Hard tears that wouldn’t stop for days and days. The pain had hit! The heartbreak and grief. He’s been gone 6 months now. I very seldom leave the house or have visitors just set alone. I have had depression many years ago this is not that. I don’t want to see people , I don’t want to see town. Anywhere as we had traveled a lot. This has became my safe place I have seen my dr I was o jumpy and nervous and withdrawn e diagnosed me with PTSD. I’m on anxiety meds and anti depressants. I don’t feel depressed. I will be 70 shortly but am healthy. I’m completely lost about my future alone. My son did comets live with me after I got no better. He’s a blessing so I’m not totally alone. Can’t listen to music watch tv go anyplace everywhere I turn I see or hear something that brings back loosin my wonderful husband whom I loved very much and he me also. My best friend my everything. I don’t know if I will ever be able to go out because everything gives me flashbacks of goof times or bad things. Either way they are very painful so I just stay in. This is my story. I lost my dad years ago and my mom almost 4 years ago to cancer she passed at home with my sisters and I there. It was expected but painful I thought that I would be able to deal with this loss after sever losses before but this is like nothing I have ever experienced!
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I cared for my mother as best I could…I lost my job, my independence and (I believe) my mind while doing so. I cannot begin to explain the painful world you enter into when you become the caregiver 24/7 with someone who suffers from dementia AND sundowners. I loved my mother and I know she loved me but since her death I have done nothing but wonder if she will ever forgive me for how weak, angry and resentful I became over having to care for her around the clock. The greatest part of my grief is simply wondering if she still loves and forgives me…an answer that no one can give me except for my mother. I needed to read these comments…thank you
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Thank you for your comments and for sharing a bit of your own story. I am sending prayers that you will find a way to forgive yourself. You must remember that we all do the best we can given the circumstances. Sometimes our faith is all we have; please trust that your mother knows how much you love her and that she returns that love a hundred-fold. If you haven’t read the book The Four Agreements, I highly recommend it. It’s a quick, easy read, but is extremely powerful. It has helped me immensely.
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I think there should be a place where we can help each other physically. I know that after my mom and dear best friend Katey dog pass – that I will not be able to function. I want a room somewhere to try to recover for awhile. I’d like to plan ahead for something like that. I’ll probably just leave my house and everything in it and let it fall into foreclosure. Yes, I’ve really put a lot of thought into that. That’s if I even make it that far. I have some nodules on my thyroid right now, and I’m hoping the diagnosis comes back that I will live long enough to see mom and Katey dog thru to the end. But I’m getting the hell out of New York State as soon as there is no loved one to keep me here. I have two siblings, but they are not loved ones. They disappeared back before I started taking care of dad with Alzheimer’s for 8 years until his death.
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I’m terribly sorry for all you are going through, Susan. Sending my prayers for your strength.
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3 1/2 years ago I recorded a phone call. My husband was hurry at work, it was bad that’s all I remember, it was bad. Getting to the ER and seeing just a glimpse of a blood going through the doors, a person with a Chaplain name tag sewn on telling me these things happen…I thought he was dead…but he wasn’t. Severe TBI. My husband is forever changed and challenged and recovering. I sometimes think the fact that he can’t remember if a blessing. I can’t forget. That’s the beginning of my story.
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I’m very sorry, Lee. Thank you for sharing and I hope you will continue to tell your story; you have the power to help so many others facing TBI themselves or caring for someone with a traumatic brain injury. Sending my prayers…
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I so wished I had found this years ago. Thank you for setting this up. I struggled with what I called PTSD. No, I was not medically diagnosed. I suffered through it alone. I found a site where I was encouraged to write. I wrote memories and experiences good and bad. Memories I tried to remember but could not for the long struggle of all the caregiving I went through almost all of my life alone. It helped me pull through. The site where I was talking with others who began to see a pattern in what I was saying. Suggested PTSD. When researching it some of the parallels were spot on. growing up with my family dysfunctional and medical issues and I being the youngest of two children. A dad with epilepsy, my mom diagnosis with skitz when I was age 11, and a brother that I found out at adult age was borderline retarded and became skitz by the time I was 25. My dad diagnosed with cancer by age 26 and my mother put into a nursing home while I took physical care of my father. Brother in a mental hospital and commented suicide by the time I was 27. I was with my father when he passed away in my home by the time I was 28. I had Surgery for medical issues I struggled with myself. and a miss carriage. Moving my mother in and taking care of her until I was with her when she passed away I was age 32. I had 5 family members in8 years pass away which I helped take care of all gone by age 32. I gave up on having children of my own I was just to emotionally spent. I had walked in a state of just being not feeling or being for so long I was amazed at PTSD was so similar to what I had experienced. No was not a diagnosis. Considered going for therapy had done a little at my moms passing by it just did not seem to work. I still from time to time have issues but it took me 15 years to just begin to move forward. I had to do sylvan classes in order to begin to even write again I could not put a sentence together that made sense past three words. Caregiver PTSD does exist just not in the same terms as veterans but it does exist. I still struggle with my writing and my medical which I believe due to some of the past.
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I took care of both my parents for over 18 years I gave up everything and moved in with them. I have three other siblings two married with children and one that in his own world. I was single at that time no kids.
I was the one that went to every Dr Appt., took them to the ER, stayed with them every night they were in the hospital. It was just me, mom and dad, not one of them ever went with us to the Dr or the ER or came to the hospital. They both had COPD to watch someone trying to breath and take a deep breath with lungs that don’t work is awful. This was twenty four hours a day. So many things I wish…… Anyway my mom passed away first then my dad after dad passed I took a job in another town my siblings and I were trying to figure out when to go through my parents stuff, long story short I came home one weekend to an empty house two of my siblings cleaned out the house and took most everything. So on top of taking care of my parents by my self for 18 years they took everything. Now I’m married to a man who is sick all the time. My moms been gone 10 years my dad 6. For so many years I thought something was wrong with me the one sibling I talk to tells me to not cry or it’s time to move on, that was my life for so long how do you move on. I think about all of it all the time, I can’t get it out of my head and now I am married to someone who is sick a lot.
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I was the victim of a crime in 1975, and developed PTSD from that experience. I have have had small bouts of PTSD mania since them. However, I am a caretaker for my husband who has belittled me every day, and in every way. I have become manic again, and its as bad as the 1975 incident. I have overspent, and my husband and his family have ganged up against me, saying I’m not taking care of him.I have worked hard to care for this narcissistic bipolar, with no gratitude or kindness. Actually, I am relieved. I can finally get a divorce without feeling guilty. (He is 86 I am 66) We have been married for 23 years, and I have been a caregiver for 15. I am now calling myself a caretaker, because I have experienced so much grief over the years, that I can’t wait to get away!!!
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I definitely suffer from this I have never had any professional person mention this.I’ve been just feeling crazy. I’ve been a nurse for 24yrs, married to physical and emotional abusive man at age 22. Had 1 daughter that suffered from a severe drug problem. Found a relationship I was in for 22 yrs to a drug user and alcoholic that I was POA for when critical medical care needed to be provided. I’m unable to function day to
day and need help and support I am totally alone now.
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Ok first of all let me say that I am an only child. My mother had Alzheimer’s and died in 2006. 3 days after my aunt who was like a second mother to me, and one year after my father. I did everything for her. She forgot who I was. Her only child, her best friend. She was mean and cruel to me and I am STILL MAD at her. I know that makes NO SENSE at all. But there it is. I am royally pissed off at her for forgetting me!!! I KNOW all the evidence, I know it makes no sense, but there it is. I think about it every single day of my life now that my kids are grown and have their own families. Now my husband’s mother is about where my mom was, and I am having terrible issues dealing with this, since of course the family wants my help. I feel that I just can not do it again. I feel like I am going to lose my mind if I have to do it. Help.
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This helps me so much. No one understands really the bad dreams & and flashbacks of admininstering the drugs to my mom needed toward the end. She passed in my home. Our choosing…i wanted her to live in the most comfort possible..i gave up my job & all church activities etc to care for my mom with advanced acute leukemia… she went down hill quickly. It was extremely demanding. It’s been about 2 1/2 weeks since she passed & people think i should be getting back to doing my normal life. I just can’t seem to cope yet. It’s affected my marriage, as the grief & memories of the caregiving in those final weeks really has affected my emotions. No one gets it. I feel alone even though I know God is with me. Thanks for these words. Keep them coming. God bless.
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Jane – your words remind me very much of how I felt in the months following my mother’s death. The flashbacks, dreams, vivid images – I didn’t want to close my eyes because inevitably, I would see something I didn’t want to see. I also remember looking around and seeing people going about life as if everything was normal when, for me, things were anything but normal. It’s just such a difficult experience and the only way to truly deal with it is to face it and walk through it, but that is so painful, and the timeline is unique for each individual. Sending warm thoughts and healing prayers.
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Our church has recently just begun to offer a grief support group. Being new to this, they are lacking true comprehension of what is involved in grief. They are doing their best, but they have a lot to learn.
Grief isn’t the same for everyone. The program they are using is a “triage” approach, that approaches grief and recovery from a “general” approach. They don’t understand how different the grief can be for someone who was a long-term caregiver. The chronic long-term stress, fear, loneliness, anxiety, financial issues, battles with insurance companies, etc. It is there day after day, year after year. It is worse if you don’t have a good family support system, or friends who are able to understand what you are dealing with.
I cared for my mother when I was 25. She was dying of ovarian cancer. This was way back in 1977, and they didn’t have the treatments or Hospice Care as they do today. After her death no one said a word about my getting into a grief support group. My family was totally non-supportive.
Years later I was once again a caregiver of my first husband who had brain cancer. He wasn’t supposed to be alive, but he lived for eight years, but with very serious disabilities, and memory issues. Our son was 7, so not only was I a caregiver to my husband, but for my son (who had asthma). On top of this I was diagnosed with breast cancer two months after my husband was diagnosed with brain cancer. We went to radiation treatments together. Once again, my family was non-supportive. They even told me the reason they stayed away was because I had “too many needs” – there were too many things I needed help with. A very strange response indeed!
I am remarried now, and it is 20 + years later, but I still deal with PTSD. I fit all the classic symptoms of it. Bad dreams, triggers that set me off, sensitive to noise and crowds, paranoia, etc. I am getting better, but I can’t afford one-on-one therapy. That is why online sites such as this are so helpful. I am able to read and see how others are dealing with the same thing, and get suggestions and helpful advice on how to proceed in my situation.
Thankyou for this site. And thankyou for allowing us to voice our feedback in a place where people “get it”.
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Ann, I couldn’t agree with you more — no two people experience grief in the same way. After my mom passed, I started a grief program through a local church and ended up dropping out after a couple of weeks. While it was perfect for some folks, their approach just wasn’t for me. I think we have to be honest with ourselves and be okay with moving on if we try something and discover it’s not working. I’m so sorry for everything you’ve been through, particularly when you were so young. Perhaps one-on-one counseling would help with some of the residual effects you’re feeling. Sending you healing thoughts and prayers.
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I believe I am suffering some type of caregiver ptsd, my mom-in-law passed away only 2 weeks ago, myself and my hubby (her son) were her care givers for 8 years 24/7 no matter what, we put our lives on hold, MIL’s hubby lives abroad and did nothing to assist in her care, yet now both he and MIL’s family are circling like vultures for money they wont help at all, both myself and my husband are unable to process the grief we have because of this and my hubby is now on antidepressants, i feel numb most of the day, i dont sleep and now MIL’s sister has started eviction procedures and we havent even gotten the death certificates yet, I feel on the verge of losing my mind because of the stress, and lack of support from family, how can myself and my hubby tackle our feelings of loss when we are being battered from all sides
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I’m so sorry, Marie – you have been through a great deal. I’ve found the passage of time does help, but it’s a very gradual process. Counseling may help you sort through and process the many emotions that accompany grief and life after caregiving. Sending healing thoughts and prayers.
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My father passed less than 6 months ago and I helped my mother who was his caregiver while trying to raise my 3 kids on the middle of COVID and lockdown. My mother relied on me heavily as my father’s dementia progressed and my family took a backseat for almost 1 1/2 yrs before he passed.
I knew I was stretched thin and not present for my own kids most of the time as my parents needed me during the day, evening, late at night to go find my dad who had wandered off or to sit with him and calm him down….
When he went into hospital for 2 weeks, I was with him everyday, fed him dinner and stayed with him until 10pm. This went on for 2 weeks until he was transferred to hospice. That night my mother went home to rest and I sat with him until they came to transfer him at 2am. I went with him to hospice and slept in a chair beside him, hoping he wouldn’t pass away while I was alone with him and I counted the minutes until my mother came back in the morning. I spent the week there with him and my mom, going home to see my kids for 1 hr and grab a few items.
I am glad I was there with him and could support my mother, but I feel she put a lot of the responsibility on me because she couldn’t cope.
I have flashbacks to hospice, to listening to his breathing, moistening his mouth and his last moments. They come on suddenly and I don’t feel anyone around me would understand. Sometimes I think I’m doing okay, working full time, juggling kids, supporting my husband and trying to survive lockdown… but then a memory surprises me from those last days in hospice and I’m not okay again.
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I’m so sorry for all you’ve been through, Tasha. I can relate to feeling “okay,” only to be thrown for a loop by a memory or flashback that seems to come out of nowhere. Even 8+ years later, this happens to me. The passage of time does help, though. This is all still very recent for you. Be patient and gentle with yourself. Perhaps consider a grief support group, either in person or online. Also, many times, hospice providers will offer free grief counseling for a year following the passing of a loved one. You are not alone; sending my thoughts and prayers.
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