Caregivers, are you experiencing any of the following symptoms?

  • Fear and anxiety
  • Nervousness
  • Difficulty concentrating
  • Memory problems
  • Irritability
  • Sadness
  • Feelings of isolation
  • Guilt
  • Changes in how well you sleep or how much you eat
  • Crying spells that catch you off guard
  • Emotional numbness
  • Nightmares
  • Shock
  • Increased heart rate
  • Muscle tension
  • Rapid breathing
  • Inability to stop thinking about traumatic events

I know you’re looking at this list and saying, “Of course, I’ve experienced some of these feelings during, and after, caregiving – some days I experience them all at the same time!” It’s understandable that you may have a wide range of feelings and emotions while you’re caring for a loved one, or after the loved one you were caring for has died. These feelings will vary, depending on the intensity of your caregiving experience: the closeness of your relationship with the person you are caring for; whether you are the primary caregiver and have assistance or support; the severity and length of your loved one’s illness.

But it might interest you to know that while the symptoms listed above fit caregivers to a tee, they were not found in articles about the stress of Caregiving. They are all from articles about Post Traumatic Stress Disorder (PTSD).

THE TRAUMAS OF CAREGIVING
While it’s generally accepted in the medical community that PTSD symptoms manifest in people who have experienced trauma related to war, natural disasters, car or plane crashes, terrorist attacks, sudden death of a loved one, rape, kidnapping, assault, sexual or physical abuse, and childhood neglect, the trauma of caregiving is very rarely included in articles about traumatic events that contribute to PTSD.

Read this description of PTSD:
“Post-traumatic stress disorder (PTSD) is a disorder that can develop following a traumatic event that threatens your safety or makes you feel helpless. PTSD can affect those who personally experience the catastrophe, those who witness it, and those who pick up the pieces afterwards, including emergency workers and law enforcement officers. It can even occur in the friends or family members of those who went through the actual trauma. Most people associate PTSD with battle–scarred soldiers–and military combat is the most common cause in men–but any overwhelming life experience can trigger PTSD, especially if the event feels unpredictable and uncontrollable.”

As a caregiver, you know how traumatic caring for an ailing or dying loved one is; how helpless you feel; how overwhelming all of your responsibilities can become; how unpredictable and uncontrollable your loved one’s disease and symptoms are. So the next time you’re feeling like a wimp because you burst into tears occasionally, or an idiot because you keep forgetting things, or a grump because you lost your temper for a second, or an insomniac because you can’t sleep at night, or a hypochondriac because you keep having unexplainable pains that come and go, cut yourself a little slack. Caregiving is one of the hardest things a person can choose to do for someone they love, and the inherent stress and trauma creates a myriad of mental and physical problems.

There are no Caregiving 101 college courses, so you learn as you go. You’ll make some mistakes, every caregiver does. Just remember, you’ll be a better caregiver if you’re healthy and rested. So taking care of yourself is just another one of the things you need to do for your loved one, to ensure that you’ll be able to help them for as long as they need you.

A DIAGNOSIS OF PTSD
Not everyone who has experienced a traumatic event has Post Traumatic Stress Disorder. Many people experience traumatic events, and it’s normal to have strong feelings of anxiety, sadness, or stress afterwards. You may be experiencing some of the symptoms of PTSD, but this doesn’t mean you have PTSD. Many of the symptoms of PTSD are part of the body’s normal response to stress.

For this reason, mental health professionals have come up with specific requirements that must be met to get a diagnosis of PTSD. These requirements are referred to as Criteria A – F and are outlined in the 4th edition of the Diagnostic and Statistical Manual of Mental Disorders. The six criteria for a PTSD diagnosis are described below.

Criterion A
A person must have experienced a traumatic event where both of the following occurred:
•    The person experienced, witnessed, or was confronted with an event where there was the threat of or actual death or serious injury. The event may also have involved a threat to the person’s physical well-being or the physical well-being of another person.
•    The person responded to the event with strong feelings of fear, helplessness, or horror.
Criterion B
The person experiences at least one of the following re-experiencing symptoms of PTSD:
•    Frequently having upsetting thoughts or memories about a traumatic event.
•    Having recurrent nightmares.
•    Acting or feeling as though the traumatic event were happening again, sometimes called a “flashback.”
•    Having very strong feelings of distress when reminded of the traumatic event.
•    Being physically responsive, such as experiencing a surge in your heart rate or sweating, to reminders of the traumatic event.
Criterion C
The person experiences at least three of the following avoidance symptoms of PTSD:
•    Making an effort to avoid thoughts, feelings, or conversations about the traumatic event.
•    Making an effort to avoid places or people that remind you of the traumatic event.
•    Having a difficult time remembering important parts of the traumatic event.
•    A loss of interest in important, once positive, activities.
•    Feeling distant from others.
•    Experiencing difficulties having positive feelings, such as happiness or love.
•    Feeling as though your life may be cut short.
Criterion D
The person experiences at least two of the following hyperarousal symptoms of PTSD:
•    Having a difficult time falling or staying asleep.
•    Feeling more irritable or having outbursts of anger.
•    Having difficulty concentrating.
•    Feeling constantly “on guard” or like danger is lurking around every corner.
•    Being “jumpy” or easily startled.
Criterion E
The symptoms described above must have lasted for more than a month. If the symptoms have lasted for less than a month, you may have another anxiety disorder called Acute Stress Disorder.
Criterion F
The symptoms described above have a great negative impact on your life, interfering with work or relationships.

MANAGING PTSD
As with any problem, knowing that you have the problem is the first step toward wellness. Once you put a name to the problem you can begin to do research and get help for it. Some people try to manage their PTSD in unhealthy ways (alcohol, drugs) but there are ways to cope with the symptoms and try to turn it around. Finding the coping strategies that work for you is important – strategies that work for you may not work for someone else, and some strategies may work for you at some times and not during others.

Get professional help. If you think you may have PTSD, it’s important that you meet with a mental health professional trained in assessing and treating PTSD. There are therapists who specialize in PTSD, and  psychological treatments  and medicinal treatments that have been shown to be effective in alleviating symptoms. Even if you don’t have PTSD, if you’re experiencing these symptoms and your life is being disrupted by them, reach out for support. Many people who suffer from PTSD, and caregivers especially, are embarrassed to admit they have a problem to others. They feel selfish turning attention on themselves when their loved one is suffering or has died. It’s difficult to overcome the shame, but isolation will only compound symptoms, while social interaction with supportive friends, family, or a support group is beneficial.

Learn to relax. Make time to do something that will focus your mind outside of yourself, and get some fresh air and possibly some exercise – long walks in a pretty place, yoga or meditation, gardening, biking, sailing, or swimming. Less active distractions are still good for your mind: movies, reading, spending time with friends or animals, cooking classes, a hot bath, listening to music, whatever works for you. If you’ve been avoiding activities that were previously pleasurable to you, give them a chance. If they no longer please you as they once did, at least you’re trying, and you may discover something new to take their place.

Express yourself. Find ways to get what’s all jumbled up inside of you out and onto paper, canvas, or wood. Get a journal and write a little every day. Keep a Dream Journal by your bedside table. If you’ve never painted before, find a class, or go to the art or hobby store and buy some cheap canvas panels, some paints in colors that appeal to you, and a few brushes. Just paint. It doesn’t have to look like anything, sometimes just smearing colors around is therapeutic.  It’s best to start with Acrylic paints because they don’t smell, they dry fast, and you can clean the brushes with soap and water.

Get healthy. Never underestimate the connection between your body and your mind. Start being mindful about what you’re eating – get some fresh fruits and veggies in your diet. The next time you’re waiting for the toast to pop up, do some pushups against the kitchen counter. Start moving – your body’s just waiting for a chance to show you what it can do, and your mind will follow.

Spirituality. Many people find comfort in the spiritual realm. Whether you find it in a church or in a forest, connecting with a power greater than yourself can give you a much needed sense of peace.

THE COSTS OF CAREGIVING
A new study conducted by the MetLife Mature Market Institute in partnership with the National Alliance for Caregiving and the Center for Long Term Care Research and Policy at New York Medical College found that the percent of adult children caring for their aging parents has tripled in the last 15 years, and that providing this care costs the caregivers $3 Trillion in lost wages, pension, and Social Security benefits. Assessing the long-term financial impact of caregiving for aging parents on caregivers themselves, especially those who must curtail their working careers to do so, is especially important, since it can jeopardize their future financial security. There is also evidence that caregivers experience considerable health issues as a result of their focus on caring for others. The need for flexibility in the workplace and in policies that would benefit working caregivers are likely to increase in importance as more working caregivers approach their own retirement while still caring for an aging parent. Link: The MetLife Study of Caregiving Costs to Working Caregivers – Double Jeopardy for Baby Boomers Caring for Their Parents.

The key findings of the study:

  • The percentage of adult children providing personal care and/or financial assistance to a parent has more than tripled over the past 15 years. Currently, a quarter of adult children, mainly Baby Boomers, provide these types of care to a parent.
  • The total estimated aggregate lost wages, pension, and Social Security benefits of these caregivers of parents is nearly $3 trillion.
  • For women, the total individual amount of lost wages due to leaving the labor force early because of caregiving responsibilities equals $142,693. The estimated impact of caregiving on lost Social Security benefits is $131,351. A very conservative estimated impact on pensions is approximately $50,000. Thus, in total, the cost impact of caregiving on the individual female caregiver in terms of lost wages and Social Security benefits equals $324,044.
  • For men, the total individual amount of lost wages due to leaving the labor force early because of caregiving responsibilities equals $89,107. The estimated impact of caregiving on lost Social Security benefits is $144,609. Adding in a conservative estimate of the impact on pensions at $50,000, the total impact equals $283,716 for men, or $303,880 for the average male or female caregiver 50+ who cares for a parent.
  • Working and non-working adult children are almost equally as likely to provide care to parents in need.
  • Overall, caregiving sons and daughters provide comparable care in many respects, but daughters are more likely to provide basic care and sons are more likely to provide financial assistance.
  • Adult children 50+ who work and provide care to a parent are more likely to have fair or poor health than those who do not provide care to their parents.”

A 2010 by MetLife found that: “Employees responsible for eldercare report more health problems than non-caregiving employees and cost U.S. employers an estimated $13 billion annually. Demographic trends indicate that a greater number of employees of all ages will assume the role of family caregiver for an increasingly older population. In combination, these trends mean that more employees will be dealing with eldercare issues. This brings to the forefront an urgent need for employers to actively address how to best facilitate the realities of employees dealing with eldercare responsibilities.”

Among the findings of that study:

  • Employees providing eldercare were significantly more likely to report depression, diabetes, hypertension, or pulmonary disease regardless of age, gender, and work type.
  • Younger caregivers (ages 18 – 39) demonstrated significantly higher rates of cholesterol, hypertension, chronic obstructive pulmonary disease (COPD), depression, kidney disease, and heart disease in comparison to non-caregivers of the same age.

Often mischaracterized as an “older worker” issue, demographic trends indicate that a greater number of employees of all ages will assume the role of family caregiver with an increasingly older population. The results demonstrated a clear impact of eldercare burdens o the health issues fact in employees ages 18 – 39, as much as those ages 50 and older. Together, these results suggest that caregiving for an older relative is an important factor in the health, medical care expense, and productivity of employees across all age groups, and therefor int he health costs for employers. Employers can server the best interests of their employees as well as those of their corporation by anticipating and responding to the challenges of eldercare for their employees. Link: The MetLife Study of Working Caregivers and 
Employer Health Care Costs

CAREGIVER PTSD AND FINANCIAL STRESS

I wrote this article because while doing research on soldiers and PTSD, I came across the above diagnostic criterion and realized that I still experience a few of the symptoms of PTSD, even thought it’s been five years since my husband died. But I’m lucky, I possess the abilities to channel my feelings positively and constructively, and I have a good support system of friends, so I continue to mend. Some of the caregivers I communicate with exhibit all the symptoms of PTSD and say they wonder daily how much longer they’ll be able to hold on, mentally, physically, and financially. In the current economic climate, many caregivers have the added stress of housing, feeding, and purchasing medications for their loved ones while struggling financially, or unemployed. Their contribution to society, and the burden they spare hospitals and governmental agencies from carrying, is undeniable. Employers, the medical community, and the government has to do more to help this growing segment of the population, before they fall ill themselves and end up in hospital beds alongside their loved ones.

Financial aid; tax breaks; eldercare benefits; wellness programs; affordable insurance plans that cover uninsured dependent parents; free legal and financial advice around Medicare, Medicaid, and insurance issues – there are many ways we can begin to lighten the load carried by this growing segment of our society. And by recognizing that caregivers suffer from PTSD, the medical community will be opening doors to diagnosis and treatment for a group that has suffered in silence for too long.
SOURCES
Mayo Clinic http://www.mayoclinic.com/health/post-traumatic-stress-disorder/DS00246/DSECTION=symptoms
Web MD http://www.webmd.com/anxiety-panic/guide/post-traumatic-stress-disorder
Help Guide http://www.helpguide.org/mental/post_traumatic_stress_disorder_symptoms_treatment.htm
About.com http://ptsd.about.com/od/symptomsanddiagnosis/a/PTSDdiagnosis.htm
About.com http://ptsd.about.com/od/selfhelp/a/PTSDcoping.htm

 

129 Responses to Caregivers & Post Traumatic Stress Disorder (PTSD)

  1. Lu LU says:

    I have recently lost my mother in February and after witnessing her in end of life stage, hands reaching out, not able to talk, I know I’m suffering from PTSD. I am very angry at the medical system as she went in with septicemia and after I begged the Dr. to continue her IV and antibiotic she came through. She was tricked into asking if she would like to continue needles, well my dear Mother (I was not present) would surely say, just take the pain away….I asked her every day and she wanted to live, they took all her pills away.

    I am suffering so much, will never get over it, she was 83. The hospital called in the middle of the night to come see my Mother after she died. I managed to beg them to continue one drug, digoxin, for her congestive heart disease and that is what kept her alive for 30 days, the dr said she had 3. She was the love of my life, I was also a caregiver and was in a state of crisis when they were trying to make me make decisions, to a rest home ?? how could she live without her pills?? I was frantic. I will never forgive myself for all the bad decisions I made, haven’t been able to function well and this has affected my whole family as I have been in a state of anxiety and never anticipated the death of my beautiful Mother. To see her lying there on a bed dead was truly heartwrenching and to hear the nurse say “she was in a lot of pain before she died” was completely ignorant. To see your Mother writhing to reach you and you are in agony is so traumatic.

    Please I hope to hear feedback to get me through this. Trying to do all the right things, did go to a hospice counsellor but she was just terrible, made me feel worse. It even made the symptoms worse the next morning, almost went to Emerg. I know I am talking about myself but the flashbacks, sweats, crying every day and visions of her body, face and a tear in her eye have left me traumatized. I would so like to hear back from people. This has to be PTSD. My Dr. is not very good in helping, you have to ask, he won’t do anything.

    Thankyou for reading and hope to hear back. I would like to be at peace, however, with visions of her in pain reaching out to me and fading with no response has left me in agony. I so wish there was some comfort to know she did not suffer.

    • Jean F says:

      Lu Lu, I can feel the pain radiating from your words and I’m so sorry for what you’re going through, and for what your dear mother went through. The memory of your mother reaching out to you is so potent and fresh right now, and I know that every time that image pops into your head your whole body contorts in pain. Please believe me when I tell you that, while you will always have that memory, the pain you feel will slowly diminish. It will, of course, always hurt, but eventually that gut wrenching anguish will become a kind of sorrow you will be comfortable with.

      You’re beating yourself up because you feel you made some “bad decisions”, but that’s the problem with decisions, especially decisions made when you’re not yourself – you don’t know they’re the wrong decisions until you see the outcome – until you can look back on them later and view them calmly and rationally when the dust has settled. Your mother was in a hospital, and we would all like to think that our loved ones are safe and well cared for when they’re in the hands of professionals. You had every right to trust that the doctors and nurses were making treatment decisions that would heal and help her. It sounds like you actually did make some decisions that helped her, even though you had to fight to have them implemented. We caregivers tend to remember where we failed, and forget our little triumphs. When you’re tripping through the rubble of bad decisions, try to look for the good ones – you may have to dig a bit to find them, but they’re there, and they are important.

      I know the anger is eating you up inside, so it would be good to do something with that anger. Going up against the hospital is futile, you don’t have a medical degree and so knowing exactly what they did right or wrong, and proving it, would only add to your anger and frustration, maybe for years. Your mother wouldn’t want that. However, I do think it would be a good idea, both for you and for future patient loved ones, to write that foolish nurse a letter. Not a nasty, angry letter, but a calm, reasoning letter to tell her how adversely her thoughtless comment affected you. That’s just crazy, to tell a grieving, distraught daughter that her mother was in great pain before she died – what possible purpose did she think that would serve? I think expressing to her how traumatizing her comment was might let a little bit of steam off for you, and could possibly save some future daughter the same pain. She’s a nurse – she got into her profession to help people, so hopefully she will want to know when she’s doing something that actually hurts people.

      Dealing with the grief is different, and I think sometimes the anger is a way of distracting us from that intense grief we’re walking around with like a bleeding wound that no one else can see. I don’t know you personally, so I can’t know what your talents and strengths are, but for me, doing something constructive helped immensely. First I did something for my husband’s legacy, then I created Don’t Lose Heart. I believe that finding a way to honor our loved ones is a balm, and there are many things you can do: a tree or bench in the park in your mother’s name; a donation to Make A Wish or other worthy charity in her name – these little legacy deeds are doable and therapeutic.

      Finding a way to channel your grief will go along way towards healing. When I created this website I had no idea how much comfort and healing would bounce back at me, but that’s what’s happened. If you can find a way to help others, even one day a week (volunteering at a local food bank, etc.), I think you’ll find it very beneficial. Is there a support group for people in grief in your area? That might be helpful too, and if there isn’t maybe you could start one. Check with any small local senior care centers or hospice centers, they could help point you in the right direction.

      Every caregiver here has some major regrets – something we wish we could go back in time and do over; do RIGHT. But if we actually were able to do that, those different decisions, those RIGHT decisions would only lead to new situations; new decisions to be made, and new mistakes would be made. Maybe worse mistakes. Caregiving is not an exact science – we aren’t doctors, we have absolutely no medical training and since it isn’t taught in school, the only way to learn is to DO. Everyone knows that any time you start a new job you’re going to make some mistakes – the problem with caregiving is that this new job has a direct effect on people we love, so there is a lot riding on every move we make. So when we do make a mistake, it hurts us long after our loved one has forgiven us or died.

      If you had been the one in the hospital, and your mother had been your advocate, and made the same mistakes you made, would you be mad at her? Would you be glad to see her crying and asking you to forgive her for being careless and stupid? And when she asked you to forgive her, would you say, “I’m sorry, I just can’t.”? No. You would say, “There’s nothing to forgive – you did your best under stressful circumstances. You were there for me and just knowing that you loved me and were trying to help me made it more bearable.”

      Your mother reached out to you because she knew you would move heaven and earth to help if you could. But she also knew that you are human, and that is something you have to come to grips with yourself. Humans make mistakes, have limited knowledge, and humans get tired and overwhelmed. That’s what we do – that’s how we are made and all the good intentions in the world can’t change that. But the most wonderful thing about humans is our capacity to love. You were a good daughter to your mother – she knew you loved her and that is the greatest thing you can give to someone. She didn’t die alone, as so many people do, with nothing to show for her life – she had you there, and it doesn’t matter how many “mistakes” you made, the fact that you allowed her to leave this planet knowing that her daughter loved her and would remember her long after she was gone was the most important gift you could have given her. You know she would want you to get on with your life now. She wouldn’t want you wasting any of your precious time here because her time ran out.

      I wish all of these things I just shared with you could magically make it hurt less – they won’t. But if you take them to heart you can use them to start rebuilding you. You will never be the same. I know it doesn’t feel like it right now, but you are wiser and stronger. Don’t push yourself – those tears are going to come out when they need to – don’t let anyone tell you that it’s time for you to “get over it”. If they do, let them know that you will never get over it, but you are working on getting on with it. And that takes time.

      I’m thinking a soft, warm, blanket of comfort around your tired shoulders right now. Pull it tight around you and think of something nice you can do for Lu Lu. Because whether you think so or not, she really does deserve it.

    • Char says:

      I am sorry for the loss of your dear mother, and for the guilt you are carrying on your shoulders.
      My mom passed three weeks ago in hospice. The last time she spoke to me or anyone was on a Tuesday,( she passed the following Saturday) she was screaming out to me in pain as the nurses, very carefully were trying to remove staples from recent surgery to repair a broken hip. She was on her side yelling out to me, my mom never raised her voice, in all the years I had the honor of being her daughter….. screaming for me to make them stop.
      They had given her a little extra pain med for this procedure but it hadn’t help. They ended up giving her more morphine and eventually removed the staples without any trouble.
      My point is that is the last time she spoke or opened her eyes, ate or drank. It is a lasting memory in my soul. All I could do at the time was try to calm her, and all she did was scream for me to get them to stop. My heart broke that day, and in my mind so did hers. I am sure she did not realize at the time what was going on, and thought people were torturing her. All I could do was watch and calmly speak to her, and that didn’t work.
      So I understand exactly were you are coming from, and how much it hurts.
      I do hope you take our wonderful Jean’s advice and do something nice for yourself.
      I find comfort in knowing my mom is out of pain, and knows how much I loved and cared for her. Things will never be the same, but then again, I really wouldn’t want them to be, she was my mom and I miss her every second of every day.
      I am here for you LuLu perhaps we can try to lick our wounds together and get through this, especially with the holidays fast approaching. Take my hand and we will walk straight through to the other side, baby steps, just small little baby steps.

  2. Julie says:

    My brother told me today that he thinks I have PTSD. I found this site, and I must admit. I do. I’ll start off by thanking you for running this website. My downward spin started in March of 2011. Before that, but that is the day I finally had to put my grandparents in a nursing home. Take care of them in getting them on Medicaid, selling their house, going through all their possession. The guilt of never letting them see their home ever again. Then, in November of 2012 dad was told he had a tumor. He had a biopsy, and at the same time my granpa was in the hospital having throat surgery. I was running from one end of the hospital to the other. Dad was found to have Stage 4 brain cancer. He and I were together when the doctor told him he would not cure this. He had six months to live.

    In February, we had to move him into a nursing home. The same one my grandparents were living in. Long story short. My dog and I were given our own room for free at the nursing home, and I lived there for 14 weeks taking care of my dad and grandparents. Believe it or not, my aunt and uncle moved in during the same time. I watched some horrible things with my dad. Mental, physical and emotional. Horrible. He died in April of 2012.

    Grandpa then died in November of 2012. I was with both of them when they passed. Then my uncle passed, then my aunt. After that, my cousin moved in, and I was there when she passed away. Now my grandma remains with severe Alzheimer’s. I have to help her (2 hours away), but phone as much as I can to calm her down since she cannot find grandpa and doesn’t understand.

    I started drinking a lot when I was at the nursing home taking care of dad. Just enough to help me fall asleep. Otherwise I would sit up with him at night signing to him, helping him with his issues of seeing things. I am still drinking about every day, but not to excess every day. I do not want to do the fun things I used to do. Bicycle, kayak, spend time with friends. If I don’t take a sleeping pill to go to bed, I lay awake most of the night. Afraid of my dreams. Work is hard. That is when I have recurrent thoughts of the last couple years. I get a panic attack.

    At first I was afraid to cross the street, go down escalaters, walk across a shinny floor, because I would get hurt. I am working on this issue. I am seeing a grief therapist once a week. Right now, I feel like I am at the bottom of a pit. My husband is ready to kick me out due to my drinking and gaining weight. He told my best friend I was drinking too much, so she is bulling me to give up the bottle or our friendship. I am afraid if anyone at work finds out, I will lose my job. If anyone is society finds out, I will be deemed a drunk. Most of the time I want to just be with mom, dad and grandpa. In Heaven. Oh, and I was there when mom died too in 2000.

    I should be grateful for my life. That is what bothers me the most too. I have a nice house, a great job, still have my brother. I was blessed with my dad’s inheritance (that still makes me feel guilty). But, yet, I still want out of this world, but can’t do that, because I believe if you take your own life, you cannot get to Heaven. So, I am stuck here. Sorry, I just needed to put it down. I wish everyone here luck. We only live once, so we all need to try to enjoy what time we have here.

    • Char says:

      Julie, I am so happy you found us, we will be here for you, and believe me understand some or all of what you have been going through.
      It is so very difficult to care for our loved ones, and you have done an amazing job of it for all these years. You are now left with the battle scars, and it is difficult at times to get back into some sort of routine. You have been with your family members as they crossed over, you have seen and done it all. You must go easy on yourself, you are seeing a therapist which is good, but you still have so much pain and sorrow inside you. You MUST TAKE CARE OF YOURSELF NOW, WORRY ONLY ABOUT YOU. I know you still have your Grandmother to worry over, but please know you have so very much to offer the living, how much helpful knowledge you can share, after all the caregiving years. Julie, we are here, now and always. Please feel free to email me.

      • Julie says:

        Thanks Char. That means the world to me. And, yes, I have been trying to help others with any caregiving thoughts and suggestions. I am trying to get back on track. I just feel at the bottom of a barrel. No goals, no energy to exercise, not sure what to do with my future. Just at a loss. I know there will be a light at the end of tunnel. I just keep focusing on that.

        • Char says:

          How bout we start thru the tunnel together, I certainly can relate to the weight gain, lack of exercise (if only tossing and turning all nite burned calories) and lots of sinking to the bottom of my barrel over the last 6+ months.

    • Jean F says:

      Julie, no one here would blame you for doing what you can to sleep and to numb yourself. What you went through was grueling and horrible, and one crisis right on top of the other, well, that would send anyone into depression and panic attacks. All I can tell you is that the memories of the horrific things you witnessed will fade. They won’t go away, but they will fade. So many of our caregivers have dealt with the guilt of transitioning a loved one into a full care facility – it breaks your heart, but the alternative would eventually lead to falls and broken bones.

      You can only do so much and then you have to listen to your head rather than your heart. “Tough love”, yes? It’s our time to give it back to our parents, doing what’s best for them even though “This hurts me more than it hurts you.” Now we sooo get it!

      It was so smart of you to get therapy, I hope it helps. It’s a good sign – the part of your brain that makes good decisions is working, you didn’t wear it out having to make good decisions for so many other people!

      It would be a shame if you went through all you did for your loved ones so that they could live out their lives, only to end yours too soon. You have so much to offer this world, I hope you take all that you’ve learned from the trauma and sorrow and use it to make a difference, no matter how small that difference is. I can tell you, it’s the BEST therapy.

      We’re here, you aren’t alone.

      • Julie says:

        Thanks Jean! I had my little pitty party on Wednesday. I think it was good for me. I went to my grief counselor yesterday, and I felt like I understood some things. I need to start taking care of me now. I have taken care of others for so long, that I forgot about me. Since November of 2012 I haven’t cared what I looked like. I hardly can get myself to even take a shower. I realized on Wednesday night when I went out with some girlfriends for dinner, they were all dolled up! I hadn’t showered in close to a week. It was a heads up that I even noticed and cared. Then, this morning, I saw the sun coming up over the river with fog and a Bald Eagle. Normally I would feel guilty, because my parents and grandpa wasn’t there to see it with me. I need to realize that maybe they are seeing what I am. That, or they are seeing even greater beauty than I am. I shouldn’t feel guilty. It will take time, but I will keep working at it. I fell asleep last night with just taking 1 Ambien. My husband wants me to be better “NOW”. I just need to take it one day at a time. It will come. Thanks to both of you for your help. It does help. I am going to a work meeting in a half an hour, and I may wear lipstick!!! :)

        • Jean F says:

          Julie, thank you for choosing DLH for your pity party needs! :-) We love it when people hold pity parties here, because it means they are turning some of the wonderful compassion they usually reserve for others toward themselves. I can almost guarantee you that those of us who attended were NOT wearing makeup, were probably in the same comfy clothes we wore yesterday, and were in need of a hair stylist. I can’t speak as to anyone else’s frequency of bathing; for me, a bubble bath at the end of the day is a necessary luxury. Something about the white sparkling hills of coconut-scented bubbles makes me feel a little giddy. Ahh!

          As you find yourself needing the alcohol and Ambien less and less, I hope my post “Addicted To Sleep Meds”, about how I weaned myself off of Ambien, will be helpful.

          Reading your last comment, I can see that you are going to pull yourself out of the tailspin you were in. You are a survivor, and Survivor Guilt is VERY common among caregivers. And soldiers. You know from reading the article on PTSD that we come away from the battles we waged for our loved ones with our own scars. The next time you feel guilty because you’re experiencing pleasure at being alive, or you’re crying over a painful memory, take an imaginary purple heart medal and pin it over your brave, compassionate heart and know that you earned every breath you take. If they are looking down on you, it will make your loved ones happy to see you beginning to soar once again.

          • Julie says:

            Ah, crap! You made me cry :)

            I know I will have my ups and downs still. This is the first real up I have had in a long time. You need to feel the ups to know what you have missed. You need to feel the downs to know that the ups feel pretty darn good.

            I will keep my purple heart and think of it every day. I guess one thing good has come out of all this. I am not afraid of a nursing home. And, I am not afraid to die when the time comes.

          • Char says:

            Yes, we do have all that is needed here for a fantastic pity party, and the shoulders to cry on, and hands to hold. It is so great to know that everyone here gets it and understands where we are coming from and where we might be headed. Hope your day today Julie was filled with sunshine if only from the smile of a stranger. We are here, don’t forget.

            • Julie says:

              Fell off the bandwagon on Saturday. I have been doing okay since then. Today was another emotional day. Not as bad as last week, luckily. Happy thoughts, laughs and back to unhappy thoughts. I guess it is all in the healing. I am caregiver to my grandma who is two hours away. I had to make a decision on getting some dental work done, or leaving the fractures and broken tooth the way it is. I decided since she isn’t in pain, to just leave it for now. Personally, that is the hardest part of caregiving. Making decisions for your loved one. Yeah, dental isn’t a horrible decision, but I have had to make some pretty big life care decisions. I don’t like to make those “God” like decisions. Anyway, I hope you are all doing okay yourselves. Pray that I make it out of this period in my life with my marriage intact!

              • Char says:

                Julie, we all fall from one location or another in these caregiving times. Thinking you made the right decision for grandma. I hope your marriage will be ok, You are dealing with much, and have seen so much with your loved ones at the end of their earthly journey. I so admire you.

    • karen says:

      Julie your story is very similar to mine. Thank you for sharing this. It’s been three years since I lost my family members after being their caretaker. I know I have PTSD and am only getting worse. I am going to start looking for help. The things I have experienced have been “horrifying”. I will pray for both of us.

      • Char says:

        Karen, Realizing you have PTSD is your first step, and the second is getting the help and you need. I hope you seek assistance as soon as possible and begin to see the light at the end of your tunnel. Please check back in with us when you can, we are cheering for you here at DLH and would love to hear of your progress.

    • Jen says:

      I can certainly relate to your comments Julie. I cared for my father who had Alzheimer’s for 12 years. It impacted my financial status in addition to my emotional status. I worshipped ny father. He died three years ago and I am still in extreme pain over the loss. It was difficult caring for him not only as his daughter but as his hospice nurse. His passing left me numb and empty and feeling so alone. I am a single divorced mother of a beautiful intelligent daughter who wants to be a doctor Herself. I am also a caregiver to my mother who has terminal cancer but has had a myriad of other health scares. My only sibling lives out of state. He is financially well off but has never helped me out. My ex doesn’t help me out financially so it’s a bit of a struggle. I feel guilty because I am grateful on one hand to be the caregiver to two wonderful parents but resentful at the same time that my brother doesn’t share the burden. He goes on family vacations time after time while I can’t afford them or feel that I can leave my mother alone. I should be focused on the blessings in my life like my dear daughter and the fact that my mother is still alive. But, instead, I feel this incredible sadness all the time. It’s so hard to find the Joy in life anymore. I would never do anything crazy because I am a religious person. But, my guilt only intensifies my sadness. Every day is a chore for me instead of the gift it should be. I don’t have anyone I feel comfortable expressing those thoughts too but God himself. It feels freeing to write it down.
      Jen

      • Char says:

        Jen, I share in your feelings of sadness and understand exactly where you are coming from. The song; ” You and Me Against the World” comes to mind, and I have been singing it all day long. I care for my 94 year old mom, with serious health issues. I feel guilty too when I start to feel sorry for myself for being the only one to care for mom. Wishing there was something to look forward to, in order to try to regain the life that seems to be passing by. The daily business of caregiving can and will weigh you down. I am in the process of dreaming up a way to take a few days off, haven’t had time off in three years…. looking into respite care, I will let you know my findings. In the meantime you aren’t alone here, finding the sun in each day is hard, try taking it hour by hour, this is new for me too.. here for you Jen, stay strong.

      • Jean F says:

        Jen, I’m just driving home (KY to CO) after caring for my father for a few weeks after his surgery. Today on the radio I heard about this study http://www.washingtonpost.com/national/health-science/daughters-provide-twice-as-much-care-for-aging-parents-than-sons-do-study-finds/2014/08/19/4b30cade-279b-11e4-86ca-6f03cbd15c1a_story.html. While it’s common for daughters to do the caregiving, your brother is being a slacker by not helping you financially. What would happen if you sent him a bill or two? Your parents were/are blessed to have you.

  3. Megan says:

    Thanks for this. I’m a mess. I’m not sure if I have PTSD – I don’t want to diagnose myself or have people think I’m just whining for attention.

    I was a part time caregiver for my mom when she was dying of cancer. I was there when they first found the tumor and saw how large it was. I was there the day she died and was at her side until she took her last breath. It’s almost 7 years later now (Feb 20) and sometimes the pain is just unbearable.

    In my family, both of my sisters have had cancer and my dad had cancer at the same time that my mom did. It was horrible. 3 months before my mom died, my grandmother (her mother passed) away. It was then mom really started to deteriorate.

    A few years after she died, I was diagnosed with bipolar I after committing myself to a psychiatric care facility. I’ve been struggling off and on ever since. This November, I had a relapse and ended up in a ward where the woman rooming with me tried to kill herself and I walked in on it.

    Then this past week, at my place of employment, an unstable individual came in and pepper sprayed the hallways. He hit one of my colleagues in the face with the spray and a bunch of us inhaled the stuff. So I’ve been dealing with that.

    Then yesterday a woman fell at the mall while I was out trying to do something fun. I didn’t see the fall but I saw the aftermath. She had a huge cut on her face, blood was everywhere on her face, she was screaming. I tried to help her granddaughters but all I could do was try to reassure them.

    So, yeah, it’s been horrible. I don’t know how much more I can take. I’m so glad I was able to get on this website and read about all this stuff and what other people are going through. It’s good to know I am not alone.

    • Jean F says:

      Megan, are you a mess? I think someone who was really messed up would have walked away from the woman in the mall and her granddaughters. You stopped and tried to help. I think you’re a compassionate person who feels things deeply. You feel the pain of others. You are carrying a lot of your own pain around inside of you and yet you stop to comfort strangers. There are so many people who have never lost a loved one, or had a family member get cancer, who turn their heads or walk away when they see someone in distress. Those people are messed up. You may be suffering from PTSD, or depression, or you may be bipolar, but you were together enough to commit yourself so you could get some help. You are smarter and stronger than you know. We all need help from time to time, whether it’s a good friend to talk to, or a professional therapist. I saw a therapist a few times while my husband was sick, and it helped. It sounds to me like you’re the kind of person who can do something once she sets her mind to it. You must decide if you’re going to come out of all the craziness you’ve been through as a victim or a survivor. Either way, we’ll be here for you while you’re getting it all figured out.

      • Megan says:

        I don’t want to be a victim. Mom would not have wanted me to live my life that way and it would be a disservice to her if I did. My brother is still in enormous amounts of pain – we think he is deeply depressed because 7 years later he’s still unemployed, clinging to my younger sister, and just not really having much purpose. I feel so badly for him but, at the same time, that’s not what my mom would have wanted.

        But he’s got to want to help himself. I can’t make him do it.

        I’m just very very tired of dealing with all of this.

        • Jean F says:

          Of course you are, Megan, you’ve had so much to deal with. I think it’s wonderful how you’ve come through everything with your empathy and compassion intact, it says so much about you. You are a survivor and you will soar again. And you’re right, your brother has to do it for himself. Try not to let your caring for him (or anyone) pull you down. Your wings must be so tired.

          • Megan says:

            My wings are exhausted. And yet I see all these people on this site who have so much more to deal with, are much stronger, and I feel like a wimp.

            • Em says:

              Megan, this will sound trite, but everyone has good days and bad days. We have all felt like we should be doing better. Making comparisons from your situation to another’s doesn’t really get you where you want to be. You don’t have to measure up to anyone’s example or expectations other than your own. And even saying that I know our own expectations can be the worst pitfall. If you feel like you could have done better today, don’t just suffer from the feeling, try asking yourself ‘Okay, if this happens again tomorrow what course would be better’ and when it happens try it, but don’t be shocked if you still need to refine your approach again. Remember we’re all making it up as we go along. With more experience we get a little better coping, but it is still like an improvised dance, no matter how well you think you’ve learned the choreography. Just don’t give up on yourself.

            • Pam A. says:

              Megan i think that one of the beauties of the world is that we are all unique so try not to compare yourself to others. To me, it sounds as though you are coping. Dealing with being Pepper sprayed, helping a woman who fell and reassuring her grandchildren makes you a strong person in my eyes. On any given day I am a dynamo or a weepy mess. At times it seems as though life’s glue has dissolved from EVERYTHING and that my world is falling apart. That is when I remember all the times when things were good and I thought it sad that good times could not last forever. And I thank God that it is true that they can’t, for it means that times that try my soul to the breaking point cannot last forever either. You, like many, are stronger than you think you are, and we are always here to lend an ear. God bless you and yours. Pam

  4. B.Gage gardner says:

    You are a hell of a person Jean; thank you!

  5. Jill says:

    I feel horrible, I know I shouldn’t but I do. I’m almost 52, my 48 yr. old boyfriend was walking on his way to work this summer and about a mile from our house was shot by two gansta types in a robbery attempt. The surgeries and infections kept him in the hospital for 2 months and he’s been home over two months but not back to work and no signs of going back. He doesn’t have disability pay because he never paid into it (was paid in cash) and I take care of all of the finances and “hide” things from him that may prove to be stressful or a trigger for him. He is diagnosed as a PTSD patient and we even were able to get a licensed service dog because of it–which in itself is a mixed blessing.

    Meanwhile, I’m dealing with menopause (second time dealing with it, the first was surgically induced after a partial hysterectomy but ovaries kept so I could hormonally age normally), ulcerative colitis, an irregular heartbeat and a LOT of stress at work, my kids live in different states with some major problems that cause me worry too and I feel like I’m the only person taking care of things and seeing so little progress. Before the shooting, our relationship was falling apart and I was going to leave, but I was there every day after work and all day every weekend and we discussed how he was grabbing this as a second chance and he wanted to get married soon and set things right in his life, etc.

    Since he’s been home, we never talk about us, he talks about making things to sell or getting his own food cart but never tells me how he thinks we can get the money together to buy the equipment. He says he doesn’t feel ready to go back to work and we don’t even have enough for bills right now. I feel guilty for wanting to kick his butt back to work. I’ve had several major surgeries myself (including having cancer three times) where I had nobody to care for me and I got back to work within two weeks–once with tubes still coming out of my body! I just feel he’s using the “trauma card” to cover up laziness–then I feel guilty for thinking that. Is this normal?

    I’m an emotional wreck from all of this and just feel like there isn’t anyone to lend support my way because I’m ALWAYS a caregiver and strong for others. How do I deal with this? I don’t want to cry all the time or just be a lump of depression or go off when I finally do get to talk to friends.

    I don’t have a car, so taking off and just going somewhere either with him or alone would be an expense we just can’t handle. Even just getting groceries tends to be difficult. My friends are dealing with their own troubles and I only have two really close friends anyway–so I don’t want to be negative and unload every time we have the rare opportunity to talk or get together. In that sense, I know I’m worried about everyone else and taking care of their needs before my own. My boyfriend sees both a therapist and a psychiatrist, but I can’t take time from work to see anyone.

    I was given all kinds of grief at work for discussing the whole situation with my work buddies, I was warned to keep my mouth shut because it wasn’t “professional”, so I get no support at work either. I’m an insomniac and this doesn’t help. I just feel like I need to run away, or scream or cry and then I beat myself up for feeling that way and not being stronger. Because I KNOW what the problem is I should be able to handle it, right? I feel like I’m helpless to do anything to make it better. I can’t make him better, I can’t make me better. I’m tired. Worn out. Beat. This has brought me down far more than any of my own surgeries or physical problems.

    • Jean F says:

      Jill, I just read your post and I am completely exhausted for you. I’m going to make myself a strong cup of coffee (or two) and come back. Hold on, we’re here for you!

    • Jean F says:

      Jill, I’ve been trying to formulate some ideas for you, but first I have some questions. You said you were there every day after work – did you live together before the shooting? Do the doctors say he is well enough to work? What was he grabbing as a second chance – your being with him because of the shooting? What kind of work did he do before he was hurt? No car, do you walk to work?

    • Char says:

      Jill,
      I don’t know of anyone that could handle ALL the things happening in your life at this time. To begin you simply MUST make time for yourself, to think, laugh and be with your two close friends. I found out the hard way, everyone has problems, and they are all relative, and in the end your friends are just that. I am hoping they will be more than happy to listen and try to help you in any way they can.
      On the other hand, your BF has tons of help, ok he had a terrible thing happen to him, but you know what, so did you.
      I admire you for being able to do all you do, and only wish I had the correct answers/ideas to help you move on. Know that I will be thinking of you as I try to understand and find the words to assist you on your journey, back to you.

      ~Char

    • Lynn says:

      Jill; is there any chance you can have him schedule a couple of sessions with his Therapist so you may attend with him to discuss how you are feeling and the stress you are under? His Therapist will not be “your” Therapist, however, the three of you might be able to discuss the situation. It seems your partner needs to understand you are at your breaking point, and that is why he has a Therapist. Yet, in the end, your self-preservation instincts will hopefully kick-in. Good luck and come back to DLH!!!

    • Lisa N. says:

      Jill,

      My heart goes out to you. You are dealing with an incredible amount of stress. May I suggest talking to a clergy member. It doesn’t matter if you are or aren’t a member of any particular denomination. Clergy are trained as many therapist are. Maybe they could connect you with a variety of helpful services. It never hurts to have a supportive ear to unload some of your troubles. Hang in there, seems as though you have been through very tough times and your still standing!

    • Molly says:

      Jill – Wow, you have a lot on your plate. I know some days, it may feel like things are just crumbling all around you. Therapy (or joint therapy with both of you there) would be a great idea. If money is an issue, you may even want to look into a support group…your local hospital or community organizations should have resources that can help you find the right direction to go. You mentioned that you keep a lot of things inside, for various reasons, but that you’ve had health concerns as well. Stress can do a lot of negative things to our bodies, and finding a way to release some of that, however you’re able to, will allow you to start dealing with other things that have been affecting you too. Please let us know how you’re doing, and you are in my thoughts as you’re working your way through all of this.

    • Pamela A. says:

      Jill please have your boyfriend ask his therapist to recommend someone in the therapy field who works with patients via telephone. His therapist eill be your best resource for this and will know your financial situation as well. make it happen though Jill, you have so many issues going on that you can’t just keep on going and just hope you can stay together. I want you to be supported professionally by a therapist as well as seeking our support here on DLH. You may be certain you have my prayers and that this group will show you a whole lot of understanding! Hang in there Jill. We are with you.

    • Char says:

      Jill,
      We have been thinking about you and wondering how you are coping with the stress from your BF, work, etc. Just know we are here for you, and when you get a moment please let us know how you are doing.
      The best of 2013 to you, and never lose heart.
      ~Char

    • Megan says:

      Oh man, Jill, please take care of yourself. The problem of being a caregiver is that sometimes we’re so busy filling the buckets of others that we neglect ourselves. Remember to take care of you amidst all of this.

      Peace.

  6. Bob says:

    This week I began wondering if I have been experienced some form of PTSD. In my 20s my wife went blind (healed 3 years later) then I watch her die in the hospital when I was 45. Watched my teenage kids grieve with drugs and teen pregnancies. I am a caregiver to my second wife who has had many stroke-like neurological health problems and for the last five years has been using a motorized wheelchair full time. I am 63 and have several health problems myself. I am very discouraged when I think of the limitations of today and the lack of hope for tomorrow. Thanks for listening.

    • Char says:

      Bob,
      You have been a caregiver for over 40 years, I can imagine you could write volumes for some of us relatively new at it. Do you presently have help in the caring of your wife? You have lived through some very difficult times, and deserve time for yourself. I am sorry you are feeling so discouraged and hopeless but that is part of PTSD. Please seek counseling, which could come in any forms, a friend to confide in, a local caregiver group, church group, etc. it will not change your situation, but it will help you feel better about it and yourself. The light is always on @ DLH, and we are listening.
      ~Char

    • Jean F says:

      Bob, you’ve certainly had more than your share of hardships, but please don’t lose your hopes for tomorrow. You lost your first wife so I know you understand just how delicate life is. Your wife and my husband both would have given anything to be able to be alive today and dealing with the process of growing old and rusty with us. Please consider for a moment that one day you may be an 83 year old man who would give anything to be 63 again. They call these our “Golden Years” and I think it’s because we’re old enough and wise enough to know that each moment is precious. You’ve had many bad times – you deserve all the good times you can get, so step over your limitations and take stock of what you have and what you are still able to do. Then start creating some 24 carat memories for Bob-at-83 to look back on and smile at.

    • Carla says:

      Dear Bob,

      You are a marvel of a man, to still be standing after what you’ve been through. Please take Jean and Char’s advice! I, too, have been that overwhelmed caregiver. Sometimes I felt I was under a dark cloud of gloom from which there was no escape and certainly nothing to look forward to in the future. Bsaically, I was not thinking of myself at all. Because of my own cancer survival, I felt that I was left here to care for my mom. WRONG. Yes, I care for her but now I care for Carla too. And I don’t feel guilty for it. Now, I plan to live to a ripe old age, have few regrets and many happy memories. Thanks to the advice and encouragement I received here (that I read and re-read for the boost I needed), I’m a generally happier person which makes me a better caregiver.

      Please keep us posted on how you’re doing. We care.

      Carla

  7. Molly says:

    After responding to Donna’s post, I took another look at this article. Today was a hard day, and this last week or so has been really difficult. It was one of those situations where I didn’t know if it was one thing or a little bit of everything that set it off. Whatever it was, the floodgates flew open, and I sat and cried, and cried, and cried. After taking a look at that list, I see a lot of symptoms that mirror what I’m dealing with. (Marital issues don’t help either, but that’s another subject.) What was scary to see was the things that can happen, regardless of age; I’ll be 37 in January, so I guess I would be classified in that “younger” category, even though some days I feel a lot older. The biggest fear is that even though I’m healthy now, this could easily cause problems later, if I don’t get it taken care of. It has only been a matter of months since everything happened, so it’s all still very fresh. I have been trying to make some changes…I moved from the house I lived in when Mom passed, because I couldn’t handle it. I have been trying to eat healthier, though I still crave McDonald’s once in a while. Music, art, and friends are my solace, and my job is a diversion. The plan is to get a transfer to Colorado Springs or Denver…I love the mountains and miss the seasons, and so do the kids. We’re hoping to be there by next summer, and it’s something good to look forward to. There’s still a lot to work through emotionally, and a lot of healing to come, and even though it’s more difficult than I ever expected, I’m still here and in one piece, and that’s something in and of itself.

    • Jean F says:

      Molly, you’ve acknowledged that you still have some problems and you are taking steps to get better. You’re young enough and smart enough to heal yourself, so don’t add the stress of worrying about how the stress will affect you later in life to your present stresses. ?!! The move from the “sad” house was a good one, and a relocation, or even a vacation, to the mountains sounds like just the thing. Don’t make any decisions about your marriage until you have fewer emotions bouncing around inside. Crying is good – let those floodgates open from time to time, it helps to let go, all that water weight can really drag a woman down. ;-)

      If you’re eating healthy 80% of the time, don’t feel guilty about a Big Mac attack – treat yourself to something bad now and then. Eat only half and you’ll feel even better about yourself. You’re going to be okay, you’re doing all the right things, just be gentle with yourself and don’t try to rush it – grief dictates its own schedule.

      • Molly says:

        Jean, thank you so much for being so reassuring – sometimes it takes hearing it from someone who has also been down this road. :-) Some days are better than others, and it will get better in time, and it’s important to remember that. I’m a natural-born worrier, and have to focus on the present, because that’s the only point in time that any of us truly has any control over. The marriage has not been good for quite a while, but everything has been so clouded by emotions in the last several months. So it probably isn’t a good time to make *that* move just yet, as badly as I’d like to. What so many of us realize through this process is that the experiences that test us the most are the ones that can also teach us the most. Sometimes it’s really difficult to let things go, but there’s a plan out there much bigger than mine, and I have to realize that things happen exactly as they need to, for whatever reason.

        BTW – McDonald’s didn’t call my name this week, but I did do Chipotle, and it was tasty, as always. It’s always too much food for me anyway, and Emma (my 6 y/o daughter) was more than happy to take care of my leftovers, so no guilt there! ;-)

  8. Donna H says:

    I’ve suspected that I’m suffering from PTSD after surviving several traumatic events over the course of the past three years. First trauma was nearly drowning in whitewater, then witnessing a woman being killed in a horrific car crash. Not long after that I survived a traffic accident which totalled my car. Then I had a cancer scare that fortunately the surgery proved to be benign. At this point I was beginning to feel like I was coming apart. But the worst was yet to come – my sweet Mother was diagnosed with terminal lung cancer (non-smoker). I took a leave of absence from my job and temporarily moved in with her to be her advocate and caregiver. In and out of hospitals, emergency room visits, sleeping on the floor and in chairs, etc. took their toll on both of us. Hospice came into the picture near the end but unfortunately we did not have a good experience with them. This was particularly hard to accept because my Mother helped in the founding of this area’s first hospice program back in the 1970s. She volunteered for years working with terminally ill children. It broke her heart and mine that when she needed them, they let her down. I know that this is not the norm for most hospices.

    I went back to work after her death and I could hardly function. It was embarrassing professionally – I’ve always been on top of my game at work and felt that I had experience and skills that I was using to make a difference in other people’s lives. But I couldn’t remember things, had become totally disorganized, began to feel isolated from colleagues, etc. It was all I could do to drag myself out of bed and into the office every day. Then just 4 months later my husband suffered a massive heart attack. Ten days and 2 surgeries later I brought him home to begin his recovery. By now I was just numb and not feeling anything.

    A few months later I suffered a small stroke at work and in the course of the tests they performed while I was recovering in the hospital it was discovered that I have a heart condition known as cardiomyopathy. The cardiologists tell me that all the stresses of the past few years, not taking proper care of myself (rest, nutrition, asking for help) and operating on pure adrenaline has damaged my heart muscle. The doctor explained that there really is a thing called “Broken Heart Syndrome”. Traumas, losses, and even heartbreak can take a big toll on our bodies.

    I’ve learned the hard way that I must put myself first now and am making big changes to my lifestyle. I’ve retired and now have time for more creative pursuits including my music and photography. I’m traveling and visiting friends who I haven’t seen in years, and recently discovered a seaside village in New England where I feel might be the place to create my new life. The plan is to make the move in the Spring! Life is good – all we have is today – and I know I am lucky to realize that before it’s too late. Thank you for this place to share our stories and encourage one another.

    • Jean F says:

      Donna, you definitely earned your wise woman stripes and your new lifestyle – you are a survivor! How is your husband doing? Is he experiencing a renewed sense of self as well?

      • Donna says:

        Thank you Jean – husband’s physical recovery has gone amazingly well. Wish I could say his attitude towards life has improved. Unfortunately our marriage of 30 years has many unresolved issues. I am ready to stop banging my head against the wall with attempts to convince him to get help. I honestly don’t know how it will all work out but I do know it will be alright – I will be alright. I’ve reclaimed my personal power.

    • Judy Gale says:

      Donna…………Wow……….!

    • Molly says:

      Donna – It’s astounding what the human spirit is capable of enduring sometimes, and the fact that you have come through with such a renewed sense of purpose is nothing short of amazing. What an inspiration you are…hugs, and wishing you the best as you begin this new part of your life.

    • Char says:

      Donna,
      You have inspired me this day, to do what you found out the hard way, taking care of oneself. I have been through some tough times lately, so TODAY will be my day off! As you said we only have this day, this one life.
      Thank you also, to your late Mom for her hard work and dedication to hospice, how terrible that she had to have a bad experience, in the end with their care.
      And finally, thank you for sharing your experience(s) with us. They provide valuable in site into the life of a caregiver.
      May you be well from now on, you are one tough woman.
      ~Char

    • Pamela A. says:

      Donna you are a very inspiring person. Moving is a pain in the butt, however, i too am contemplating moving in the next year or so. Donna i was told I had PTSD shortly after one of my best friends had come to help me recover from lapband surgery i had scheduled. She died in my home 2 days before my surgery. Because I am a nurse I only recently stopped banging my own head into the wall about not saving her. I did what I could and simultaneously dialed 9-1-1. It was a scant 42 days earlier that i had lost my dad. So i went to a therapist and that darn therapist said i was suffering from PTSD!!! ME???? NAH!!! I always manage to get along…BUT the most important things I learned:
      —YEP I Am just as vulnerable as everyone else in spite of my :cough: ego
      —MAKE ME TIME, I AM WORTH IT (and it keeps me strong to help others)
      —I AM RESPONSIBLE FOR TAKING CARE OF MY OWN HEALTH, HAPPINESS and PEACE OF MIND
      BRAVO that you are doing ME stuff! I am sorry that you and your husband have had so many health problems and I pray for you both. I would love to see your photo work, do you display online anywhere? What kind of music? I play a couple of instruments and am also picking back up on the luxury of enjoying my own abilities musically. Donna thanks for sharing your story too. We are all pieces of a mosaic i think. The more pieces the more interesting it becomes :). Pamela A.

    • Megan says:

      Donna, you are amazing! When I read stories like yours and all the people on here, I’m humbled. Really, I’ve not had it so bad. Keep fighting the good fight – you’re inspiring to many people.

  9. Beth says:

    I am 67 years old, a survivor of breast cancer and I also have a heart condition, sleep apnea, fibromyalgia, depression and other health issues. I take care of my 95 years old mother at home and she is a very difficult woman to deal with. She has been spoiled most of her life and trys to control me and place guilt feelings on me. I have two sisters and one brother. One sibling, my youngest sister does help me as much as she can but the other two do nothing and thats OK with mother.

    She idolizes my brother and he has done nothing for her. He also lives with us and she doesn’t require him to do anything to help me with any household chores, etc. Life is a party for my brother and that OK with mother. The burden is placed on me most of the time and she makes me feel that I do nothing right. She is very selfish woman and expects me to have prepared meals ready for her and my brother. I told her that my brother is not my responsibility and not to expect me to prepare meals for him. If the food is there he can help himself but she always makes the following statement, “What’s you brother going to eat?” I keep telling her that he is a big boy and can take care of himself then she starts with the guilt trips.

    She never gives me a compliment on preparing her meals, taking care of the inside and outside chores, cutting the grass, etc, doing laundry, food shopping, running her to medical appointments, etc. I also take care of my dog who has diabetes and requires injections twice daily. I would say that my plate is full and I work a part time job also. I keep telling my friends that she is out to kill me! She threatens to take an overdose of medication if things don’t go her way. I now turn the other way when she starts with this threat and I tell her that she has controlled me most of her life but she can’t control me anymore. She doesn’t like it but she will have to adjust.

    I love my mother but I don’t like how I am being treated. I am the key to her being at home and if the key breaks she will then go into a nursing home. I know that other families must be in the same boat and I welcome any and all suggestions in dealing with this situation. Help!

    • Char says:

      Beth,

      You most certainly need help, and hopefully we can provide that in the form of suggestions and ideas, to assist you in the caring of your mother. I am sorry she is so difficult and unappreciative towards you. It sounds like you have always been there for her, unlike two of your three sisters, and brother.
      Have you looked in to home care for her for a few hours a day? You said you work part time, does your sister take care of her during these times? You have to get her and you the help, you both need. Try speaking with her doctor(s) about the need. You sound completely burnt out, stressed, tired, depressed etc.
      I have a 92 year old mom, who is not demanding, but still sometimes we clash ..ok most days we have “slight” disagreements, on what she should or should not be doing… It is very difficult at times to do all we must; washing, cooking, cleaning, yard work.. and of course working.
      In the meantime, please try to get some rest, as for your brother, and your mom’s attitude… I have a brother too, he visits.. that’s about it.. It makes me too frustrated to dwell on it, so I have decided to let it go… and do what I have to do, to make my life easier, which in turn will make my mom’s and husband’s easier too. Have you spoken to your brother about his lack of help, does he have any idea what you are going through?
      I am hoping this Labor Day weekend, you can find sometime for yourself, and are able to do things that you enjoy.
      Please let us know how it is going.

      ~Char

    • Jean F says:

      Beth, as you have obviously figured out, the suicide threats are just used to manipulate you. The next time she makes that threat, calmly tell her you love her too much to witness that and walk out and go sit someplace peaceful for a few minutes. Break the threat/attention scenario. Train her, like a child, to realize that threats will be met with alone time, not attention, and not with getting her own way. When you come back in, cheerily change the subject – don’t mention her threat, and continue like the altercation never happened.

      Is there any way you can take a small vacation? You really need one, even if it’s just a 3-day getaway drive with your dog and a friend. The best thing would be for both you and your sister who helps to leave for a few days so both your mother and brother would come to appreciate all that you do. When you do everything, people take it for granted. Human nature. But be sure the grass needs cutting and there is a big pile of laundry before you leave. If you really want to make a statement, take any clean underwear in their drawers and mix it in with the dirty laundry. :-) It’s fun to dream, isn’t it? Because you probably won’t do any of these things – caregivers find it very difficult to stop the caring or the giving.

      Now here’s some tough love for you…

      So, Beth, continue on as you have been, grumbling under your breath and becoming more depressed, a drone serving the queen bee. Then one day, your poor body is going to say enough is enough and force you to take a break and someone will be calling your mother and brother from the hospital to say “Beth won’t be coming home tonight”. Now take a moment to enjoy imagining the havoc that would wreak for them, and how within a week they’d be crying and saying, “Ohhh….if only we’d appreciated Beth when she was here!”. Okay? Feel good? Good. Now decide what you’re going to do to save yourself.

      If you continue as you have been, your mother WILL OUTLIVE YOU. It happens all the time. Your spoiled mother made it to 95 by caring mostly about herself. Your brother is smart as well – he has a place to live, a maid and cook, and his mommy who adores him – he’ll live a good long time too. With your caring-for-others-before-yourself attitude and all your medical conditions, you aren’t going to make it to 95. So, let’s say you make it to 87. That gives you 20 precious years of life on planet earth left. Are you going to waste them being an unpaid servant? You’re 67 – you already know how fast the years go past.

      Start with baby steps. One day. One day a week that Beth does whatever makes Beth happy. Maybe Sunday, if that’s a day off from your job, and if that’s a day your brother doesn’t work either. Make the announcement to both your mother and brother that from now on you won’t be home on those days. Tell him, in front of her, that you know he’ll take good care of her on your days off. Make it the same day every week, so there can be no excuses.

      One day a week, that will give you around 1,040 days or so that Beth can live and relax and heal. She deserves at least that much, doesn’t she? Lunch with friends, coffee shop, walk in the park, pedicure, bookstore, movie, the possibilities are endless! Then, maybe you’ll decide to go for 2,000 Beth days; you’ll become a Beth addict, no longer the Beth-a-drone.

      Then, eventually, your mother will pass. You will grieve for her, but you will have enough of your health left to live on past her. Maybe you’ll even make it to 95. I hope so.

      • Carla says:

        Dear Beth,

        I cannot urge you strongly enough to take jean’s advice. I did and still do. My parents live with my wonderful husband, Lee, and me. My mother is very spoiled and the Queen of the Guilt Trips. My only sibling, a brother, lives across town and hasn’t ever taken on any responsibility for our parent’s care. I never went anywhere but work, home, church and grocery store but longed for time away to myself and time with Lee. Without guilt. Jean suggested a short trip to begin with, just a Saturday at the beach or such, evolving into a Saturday & Sunday getaway. I had everything they would need (groceries, meds, etc) in the house and informed my brother to be on standby if they needed something. I turned a deaf ear to all of my mother’s “What if’s”…what if one of us gets sick, etc, her usual ploy. The weekend trips went well over a period of time so we planned a 10 day vacation in Colorado….that was HUGE for me. We went at the end of July and loved every second of freedom. And my mother has learned that I’m not as easily manipulated as I once was. What a great feeling! I too am a breast cancer survivor and feel that life is too short to kow-tow to others….I have a life that deserves living and SO DO YOU! Please, please seek out resources to help you care for yourself and then your mom. In that order. You are in my prayers and please check in here and let us know how you are. We care!

        • Char says:

          Beth,
          I agree with both Jean and Carla.. getting away, even at first for short periods is essential to your well being. Believe me I fully understand how hard it is, and have just recently decided, as I wrote a dear friend, that I had to start living again. I have not been on a vacation in at least 10 years, and it has taken a big toll on me. I am still in the baby step phase, but right now, it’s about all I can handle. So Beth.. believe me if I can do it so can you.
          Please take this information to heart, you have to remove yourself from your situation for a time, in order to come back refreshed and ready to meet the new day. I am here cheering you on, if you will do the same for me.. deal?

          ~Char

        • Jean F says:

          Carla, I’m so proud of you, I wish there was a “love” button.

  10. caregiver2 says:

    It was my sister – who has never been a caregiver and lives in another state and who only hears my stories via email who told me she thought I was suffering from PTSD. I Googled Caregivers + PTSD and found myself here. I have nearly EVERY SINGLE SYMPTOM and have had them for some time – at least TWO years if not longer. I care for my 87 year old Mother in Law and I have often described how as feel as ‘constant DREAD of the future, not knowing when the guillotine will fall, going from one mini crises to the next.’

    I hit a wall 2 years ago and have tripped over smaller walls several time since then. I have nightmares, my BP and heart rate is up and I can feel my heart beat in my chest a lot, I have back aches, headaches, can’t concentrate, feel a sense of impending doom. I feel like she will outlive me. She accuses me of taking things and mishandling her money and verbally abuses me. I am tired and worn out.

    I told my husband I gave it my best shot and we are now in the process of moving her to Assisted Living. She does not, will not or can not understand WHY. Her legacy to me will be GUILT. But, I will try to live with it. God knows. He’s the only one I need to answer to.

    • Char says:

      Welcome Fellow “Caregiver2″,
      Yes, you are indeed suffering and suffering is just the half of it. I think moving your MIL is the best solution for all concerned. You didn’t mention if she is mobile, and/or able to interact with others, although it sounds like she certainly is able to interact with you, and not in a good way. She might actually learn to enjoy herself at the assisted living facility, and then your guilt will be gone!
      Now back to YOU, … lack of sleep, constant stress, will do in even the youngest, and strongest caregiver in. Caregiving is extremely difficult at times, and with the “job” comes responsibility, fear, apprehension, anger and yes guilt, for still wanting time for yourself, and for wishing things could return to a much kinder,easier and gentler time. Anger seems at times to take over logic, at least in my case it does, then everything and everyone falls apart. Making more time for you to get away from the pressure, and the negativity is key. Please let us know how the move goes, and how you are feeling. Guilt should not be on your plate now, you have given it your best shot, as you told your husband, and I am sure he is grateful for your help. Let the professionals take over her everyday care now, and you get some much needed rest, and your health back on track.

      ~Char

    • Mary R. says:

      Hi caregiver 2. I went through the same issues with my 85 year old mother last year. After 6 years of caregiving for my mom, dad and mother-in-law, I was burned out. My physical and mental health were declining and my doctor said that if I didn’t put her into an Alzheimers Unit or a nursing home, I was going to die..it was either her or me. So with the help of the DLH angels and my friends, I finally made the decision last April. It was, and still is the hardest decision I have ever had to make. I’d like to say it solved all my problems, but I am still dealing with the guilt. I lost my mom in Feb. She ended up in a nursing home towards the end because she could no longer walk. I still feel bad about moving her out of here…everytime I look at the chair she used to sit in it breaks my heart. But it had to be done…she was so difficult to deal with due to the alzheimers. It started to effect my marriage and I knew that I had to protect that. I totally understand your frustration and the need to move her to assisted living. On top of it all, this is your MIL.. I must admit that I put up with a lot more from my own mom than I would have done for my MIL. I hope you find some peace now and know that you are not alone in having to make this difficult decision. I hope your guilt goes away soon. Why are we women always so guilty no matter what we do or how hard we try? I just don’t understand it. Most men don’t seem to carry all the guilt that women do.

  11. Judy Gale says:

    Wow. I did a google search for “patient care person and PTSD,” and was brought to this page. It is spot on with what I experienced caring for my mom, who was my best friend (she passed on May 12, 2012 at 76). During our healthcare journey I never had time to read up on or even considered this phenomenon. There were several times towards the end of our time together that I would say to my mom, in the midst of taking her vitals and administering her meds, “I’m tired of being your RN, CNA, PT…, I just want to be your DAUGHTER!” And what I meant was that I just wanted to sit and talk and hang out and love up in her….without all of the stress of her health condition – the constant pain and nausea! (sigh).
    Thank you, Jean, for all of the gathering of information you did here. It’s helping me to move forward. ~Judy

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