willstrusts

CAREGIVING, ONE DAY AT A TIME

The term “caregiver” here refers to unpaid family, partners, friends, or neighbors who provide care or assistance, full or part time. This blog is for all caregivers:

  • Present caregivers who are currently caring for an ailing loved one.
  • Past caregivers who are trying to recover from their ordeal and/or loss.
  • Future caregivers, who are seeing the signs and realizing that soon they will have to do some serious decision-making.

If this is your first time caring for a loved one, it can be daunting and scary. But you can do this. All that’s needed to be a good caregiver is the desire to help and give comfort. The rest you’ll learn, one day at a time. Unfortunately, “Caregiving 101″ isn’t taught in schools, even though it’s an inevitable  part of life.

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THE EMOTIONAL AND PHYSICAL TOLLS OF CAREGIVING

Caregiving is both scary and rewarding. Scary, because you never know from day to day what will be required of you. Caring for another person is a big responsibility. You want to do everything right; your worst fear is that you’ll make a mistake and add to their pain. Rewarding, because there’s nothing like the feeling you get when you’ve been able to ease a loved one’s pain. Having them smile at you and say “I feel so much better!” is, well, there’s just nothing like it. It fills your heart with joy.

The stress of caregiving can take a terrible emotional and physical toll on the caregiver. Depression, heart disease, hypertension, and Type II Diabetes are just a few of the conditions common among primary caregivers. We want to make sure you’re aware of the hazards, the precautions, and the options open to you so you can stay as healthy as possible while you and your loved one navigate this new road together.

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When we’re young we think we’ll never get sick or old. But it happens – sometimes suddenly, and sometimes so slowly we don’t even notice until we realize that more and more of our conversations are about aches, pains, injuries, eyesight, indigestion, and illness.

All around us the people in our lives are aging noticeably, getting sick, and even dying. Our parents are getting frail or have passed on, and we all know at least one person in our life who’s been diagnosed with some kind of cancer or other serious disease.

Male or female; spouse; partner; sibling; son or daughter, if you aren’t a caregiver now, chances are you’ll be one before long. And that’s why we’re here at Don’t Lose Heart: to relay information, to support you and encourage you with our own experiences, and to share lessons we learned along the way. Or to just provide you with a place where you can vent your fears and emotions. Most of our readers don’t comment, they just read the posts and comments, and that’s fine too.

THE CYCLE OF LIFE

There was a time when families lived together; if not in the same house, then on the same property or in the same town or village. Familial caregiving was a given – if a family member got sick or injured they usually died at home, surrounded by family and friends, and their body stayed in the house until their funeral – the whole family was involved in their care and children grew up witnessing the entire cycle of life from birth to death.

In our modern culture, disease and death are usually dealt with in hospitals and are discussed in hushed tones and whispers so that, rather than being accepted as a natural part of life, they become a frightening mystery that children must be shielded from. Consequently, rather than being perceived as a natural part of every life, sickness and death become the boogeyman under the bed.

These days family members often scatter to wherever jobs, school, weather, cost of living, or whims take them. That, combined with modern medicine, longer life spans, and retirement living options, have made caring for our loved ones, and their inevitable death, something we rarely think about until someone becomes very ill or can no longer do everything for themselves.

It can be quite a shock to suddenly find that someone you always thought of as invincible is now dying or depending on you for their very survival. And if you don’t live in the same town, city, or even the same state, someone is going to have to make some big changes.

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WE’RE HERE FOR YOU

Sometimes just knowing that others are facing the same challenges, doubts, fears, frightening experiences and “selfish” thoughts and resentments can lighten the load a bit. We aren’t doctors, social workers, or health professionals – we’re some of the 52 million caregivers who are providing care every day to someone aged 20 and over who is ill, disabled, or dying. We’ve come face to face with the boogeyman – he’s not so bad once you get to know him.

Use the comment boxes at the bottom of each page to let us know what you’re going through. Or go to the Contact Us page and send us your story and we’ll post it on a separate page. Before long you’ll have an answering comment from compassionate people who want only to encourage and comfort you, and when appropriate, to offer the wisdom of their own experience. By writing your story you’ll also be letting some other person who is in a similar situation know that they aren’t alone.

We hope you’ll feel comfortable and safe here and that you’ll realize you aren’t alone in what you’re experiencing. And we hope you’ll come away feeling lighter and more sure of yourself in your role as a caregiver.

Be well, and don’t lose heart.

“There are four kinds of people in the world: those who have been caregivers; those who currently are caregivers; those who will be caregivers; and those who will need caregivers.”
~ Former First Lady, Rosalynn Carter

“Don’t Lose Heart” by Dan Fogelberg  Click arrow to play

 

Guidelines: Everyone is welcome and encouraged to write here. All we ask is that comments be relevant to caregiving or the current thread topic, to keep the exchanges focused and helpful. Because of the high volume of spam comments we receive, all comments must be approved, so they will not show up immediately, but usually within a few hours. We implemented these guidelines to keep you, dear readers, safe and comfortable. Thank you for your understanding.

 

1,146 Responses to WELCOME

  1. Gina says:

    My best friend has stage 4 lung cancer. He is 63 with a 12 yr old daughter. She attends a private school. I have to drive over 20 miles one way to her grandparents home. They take & pick her up from school. Then I drive back to their house to pick her up in the afternoons. I’m driving over 80 miles a day.

    Her mother died of cancer in 2006. Financial support has been 100% from his in-laws. My best friend also has a son who lives an hr from here with a 17 yr old son.

    I work for myself. I have been taking care of him & his daughter for 4 months. I quit asking his son for help because at the last minute, he backs out with some lame excuse. I suffer from chronic pain from old injuries.

    His daughter went out of town to her other grandparents so I thought things would chill out here until xmas. The next day his son drops off his son (my best friends grandson) and I never get a break. I want to go back to work so I can rest.

    My question here is: When is enough enough? If I leave, I will be letting my friend and his daughter down. If I stay, I will be letting myself down. (Or continue on a downward path where I won’t be able to return to my business.)

  2. Melissa Lowvet says:

    I had my mom, now 85, move in with me when glaucoma had diminished her vision to the point where she couldn’t drive anymore. We’re all that’s left of my family. My dad died of sudden cardiac death in 1995, and my sister passed from cancer of the appendix in 1999, a month before her 44th birthday.

    I was working from home yesterday, and the landscaper we share with our four cul-de-sac neighbors came to do the last lawnmowing/leaf-blowing of the season. At my computer in the kitchen, I heard my mom go outside and start screaming “Stop that noise! Stop the noise!”

    Alarmed, I went outside, where she was still screaming for them to stop. I put my arm around her shoulder and gently said “Mom, it’s the lawnmower. It’s ok,” and I turned her and steered back into the house. She was agitated and confused – but eventually she calmed down and seemed to have collected herself.

    I’m so scared that this a foreshadowing of what’s to come, and that I won’t know how to handle it, without it taking an horrific toll on me. How do caregivers cope, and maintain a grip on their own lives?

    • Jean F says:

      Melissa, first of all, it would be a good idea to take your mother in to her doctor to look at the cause of her new behavior. At her age it’s probably an onset of dementia, which would be good to know, since dementia can be caused by infection; drug interactions; metabolic disorders of the thyroid, liver, pancreas or kidneys; nutritional deficiencies, especially the lack of vitamin B-12; head injury; brain tumors; depression; or other progressive degenerative diseases of the brain.

      The most common forms of dementia in the elderly are Alzheimer’s disease and vascular dementia, a hardening of the arteries in the brain that causes blockage in blood flow, and while there is currently no cure, there are drugs that can lessen symptoms for a time. But it’s important to diagnose it early.

      With a diagnosis you will know what you’re up against and have some idea of what to expect. Unlike a diagnosis of advanced cancer or a sudden catastrophic disease, dementia is a slowly progessing condition, which means you’ll be able to learn to deal with it at a reasonable pace, and adapt your life to meet her/your needs.

      It may seem frightening right now, but you already have her there with you, and have some experience caring for her, which is really good; you won’t have to jump in the deep end with both feet – you can wade in slowly and figure it out as you go. Which is all you can do: take it one day; one symptom; one event; one lesson at a time.

      You were a good daughter to take your mom in, and beyond being a kind and caring thing to do, that decision may have saved her a lot of emotional and physical trauma that could have hastened or made her condition worse. Big pat on the back from us for stepping up and becoming her primary caregiver and advocate. I’m sure you’ve had days when you regretted it, and there are many to come, but you are doing your best, and that’s all anyone can expect of you.

      Take it slowly, don’t beat yourself up if you get cranky or frustrated, it’s completely natural. You’re going to make some mistakes, we all have, but you’ll learn from them. Let us know how it’s going, we’re here to help and encourage you if we can.

    • Char says:

      Hi Melissa,
      I recently experienced a similar situation with my Mother. First, as Jean suggested take your Mom to the doctor, it might be something as simple as a UTI.

      Also, I think you did a great job in calming her down, without losing your cool, you said and did all the right things. It’s difficult to become the parent to our parents, once you discover what is going on, it might become easier for you. Waiting, worrying and guessing is the worse thing, I was guilty of it at times!

      Please let us know how things are going when you get a chance. I wish you a stress free day.

  3. Heather says:

    My sister was just diagnosed with stage 4 non small squamous cell lung cancer. It is inoperable. They began treatment a few days ago. Without treatment, her life expectancy is 8 weeks. Not what we wanted to hear. I am her patient advocate and will deal with her business affairs if needed. Not sure where to begin. So much is wait and see. Will the mass respond and shrink. If so, what next. Will she be able to live at her own place? Will she need to stay with me? My spouse has already given me a lot of grief over the whole thing. Very threatened. His mom called to admonish me about not spending time at the hospital and staying in college. “She’s in the hospital, let them care for her.” I am still in college (local classes) until it is deemed necessary that I leave and no one will keep me from being there to hold her hand and be there for my sister. There’s been a lot of blaming her for having this disease. I have vocalized my feelings, but honestly, it falls on deaf ears. How can people be so selfish as to make someone’s cancer about themselves? How can they be so dismissive? Silence would be better. Not sure how to navigate the waters ahead. Hoping and praying for strength, wisdom, and healthy support.

    • Jean F says:

      Heather, the path you’re on is so clear, and so just. Follow your heart. There’s no telling how much longer you’ll have your sister for. If she survives for years she will always remember what you did for her. If she dies in three months, your heart will be at peace knowing you were there for her when she needed you most. The motto, “What would Jesus do?” comes to mind, as does my personal favorite, the Golden Rule.

      Take your books to the hospital with you, keep up as best you can. Some of your teachers will understand, others will not. The worst that could happen is that you’d have to take a class over down the road. No, I take that back – the worst that could happen is that you’d put school first and your sister would spend her last days alone in the hospital and you’d have to live with the guilt, and anger at your husband and mother-in-law. That would be truly sad, and irreversible.

      I can’t emphasize enough how important it is to advocate for her. Hospitals are crazy-busy places, lots of patients in and out, and even the best doctors and nurses can make mistakes or overlook symptoms. You are there to be her squeaky wheel. Squeak gently, be persistent, and then be appreciative and grateful for the help you get. Plus, even the best and friendliest staff can’t compare to family. A friendly nurse can make you feel well cared for, but a caring family member will make you feel loved.

      The why doesn’t matter now, and blame is pointless, you’re right about that. People who have never smoked anything in their lives get lung cancer – it’s a toss of the dice. I’m sure you admonished your sister many times, and right now she would give anything to go back in time and take your advice. Regret is a terrible thing to have lurking around while you’re trying to stay positive and look ahead, and it benefits no one.

      Try not to overthink what’s down the road, take care of what you can today and do your research so you have an idea of possible outcomes and options. But mostly, make this time with your sister count – create special moments that will become comforting memories in the future.

      If your mother-in-law or husband get in your face about spending time with your sister, tell them that you appreciate their advice and if, (God forbid), they end up in the hospital you will follow it.

    • Pam antosiak says:

      Hi Heather. I am truly sorry about your sister’s lung cancer. I am so GLAD that you want to stay with your sister as much as possible. It is an invaluable help to a person. As a nurse, I can tell you, family involvement like yours is a gift to the patient and those who provide their care. You will never regret the moments you spend with her now. It might be an inconvenience to miss school, but classes can be repeated in the future if necessary. Your husband and his mom likely have your best interests at heart, but they can’t guide this decision, only you can. I pray for their understanding, for you to have great moments with your sister and your success with your education. One day at a time for now…God bless you and your family. Pam

  4. Angela D. says:

    I’ve read some of these posts and a lot of it sounds so familiar. I’ve taken care of my mom for 14 years and 5 months. Last Tuesday we had to finally admit defeat and put her in a nursing home. She has dementia. This story is so long and I’m not in a frame of mind to put it all down just yet. Suffice it to say, I am so lost I have absolutely no idea what to do. I can’t say if I have PTSD, but I certainly have some of the symptoms. I haven’t drowned myself in a bottle, but only because I don’t drink. If I did, I’m sure I would be drunk 90% of the time. The only paycheck I’ve had for the past 8 or 9 yrs is from being my mom’s provider. I don’t have that now, but I don’t think I could work right now anyway.

    • Char says:

      Hi Angela,
      I am sorry you feel defeated by having to admit your mom into a nursing facility.
      For 14.5 years you provided a safe haven for her at home, that doesn’t sound like defeat to me, and I congratulate you.
      I have just recently, about 9 months ago, starting caring for my 94 yr old mom with numerous health concerns. I can understand you feel lost, as the day to day hands on caring is being done for you. The day to day caring of my mom is what is wearing me down. Our problems seem to be the opposite of each others and yet I can feel your pain.
      Do you visit your mom often? With the money problems it would be difficult to do much, but how about just taking some time off for yourself. Fourteen plus years is a long time to give your all to the caring of a loved one. Give yourself time to relax and get comfortable with the new situation, visit mom when you can, call the home and keep tabs if you aren’t able to physically be there. Take baby steps, it takes time..you need to find yourself again.
      I wish you all the best.
      Char

    • Jean F says:

      Angela, this is going to be a huge adjustment for you after fourteen and a half years of being your mother’s caregiver. You are going to have so many different emotions popping up, and the options for your future are going to seem both daunting and very far away. Give yourself a little time, and be gentle with yourself. You did a wonderful thing for your mother, you did your best for her, and now you have made an incredibly difficult decision that, while very painful, will ultimately be the best thing for both of you.

      You know those games at carnivals, the one with the gophers that pop up out of the holes, and you have to hit them with the mallet? Think of your emotions that way, but don’t hit them, just acknowledge them and gently push their little heads back down. DOUBT! GRIEF! FEAR! SORROW! As they pop up, imagine petting them gently on the head, and as you push them slowly back into their hole, remind yourself that these emotions are perfectly normal responses to what you’ve been through.

      There is no set timetable, everyone is different, but once you get through this initial surreal phase you will begin to heal. It will take time, don’t be hard on yourself if you think you should be further along than you are, and if anyone tells you that you should just “get over it”, forgive them their ignorance. One day you will feel a small stirring of an old forgotten goal or dream, then one day you’ll find yourself laughing unselfconsciously. One day you will find yourself crying for your mother and you’ll realize that your tears are a gentle releasing of sorrow, instead of the gut wrenching sobs filled with self-doubt, guilt, anger, grief, and that nagging voice telling you that you should have held out longer; that you were weak and a bad daughter to “admit defeat” and abandon her to the care of strangers. We have all heard these voices. Some of us held out longer than we should have – guilt made us carry on until someone fell, got dropped, developed infections, etc., before admitting that our loved one needed more than we were physically able to give.

      You fought the good fight for over fourteen years! We are amazed at your fortitude and selflessness. Now you enter a new phase in your caregiver journey – you will visit and make sure she is getting the care she needs. Eventually she will get you confused with the other nice people who help her. If they aren’t up to snuff you’ll find a new home for her – you see, you aren’t off the hook even now, so stop feeling like you dropped the ball. That ball is still in play and you are still in the game, the game is just in another court now.

      It’s time to get to know Angela again; your family; the friends who are still your friends. You will have good days and bad days. On the bad days, when you feel like no one in the history of the world has ever felt so wretched, we’ll be here to assure you that others have gone before you and come out the other side wiser, stronger, and more compassionate than when we went in.

    • Pam antosiak says:

      Angela, you have done a difficult job with grace. Admitting we must pass care on to someone more capable is hard and never ever a seamless transition. Can I ask that for the moment you take some time to see how you’re doing? You say you aren’t sure if you have PTSD, and I wasn’t sure either, in fact I was pretty sure it was impossible, but I did. You have cared for your mom and made sure her care is safe and appropriate now. Please take some of the time you have to assess your health before you think about going back to work. God bless you and your family. My prayers go with you.

  5. Jennifer S Rossi Rossi says:

    I lost my husband of 25 yrs. on 9/17/2012. He was 100% disabled from the Army, but I just couldn’t bring myself to make him seek help from VA Medical, so I bought him private ins. at rate of $1,500/month. He had no life insurance since he was uninsurable due to the jeep rolling on him in the Army. Needless to say, the bills were staggering. After he died I lost my house to foreclosure & car to repossession. It’s a disgrace how veterans are treated, or mistreated, by the VA. It’s too late for my husband; however perhaps the VA will shape up after the expose into their malfeasance.

    • Jean F says:

      Jennifer, you had so much to deal with! It’s bad enough when you’re caring for a loved one who’s disabled, but on top of that to have to deal with governmental bureaucracy, that’s an incredible amount of stress. And anger, which you really don’t need when you are already exhausted. You did it, though, you cared for him and found him insurance and saw him through to the end. You did your best, and now you are picking up the pieces. It’s just terrible that you lost your home and your car, and I know your pain is still so fresh, but it sounds like you are the kind of person who will come out of this even stronger. Just know that you can come here any time you’re having a bad (worse) day, we’ll listen and help if we can.

    • Char says:

      Dear Jennifer, I am sorry for your loss, and for the countless other losses you have had since your husband passed. My husband is also a veteran and we have had some degree of help from the VA. As Jean said, you did your best for him, which I know was difficult. Financial stress along with the stress of daily caregiving can really takes its toll. I hope now you are able to care for yourself and get back on your feet. I pray the system will change for our vets, so they can finally receive the proper care.

  6. Terese says:

    Thank you, Jean. I do crumble, in private. I know the hell that’s coming, so I cherish every moment with Tim. It’s my goal to see that he does not suffer. He’s been through enough. It’s a delicate dance we caregivers perform day after day. Hiding the heartache, tending to needs, and assuring comfort. Right now, we have good days. So we celebrate and cherish……as long as possible.

  7. Terese says:

    Good morning. Just stopping by to say hello. Things are calm here on the homefront. Tim had his radiation consultation and decided against it. No more surgery either. This pleases me as I am all for palliative care when there is no cure. The cancer is in both lungs now, but Tim feels fine, eating healthy, compliant with insulin, and is strong as a bull. We have some serious coasting time now, and can all take a deep breath. Whew. Happy summer, pretty ladies. Hold on tight to your loved ones.

    • Jean F says:

      Terese, my heart aches for you, but you are handling everything so beautifully. I know there are times when you crumble, but I also know that you are Tim’s pillar of strength. I admire you so much.

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