What Is Caregiver Burnout, And What Can I Do About It?
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Are You A Caregiver?
Are you, like I, the one person with the major responsibility as caregiver for your loved one - and all the stresses that entails? Caregiving for an elderly parent, or for a chronically ill or disabled family member? An autistic or Downs Syndrome child, or one who had a terrible accident? A wounded veteran with a hard, long-term rehabilitation? A spouse or parent who's had traumatic illness such as stroke or heart attack, or degenerative disease such as Alzheimer's or other dementia?
Then believe me, this Caregiver Burnout Hub is for YOU!
This can happen to any caregiver. You care, and you give… and you give… of your heart and your strength and….
If you are living it, I don't have to tell you the stresses you are under. The reports I've seen only add emphasis to what you already know about the impact on the family caregiver or "lay caregiver" - such as these: *
- Majority said they felt stressed, fatigued, frustrated from their caregiving situation
- 2 in 3 caregivers had health problems (many due to stress or self neglect)
- 2 in 3 caregivers experienced strains on their marriages and families
- 1/2 were financially strained by the caregiving cost and/or lost income
- More than 1/4 of the caregivers felt despair (also helpless, hopeless, grief)
* Most poll data from a great resource: "Caregiver Burden and Burnout - A guide for primary care physicians," Richard T. Kasuya, MD; Patricia Polgar-Bailey, FNP, MSN, MPH; Robbyn Takeuchi, MSW, Postgraduate Medicine, Vol. 108 No. 7 (December 2000).
So What Is Caregiver Burnout?
First off, we need a simple definition for this complex matter. Essentially, caregiver burnout is the intensive progression of your many caregiver stresses - physical, emotional, financial, psychological, and social - to the point that you feel totally "burned out."
Face it. You are physically, emotionally, and mentally exhausted!
The tiring, endless demands and stresses are going to be there for any caregiver. Whether they reach the point of actual caregiver burnout depends in part on how you are able to handle them emotionally and hold up physically, and if you can get the support you need both for your loved one and for yourself.
For example, if you juggle career with sleepless nights as a caregiver, you are going to be exhausted. If you are a member of the "Sandwich Generation" caring for children and parents at the same time along with your own financial stresses, you are going to be more than exhausted. No question about it. Even with good caregiving help for your loved one while you're working.
But you might not even be able to get the help you need for caring for your loved one, or for taking care of the house and the finances. Or simply to give you a break!
Come to think of it, when was the last time you had a real break? Slept a long, sound night? Felt that things were under control? Felt that there was still hope, and that you would some day have a LIFE?
Has your caregiver stress blossomed to the point of caregiver burnout?
Perhaps you have felt your own attitude change from positive and caring to negative, snappy, or simply wanting to turn away and bury yourself somewhere. You wanted to scream! Well, know that you are definitely not alone. It is a common caregiver hazard. And it's a warning sign to take care of YOU. Otherwise, you are no good to anyone else, much less to yourself. And without some changes, it will get worse.
You may even have wanted to hurt your loved one or yourself. If it's reached that point for more than a frustrated moment of just wanting to shake him back into reality, or shake her to stop yelling for you incessantly in the middle of the night for something that's totally unnecessary - don't wait! Get professional help. They understand these things, and no one will blame you. Actually, they will applaud you for taking the right action. You must get help for the sake of your loved one and yourself!
Do you, like most family caregivers (and like I did), feel guilty for even wanting to spend a little time on yourself? For wanting to go out for some fresh air for even half an hour? Go to dinner or a movie or a favorite sporting event with your friends? Or to have a quiet reading time, go to church, get your hair cut . . . even to take care of your own exercise and health needs?
It's time to think about YOU. If you don't take care of the caregiver, then who's to take care of your loved one?
How Can I Know If I'm Getting - Or Have - Caregiver Burnout?
Hey, if you've ever heard any of the symptoms of stress and depression, then you already know some of the symptoms of caregiver stress, caregiver depression, and caregiver burnout.
Listen up. Pay close attention and examine yourself honestly. Especially your reactions in the primary care setting. Because if you are getting caregiver burnout - or already have it - it's not healthy for either you or your loved one, and the situation absolutely must be addressed!
So here's a quick listing of some of the myriad manifestations of caregiver burnout. Do you have a significant number of these?
- Feeling increased stress and anxiety over even minor things
- Despairingly blaming yourself for your inability to meet unrealistic demands
- Feeling everything is out of control, and you don't see a way out
- Loss of energy and constant feeling of exhaustion, emotionally and physically
- Feeling helpless, hopeless, or on the verge of tears often
- Overreacting to minor things and snapping much too quickly
- Frequent indigestion, loss of appetite, more headaches and body aches
- Significant weight gain or loss, or change in eating patterns
- Loss of interest in your appearance and grooming
- Change in sleep patterns or sleeplessness
- Decreased productivity or lack of interest in work
- Scattered thinking, inability to concentrate, or trapped in circular thinking
- Feeling increasingly resentful, angry, bitter, or blaming yourself or others
- Loss of interest in favorite activities and hobbies
- Withdrawal from anything social, avoidance of friends and family
- Feeling it takes too much energy to interact with others and do things
- Inability to relax, feeling there is always something you must be doing
- Engaging in nervous habits such as binging, chain smoking, drinking
- Feeling you want to hurt yourself or your charge
- Having increasing thoughts of death
- Increasing use of medications for anxiety, depression, sleep, stomach
- Feeling physically run down and getting sick much more often
I Know. . .
Having lived with some of these caregiver burnout symptoms, and having spoken with many other women or read their stories - not to mention reports in professional journals - I want you to know that...
You are NOT alone!
Even though you probably feel isolated and alone with your thoughts, feelings, burdens. . .So if your caregiver stress burden is building, find other caregivers, confidants, or counselors (online or offline) who can relate to your caregiver experiences and help you through this.
Something has to give!
And it needn't be your health and sanity. Certainly, your role and expectations need to change, though, for you to get better. YOU need to become the focus of some of the care in order for your to be a suitable caregiver for your loved one.
I have found some faith-based, trained counselors to be the best - because they not only understand and help tackle the symptoms of your caregiver burnout, but importantly, they get right to the core and help heal the root cause of your real problems. The real key in all of this is not with what you are confronted, but how you handle it. What you internalize. What burns within you.
No, they cannot change your loved one's situation. (Wish they could!) At least not your loved one's physical condition. But they can help change and bolster the most important part - YOU, the Caregiver - and HOW you deal with the deck of cards you have been dealt.
- Help For Caregivers to Reverse Degeneration And Relieve Pain
Safe, self-use equipment from Transformational Health Systems can help over-stressed, getting-sick caregivers start to Re-generate instead of De-generate. One piece rated #1 for osteo-arthritis & carpal tunnel. Another reversed MS, etc. Short vid - Relieve Migraine Pain Caused By Caregiver Stress
Video of migraine erased in minutes, with safe, painless soft laser description and fascinating backgrounds of the doctors behind this. Drugs do not work! But you don't have to suffer. I use this at home for pain relief and inflammation of all kinds. - Caregiving Depression - Symptoms and Hope
How Family Caregivers can Prevent and Cope with Depression and a support forum - The Caregiver - Caregiver Support To Relieve Caregiver Stress
Part of a Caregiver Support help series for family caregivers for aging parents, spouse or child. With personal story, Thanksgiving Reflections by a Family Caregiver, home health care resources, more. - Visiting Angels Home Care
Non-medical Living Assistance for Experienced Caregiving in your home. From elder care companions and sitters to much more. A great resource for the back-up support every caregiver needs! - Home Helpers In Home Care for Aging and Elder Seniors seeking Home Hospice Care, Companionship, and
From a few hours to days and weeks, new baby or accident recovery or terminal illness - get Hospice home health care services, eldercare for senior citizens, help for new Moms, and Families recovering from illness with in-home services. - Senior Housing - Assisted Living Facilities, Nursing Homes and Independent Living
SeniorHousingNet to find independent and assisted living facilities, nursing homes, retirement communities, and other elderly care housing and apartment options. Learn about the different types of senior housing and care. - Home Instead Senior Care
The world's largest provider of comprehensive, non-medical companionship and home care services for aging adults - with network of franchise offices throughout the United States, Canada, Japan, Ireland, Portugal, and Australia. - Leeza's Place
Developed in response to the challenges Leeza Gibbons and her family encountered while seeking needed support, Leeza's Place is a multifaceted reprieve for both caregivers and those recently diagnosed with Alzheimer's Disease. - Well Spouse Association
National nonprofit membership organization giving support to wives, husbands, and partners of the chronically ill and/or disabled. Monthly Support Group Meetings to share thoughts and feelings openly in a non-judgmental atmosphere. - BenefitsCheckUp - National Council on Aging
Help finding programs for people ages 55 and over that may pay for some of their costs of prescription drugs, health care, utilities, and other essential items or services. - Home Care Solutions For The Caregiver
You're reeling as your spouse, child, or parent is incapacitated by serious illness, accident, tragedy...is out of the hospital, rehab, and now requires in home healthcare. Were you ever prepared for this kind of caregiving? Here's "How To" help. - Stress Relief Tips -1 Week to Less Stress
Stress relief can be painless, easy, natural, and not take any real time. These tips will help bring balance, a positive outlook, and rejuvenation into your life. Little things with big impact! - SOCIAL BOOKMARKS
Save this Hub to your favorite social bookmark site for ready reference when you need it most.
So Where Do I Turn For Help With Caregiver Burnout?
Volumes can be written on this specific issue alone, far more than can be presented in just this article. But don't give up. I'm not in the business of giving "Mission Impossible."
If you are developing - or have - caregiver burnout, you need help NOW! And I want to make sure you have it.
Even if burnout is not an issue at present, if you are a caregiver, you still need help with caregiver stress in order to avoid a greater problem.
So I have provided some support links to the right - and will be adding links and videos on a somewhat consistent basis, so check back often. But in the meantime and always, keep these things in mind . . .
Let's call them . . .
CAREGIVER'S BASIC SURVIVAL TIPS
1. Keep your loved one involved as much as possible in decision-making, dressing, and other things, as long as he is able. Even if he balks. That will help him remain as independent as possible, helping his morale and so much more.
2. Do not assume more responsibility or control than necessary. You cannot do all things, be all things, and solve all problems for your loved one - and if you set such unrealistic expectations for yourself, you are just setting yourself up for failure and big time anxiety!
3. Eat properly, whether you feel like it or not. Your body needs it as fuel if you are going to tackle the physical, emotional, and psychological challenges of caregiving. Do not use up all your financial resources, either, or neglect paid activity to pay your basic bills. You need to live, too.
4. Take care of yourself in every important aspect. In addition to eating and sleeping, get exercise. You need it for physical stamina, health, and as an energy booster as well as a stress reliever. Treat yourself to something special, too. Get a haircut, buy something pretty, get your teeth cleaned, and don't overlook your physical health.
5. Make time for YOU with friends or family who nurture you or make you laugh. Laughter is good medicine. (Don't forget how to laugh, as I did.) And all your friends don't have to be local. You can find some great ones online - people who encourage you with their own stories, and people who understand and value your story. Don't underestimate how much it helps to talk to someone who's "been there!"
6. Find someone you trust to talk to about your deepest thoughts and feelings, even the ugly, angry, or depressed ones you try to hide from everyone else. Or especially those. Get them out on the table. It's so freeing not to have them closed up and festering inside! Just getting them out will be like a breath of fresh air, and a lifting of much of the heavy burden those things cause. Just don't deny your feelings - all the negative emotions that caregiving can cause - or your anxiety will build.
7. Learn all you can about your loved one's condition, accept those things you cannot change, and have realistic expectations. It's especially hard with degenerative diseases, watching your loved one's body deterioriate as my friends with Huntington's Disease and Lou Gehrig's - or the cognitive functions of the elderly friends and family with Alzheimer's and Dementia.
8. Remember daily to reward yourself for the positive difference you make in your loved one's life and the specific little things you did that day - and don't stress yourself over the things you simply did not get done, can not do, or can not change. Is the cup half full or half empty? Focus on the good things - the positives you did and experienced, and put those in the "rewards" cup. It's your attitude that determines your altitude!
9. Find quality back-up caregiver support to free you up for that dinner with a friend . . . or rare trip to the mall or hairdresser or doctor for YOU . . . or so you can work and keep your own finances intact . . . and so you can spend important, nurturing time with your spouse, children, or someone else who builds YOU up . . . or for a needed weekend getaway. Just as the military recognizes the need for "R&R" . . .
Don't overlook other help, either, such as Comfort Keepers, respite care services, home health care services. And if your loved one is older but "mobile," try the stimulus of Adult Day Care.
10. It's not working, you say? If after these things you are still jumping out of your skin, crying at the drop of a pin, or feeling so wiped out it takes monumental effort just to move or respond . . . or any number of the caregiver burnout symptoms above. . . Don't wait! Seek professional help from a therapist, faith-based counselor, doctor, clergy, or other experienced advisor.
The professional can help you sort through your emotions and situations. Help you get a grip, find the support you need, and make the necessary changes, so that you can think clearly, gain strength and confidence, and survive the caregiver challenges ahead...
So that you can not only be an overcomer, but be open to the many special moments of closeness, sharing, bonding with your love one....
Those Special Moments...
Ah, a true gift from God that you would never have under any other circumstances. How can you explain it to someone who's never been there? A precious ray of light in the midst of the long, dark night.
Carpe diem…
It takes on new meaning - "Seize the day," seize the moment - that you do not miss the hidden blessings, the rare glimpses into your loved one's fond secrets, most special memories, deepest heart. Drink it in as nourishment to your soul. As steel for your backbone, to get you through the trying times ahead. Through the seemingly incessant, pained demands of your loved one. And to give you a comforting smile when your loved one's body is laid to rest.
What a shame it would be if you had caregiver burnout and were too wiped out to be able to see, feel, enjoy these moments! Don't miss it. So take care of yourself!
National Family Caregiver Support Program for the Elderly
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Trust me. I know the feeling. My mother, my sister, and I lived with my grandmother full-time and took care of her until I was 15. We all felt for her because we knew she was in pain, and before the dementia took hold, she was a brilliant woman. But she reached a point of never thanking us, no matter how much we did for her... never asking any of us... nor ever considering any of us. It became an absolute always "I want it NOW!"
Grandmother called my uncle and complained because we weren't doing what she wanted. And one night, she called the Police. The policement really got a kick out of it. Needless to say, that did it. Last straw. We left.
Ive always thought that if men lived on average longer than women then there would be whole lot more cash and resources available for the MEN doing the cargiving - as usual women's work is under valued by society.
You are so right, Lissie! I came from the corporate world, back when I was the first or only woman in anything I did (and it was not yet popular to hire women), and competitive pay was quite an issue then. Women had to work twice as hard, twice as long, AND twice as smart to get the same -or close- recognition.
As I became a part of the "sandwich generation" with caregiving responsibilities at both ends, it became evident that this most necessary and precious service is VASTLY under-appreciated and under-compensated. Most of us do it for free, and at great sacrifice of our incomes and LIFE, on top of the emotional stresses of strained relationships, loss, grief! So it's no wonder there's so much caregiver burnout - with risk of caregiver suicide.
Numbers of men as caregivers? Actually, somewhere around 25% of family caregivers are men, some of whom are very devoted husbands or sons - and they need our help, too!
It seems like everyone I talk to is caring for someone these days! If it's not a parent, it's a grandparent, or a child or spouse. I can't even count how many people I've heard about in the last year or so diagnosed with breast cancer. Where is this all going to end. We kept my father home for 3 years before he died but it almost broke the bank. What do you think it would have been like if we had chosen a nursing home? Now I help my mom and am truly part of the 'sandwich generation'. Single mom, kids, work, primary caregiver....there are times when I just wish it would all end and my life would fnally come back to normal, whatever normal is...Sometimes I feel like by the time this is over, it will be too late for me to regain my financial freedom, get ready for MY retirement, and see what the 'empty nest' feeling is really about. I know I won't like it, but right now it sure sounds good.
Oh, Theresa, my heart goes out to you! Yes, it does seem like there's another family caregiver every time you turn around. I just went to a family friend's funeral - a wonderful 46-year-old devoted to child development, teaching, orphanage ministries, and more, who over the last year journaled his messages that God is still in control and ever-present with help, mercy, and love. Even as he was losing his year-and-a-half battle with Lymphoma. His dear wife had care for him full time and for his thirteen-year-old son while working. His grandparents and my parents were best friends (more caregiving stories about all of them!), his mother babysat for me and is caring for his father, and my younger brother was his high school and college buddy. Now my brother is struggling with a later stage colon cancer... and my mother with Parkinson's and Dementia was just diagnosed with Paget's Disease (rare breast cancer). Yes, we in the "sandwich generation" are seeing it from every angle... and it is very, very costly to our health, our finances, our relationships (what are they?), our lives.
I'm a single mom, I work, I'm primary caregiver... and I identify! But I am seeing already that I will be regaining my financial freedom and... well, retirement?... I'm not sure what that is! But there IS light at the end of the tunnel. Sorrow lasts for a night, but joy commeth in the morning... New beginnings... Hang in there. Keep your eyes focused forward - or far better, focused UPWARD - and use other "sandwiched" caregivers as an outlet. A new day will be dawning...
Great article, the caregivers in this world are so wonderful. I really do not know how they cope. I know a few of them and your article is their life. They need a medal to do it, but more important they need help and relief from the hours spent caring for loved ones.
Thanks, Eileen. While I've lived a difficult situation these past few years, I have witnessed such heroism and devotion among caregivers with far more medically demanding situations - such as a friend caring for her beloved, wheelchair-bound husband with a degenerative disease. Recently, she went to a concert with friends for the first time in 7 years! Talk about devotion! I just thank God for the "special moments" with your loved one, special memories that no one can take away. And for His healing touch in our hearts and spirits. I could not have survived...
On a different matter, Eileen, I LOVE your dog hubs. Thanks for blessing this community. We need to get you and Rena Murray together. Any readers who haven't visited Eileen's Hubs, do so now. You'll be glad you did!
You will make my head swell. Has Rena got a hub. Oh its ok I will type her name in an try. Thanks again
This hub brings tears to my eyes.I am a mother of two little ones and know how it feels when you are taken for granted and the burnouts are sometimes so heart piercing that one does want to get away from the everyday routine at least for a day or two.Now as a mother and wife I know how my mother would have felt when I never thought of her as a care giver but only as a mother.You made me realize what I missed.Thanks.
This is fabulous! Very informative. Thank you!
Very nice article... I work in healthcare, in a highly emotional charged envirement, I appreciate everything you say here.
Yes i am 23 years old male but i respect females very much as per my family traditions. I was brought up in female dominated family so my mom always has the last saying in decision making. Females are free to do whatever they want and each human is responsible for his or her own life. It's sad people still differentiate between sexes. But as a human i always believed females are much more stronger emotionally than males so i respect them very much!
Really nicely written hubs I have no words to describe as most of the other members have said everything here.
I have a cousin that relocated her mom from a nursing home in PA to a nursing home in GA, sparing the details of transporting a bed-ridden parent with a feeding tube with limited resources - by the Grace of Jehovah, she made it.
She immediately sought handicap housing to personally care for her mother. She was granted hospice in order to have nursing help, daily and have a week's vacation out of the year. My cousin is the ONLY living child, who is fortunate to have retired from work. Her brother, who lived with her mother passed a few years ago which was the beginning of my aunt's personal deterioration; she sustained a head injury that required surgery. After the surgery, she became wheelchair bound and further deteriorated by not eating. This prompted a feeding tube and nursing home care. My aunt would rip the tube from her abdomen. My cousin decided to move her mother closer to her surviving siblings [4 sisters has survived 14 siblings] and relatives in order to not be alone and to have extended family support in her personal struggle to care for her mother.
I feel pain for my cousin for she had to disrupt her life-long residency; move away from her own six children [all adults] and grandchildren to be closer to my mother [74-limited motion] who is the baby sibling; my aunts [**Georgia-99 and the 1st born, Lula-94, Marie-91, Mary-79] --**I remember my Aunt Georgia's 85 B'day celebration in 1986 - she tells folks she's 98 or 99. Her next B'day is in May and according to her 1986 celebration, she will be 102 - we do not correct her ;)
JazzLive, I also feel pain for your cousin. People don't realize how many family caregivers actually sacrifice their own lives for their loved ones. There are 7 million households in the USA alone with caregivers, and the job is one that doesn't pay, doesn't end to go home, doesn't allow you to have a social life, etc. And many have to sell their homes and move, leaving behind their close relationship and support networks, just to be where it's best for the the loved one for whom they are caring. Like your cousin. (It's no wonder there's so much caregiver burnout!)
The life of a caregiver is physically demanding, too, and loaded with caregiver stress ...without all the usual outlets. For your cousin to lose her brother is another hard thing emotionally and support-wise, so I hope the "extended family" in GA will step up to the plate and help her! But she must ASK... Make sure she does.
I hope you continue to Hub. There is such a great need for support in this area. You are contributing in a powerful way.
tDMg
LdsNana-AskMormon
Thanks, LdsNana. I have many articles I have been writing for people's blogs and such, as well as contributions to ebooks. So now it IS my clear intention to take my experience and knowledge and start putting it into HUB format. Since navigating around Hubpages and getting to "know" people these past 2 months, I think I am now ready to do more for the caregiver and home health care, as well as other health issues and women's issues. I hope they will be well received. I appreciate your encouragement.
Eileen, I neglected to get back to you about Rena Murray. I don't think she has a hub yet, although she's been talking about maybe bringing all her vast material here. It's all original, from her own EXTENSIVE knowledge and experience. You'd love her! She has a lot of Squidoo lenses such as http://www.squidoo.com/dog-whisper/ ("Gatsby" identity - her dog) and others in her newer identity of "Dog Whisper Woman." If you want to reach her, the best way is through her website - http://www.PawPersuasion.com . Hope that helps. I love to put like minds and new friends together!
This is an excellent and very helpful article. Thank you for sharing
I must thank you here for all your valuable comments placed on my hubs.But you have not written after your first hub.I would like you to share more of your experiences.I learnt a lot from your previous one.My mother loved it.
Thank you for sharing your story and the wisdom you gained along the way. It's SO important to take care of oneself first - as we are of little help to those who need us when we have no inner resources to draw upon.
Great advice on a sensitive subject. Keep up the good work!
This is a real issue in our society...The extended family is mostly gone in America and so the burden of caring for our parents many times lands on one person...this really creates the burn-out! Your advice is truly wonderful and reminds us that we often not superhuman and really have to take care of ourselves to be able to care for others.
For many people it is a long term life change and so the strategies in this article are even more important to implement because you can't just grit and bare it because over time you will burn out...
Thanks, Melissa. You know this firsthand from caring for your grandmother. And what wisdom you bring with homeopathic medicine to ease pain and suffering without drugs, and to increase energy and wellness for the caregiver. I am very impressed with your story and with your programs. Wish I had known you when I was in the midst of my intensive family caregiver years.
Yes, in America we do see this over and over again. The predominant burden fell on one... and I essentially gave up my life and livelihood during those years. Yet I would do it all over again. Such love, those precious moments in the midst of it all... such peace knowing I did my best. Now to help others through this!
I love the additions you have put in since I was last here. I relate so much to this that I had to come back. There are peole all over the place who can relate to this so you have made a very timely page. Two thumbs up!
I am not a caregiver, but I believe that this excellent hub must be a wonderful resource for anyone who is. Great work.
What a wonderful hub article. Whether you have been a caregiver or not, you really grab the attention to the emotions and mental anguish that occurs when caring for a loved one at home. I know because I have been there. Cared for my Dad until his death and now living and caring for my mom while still maintaining the job of single mom! There are days when you wouldn't trade this for anything in the world and days when you wish you had never stepped up to the bar.
I find that it was so rewarding to write my book and video on caring for a loved one at home and communicating with all the people I am meeting along the way. Keep writing in this hub as we need to approach as many caregivers as possible - we all need your help and your sensitivity.
Terri
HomeHealthCareBooks.com
Hello, Caregiver
What a wonderful article you have provided! It's so easy to get caught up in taking care of everyone else, that you don't even realize you are exhibiting symptoms of stress.
I have found that when I see signs and symptoms like the ones you describe, it suddenly sinks in that I am stressed!
Thanks for the reminder for the need for good self-care as we care for everyone else. Very insightful and encouraging information. Keep up the great work!
Connie
Good information. My wife was the caregiver for her mother who suffered from Alzheimers. Very difficult
You have really created a great source here. I haven't been a caregiver but my parents are getting older and so are my hubby and myself. It's not something I could handle alone.
Excellent hub! I'm still recovering after taking care of my grandmother for 5 years. Also, my partner's mom died last year and had Alzheimer's for several years before that. Since her mom's death, her dad has needed lots of support. You've hit a chord, and you've put together a terrific resource.
Margaret your work is a Godsend!
This is something that one never thinks about it you haven't experinced it. It sure is a stressful situation to be under. Knock on wood. My parents are still in good health. You have done a wonderful job bringing this sometimes thankless job to the forefront. Thumbs up for this hub!
This is a tough subject for me right now, I have been watching my Mom take care of my Dads parents and for the last three years taking care of her 96 year old father. He had a stroke and has been in therapy, and nursing homes, because she could not any-longer care for him. He will beg her to take him home. But now he has dementia and is deteriorating daily. Those of us who are ready to let him go are praying that the God will have mercy and take him home soon.
I almost had to do this for my Dad who is 83, two weeks ago. He is recovering very well from a Strep infection in his blood. His kidneys had shut down and his lungs were filling up when they finally figured out what was wrong with him. A few hours more and he would not have recovered so well.
My daughter and two grandchildren have been living with my husband and I now going on 10 years. Due to a bad marriage and bad luck. She has not been able to recover and needs our help.
My parents live less than a hundred yards away. So unless they end up in a nursing home or my sister takes them in her home. I have a big job ahead of me. My family is close and we do live our lives 'the way they did years ago.' It does not change any of the dynamics you are talking about with 'burn out'. I agree with the tips you give for taking care of yourself as a care giver. And Laugh, Laugh, Laugh! Rent old comedies. Stand in front of a mirror through back your head and laugh. By the time you have done that a couple times you will be laughing at yourself. And Laughter is a great healing, stress relieving medicine!
Thank you, PDennis, for sharing your own painful story. That was scary with your Dad, but I'm glad he is recovering well now. Too often it takes a while for a correct diagnosis, something which damaged my father greatly at one point, too. The ins and outs of frigid emergency rooms, hospital stays, not knowing, strain you before you even get your loved one home and are thrust into that phase of the home health care... It's hard!
Then your Mom's dad with dementia and failing... Yes, I fully understand your prayer. That's the situation my mother is in now, too. I join in a prayer of agreement with you that in His great mercy, God will take your grandfather home where he will be restored and in fullness of joy.
You are clearly in the "Sandwich Generation," and have seen and been through a lot of emotionally and physically demanding caregiving. Thank goodness your parents are close by, so you don't have to add travel to the mix. The dispersed American family really misses the blessings of closeness and extended family that are needed through these very real, hard times.
While there may be more ahead with your parents, I applaud you. Not only do you have your faith to sustain you, but great strength of character and love, and a positive personality. I look forward to your new hubpage on learning to laugh - It's so needed. Thanks for sharing your prescription to LAUGH, LAUGH, LAUGH! Laughter makes merry like a medicine!
A great article about an issue more and more people will have to deal with as the population ages.
OMG you have it the nail on the head. I am taking care of my 88 year old Mother and have had to place her in a lock down facility. she was wondering the streets freezing cold on Christmas day and the local Police found her. We have put a braclet on her that they can TRACK HER ANYWHERE, In any city any time. but you know the real struggle is the paper work, the insurance company's, the medical bull, the annuities, the income tax. even moving her. The phone company screwed up the carpet company delayed us 3 days, I mean it never ends. social security, rexall insurance,her needs and then she forgets everything. Even me her oldest daughter that has been caring for so long. I understand that though and is not a problem...but occasionally I get frustrated and do take SAM-e to help calm me down. This is a very good Hub and I know how it feels. I love the hubs beacause of these very hubs you wrote. Thank You so much. God Bless you. G-Ma :o) hugs
Thank you the valauble insight. I can identify with so much of what you say.... thank you for saying it!
I'm a fan of yours. This page has content and character. My wife and I lived through the demise of three of our four parents (my Dad died suddenly from a heart attack at age 64). It was people like yourself who got us through the dynamic. You rise to the occasion, but without professional caregivers, it's hard to stand.
Margaret, I am a fan! What a great service you are providing to so many of us. Although I'm not currently in the caretaker role (thank God my 78 year old Dad is robust and vibrant and in very good health!) but it was only a few years ago when I was there with my ailing mom. I can say that the time my sister and I spent caring for our mother during her last months was difficult but so rewarding. We were blessed to have each other during that time, and it eased the pain considerably.
Blessings to you for providing caretakers with tools and encouragement! Keep up the good work... those of us in the "sandwich generation" need all the loving support we can get!
it is really very touching .Old people need more care as they feel low in spirits.
G-Ma Johnson - OMG, my heart goes out to you. I understand, as only someone who's been there can. My siblings in other towns or state never understood this. After all, it was just "taken care of" for the most part. It was heart-breaking having Mama begging to go home when we first had to put her in a "lock down" for safety (albeit a beautiful, costly one). I'm still struggling with her home, taxes, bills, insurance, doctor visits, medical decisions, and issues on top of issues, while trying to reinvent my life and find a way to support myself at age 60.
But my heart is in helping other caregivers. That's why I just formed a group on Facebook that I should add above and hope you and others will join so we can all help each other. It's called "Caregiver - Survive and Thrive" - and hopefully this link will show - http://www.facebook.com/group.php?gid=21355254840
Hi Margaret,
Great Hub! You can see mine, Does Water For Gas Work in a Turbo Diesel at
http://hubpages.com/_2dbrjt2g33q0f/hub/How-To-Use-
Don't have a Caregiver situation at the moment but it is coming. My Dad is 81 with Cogestive Heart disease and at the moment my Mom takes care of him. As long as my Mom stays healthy, there isn't a problem but should she also need help, then I'll have to help with my other 3 brothers. We have been talking about it for some time and making plans for this day. Tim Arnot
Hi Margaret, just wrote on your FB wall, and wanted to share this additional thought. Years ago when I was in a caregiver role, I often felt isolated. Although I knew that there were "people out there who cared" (including family and friends), I wished they would call or do other little things to show me support on a more regular basis. This was around 1990-91, so no Internet yet. Now that there is, new tools such as CaringBridge (http://www.caringbridge.org/about) have emerged to make it easier for all parties--the afflicted, the primary caregiver(s), family, friends, etc--to give and receive support, post updates, and so on.
I also believe that schools, churches, and other community organizations need to do all they can to reach out to caregivers. For example, a school could create a web-based program allowing caregivers to request support (things like handmade cards, art projects, baked goods, small-group visits) from a classroom of kids, say, once a month. Would you agree that little things can help ease the stress and boredom of being a full-time caregiver?
This is an awesome hub -- very informative. I'll be recommending it to anyone I know who's a caregiver!
Tim -
I'm sorry about your Dad's congestive heart failure. My father developed that toward the end on top of his other heart problems, and my brother-in-law (early 60's) too. I will pray for your Mom's health, but it is wise for you and your brothers to be planning. Your mother may be able to handle it, but consider the above and realize how very much she needs frequent help from you guys, even little things, so she feels less overwhelmed and alone. It IS lonely!
Hubmarlyn -
Thank you for sharing. The feeling of isolation is all too prevalent, adding greatly to the stress and pain. Getting others - whether school children, church groups, civic organizations - to do thoughtful somethings for family caregivers would certainly be a soothing, warm touch that helped reduce the aloneness.
As for Caring Bridge, they are awesome! I meant to add them above after speaking with an inspiring author who benefitted greatly from their aid during her dark journey. The forums and support groups springing up everywhere really help. Some of the resources listed above lead to support groups and forums, as well as sites with extensive resource listings providing access to even more than it would be feasible to list here. Great observations. Thanks again.
Hi Lisa -
Thank you for the compliment. And yes, we want to help your caregiver friends. Now you see what they are up against, please give them a little extra attention, calls, smiles, run an errand, or watch her loved one long enough for her to run an errand for herself or get her hair done.
If the caregivers are on Facebook, tell them about our new caregiver support group forming there - "Caregiver - Survive and Thrive." [I gave the link in another comment above, so won't repeat it and be spammy.] I believe we can build that into a really helpful community.
What an inspiring hub. I always had and have greatest respect for those in society who are full time carers, be it for family members or as their profession. I think it is incredible how much you give up of your own life to look after others. and what you share in your hub shows how much experience you have in that field. Great information and an issue that has to be made much more public.
lissie59
I have been feeling burn out lately caring for my parents for (4) years. You have really helped me alot. I will need this site for a long time. I have been blessed in taking care of them. Thanks for helping me to not miss any of those blessings.
Great Hub! I tried to be a caregiver to my dad (my parents were 20 years apart, so while my mom is only in her 60s, my dad's in his 80s). I have 3 young kids (one is a toddler) and I work fulltime (albeit at home), but I just couldn't handle it. The stress was enormous. Dad had seizures (scarey), has dementia to a degree, and would wake up trying to cook (burning the kitchen) at all hours of the night. His sister took him in for me and I couldn't be more grateful. She's a former nurse so I know he's in good hands. But the guilt stays with me.
Wow!!! This is a tremendously great article... For someone who had not even been familiarized with such a topic title, it's been very comprehensive... and I greatly want to commend all the caregivers out there... You're really doing a great job... And it's my prayer that HE (GOD) will greatly reward you... Stay Blessed!
WoW,
Can I say a flood of emotions. I loved my Grandma so much. She deserved the best as she gave the best. I hate that we all have to get old. But I love the place we will all have the option of going to. I hope you find that right in your heart. Caregivers are a special gift. They have places in their hearts that many of us just can't find.
May you be blessed in all you do. And the joy you give to those who you serve be rewarded because you loved much.
Ron
Thank you for a great article! And special thanks for survival tips. I personally need it, I have two old parents, and I am trying to have a deal with these overwhelming emotions and feelings every day for last three years.
Very useful and touching. Thanks.
I thank all of you for your comments and your heart. If you are hurting and want to talk, contact me.
If you cannot personally do all you want for your loved one, know that you are not alone there, either, and don't let that tool of the enemy, "guilt," sap your emotions. That goes for you, too, Tiff.
If you have caregiver stories you would like to share - touching, funny, painful, anything that might touch or help other caregivers - please contact me. I want to assemble them into a book that will reach many. Send them to Caregiver-007@hotmail.com
Essentially everyone passes through this at some point, unless they or their loved ones die young. We must reach out in love to help one another.
And I thank God that I have had Him to carry me through these trying times... Now we are to be Aarons and Herrs for each other.
Thanks for the great hub page.
My husband and I just assumed the caregiver status for his brother. He is mentally handicapped with the abilities of a 10 year old alhtough he is in his 50's, like us. In addition my mom is also struggling since having heart bypass surgery along with a whole host of other health issues.
I had thought at times I was losing my mind because of my over reaction to daily events. Thanks for setting my mind at ease.
My husband also is very appreciative of this information. We are going to make some adjustments in our schedules to alleviate some of the extra stress.
Thank you for the great information. I will share this information with some of the people that I know. I have a dear friend that has just passed away at the age of 58 years old. This is from working a full time and over time job along with taking care of her mother-in-law, husband and children. Not a good story ...but the stress caused many illnesses and you know the ending. Not pretty. But the guilt really is difficult to deal with as I saw what it did to her. Smart decision to write this article.
Thank you for sharing ....my best to you and your success!
Wow, your article sounds like it came from my head in places. As a former 10+ year caregiver for my Mother (who left this life 2 years ago), I experienced so many of your points, I could have written them. Even though Mom was not ill, as she got closer to her 90th birthday, she needed help with almost everything. She was still mobile (with some balance issues), but I did all of the cooking, cleaning, laundry, made all the decisions and was always wondering what was around the corner. As a speaker and author on elder care, I thought I had this deal down to a science, and that when I "got my life back" I would just jump back into my business. Was I ever in for a surprise. I was like a fish out of water, and to quote the old hippie boomers, I spent six months sitting on the patio contemplating my navel. It took a while for me to realize who I was other than daughter and caregiver. But it did come. I tell my audiences that it's really okay to go to the garage and kick the tires, or to walk around the block talking to yourself - you need that stress relief.
Keep up the good work,Linda
Its obvious that your long list of comments reflects the good content. Love your writing style. Keep up the good work.
Cheers Marcus
This was a fantastic site for caregivers! After caring for my Mother fulltime for 5 years and now that she has passed away, I can see the burnout I was experiencing and not even realizing it at the time. Thank you for the information - I hope others who are current caregivers will benefit. For those interested in more info for Alzheimer's caregivers, I have a site , www.squidoo.com/memoryshoppe that might be of benefit.
I am so glad I stumbled upon your hub page. My mother had a stroke in 2005. She received the clot-busting drug tPA and thankfully, for my family, we were all given a second chance. My mother suffers with atrial fibrillation, which was thought to be the cause of her stroke. My father had two heart attacks in Jan and Feb of 2008 - within 6 weeks of each other. Again we were blessed and given more time together as a family. He received a pacemaker and deliberator combo unit just last week and so doing GREAT!If you have a chance check out my blog. It was born from my experience with my parent’s illnesses and my new duties as a caregiver.
Check out this site: www.callseniorcare.com
This is the only site where a family can find a caregiver DIRECTLY without the middle man! No more overpaying for the respite that you need. I hope this helps...
my sistrs evicted my 85 year old mother from her home at 830 on a saturday night.They called my 20 year old daughter to come pick her up. That was a year ago and she is still here. the financial burden is crushing and the work never ending for me. I am also a nurse and asingle mother of a college student. I do count my blessings and control my emotions but I now somehow I feel that it is hopeless. My mom will outlive me.
I'm really impressed from all those stories... May God bless and give his power to all people who care for their elder relatives... I read all the advices to caregivers very careful. So when it takes time I'll be ready. Thank you.
I am gratified that this Hub is helping others. My aching heart didn't want yours to ache any more than necessary, either! And please do contact me if you have caregiver or health concerns with which I might be able to help.
My own Caregiver saga almost ended in my own death the weekend after I buried Mama last summer...
Even a retired cardiologist exclaimed upon hearing the state of my symptoms: "You were a dead woman! You were a dead woman!"
But a few months earlier, I had met a couple of incredible doctors (MD, PhD, DNM, surgeon, researcher, patents in 10 countries, on and on) and had started investigating the state-of-the-art, self-healing equipment (mostly soft lasers, SCENARS, Cosmodics) they were using with incredible success, even on "hopeless" situations... on brain injuries... reversing MS and diabetic neuropathy to give people a new lease on life... major burns... and as part of the multi-approach regimen for reversing advanced cancers.
And their equipment was delivered JUST IN TIME, as my hand was on the phone to dial 911 to SAVE MY LIFE! My cardiac crisis was reversed in the first 3 minutes. I've been feeling good and strengthening ever since! [Sneak peak - http://snipurl.com/laserhome ]
Their newest Cosmodic device I don't have yet, but it's the closest thing to the Star Trek "black box" - with proven stimulation of stem cells and beta cells to engage in true Re-generation of your cells and organs, instead of De-generation. I want and need this! So I'm also in training to be a Health Coach with them.
So many times since I have wished I had this equipment to help my parents. Especially Daddy... to re-energize and help heal his heart, reduce the need for the drugs that zapped his kidneys and liver, and give him an answer to his oft-repeated request: "I wish I could just wake up ONE day and feel good!"
Perhaps your loved one CAN...
For the Caregiver - There are protocols for immune system enhancement, incredible STRESS REDUCTION, even a laser mode to stimulate the production of seratonin and dopamine, and another mode (combination of wavelengths and frequencies proven effective here) that zaps most migraines completely in 3-9 minutes! It's fabulous against inflammation of all kinds, rated in FDA trials as best treatment for osteo-arthritis and carpal tunnel. That's only the beginning, and I use laser and scenar on lower back, neck, abdomen, and more... with great training materials that anyone can learn. So instead of being dead, I'm "youthing" and not "aging" (at almost 62).
Caregivers, this is the best HOPE I've found for all of us yet!
I had to just sit and cry and cry reading this whole webpage. I have caregiver burnout, I live in a rural area and there's no one to help me. We don't have respite care available. My grandmother's dementia and her incessant questions are driving me batty though I love her very much. I get no relief from it. 24/7. And now my Dad's starting to develop Parkinson's dementia and I just hope my family doesn't expect me to take care of him too because I have absolutely nothing left. I wish I were dead.
gUEST - If you come back here - go to my profile and leave a message for me with your phone number or email so I can contact you. I would like to speak with you. I know I can help in some way.
Please don't despair. Try the resources on this page, but also, give me a way to contact you. I identify ... I know those moments of despair only too well... but I also know the moments of light, hope, and later joy.
Don't give up! You've come too far and done too much good to give up now. You WILL have a life after this, if you just take care of yourself, let yourelf get angry and grieve... talk to someone and VENT... breathe... try to get some sleep (critical! - I almost died when I deprived myself of sleep for a long period)... and basically, GET HELP! You are not alone. God has not abandoned you. I will not abandon you. You WILL get through this! So contact me.
My father is 84 and has parkinson's disease. My mother is 85 and thinks she can take care of him. She has caretaker burnout and does not want to believe it. I live 2 minutes away from them. I have no life. Everyday is a new crises and my father gets more demanding all the time. I have IBS, see a psychologist and take drugs for depression and anxiety so I can continue to try and help them stay in their home. Most days I want to run away. I am sick with IBS and they keep asking me why??? No matter what I do for them, it is not enough. I always knew this would happen...get my last child through college and then my parents would get sick. NOT FAIR!!
Wonderful post! Thank you for starting this conversation - it is one that needs to be discussed!
I am a daughter in law caring for completely incapacitated mother in law and also father in law with Alzheimers, and also my two kids who are not old enough to drive yet, and need lots of driving. Everyone must be quiet all the time and the "elders" have taken up all the space in our house with the incontinence pads on both couches, and wheelchairs and walkers, and rails on our bathroom toilets. I feel like I live in a nursing home and I can't get out. My parents in law complain about everything and make mean comments about their food that I specially make for them. The "real" children are not helping me too much. I feel very down. My back is hurting and I think about trying to get valium to make myself less stressed. Any suggestions??????? Help me??????
In 2004 I had to stop working due to my declining health. I had a trucking business for 15 years but had developed cellulitus of the legs, and daytime subnamblence {sp} which is similar to narcolepsy, and also a heart condition , a bundle branch blockage {nerve disorder of the heart muscle}. So I decided to take care of Mom, she was not too bad at first , she could walk some but had very bad leg pains, and also developed cellulitus from hardening of the arteries. In 2006 her health declined to a point where she had to use a walker and I had to do all the cooking , cleaning, shopping. This year in May she began to have vivid dreams and shaking due to Parkinsons, by June she was having hallucinations so bad that she had to be evaluated in a Phsyciatric hospital, where she was baker acted {involuntary admitted} and diagnosed with Psychosis. Today she is barely able to walk, and must be wheeled to the bathroom, I have Hospice nurses , and aids for bathing her twice a week, as she now has psychotic episodes which last for up to 72 hours strait. I have to sit in a chair next to Mom during these episodes 24 hours a day so she does not hallucinate and try to get up and leave and thus fall down. One day last week I helped her out of her chair and got her walker, and she and the walker toppled over, since the hallucinations cause her to lose her depth perception. Come Sept 18 it will be 5 years without a break, taking care of Mom who will be 90 in a month, with the dementia/hallucinations come combativeness, and Mom screaming at the top of her lungs for the Police/help and these episodes can last for a day. Through the social worker , and during Moms periods of being lucid she was convinced that it is time for a nursing home, since the EMS, and social worker made clear that if Mom continues to fall, the elderly affairs office of Families and Children will be involved {investigation}. So here I am, Disabled myself with 4 siblings 2 of which are retired, and in much better health than myself, and the help from them consists of a slap on the back, and "Tom whatever you do, we are behind you"....any offer to take over for a few days?..nope, any offer to take Mom for a week?...nope, however out of fairness my sister did come to help 2 years ago, and within 5 months she stood shaking , and in tears that "she just could not take it anymore", and she left. So come Monday Mom will be going to a nursing home, she does not like the idea one bit, but that's the way it has to be, 5 years with not even a break for a movie or trip to a ballgame, or even a few hours at the beach or park is enough! 90 years is a long life, and I love my Mother dearly , but the alternative to sending Mom to a nursing home , is sending Mom to my funeral, then the nursing home Nobody should have to sacrifice their life for an elderly parent, that's not why people have Children { to sacrifice their lives/health for the parents care} so I will visit Mom often in the nursing home as it's time for me to get my life back , whats left of it.
I hope I've come to the right place for some much needed advice. My father dies when I was 5, and I never really got over his death. To an extent I depended on my mother a whole lot more and began worrying for her since the age of 5. her health was never great, but she was a great mum. 18months ago she suffered a severe stroke, and although I have 2 brothers, and they loved mum a lot too, they just got on with their lives, and mum knew this. I ensured I continued to live near my mum, so in the very least I could visit her everyday. I work full time, have 3 children and have tried to balance my own family life to fit into my mum's needs. Anyway, the feelings of guilt, the immense responsibility, the constant feeling of "I have things to do" have all taken their toll on me. My mother sadly passed away last month, and I feel abandoned, lost - for the first time in my life, I'm not so worried. But it's not a relief, I miss my mum terribly. I don't feel like chatting "normally" to family abroad, even though they keep insisting I call etc. I still walk around feeling confused, so I am afraid to go back to work, as I have a team to manage. Are my emotions normal? I am getting constant headaches, feeling nauseous all the time, can't sleep properly. A lack of appetite too. No-one seems to understand the depth of my grief, yet I feel like I am falling apart, unable to cope. Please make sense if you can!
I have recently had contact with 2 married women who care for their seriously paralized husbands, i am married also, happily, but it occurs to me that who is taking care of these AMAZING women sexual needs, and have thought about approaching them
to offer my 1 TIME service, Strictly as a medical stress relief outlet for these unselfish women and strictly for their benefit, is that out of bounds?? what do you really think tell me they have this look in their eyes like they have not had a release in a long time neither are particularly over the top attractive nor my type, but i am in awe of their selflessness. Is there a group OR SOMETHING for this? ITS SOMETHING i need some caregiver imput on
but it is on my heart and mind, please leave a comment
their should be.
So glad to have met you through the HubPages and will come back to read more. I'm a caregiver to my Mother who's almost 85 and to her sister who will turn 90 in April. Also a former corporate cog who left a high pressure, stress job as a Telecom Project Manager. Sometimes I have my doubts about self worth and recognize many of these symptoms you've listed. It's therapeutic to have others in this situation who can share joy and stress stories. Bless you.
I just witnessed the reading of a play called Zero Hour about this very same extremely emotional topic for all family members involved. Thank you for all your hard work.
www.ageguide.org is another source for caregivers to get help. Your local area agency on aging can help too.
Thank you!
I applaud your work here. This discussion must go on bravo!
It seems that your experience as a caregiver has given you a valuable perspective and the compassion to reach out to others. Great advice and resources; especially, since no one knows when he will need a caregiver or be one! Hope you have enough joy and support in life to downsize the stress! Thanks for sharing.
Great article - the dirty little secret of home care for seniors and the burdens it imposes on family caregivers are often not only not spoken of, they’re more often not even realized. Family members who are also caregivers often find themselves doing more, in more demanding situations, for longer periods, with less help.
I have an aunt and uncle who are experiencing a tremendous amount of problems. My uncle John has had horrible pains in his left leg for about 6-8 months now. Multiply doctors have given up. This pain has changed the person he is today. Now he is wearing away at his family. My aunt maria is completely at a loss of what to do. She loves her husband but the way he treats her is horrible. He can do his basic living skills but he can only do it with one leg, the other one just had surgury. Maria went back to work and he is extremely upset with her as he thinks she should be there helping him. But when she is there helping, whatever she does for him just doesn't ever seem too be good enough. Just wondering if there were any volunteer associations for caregiver burnout, she and her daughter definately are BURNED OUT!!! Thanks
I've been a care-giver 3 times plus I'm on disability. Dumb, insensitive people didn't understand what I was saying when my younger sister was dying of ALS. My house was foreclosed so I lost all that money and I had so little as it was. I couldn't go out to take care of my sister because I was in danger of being evicted. A care-giver needs stability like not moving.
This is an issue that really needs more discussion. Thank you!
I have a husband, three kids and one on the way. My dad has lived with us for almost 2 years. I am on the way of getting put on bedrest. My dad has my kids hoping every 5 min. I've had it with caretaking. He is a very hard man to get along with. He thinks it's all about him and no one else. He is very lazy man who can't do most things but can do some things. He sits around all day having me and the kids wait on him hand over foot. What happens when I do end up on bedrest? What happens when I have the baby? He gets upset when I spend to much time with the kids and my husband. He thinks we owe him something. Not the other way around. I neep help.
This is why I feel that employing a nanny to care for my loved ones is the best way provide the care they need. It's better than sending them to a home.
Thank you so much for your informative blog. My husband and I are sharing caregiving responsibilites for my 93-year-old mother, and I can SO relate to everything said here. I am blogging at "Mama's final chapter" as a way of venting and also trying to share some practical advice that works for me. I try to maintain humor and an attitude of gratitude as I go from day to day. God bless us all.
Good ideas....I love this. I, too, have been a caregiver twice. I just wrote about mine and discovered yours. Bless you.
I have been taking care of my wife w/ MS for apx 10 years. I make too much money for any aid, but we do have a nurse who comes in 15 minutes a day to catheterize her. When I come home, I spend the rest of the day until 5am picking her up, bringing her to the bathroom, catheterizing her and bringing her back to the couch. I then go to sleep for two hrs wake up at 7am and start again. I am done and am worth more to her dead than alive both financially and emotionally. I feel like the still living bug with the other bug's fangs firmly in place sucking his life out. That bug will be dead soon (and would have been better off dead as soon as possible, prior to his life juices being sucked out). I came here looking for the most efficient (read painless) way to end my life so she can continue hers. As I don't believe that I will find this here, I will vent - move on and see if I can find the most satisfactory solution as I see it. I suppose this isn't the most uplifiting message, but I leave it for anyone else with similar feelings. I wish you all the best.
Good Luck.
I too am a caregiver for a disabled friend, I sometimes feel so lost. My friend has no income, no health care insurance. He lost all of this when his company closed the doors. It was at the end of his employment when this all happened to him. I don't make a whole lot of money and it seems the financial burden is overwhelming. His meds alone cost a whole weeks pay, thank goodness it is no more than that. I have had some of his other friends criticize me and call me lazy. I feel so inadequate, help!! how much more do I have to endure? I have lost myself, I no longer know who I am, what I am, where I am. I am a chain smoker now, I try to keep the house quiet so he can rest??? what more can I do.
I understand totally the gentleman above Dead Inside. I am so tired, and depressed myself. I feel I have no one to turn too. I can't afford counseling. I lost all my health care when the company I worked for closed their doors as well, I am working and doing what I can. I need a second job, but if I do that means no care for him.
Help me, please. I am being hammered hard with depression again. My wife was diagnosed with terminal cancer at 35. Twelve years ago. Riddled with metastases. I cannot believe what I have seen her go through since then. The doctors have never seen this stuff before. It is a complete horror show. Mental, physical, emotional - her skin is in unspeakable condition. Her mind is not right. Our kids were raised with this (now 18 and 25). They had major issues along the way - with 3 near death experiences for me to wait through at the childrens hospital - and then prison for one. I can hardly feel love anymore (for her) although I say I do. I lie. I want it to be over. I want it to have been over for a long time. I have given my life and my youth away. I need something, someone, so badly, but I can't have that. I am having spooky health problems, and not telling anyone. I have one friend left. I need to talk to someone. I need someone to care about me. I want to kiss someone who doesn't physically repulse me. I want to run away, for it to be over, and for me to not be old and burned out, and unable to find love again. But instead, I will probably continue on until I get fired for poor work performance, lose my insurance, my home, my car, my phone, and then will have to move my wife in with her ancient psycho mother who has always hated me. My fears are consuming me. I don't want this. I want a woman to love and respect and who will amaze me. I have a zombie to care for instead, and have to pretend everything is fine, wonderful, going well. I can't take it anymore, but I don't have a choice. I have to take it, for as long as it lasts. Everytime I think she may be dying (finally) she gets better after yet another impossibly grotesque descent that lasts for months (or even years). What am I supposed to do??? I don't want this anymore. I want to be loved.
Excellent advice. Thanks! I have been caring for a nomverbal, severely autistic child for 4 years 5 days a week and reading this article is uplifting. It can definitely become extremely tough and frustrating and I needed a reminder to take some time for myself.
Okay, I've been killing myself caring for a terminally ill mom for a year and a half now, while trying to hold down a twelve-hour a day job too, and I just have one question. Why does the government say you can only have $2,000 to your name before you can get ANY HELP with caregiving? I should not have to destroy my life and health to keep my mother alive. I wish we had never let them put a food tube in her. She'd be dead and I'd be free. If anybody ever tries to talk you into sticking a feeding tube into your declining parent, say hell no. Not being able to swallow/eat is nature's way of saying it's time to go. Let them go. One more tip: don't ever leave your house in another state and go home to be a caregiver. If you do, you're entering hell on earth. Never mind guilt, never mind protecting dwindling inheritances, never mind vestigal emotional ties. Let the chips fall where they may over in parentville - take care of yourself. I'm stuck here. You don't have to be. Just say no.
I moved in with an elderly parent because I'm the unmarried one in the family and in a better position to do it. I thought it would be fine but let me tell you, it's the end of life as I knew it. And my dad doesn't really need all that much care, just meals and housework. I've gone from living in a vibrant city to Dullsville rural life, away from my social network. The neighbours are all either married with young kids, or married and retired, or eccentric drifter types. Although I still work, my home life is consumed with picking up after another person and cleaning up spilled pee. It gets old real fast. And being the single one, where/how am I supposed to meet someone now? I've gone from reasonably content and active to crabby and stressed and on the verge of tears on a daily basis. In the past year I've sprouted a million grey hairs, wrinkles, a grouchy face, and 12 lb of weight gain. I want out.
I too took care of my terminally ill mom. 29, dropped out of university, burnt out beyond belief. Didnt take care of myself. Had zero supports. But how could i just abandon my mom, like all the rest. Especially those who couldnt "deal with it" or couldnt "stand to see her like that". My mom was a person, who had many talents and did and made many sacrifaces of her own for many people, including strangers as well! As hard as it was, physically and emotionally, and as hard as it emotionally still is to deal with it all after her death, I do not regret taking care of her for one minute and would do it all again. Looking back on things, yes there was a LOAD of terrible black moments that seemed to string endlessly on. However, there were also many happy moments that are only ours to share. I wont even share them here, because they are OUR special moments. And I feel priviledged to have these moments. I love my mom and wish I could just hear her voice again and be with her. I regret all those times I snapped and took out my resentments on her. She never chose to get sick. She didnt "do" anything to or "demand" anything of me. I chose to take care of her, I chose those demands. I put them on myself. I did not know how to stop the societal pressure from affecting me. I did not know how to reach out and shake people and say "WAKE UP - SHE IS DYING AND WE BOTH NEED YOUR HELP". I did not know how to listen to my body and my voice inside. I made many mistakes and hurt myself along the way. But I also did many things right and at nite can go to sleep knowing that I was there for my mom and that she appreciated it. I remember at the time thinking I cant do this. But somehow I did. I even graduated from university. Im not faced with dealing with the loss of my mom (and recently in the last month the loss of my dad) and I am thinking again, that I cant do this. But i do know, from experience, that I can and will. It will just be hard and will require work and taking care of myself. But i will do it. And when I will look back, I will be just as amazed, as i am when I look back on the past 2 years, that I did it.
I took care of my disabled 33yr old sister from 2002 to 2010. Two years ago on a sunday morning I just walked away..... I had gone over to my parents early in the morning to get my sister ready for the the day. I had left my husband at home making blueberry pancakes with our children. I went into my sisters room and started to change her and my father who is partially paralyzed and my mom whos an amputee rolled into the room on her wheelchair yelling at me and telling me how awful I was. My sister was such a mess, she had gotten feces all over her back and her feeding tube, it was everywhere! Anyway, my dad was yelling at me because it was 9am and I should have been over earlier and my mom was yelling at me because she said I didn't say Hi to my sister at the yogurt shop days earlier. I looked at them and said, you know what? I need to go home and make pancakes with my kids......I've never been back and my loving parents and my 5 sisters haven't spoken to me since. I wish they could have seen this article instead of calling me crazy,bi-polar and dysfunctional! For 8 years, I alone cared for my sister and not one of my siblings helped at all! I also had my 7th child in 2004 and not one of them offered to help me so I could have some sort of maternity leave. I never complained and I kept it all in until that day.
When I look back I can't believe it was 8 years! Yes, I was getting paid but a very minimal amount. About $800 a month for 7 days a week, running over to my parents house 4 or 5 times a day. Changing all of her diapers and doing all of her tube feedings and getting her off to her day program at 6am mon-fri. My family could never go anywhere because there was never anyone else to care for her. Since that day we've been to Disneyland, beach, camping and many many weekend trips. All things that my other family members where always free to do while I stayed home and cared for my sister. Listen to this article because believe me caregiver burnout exists and it probably should be taken care of before you have a caregiver breakdown like I did! Its sad that my family is so hateful but God has blessed my life in a million other ways since this happened. I'm able to spend valuable time with my 7 children that I never realized I was missing. God knows how I loved and cared for my sister and so does she(she doesn't speak) and at the end of the day thats all that matters:)
i took care of both my parents. i suffer from "what if" scenerios, because now i realize everything i gave up to do that. my parents had me very late in life, and they were in their sixties when i was a teenager.there's a huge age difference between me and my siblings, and no one cared or offered (i did ask) to help out.some would go to see mom, but only when they needed something.usually money. i am lucky i was in a commited relationship during this time.i am lucky that person stayed w/me thru all of it. he has passed away.i'm left with all this regret. our life was put on hold because of selfish-ness and greed.when i see people my age w/children, many w/grand-children, it hurts. i feel nothing but regret.
My mother is elderly (77) and legally blind. She still lives in the home that my 4 others siblings, our dad and myself grew up in. She lives by herself. All of my siblings live within 30 miles of mom. My dad passed away in 2000. The youngest sibling is married with 2 young children and works 2 full time jobs. One of my sisters is very very ill with a poor prognosis. She is mostly bedridden. My other sister is mentally disabled (bi-polar). She does the best that she can to get mom to her doctor appts. but she has her limits. Our older brother, who lives the closest to mom is divorced with no children. He believes that cooking mom a dinner and leaving it at her door about once every ten days is going out of his way. Mom thinks he just hangs the moon. I try very hard to do everything for mom that she needs (Pedicures, taking care of her meds, helping her to pay bills, taking her to the grocery, helping her with her laundry, whatever we need to work on.). I spend every third weekend with her. I love her and want to help her. I own my own home and am the second furtherest away from mom. I try to spend a second of my 3 weekends with my sister and brother in law, so he can farm his land. My sister requires someone to be with her most of the time. I would not trade the ability to help and the love that I have for any one of my family members, but today my mom told me that my older brother helps her much more than I do. He hasn't been there for her in months and that bothers me that he could treat her that way. I am HURT. I will continue to do what I need to do, because that is the kind of person that I am, but how do I let these kind of comments go? Where do I find the strength and not become the bad person?
Thank you for the article. My father has dementia and is the last stage. He is bedridden and my mother is the main caregiver. I recently lost my job and have spent time helping my parents and had to talk to my mother about her displays of resentment and not taking care of herself. My mother rarely cries and always has kept a clean house and herself well put together. She has neglected her own grooming as well as not eating and not taking her diabetes and high blood pressure medicine. She is very snappy if suggestions are made to make her difficult situation easier. I value any suggestions on how to handle this since any suggestion makes her very defensive. She doesn't want my dad in a nursing home and will not hire a nurse because she is on a fixed income. However, Hospice comes in Monday through Friday for 1 hour to assist my father with bathing. Thank you for any input.
The best thing you can do for your Mom is to be as understanding as possible. It's a hard situation because as a wife she probably feels obligated but being a caregiver is so stressful and she needs everyones support. Remind her that she won't be able to care for your Dad if she's not doing well. Diabetes and high blood pressure is a deadly combination if not treated properly. I would talk to someone at hospice for any suggestions and maybe your area might have additional services like respite services for live in caregivers. Just let your Mom know that you love her and appreciate her and offer to help as much as you can. It's a hard situation but with everyone helping it can be done:) God Bless!!!
my brother has cerebral palsy & ocd he 30 year old. im 25 year old take care him 6 years and more. He stress me out so much that i want to walk out door for good. what should i do? my family member cant help me. He mean, yell at me all the time anything. I can't sleep well, im losing lot weight, i have headachs, im sleepy, im nervou all the time, and i feel sick all the time. How do i get my self out of this? or to do?
Burnout Among Caregivers - From the Centers for Medicare and Medicaid
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Caregiver-007 Hub Author 4 years ago
I welcome comments and want to know about your caregiver issues. Have you had family caregiver experience? Are you in the midst of caregiving? How can I help you? What do you want to know? I'll be as responsive as possible with this and other Hubs and resources. Just tell me!