What I wish others knew about being a caregiver...

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WHAT I WISH OTHERS KNEW ABOUT BEING A CAREGIVER

Being a caregiver cause extreme emotional and physical exhaustion.  I have been caretaking for my mother in law, age 60, with a rare brain disease having crippling and devastating effects to those and her caregivers.  Her disease requires constant 24 hour attention as she does not understand her surroundings, can't understand how to feed herself, how to wipe her butt, sit on the toilet, turn on the water at the sink, turn off the water. Her personality is also affected - she will hit and kick people she thinks are in her way when they only try to protect to her.  She has 4 sons, unfortunately only my husband and I care for her. Her own children excuse themselves of any responsibilities and accuse us of terrible things when we ask for help.  My husband had to quit his job to be her primary care which entailed guiding someone through all basic life's daily activities of living, while taking her to all her doctors appointments. Even getting a diagnosis took 4 years since her condition is so rare and so poorly understood. Finding social resources for her and navigating the medical and social system in itself is a full time job. 
 
 I am working 6 days a week 10 hour days, to support all three of us.  I get up with her the countless times at night as she needs help going to the bathroom or just wants to be awake and wander. On my day off I take her out to give my husband a break. She tries to exit the car while driving, she wanders out in the middle of a busy street almost getting hit by cars and fights to get away from me when I try to help her. Before things got really bad with her, doctors told us she was just depressed and that was why she acted that way, then they said it may be a mini stroke. She is pretty much senile, has an alien arm, cannot navigate her surrounding,  somehow has the ability to still walk even though it is just a matter of time until that goes. In the early stages of her disease we were hopeful for her to recover some quality of life.
 
Just months before dealing with this new nightmare, my husband and i also suffered the loss of our newborn baby.  We were told he would mostly likely die at the prenatal sonogram appt because of a major heart defect and other developmental issues and at his birth that is exactly what happened.  Everything in my life has been a nightmare - no break to even catch a breath; just transitioning from one nightmare to another.  My brother in law and sister in laws actually reason that we should have to take care of their mother because our child died.  The hurt is so deep that they turn their back on their own mother and us in this nightmare.  I have nothing for my own future,  all my money goes to paying the mother in law adult day bill $2000 a month,  paying caretaker to help out a few hours a day, so we can actually have a moment to shower or sleep or even time to mourn what has happened. Not to mention all the devices to buy to keep this lady safe, Tracking bracelets, door alarms,  bathing chairs.  I am only 30 and feel like i am going to die if i keep this up. 
 
I have given up on any hope of happiness in the near future and just live day to day. This is not even the worst of her disease yet, soon she will being choking on her food and lose the ability to eat and slowly and miserably starve to death.  I don't know how I am going to bare to see her suffering.  Even Job knew so much pain that he had wished he had never been born.  After going through this experiences if I find out I too have a terrible disease like this, I would take a pill before made to suffer in such a way and refuse any treatments to prolong this suffering. 

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I wish others knew that caregiving is physically and emotionally so draining that it can damage the caregiver's health.  I was not prepared for this.  I should have known that, as the only child, I would become sole caregiver.  What I hate most is the neediness and the personality changes.  My mother has become so emotionally dependent that she expects me to give up my whole life to be with her 24/7 and nothing I do is enough.  When a close friend was dying of cancer, I missed my last chance to see her because my mother said she needed me.  Now I take time for myself and explain that if I don't, I will collapse physically and emotionally, and then she will have no alternative but a nursing home.  After three years of caregiving I became depressed and now need medication for high blood pressure.  I was fine before. It is my duty but is so very difficult. 

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" The days are not yours anymore! I haven't ran a sweeper or took care of my house in a year. I'm just so tired and burnt out."

 

 "I would like you to consider that you may not really being a caregiver. As one who is allegedly being cared for, please consider what it is like from the other side... waiting for hours for food. "Are you ready for dinner?" Two hours later... Have you gone for 6 months without a bath? My skin is now so rough I can scrape the build-up with my fingernails. Do you know what your head or hair feels like after not having it shampooed for 4 months? I can't get out of my bed to do it myself. What am I supposed to do? The person "caring" for me can't lift me. She basically gives me a frozen meal, three times a day. If there were a single pill to take that would end this existence, I would take it in a heartbeat."

The email, above, was sent in anonymously so I have no way of obtaining any more information. To the writer of the email, excuse me for saying this but I get all kinds of email, some legitimate and some not. If you are really in this situation or if you are writing on behalf of another, you need to get help now. There are agencies that provide free homecare but you will need to check out what is available in your area. Here are two sites where you can find information on who to talk to for homecare and if you need an advocate.

http://www.ncoa.org/

http://www.eldercare.gov/Eldercare.NET/Public/Index.aspx

Can you:

Communicate needs to your caregiver?

Speak to a friend, neighbor, relative, or member of the church about your needs?

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"I wish others knew that being a caregiver is a very hard and hardly rewarding job for me. I try to fight to get my 48 year old husband the best care possible and am undermined by him and his family at every turn. They make him promises I can't keep and that they are unwilling to fulfill. He has a genetic disorder that can't be helped but has also made the situation worse by abusing his body with substances. He took my youth and heart away. I feel like I can't leave him because his is sick. I am just so tired of being taken for granted not only for being his wife but for the fact that I am also a nurse. It is just expected that care that would otherwise be provide by others is left to me. I have always taken care of my self and when I say I need sleep because I haven't in 52 hours, I mean it. Having people compare raising their children to trying to deal with an independent adult who has the right to make his own decisions is infuriating. It is not the same thing. Please give the caregiver the benefit of the doubt and understand that they are a person too and should be cared for with the same compassion you would give to the sick."  -anonymous

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I'm a 49 year old single woman who is now a caregiver to my 84 year old father. My older brother, who had lived with my father on and off for years when out of relationships with women, left at the drop of a hat to live with his new girlfriend. She, ironically, had relocated to be a caregiver to HER mother about 2 hours away. I relocated from CA to MI since I have a business that allows me to work online from home. But, it was never my intention to live in MI again in my lifetime. I love my father and want to honor him and provide support....but, I have to continue to live my life, build my business and at least get enough money together to pay the Neptune Society to deal with my corpse when I leave this world, let alone "retire." I don't even have health insurance. When I got to MI, my father told me his "plan" for the future was to sell his condo (which he still has a $70k mortgage on) and move into a 2 bedroom apartment for him and me. I was horrifi!ed; that is not the plan I have for MY life. I'm  single because I don't want a relationship. I was working on my finances and starting a new business before I put energy into the dating world. Then my brother left town, and I stepped up to help my father. I already know I can't spend another winter in MI and I am going to have to have a serious talk with my father and brothers about a real plan for getting him the support he needs at a cost he can afford, or we can supplement - and all of us are strapped. I fear that my brothers will weasel out of any sort of financial commitment and it will all be on me.

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I am at the point that I hate my Grandmother (95yrs old). I feel she is a burden and refuses to go into a care facility so here I am constantly dealing with her moods, anxiety, attitude, and my family outside the situation just doesn't care...or get it. I am sick, mentally. I just cannot stand another day with her.Almost deaf and almost blind, she rages and I have to constantly pick up the pieces, hide my own health issues,my own needs and wants and life. How can I keep this up???!!!

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That I cannot control the thoughts, choices, and actions of my care recipient widowed elderly parent.  Also, as her only-child adult middle-aged caregiver, with my own physical chronic health issues and full-time job, I am doing the best I can--so please, when you think you know why I am or am not doing or not doing something for my mom, please do not assume you know the answers, the reasons, or what the situation is.  At day's end, you can leave and "go home" with your Monday-morning-caregiving-quarterback advice and input--I cannot.
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I hate being a caregiver. I was on the verge of leaving an abusive husband three years ago and before I could leave, he had a disabling stroke. I stayed on because I didn't have it in me to leave a person - any person - in that condition. My life is over. He is still abusive and I plan to get out ASAP. What's hard is that people see me with a smile on my face and think everything is okay. That's the fake mask I wear so people won't worry about me. I wonder, why don't I want them to worry about me? I think it's because I have always been capable in every area of my life. People will be shocked that such a devoted wife would leave her husband, but I can't wait for the day when I have enough money. (He doesn't support me financially. I had to quit my job to take care of him. This has affected my retirement savings and what I might have been able to do for myself, like get outside help, which he doesn't think we need as long as I will do everything.) Anyway, just wanted to list one caregiver's story. I am still angry that I couldn't find an out before giving three more years of my life to my abusive husband, who seems so wonderful to people who don't live with him. Doctors, social workers, rehab folks all just assumed I would take care of him. So I did. My stupid.

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Caregivers do not want to hear, "this was your choice, the rest of us have to move on with our lives" it was my choice but a little bit of compassion and appreciation would have been nice.

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 I never thought I would have to clean up my father..  I'm not cut out for this but I am doing it out of love.  Alzheimers is terrible and if I get it I'm taking every pill I can get my hands on.
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That having a child or grandchild with a disability is not something that goes away. While some may see us as needy what we need is for someone to understand the daily life long trials and blessings this has brought.

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The best thing to help a caregiver, is to give them a break.. call and offer to come sit with the patient while the caregiver goes to the grocery/bank/whatever.  Offer to do the patients' nails- elderly have a hard time trimming their finger and toe nails - ladies especially enjoy a manicure. If Jesus could wash his disciples feet the least we might do is help trim someone's toe nails and give that 24/7 caregiver a much needed break.

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I do wish others would not immediately negatively judge and condemn a decision the main caregivers have to make without first seeking the truth of the matter. Difficult decisions are painful enough without having to receive a reprimand out of total ignorance.

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I have been trying to help a first cousin with dealing with her mother's situation of being in a nursing home and not being well mentally.  I have been down that road with my mother's mother and my mother.  It is hard to write what to do. But they are a long distance from where I live.  I have told my cousin to put on a happy face when visiting the nursing home, cry on the way home if necessary, talk about what is going on in your life even if the other person does not respond. My own mother was speechless after a paralyzing stroke and I talked to her just like she would answer me which she did with facial expressions or blinking of her eyes.  Lost my mother 7 years ago this week and it is still hard, as I was an only child and only grandchild of her family. Just felt the need to share this with you.

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I know about being a caregiver as an only child. My father raised me to be an independent thinker and taught me how to handle business affairs and money.  So after he died it was up to me to do these things for my mother.  To begin with she lived 200 miles from my home and I would spend 2 weeks with her and then come home to my husband and teenage daughter for 2 weeks.  Finally had to convince mother to move near my family.  She would seldom get out to go shopping even with me, so I would get a list from her or make one myself and go do her grocery and other shopping.  I was so depressed after she had a big stroke that left her paralyzed on the left side and brain damaged.

So I had been raised and told to put her in the best nursing home I could find and keep a close watch on her.  This I did for over 4 years, changed nursing homes once.  She also lost her ability to speak so we communicated with smiles or frowns, surprising how much visiting you can get done with facial expressions from her and me asking questions or carrying on a conversation like she was going to answer me.  Had to watch for her eyes to seem clear and alert before trying to carrying on a conversation.  I can never look back and doubt I did the best I could do for her.  She has been gone for almost 7 years and I miss her still.

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I wish my loved one would understand I do all I can and not try and make me feel guilty that I'm not doing enough. I'm ill myself and have my own limitations.

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I wish my mother would understand I'm trying so hard to be positive about the situation we are in, and for her not be so negative about everything. That is the hardest thing about my being a caregiver, is to begin a day happy and by 10 a.m. having my joy squashed by negativity.

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I need patience, understanding, stamina, endurance... to remember to count my blessings... to find a little time for my own needs.

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10 plus years of caring for elderly parents w/Alzheimers and my own family's financial stress caused me to become clinically depressed. For a long time I felt guilty about this because a Christian should not be depressed. I avoided talking about my problems with my brothers and sisters in the Lord for many reasons, but primarily because I knew many (who'd never faced these problems) who thought faithful Christians never faced depression. I also did not talk about it because sharing my problems was like a crack in the wall of a dam. It did not take a lot of compassion from another soul to reduce me to tears. If asked, I often joked and made light of everything but inside I was strung so tightly that I nearly broke. Rather than field questions, I appreciated a non verbal hug or expressions of admiration for my parents and for me. Little favors that made my life easier - someone volunteering to take on a responsibility at church that had been mine to carry out, work done on our house for which I would never get a bill, a favorite food of my father's brought to me on a regular basis. If you know someone who is struggling, support them and try to smooth some of life's road for them, if you can.

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I appreciate so much when others offer their help with my mom to give me a break. I do wish, however, if they are serious about it, that they would invite her over, rather than saying to me, "Call me if you need me." I don't feel comfortable calling, unless it is an emergency and I don't want to hurt my mom's feelings by her finding out I just want some time alone in my house. Also, if she knew I had called someone to take her she would feel uncomfortable there and feel like she was in the way.




http://ourhopeonline.com

September/October 2017