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What It Means to Be a Caretaker

 

A few days after my Mom went Home to be with Jesus, I started promoting a GoFundMe page to get help to keep my house. A stranger on Facebook commented that I should have been working instead of watching TV for all of those years. I brushed it off because at the time I was too busy grieving and worrying to care about some stranger’s stupidity. You see, a lot of people really do not understand what being a caretaker involves; even those with family members or friends who are caretakers, cannot fully grasp the life of a caretaker.

According to the Family Caregiver Alliance, there were about 43 million unpaid caretakers across the nation in the 12-month period for which they were reporting. That isn’t surprising. There are still a lot of people out there who care for their families and friends. However, what their page full of statistics does not mention is every caregiver/care receiver situation is as unique as the individuals involved. There are similarities, but when you include personalities, various diseases and level of need, financial situation, outside medical care and many other factors, the variables are countless. I can only speak of my own situation to try to explain what it means to be a caretaker.

Mom had COPD (Chronic Obstructive Pulmonary Disease) and arthritis. In the last few years, she became a little more forgetful, but never showed signs of full-on dementia. She kept her brain busy with crossword puzzles, solitaire, reading and listening to Rush Limbaugh. She never stopped learning. Until the last few months of her life, she was ambulatory, but too much exercise wore her out quickly; she had to learn how to take it easy and let me do things for her. She always had trouble sleeping and that just became worse when she couldn’t sleep in a bed anymore (for about 15 years, she slept in an easy chair). She enjoyed long, interesting conversations about the Bible and politics, and she loved to reminisce about days gone by. We would get on each other’s nerves once in a while, but what a tremendous blessing it was to be here for her. I took care of her, 24/7 for 13 years.

It is easy for outsiders to judge the life of a caretaker, especially when the care receiver is cognizant and engaged in life. People tend to think that the caretaker should be able to go on with life as usual after doing a few things for their loved one. Daily responsibilities include fixing meals, laundry, cleaning and running an occasional errand. That part is easy. Caretakers must also know which medications are to be given, what the dose is, what the medicine does and when to give it (there are many).

With Mom, there were also many daily breathing treatments, making sure the oxygen concentrator filters were cleaned and the humidifier filled; keeping track of oxygen tanks and making sure the regulators were properly set, and when the oxygen equipment needed to be serviced or replaced, I am the one who made the calls. Getting Mom to the doctor’s office was another task to be dealt with. I also made sure the chair she slept in was made up like a bed, with sheets and blankets, and every night I would help her settle in. Making certain that Mom was as comfortable as possible was not only my job; it was also my greatest blessing. Caring for the one who cared so much for me was my purpose, and I loved it.

Caretakers seldom go places and do things with friends, because they can’t leave the one they care for alone for long periods of time. This makes it difficult to maintain friendships. Even real friends don’t understand why you can’t get out of the house for a while, and eventually they fade away. The lack of friendships never bothered me much, because Mom was awesome. Our endless conversations were filled with laughter, learning and a lot of joy; gifts straight from God. There were some rough times; we didn’t always see eye to eye, but we always got through it. The blessings of being a caretaker far outweigh the curses. Time sort of stood still for us, as we learned and grew together. I wouldn’t trade one second of time with my Mom for anything.

I used to say the hardest thing I have ever done in my life was picking my dying father up out of a wheelchair and setting him on the toilet; not so hard physically, as it was emotionally. Yes, I took care of my Dad, too. The strongest and most capable man I ever knew; his body became so weak, but his spirit never did. That was the most difficult moment in my life, until I listened to the 9-1-1 operator instruct me in giving Mom chest compressions, as she lay on the floor waiting for the paramedics to arrive; her beautiful blue eyes, staring lifelessly into oblivion. The paramedics got her vitals back and took her to hospital. Standing on either side of her bed, my sister and I held her hands as her weakened heart quietly stopped.

The house is quiet now. Yes, I’ve been told, I need to learn to care for myself. However, Mom is my life, and now I must learn how to live without her. If you are a caretaker, God bless you for what you do. May He give you wisdom, courage, and strength. If you know a caretaker, please pray for them and be kind to them; they are going through things you can’t understand. Life is precious! Enjoy each blessed moment, and don’t ever give up on your loved ones when they need you; that is what it means to be a caretaker.

Complacency is not an option.

There are 37 comments.

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  1. Member

    God bless you and be with you, @susanmcdaniel. My wife and I have some understanding of what you’ve been experiencing. Our mothers are 90 and 95 and live in an independent living facility a few miles from our home. We are therefore the main family caregivers. My mother has enough money that we’re able to hire caregivers to come in for a few hours in the morning and for spot checks throughout the day. My mother-in-law is not so fortunate and must depend on three of her four daughters who live in the area. My wife and her youngest sister, being closest, are the primary caregivers. Both mothers have been fortunate, so far, in not having any debilitating diseases. My mother-in-law recently fell and fractured her left hip (after doing the same to her right hip last year), so after an operation, she is in a rehabilitation facility trying to work her way back to a semblance of her normal health. Being in the rehab facility means that she’s looked after 24/7, but my wife still has to go daily, collect her soiled clothes, launder them, and bring them back, check her mail, make sure the bills get paid, run errands for her, etc. Neither my mother nor my mother-in-law are particularly active or engaged. Mostly they sit in their living rooms watching television or staring at the walls. It is not easy to deal with – but it pales in comparison to what you’ve experienced. I’m so sorry for your loss, but I really appreciate the good and positive attitude you’ve managed to maintain.

    • #1
    • March 13, 2018 at 8:43 am
    • 7 likes
  2. Member

    Are you a member of a church or go to church? You may find kinship and support there, even a pastor could counsel you and help you redirect your energy and the newfound personal time that you now have.

    Give yourself time to grieve and process it all – did you have any help from visiting care or family? If you did it all on your own, give yourself time but don’t isolate yourself. Even if you make to do lists to keep your head on straight, plan something each week fun – lunch, visit a museum, call up family and friends – take steps to regain a social connection with real people.

    • #2
    • March 13, 2018 at 9:01 am
    • 5 likes
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    Susan McDaniel Post author

    Thank you @pugshot Your words are kind and encouraging. Every case is unique, and we each have our ways of doing things. My sister is a caretaker, too; her husband is in the advanced stages of Alzheimer’s. She and I are similar in that we both care for our loved ones at home without outside help. Yet, her plight is so different than mine was. I was so blessed that Mom’s mind was good, and she was not a big fan of TV (unless it was old reruns of The Man from U.N.C.L.E. in the middle of the night – she loved that show; it gave her the giggles). My prayers are with you. May God give you and your wife strength and courage.

    • #3
    • March 13, 2018 at 9:02 am
    • 4 likes
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    Susan McDaniel Post author

    @frontseatcat Mom and I enjoyed our church time through the internet and radio. My pastor posts his teachings online, so we were able to worship at home (this church is 30 miles away). There was no outside help with Mom, because my sister is also a caretaker (her husband is in advanced stages of Alzheimer’s), so she was/is unable to help. I live in an awesome neighborhood and my neighbors have all been very supportive. I still may lose my home, but am trying to find a way to avoid that. It is all in God’s capable hands. He takes care of me, and surrounds me with His Glory every day.

    • #4
    • March 13, 2018 at 9:07 am
    • 2 likes
  5. Thatcher

    So very hard, Susan. God bless you.

    • #5
    • March 13, 2018 at 9:09 am
    • 3 likes
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    Susan McDaniel Post author

    Thank you @percival Each day is a gift. Learning to live without her is proving to be very difficult. But, I know where she is, and I have no doubt she is patiently waiting for me to follow.

    • #6
    • March 13, 2018 at 9:19 am
    • 2 likes
  7. Member

    I am wondering similarly. I’ve been a single mom and taking care of my mom for 13 years. For much of that time, she has been pretty healthy and moderately ambulatory. It is hard to explain to people everything that it entails. Much of the time, it means just being home so everyone else can just live their lives.

    This year she’s been diagnosed with terminal cancer. She’s already at the end of the expected time for her type and she is only slowing down a little. But I’m mostly afraid of what happens when I’m “free”. What do I do then?

    I wish you all the best. It is not an easy job and I certainly hope you can keep your home. You have done a beautiful service to your family.

    • #7
    • March 13, 2018 at 10:09 am
    • 5 likes
  8. Thatcher

    Praying for you too, TRN.

    • #8
    • March 13, 2018 at 10:13 am
    • 5 likes
  9. Thatcher

    Susan McDaniel: We would get on each other’s nerves once in a while, but what a tremendous blessing it was to be here for her. I took care of her, 24/7 for 13 years.

    Susan,

    You are the blessing. What a good good job you did. The world is a better place for it. My mother took care of my father for 10 years. He had Paget’s disease and could barely walk. She was a hero in my eyes even though she was so critical of herself. After he was gone she was feeling unsure about it. I did my best to let her know what a really great job she had done.

    Have a great day Susan.

    Regards,

    Jim

    • #9
    • March 13, 2018 at 10:15 am
    • 5 likes
  10. Member

    @susanmcdaniel, my wife and I are in a very similar situation to yours and @pugshot ‘s. My mother in law is 92, Mom is 81, and both still live in their own homes. But neither can live there alone, so my wife stays with her mother 7 days a week ( she needs more attention) and I spend 3 nights with her, and 4 nights with my mother.

    It is never easy, and at times I think it is making my poor wife stir crazy. She hates our nights apart, and she dreams of the day we can be ‘like other married couples’ and have our OWN home.

    But we both know that we would not have it any other way, that our time with our mothers is limited and precious, and without us neither would be able to live in the home they once shared with their husbands and families. And as that is what they want, that is very important to us.

    We both have siblings who are marginally involved, some more than others, but in the end it falls on us. They aren’t able, or willing, to take this responsibility. And they take it for granted that we will. It is frustrating and sometimes feels like nobody appreciates what we sacrifice, but we keep reminding ourselves we don’t do it for appreciation, we do it for our mothers. And they have earned it by all they have done for us.

    So G-d bless you for your devotion to your mother and father, and thank G-d for people like you who know what responsibility is and do not shirk it. I pray that you find your path going forward now that you have completed this phase of life, and may it include the blessings you clearly deserve.

    • #10
    • March 13, 2018 at 11:01 am
    • 10 likes
  11. Member

    Hey, Ricochetti – how about getting on board and giving @susanmcdaniel a little GoFundMe love? If we all kicked in just a little, we could give her a big boost pretty quickly!

    • #11
    • March 13, 2018 at 11:53 am
    • 4 likes
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    Susan McDaniel Post author

    @therightnurse Wow! Thank you for sharing, and know that you are not alone. Your Mom is blessed to have you to care for her. There isn’t a set formula or a guide book that a caretaker can follow when the one they care for is gone. It is a mass of confusion and chaos, every day. Hope comes; hope is dashed. It never gets better it just gets different. I don’t mean to sound down, but reality isn’t pretty. I do know that faith in God and the prayers sent up on your behalf will give you more strength and courage than you could ever imagine. You are in my prayers, now! And will be for as long as it takes. If you need me, I am here for you. May God bless you with peace, and may He bless your Mom with His loving arms around her.

    • #12
    • March 13, 2018 at 11:59 am
    • 2 likes
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    Susan McDaniel Post author

    @jamesgawron Thank you and God bless you. It goes with the territory to question whether or not you could have done things better; if you could have stepped up the care; if there was more you could have done. Love always wants to do more. God gives us the purpose and He gives us everything we need. Thank you for your kindness – it means more than you know.

    • #13
    • March 13, 2018 at 12:04 pm
    • 1 like
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    Susan McDaniel Post author

    @phenry Your words go directly to my heart. You understand! Your love for your wife, your mother and her mother is abundant; what an awesome blessing for all of you to share. When others seem apathetic, it is frustrating, but in the end what you are doing is worth every bit of it. G_d bless you! A million times over… G_d bless you!

    • #14
    • March 13, 2018 at 12:09 pm
    • 2 likes
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    Susan McDaniel Post author

    @pugshot No words. You have no idea just how much your encouragement means. People like you give me hope. God bless you and thank you (*enter huge HUG here*)

    • #15
    • March 13, 2018 at 12:11 pm
    • 1 like
  16. Member

    Pugshot (View Comment):
    Hey, Ricochetti – how about getting on board and giving @susanmcdaniel a little GoFundMe love? If we all kicked in just a little, we could give her a big boost pretty quickly!

    is there a link or something for your go fund me?

    • #16
    • March 13, 2018 at 12:22 pm
    • 2 likes
  17. Member

    God Bless you, @susanmcdaniel. I am almost 50, and am very blessed that both my parents are alive and doing well-my Dad is 93, and my Mom is 85. The prospect of life without them becomes more terrifying with each day-I am praying, selfishly, for another 20 years with them. If anyone can do it, they can. I see them almost every day, and usually spend 3 or 4 hours helping with various things, but considering their ages, they really don’t need that much help.

    We often need the people we care for far more than they need us. I spent a few years helping to care for an elderly aunt; she was in a lot of pain from arthritis, and couldn’t take strong pain killers anymore because she had taken them for so long they had messed up her digestive system. She would often talk about wanting to die, and I would very selfishly tell her that she couldn’t die, because I needed her; she was one of very few people in our very large family besides my parents who really seemed to care about me. It got to the point, where about a month before she died, she kicked me out of her hospital room. There was no reason at that time to believe she was going to die, but I think she knew, and I think she was trying to help me in the only way she knew how. After many years of being in pain, she died very unexpectedly and peacefully in her sleep. I miss her terribly. I am praying for you.

    • #17
    • March 13, 2018 at 12:23 pm
    • 3 likes
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    Susan McDaniel Post author

    @judithanncampbell You and your parents are awesome! How blessed you are to have each other. Your Aunt, also, was very blessed to have you, and you, her. Mom and I talked often about Heaven and the great mysteries that await us. About 10 days before she went Home, she said, “I am not going until Jesus calls me, but when He calls I am definitely going.” Knowing where she is is a great comfort – it doesn’t dull the ache, but it does give hope. God bless you and your wonderful parents. Thank you for your kindness.

    • #18
    • March 13, 2018 at 12:39 pm
    • 1 like
  19. Member

    PHenry

    Pugshot (View Comment):
    Hey, Ricochetti – how about getting on board and giving @susanmcdaniel a little GoFundMe love? If we all kicked in just a little, we could give her a big boost pretty quickly!

    is there a link or something for your go fund me?

    I just went to the GoFundMe page and did a search for Susan McDaniel (search bar is right at the top of the page). About 12 different Susan McDaniels popped up, but @susanmcdaniel was the first one – her site had the image of praying hands.

    http://www.gofundme.com

    • #19
    • March 13, 2018 at 12:41 pm
    • 5 likes
  20. Coolidge
    Susan McDaniel Post author

    @phenry I am not sure if it is appropriate to post the link here. But, if you go to GoFundMe the campaign is titled ‘Caretaker Help’ by Susan McDaniel.

    Also, thank you and God bless you.

    • #20
    • March 13, 2018 at 12:41 pm
    • 3 likes
  21. Coolidge
    Susan McDaniel Post author

    You people are making me cry! It is good, though, because they are tears of absolute joy. The hope you are giving me right now is beyond description. I only hope that I may be able to give some back to all of you.

    • #21
    • March 13, 2018 at 12:43 pm
    • 3 likes
  22. Member

    Susan McDaniel (View Comment):
    @phenry I am not sure if it is appropriate to post the link here. But, if you go to GoFundMe the campaign is titled ‘Caretaker Help’ by Susan McDaniel.

    Also, thank you and God bless you.

    Found it! thanks.

    • #22
    • March 13, 2018 at 12:54 pm
    • 2 likes
  23. Member

    I prefer not to go into all the details, but our oldest son was a live-in caretaker for my parents, and one of my sisters was a nearby caretaker who handled a lot of the daily details. Our son’s problems didn’t start with the caregiving, but that job grew gradually more difficult, especially when he was on call 24×7, and the rest of his life was going nowhere. My parents (his grandparents) both died two years ago. He has been living with us since then. He always had a good sense of humor and I enjoy having him around the house for mealtime conversation, but my wife and I were both concerned about where this was going. Since late last summer there has been a big change. He is energetic, helpful, keeps to a normal schedule, and is gainfully employed in a job that suits him well and has a future. It’s a remarkable difference from where he was just a year ago. Some things we have done may have made a difference, and he has had some therapy along the way, but there are probably a variety of factors that helped turn him around.

    Anyway, I was telling my sister about the change and how he’s doing, and she remarked that maybe it just takes two years. She herself found herself getting back to normal at about the same time.

    So I will be interested to know if it takes two years for you, too.

    • #23
    • March 13, 2018 at 12:55 pm
    • 3 likes
  24. Coolidge
    Susan McDaniel Post author

    @thereticulator That is interesting! Each day is growth toward new purpose and new life, but in the midst of grief, it isn’t always easy to see what is taking place. Mom went Home just 2 months ago, and each day brings its own; some good, some not. I can honestly say that today is the first time my tears are not to mourn her, but to rejoice in those God has sent to lift me up. Progress comes in bits and pieces. God bless you for raising such a wonderful son.

    • #24
    • March 13, 2018 at 1:00 pm
    • 2 likes
  25. Coolidge
    Susan McDaniel Post author

    If any of you are interested, I just created a group – Caretakers

    I listed it as private. It will be a place to share mutual experiences, growth, understanding and encouragement. We are in this together.

    • #25
    • March 13, 2018 at 1:30 pm
    • 3 likes
  26. Coolidge

    Susan McDaniel (View Comment):
    @frontseatcat Mom and I enjoyed our church time through the internet and radio. My pastor posts his teachings online, so we were able to worship at home (this church is 30 miles away). There was no outside help with Mom, because my sister is also a caretaker (her husband is in advanced stages of Alzheimer’s), so she was/is unable to help. I live in an awesome neighborhood and my neighbors have all been very supportive. I still may lose my home, but am trying to find a way to avoid that. It is all in God’s capable hands. He takes care of me, and surrounds me with His Glory every day.

    Often the social service people in an individual county have the ability to connect you with a grief counselor. In many places, there are six weeks or ten weeks of either low cost or no cost grief counseling sessions available. Look in your phone book under county services and call the health and human services number.

    When you talk to someone there, see if there is local legal aide for seniors. Dealing with the legal aspects, as well as the emotional aspects, of saving your home can be overwhelming, and especially given the grief you are enduring, not at all easy to handle.

    If you do go to a legal help center, don’t take that lawyer’s word as the gospel. Being human, they are often wrong about things.

    When I was helping a relative somehow avoid eviction, I was so unhappy with the local legal aide guy that I called one of the top real estate attorneys in the San Francisco area. He counseled me for free, just because I happened to call late in the day when secretaries were gone and the two of us hit it off. between that lawyer, a local friend of ours who was also an attorney and information I gathered about the rental case, I helped this relative avoid eviction.

    • #26
    • March 13, 2018 at 1:42 pm
    • 4 likes
  27. Coolidge
    Susan McDaniel Post author

    @caroljoy Thank you!!! I do have some connections that I trust to help me. I have been greatly blessed. God bless you.

    • #27
    • March 13, 2018 at 3:19 pm
    • 2 likes
  28. Member

    PHenry (View Comment):
    So G-d bless you for your devotion to your mother and father, and thank G-d for people like you who know what responsibility is and do not shirk it. I pray that you find your path going forward now that you have completed this phase of life, and may it include the blessings you clearly deserve.

    Amen.

    • #28
    • March 13, 2018 at 4:06 pm
    • 1 like
  29. Member

    I was my grandma’s caretaker in the years before she passed. Since then, I have looked after other people with dementia or physical disabilities. Looking after my grandma was a piece of cake because we were so much alike and had family history, not to mention all the relatives who came by to visit or help. Taking care of strangers is wholly different. For me, it was incredibly taxing.

    Do professional caretakers have personal traits that enable them to maintain that dedication? Or is it just a job that must be done, so whoever needs the money desperately enough will do it? Could there ever be enough professional caretakers in a society without indissolvable family bonds?

    Repeating conversations and keeping an eye on stubborn but frail elders doesn’t bug me in the least. On the other hand, when a person in advanced senility is agitated and in pain but cannot describe what’s wrong, that’s an agonizing situation I hope never to experience again. Somebody must.

    • #29
    • March 13, 2018 at 5:36 pm
    • 6 likes
  30. Thatcher

    @susanmcdaniel God bless you for the love you’ve been able to share with your Mom. It is never easy. It is especially difficult, as you say, to explain to friends why you can’t just go out on a whim. My wife and I, while our dear daughter was with us, were there virtually 24/7. The concept of a date night was non-existent.

    • #30
    • March 13, 2018 at 5:38 pm
    • 4 likes
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