growingTree Asked November 2009

Why is it that as caregivers we feel so alone at times when we are always with the person we're caring for?

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Fernando, I think many of us can relate to your thoughts about feeling alone. And for good reason.

We are doing things we've never had to do before, often solo, and no one really understands who hasn't been there. Even spouses or siblings, who may/may not share in the caregiving, don't experience as we do, and view it from a different perspective. Long distance siblings and friends and family aren't able to share our concerns or burdens, except peripherally. No amount of conversation can bridge the gap entirely.

I think of our loved ones, who must feel a variety of emotions, while losing their spouse or independence, or suddenly being cared for by a friend or family member when they can no longer adequately care for themselves. How can we communicate our mixed emotions, grief over the losses, and separate perspectives? It must feel just as lonely to them, even though they are with us every day. They are losing the abilities to care for themselves, and cannot share that experience with those of us who have entered into the realm of caregiver, sometimes by default.

Each of us, in our own way, experience lonliness. A son or daughter who has to make decisions they never imagined, often against the desires and wishes of siblings, and sometimes against a cognitively declining loved one. And even when we think we have their best interests at heart, sometimes our ideas collide with those of others, including the one we are caring for. Often there are no clear cut answers, and each situation is different. Who can guide us? Yes, it definitely does feel lonely at times.

Those of us here on this site are reaching out for answers and comraderie. We may understand another, in part, but each person and situation is different, just as in every facet of life. We ultimately are alone, to think, feel, and experience. But there is one who knows, sees and understands all, and is our hope. Humans and emotions may fail us, but there is one who once also felt lonely, who can now guide and comfort us. We don't have to be lonely if we have faith in the one who truly sees and understands. Our help is only a prayer away. I hope this helps. Just know, it may feel lonely, but you are not alone, and someone is praying for you. Take care!
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I have always been a firm believer in the saying, "Wherever you go, there you are." Who we are and how we are as individuals will always shine through no matter where we are or what the circumstance. So whether we move across the country or join a group or gather with friends once a week or never leave the house for a month -how we choose to act, react, and be - especially when no one is watching - is our true character. Lots of people feel alone and lonely - people who are married with a house full of kids, people who socialize a lot, people who are in a crowded room - so we are not alone in that feeling. People who are not caregivers feel alone. If you are married, do you feel like you are giving up a life of singledom and missing out? If you choose to be single, do you feel like you are not living a full life because you are not married? Why do so many caregivers feel like there is a life "outside there" somewhere - when we do have lives? Is "having a life" only defined as being able to venture to the store when we want? I don't think the grass is greener on the other side, I think it just sometimes appears that way. Our life is right now, in this moment. And it's a wonderful life. We are making a difference. We are making life better for someone else. When I feel alone and lonely and sad or confused I try to imagine the challenges and the difficulties and the feelings the people we are caring for must feel - how THEIR lives have changed - how they must feel so unable to do whatever they want, when they want - how alone they must feel having to wait for someone to bring them food, their medications, change them, reposition them, transfer them out of bed, bathe them. Know what I mean? If I put myself in someone else's shoes, in the person's shoes that I am caring for, as always - it makes me kinder, more patient, more loving. I have never known anyone that has never felt alone or misunderstood or lonely. I think that is part of human nature. It's ok to feel alone for a moment. It doesn't define you. It's like when people say, "I had a bad day." I always wonder, was it really an entirely bad day? or a few hours or a few minutes of day that weren't so great? Before you became a caregiver, did you ever feel alone at times? I know I have. I also know that I am exactly where I want to be and where I am supposed to be. With God at the helm, I know storms will pass and the sun will come out in the morning.
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ginger123 Nov 2009
Caregiving is very lonely. This website is good for you because everyone who is here knows more about your feelings than your closest friend or relative. They are in the trenchs with you. You can be in a room full of people but you feel alone and you will soon be alone because everyone of them can walk out the door and go on with their lives. You can't! Stay with us here, you will learn a lot, cry a lot, laugh a lot and most importantly live a little for a little time each day. There are some wonderful, caring people to talk to when you need them!
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growingTree Nov 2009
I agree with that statement that friends don't know, and i am seeing that there are many in the trenches with me, and we fight a fight, of choice, but like a boxer after all is said and done, we stand alone in the ring fighting a fight for our love ones, so they can get a better life, and we do this by giving our life in exchange, I'm not going anywhere the selfless people that i have read about have impressed me to no end, and your honesty is so heart felt that i would be stupid to go. They are heavy weights here, the strongest of strong, but with the softies hearts you can find. But we do fight, in that there is no doubt. I stand alone but in a battlefield of many and we all hold our ground as best we can, thank you ginger123 and may God Bless you and keep you strong and cool, and of course keep punching p.s. I am learning to live a little in between rounds growing stronger with each bout, and trying to keep the heart as soft as I can...see ya .
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growingTree Nov 2009
Thank you secretSister and Caregiver101 your understanding of the feelings that a care giver has humbles me, because it go's beyond me and shows me a place to better stand within my mindset, to see through your eyes gives me a better picture through mine. To see such faith shining through both your hearts is a privilege to me, that Blesses me beyond words. When i first found this site some one said that they believed that caregivers were angels in disguise, i know were not angels, but some are very good examples of what one should be like, your words were without doubt Holy Spirit let, so i thank Him as i thank you both. Sometimes one can forget that there is a bigger hand dealing the cards being dealt, and i to believe that i am exactly where i am suppose to be. because i trust Him, that has me here. I call that Faith in my heart, and it's an honor to see it in both your hearts. so thank you, and may His strength continue to keep you both and all our spirits strong in each of our journeys. For as you have said we each have different paths, but they all lead home.
God Bless. Fernando
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Caregiving can be the most glorious experience as well as the most isolating one. It is when you discover as much about yourself as the person you are trying to care for each day. I would suggest that you write to us frequently if you can. I have found several people that I may write to when I am at my lowest. This is also the time that I have found several hobbies and have worked on becoming better at them. I send out cards and letters to other people on a regular basis. Above all, I container garden just to see things change and grow. These interests do not have to be your interests, but find some. It truly helps. My mother helps me and has helped me with my knitting even though her hands shake too much to knit sometimes. My religious beliefs are very important to me and a daily help. I have friends that will stay with mother,if needed, while I go to one service and they go to another that is later. People want to help but need to be asked ,also. I wish you the very best and hope you will contact me. Rebecca
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kuli May 2012
John - I say the same thing, secretly wishing someone would care for me the way I cared for my dad. Yes, I was lonely. Yes, I was physically and mentally exhausted. Yes, I wanted to blow MY brains out many times. But now that dad is gone, I know the gift he gave me, I know the gift I gave him. I miss him terribly and yet am so thankful that I can finally rest and go on to live my own life. Had it not been for this site, I would have felt totally alone. But here I found those that understood, those that were awake the same hours as I, those that truly knew the challenges that are faced day to day, hour to hour, minute to minute when you're a caregiver. But I will tell you, growing, that now that I am on the other side, I don't regret one minute. In fact, I am so very glad that I was able to give my dad the one wish he had - to be in his own home. Hang in there. Hang out here. There are alot of wonderful people here that will become your best friends. Hugs to you, Kuli
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I recently read the following on a calendar:

You can give without loving, but you can not love without giving. We love, therefore we give.
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You know, I think care givers feel alone because they often are alone. So many of us take care of parents or loved ones who don't relate to the world we live in. After a while we don't relate to the world we use to live in. It's not a part of our lives any more. We just keep taking care and we become more isolated.

Our parents/loved ones don't seem to understand what we give up to care for them and it's not like we want them to feel they are a huge burden to us, but sometimes we wonder if they consider what their lives would be like if we were not there for them. Sometimes we wonder if they realize what we are missing in our lives in order to take care of them. Many of them just seem to take it for granted that we will always do for them.

Many of us have husbands, children and grandchildren. We love these people and their connection with life, but we can't tend to them and that part of our life they represent because our time is so limited.

There is nothing spontaneous about a care giver's life. Your grown child can't call and say, "Hey, you and dad want to meet us for dinner tonight." I mean, yes they can call, but you can't go and, of course, they know that. Taking a trip to visit family, your grandchildren who you love, is like planning a trip to Europe. It's takes a lot of planning and it's expensive.

Yes, what we do is good, but it is lonely. We miss out on a lot of life and sometimes we can't make up for the time we spent care giving because we or our spouse become ill.

I'm not knocking being a care giver. I'm just offering an answer to the question that was posted.

My heart and best regards go out to all who care for loved ones. Cattails.
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lildeb Jun 2012
I have to admit that I feel sometimes that, I am a prisoner in my own house. I take a low dose of anti-depressant med but that is due to either several health issues or because it runs in our family or both. I take care of my mother-n-law (mnl) going only for 9 months n I get somewhat help from the hubby. Did I say, somewhat? ; 0
Through this board I have a lot of friends n found out I am not alone yet, we still have r own situations. I learn also here that a good book to read about AD n Dementia is called,"The 36-Hour Day," by Nancy Mace n Peter Rabins. This book has helped me understand n how to deal with situation n how to just let go n don't let it bother you. Respite care is a plus if you are able to afford the help so that you can get a break n be able to just breathe for a few hours. Their is an agency that has help me with several local resources in my area. It is, "Area Agency on Aging." If you go to this website, www.seniorslist.com and type in your zipcode it should locate a agency near your location. Through this Area Agency on Aging, we now have the mnl going to a local church for about 4hrs once a wk for respite care. This will help give the mnl activities to do n to meet new friends n we will get a small break. The respite care is not free n not sure if Medicade will cover? If you have any relatives that u can 'trust,' n they live nearby, maybe u can get a couple of hrs break. Through these resources it has helped me somewhat feel less depressed n I am able to better give the care the mnl needs, sometimes. No one is perfect for we sometimes learn as we go for everyone situation is different. Hope this help everyone a little.
Hang in their n if you need to vent then vent away for it helps reduce stress as well.
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