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I have a lot support and still feel very alone!! I love my husband very much and know his illness isn't his fault. Our sons, their families and our church family are very supportive but I am feeling like my whole life is consumed with his illness. Trying to pray, lean on God and others but it's just so hard....not sure anyone understands how I feel.

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Loneliness is a huge issues for caregivers. I'm caring for someone with serious lung issues now and I understand the drain on the caregiver. It's horrible to watch the suffering your loved on must endure but as you all say, the world passes caregivers by.

Whether we are running between several people or concentrating on one, we never get a break. It's easy to say take time for yourself, but very hard to do. There is no easy answer for any of us but there is support right here on agingcare.
Carol
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Oh, but we do understand, and we are here to support you too. Caregivers need medical care too, and time off to rest. A weekend away would do you wonders. Get one.
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My heart goes out to you! I cared for my paralyzed, ventilator dependent husband for four years at the end of his life. We had been married for 35 years. I can only validate that it is exhausting and you are in a state of grief. You have lost your partner of a lifetime and your life has changed in ways you can never imagine. Be as good to yourself as you can be. I spent so much time believing that I didn't have the right to be tired, angry and lonely. Your feelings are valid. You have a need to be cared for just as much as your spouse does. I'm glad to know you have family and church family, which leads me to believe you have faith to lean on as well. I wish there was an easy answer, but the only answer I had for myself was "the only way through is through." See if there is a local support group. If not, get with a grief counselor, or some type of counselor who can help you and validate you. I let myself burn out by not taking care of myself, by being so sad and burdened by my husband's condition and my inability to meet all his needs that at the very end I just couldn't care any more. I am very sad about that, but am working my way through understanding that my needs were just as valid as his. I am struggling for words here. It is as if you have been widowed without being widowed. I had to learn to go places by myself, form friendships that didn't involve my husband as he couldn't leave the home for the last 2 years of his life. I couldn't meet all his needs, and the harder I tried the guiltier I felt. So if I could tell you one thing it is this: let go of the guilt, find ways to nurture yourself....do the things that give you the most joy...and let down the burden of caregiving as much as you can. In the times when you are away from him and his needs, allow yourself to relax. My best escape was to go to a local pool several times a week and do water exercises, then sit in the whirlpool. So be gentle with yourself, acknowledge your sadness at the loss of the partnership you had, do what you can and leave the rest in God's hands as best you can. You will get through this. Hugs and prayers coming your way from one who has walked through this herself.
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Oh, yes. You have a packed house here of people who understand what you're feeling and what you're going through. Not exactly how you planned to spend your retirement, is it? Or your "golden years"?

I hope you have some friends to lean on . . . to unload on . . . to go to dinner with, etc. You are entitled to as much life as you can squeeze in. If you allow it, his illness will consume YOU.

Keep reaching out. Plan shopping trips. Go to a movie with friends. Dinner. Have them over to your house if you have the energy. Keep your husband as involved as you possibly can; but when/if he can't? You must take care of you.
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We are here for you. You will be surprised to find out how many are in the same boat you are in. Married 42 years. You're probably in your 60's Retirement isn't what you expected. I'm sure you expected more freedom and less hassle. You feel eaten up by COPD even though it's your hubby, not you. But as his spouse, you probably wish you could take this on yourself. We become very maternal when our husband becomes ill. Try to imagine if you didn't have the support from sons, family and church family. I say this so maybe you can count your blessings. When I get to feeling overwhelmed, I try to think of others less fortunate. Works every time. You need some time to yourself. Does husband need someone with him 24/7? Call some girlfriends for a lunch date; go to the library; attend a lecture; get a pedicure; go to the park for a walk; enjoy the fall leaves. Look for a support group. Someone to talk to often helps. Get going. You can do this.
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After reading your question, I am wondering who needs the help! Please understand, I am very aware of caregiver's mental, physical and social exhaustion. However, you have family and lots of friends...many caregivers have no one! If you have "lots of support" as stated, love your husband and still feel overwhelmed, I'm not seeing the entire picture here. There are countless of caregivers that have no family, no support and no one to turn to...count your blessings. During my lifetime I have seen caregivers destroying their lives because the healthcare field is so focused on the dementia patient, the person caring for that patient is ignored and overlooked. There comes a time when the caregiver can no longer recognize their own needs from the constant day-in-day-out absorption caring for another. Statistics overwhelmingly show the caregiver usually dies before the patient. Why? Because there is a lot of blah, blah, blah, out there, but really...for most part depression, loneliness, reaching out is seldom addressed until the circumstances become dire. Please be exceedingly grateful to have all those family and church members to help you. However, being totally honest, if you are overwhelmed with all the support you fortunately have, please stop and think for one minute and discern what your life would be like if you were alone caring for your spouse, as many caregivers are. In one word. I would be "grateful." Exceedingly grateful. God bless you.
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I cared for my husband for over 35 years following an auto accident that left him with permanent brain damage. He passed away in 2012, and I had time for reflection in the year following his death. While I was in the caregiving role, I often felt alone and believed that life was passing me by. Looking back I realized that life was NOT passing me by -- this was MY LIFE. I believe that God was with me the whole time and knew exactly what I was going through. I also believe that I am blessed for doing the best I could. I started a Care for the Caregiver class at my church and like to compare our caregiving journey to a maze vs. a labyrinth. Our perception of which one we're in can make a huge difference in how we feel. One can get "lost" in the maze, experiencing fear, frustration, loneliness, etc. If you imagine your life's journey as one in a labyrinth, with God guiding you, a huge weight will be lifted from your shoulders. You still won't be able to see what's around the next bend, but just knowing that God is with you will alleviate a lot of the fear, anxiety, and loneliness. I also believe that caregivers receive a special blessing for their loving and nurturing spirit. You'll develop a closer relationship with God as you walk the labyrinth, and this itself is a blessing! I hope this didn't sound "preachy" but I felt compelled to share this with you as this perspective has helped many others who have participated in my classes. God bless you on your journey!
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Niloga, I fully understand where you are coming from, believe me! I have been caring for my husband with dementia for a number of years now. (Who knows just when it begins). I read comments from others who are taking care of parents (I did that, too, with my mother, but not 24 hrs. a day). Somehow it is just a larger burden with a spouse, for you are at it 24 hrs./7da. week with no rest. In addition to caring for my husband, I have had to pick up all the chores that he once did. Just this morning I had to add windshield washer fluid in the car (which isn't a big job) which is something I never had to do before. This is just a very small example. I just sent a letter of (hopefully) encouragement to my dear friend whose husband is bedfast and an invalid for the past nearly 2 yrs. I can have compassion for her since I am strapped to my house as well, you might say. Both you and I must find a way to put our husband's under the temporary care of another individual while we get some much needed rest. I have not been able to find a way to do this and none of the suggestions I have seen help me. They only tell me what I already know - you MUST do it! I, too, ask God for strength, ideas and peace daily, but we still need some REST.

People talk about classes - well, I have no time or opportunity to take classes. My husband say NOW, that all I do it run. The reality of it is: I get our groceries - one bag at a time - and I try to keep my fitness in check. The remainder of running is to the doctor (for him) and very occasionally a trip to one of our two son's. That's becoming nearly impossible as he never wants to go - doesn't want to go anywhere.

Yes, I do understand your situation and your frustration. I'm afraid to ask God for patience, for in the past it has made things worse. (Just kidding). I do ask that I could be a kinder person, but, believe me, there are those times when I feel less than a Christian.

May God bless you and my hugs to you as well!

Campy
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Yes, others understand and care. Yes, it's normal to be lonely and overwhelmed at times, and these are not bad things. It really is ok to surrender to your feelings once in a while, see what lessons you can learn from this part of your journey with him and make peace with how his illness doesn't meet with your expectations.
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I and most all of us here understand your feelings, Niloga. That feeling of not having a life of your own and not really seeing the daylight at the end of the tunnel. Even when you do have some support to be able to leave the situation for a few hours or even a weekend away, you can still feel that your life is 'on hold' and you long to simply be yourself again. I think we all deal with our situations a little differently. We all feel the stress and even depression and anxiety at times, but some of us can handle it better than others. I suppose we all have to find what works for each of us. But do try to think outside the box and find what might relieve some of the pressure. And NO one should try to tell you you should be grateful for the support you do have and realize that it could be worse.
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