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I have been a caregiver for my wife for 5 years. She was diagnosed with scleroderma. I love my wife and I am glad that I can take care of her and love her. I am tired and losing energy. I try to stay as busy as possible so I don't have to think about what if. I never knew you could grieve for someone that is still alive. My wife is pain 24/7. I feel so bad for her. I feel helpless and it brakes my heart. I use to have so much energy and now I am tired. I never thought I would say that I am depressed but I am. I fear that I will find my wife dead. If I can not deal with it now how am I ever going to deal with it when she is gone. I am physically, mentally, emotionlly exausted. My health is being affected. Everytime I go to church, I just cry. I have never felt so many different types of emotions. How do I deal with all of this and where do I start?

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Oops I forgot to look at the date 2008!!! You'd think I'd know better by now...
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IS4031 You are a women's dream.. Your wife is lucky to have you, I'm sure she knows that!

Don't be afraid or guilty to find help for yourself.. Reach out to local sources.. Make time for yourself.. You'll be a better caregiver to your wife, without feeling overwhelmed..
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My mom has dementia and is now in a facility. My sister and I struggle everyday if we are doing the right thing. My sister recently took her in for a couple of days and now realizes she cannot care for her. The problem is my sister thinks I do not care but I have been there 100 percent. I cannot take my Mom in as I have realized I cannot do it and have gone to support groups to get through this. I am there for Mom whenever she needs to go to appointments or anything happens I am the first one to be called. I am hurt by what my sister said and feel it just pushes us apart. What do I say to my sister?
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You are a hero. Can you get respite care. Maybe a sister or parent could take over for a few days. Getting away and reconnecting with who you are works miracles
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Dear IS4031,
I totally understand how you feel, as the other posters do above. I took care of both Mom and Dad for over 2 and a half years and it was the most difficult job physically and emotionally that I ever had--and everyone who has done this say the exact same thing. The plethora of emotions that you feel are totally normal and sometimes I know you may feel like you're losing your mind. The conflicting emotions of total and unconditional love, guilt, mental and physical fatigue, etc...will wear you down . First, you must take care of your self. If you do not, you cannot take care of your wife. And most importantly, you cannot do this alone. You need assistance. No one CG can do it by themselves no matter how strong they think they are. I am super happy that you are going to church. Give all of your hurts, anxieties, pains, worries, everything to the Lord. You cannot control what happens to your wife, only the Lord can. He may not change the situation you are in, but He can change YOU. He can, thru his strength, power, love and infinate understanding can bless you with the mental and physical strength to get you thru this. Trust Him, ask Him, beseech Him for help and He will answer your prayers. He see's and carries your tears in His bottle and He loves you and your wife more than you know.
"Lean not on your own understanding, but thru prayer, supplication, with thanksgiving, make your requests known to God, and the Peace of God, which surpasses all human understanding will guard your hearts and minds in Christ Jesus.
God bless you, may the Lord make His face to shine upon you, may the Lord bless you with His peace IS4031.
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IS4031

I'm sorry for what you're going through. My ex-husband had scleroderma. It was 20 yrs from the time he was diagnosed until he died. He went blind, and it went into his esophagus, then down into his digestive system. We were not married when all this happened, but were still very close because of the kids, and I was with him just before he died. It is a horrible disease. You and your wife have my sympathies.

As all the others here have suggested, I would recommend medication for depression - it really does help. You have a large load to carry, and the medication can help make it a little easier to bear.

I am currently caregiver for my 82 year old mother. She is mentally alert most of the time, but in a lot of pain and wasting away. It is difficult to deal with as well. I have a wonderful husband who helps me cope, though. That, and anti-depressant medications help me get through each day. This forum has been a godsend as well. Just knowing that I can get on here and read about other people's situations is a big help. Sometimes it helps knowing that others are in the same situation you are.
Hope this helps just a little bit.
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I am a new Caregiver 2-1/2 months. My mother who now lives with me has mid stage Alzheimer's and Chronic pain. She needs more than I can give her while working full time. She is going to fight hard when I tell her she needs in-home care. How do I approach her?
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IS4031
I hear your call for help in what you are saying. I speak from having gone to the brink of a breakdown from spending all my time on caring for my special loved one. I woke up one day and realized if I did not do something for myself, I would be unable to cope and both of us would be helpless.
What comes to mind is what the flight attendant on an airline says when demonstrating the drop down oxygen masks in case of emergency:
"First put your mask on so you can breath. Only then put on the masks of your companion."
Perhaps it is time to "put your mask on" and find a way to get rest or help. It isn't easy putting your needs first, but think of what the airline stewardess says and put on your "oxygen" first so then you will be able to deal with your beloved's situation.
My heart reaches out to you in your hour of need.
Stillsongs
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IS4031, your feelings are perfectly normal because you love your wife and have been faced with a serious, life-altering event. There are no words to describe the pain, the feelings of isolation and the fears of "what-if." This may not make any sense, but if you allow yourself to go through the range of emotions, with time, it is possible to arrive at a place of greater peace and acceptance, if only because continuously try to reconcile our pain with the reality of what we face in our individual caregiving journeys. When you are exhausted, be sure to slow down and rest; when you are feeling most vulnerable, remember that you are not alone in your feelings. May God bless you and your wife.
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My father cared for my mother the same loving way; she has alzheimer's. He passed 4 yrs ago. I now (the only child with no spouse or children) took over caring for her. She cries constantly throughout the day for no reason. It is not easy and I feel you. Please hang in there and I will pray for you and please pray for me. I can't attend church any longer because its hard to get my mom out. Church services give you strenght and courage to go on a few more days.
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Thank you for all your comments. Finally I have found a place where people really know how I feel. I read other comments posted and I am like "Wow, I can really relate and they understand". Thank you for thoughts, advice, and prayers.
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IS4031, you are not alone and yes we who are walking the same paths but under different circumstances, understand and most know of your suffering. It's like watching a loved one die a slow and agonizing death and changing before our very own eyes and we caregivers feel so very helpless and ache and grieve for the one we care so much about.

We do understand your stress and weakness through this transition and I, like many others, offer you the power of uplifting prayers for strength, peace of mind and spirit as well as HEALTH for yourself.

This community can be a wonderful tool for you to keep expressing your anxiety and fears during this time as well as your own church in which to release your emotions, which is a very good thing at times.

Keep coming back here whenever you are in need. It truly does help to not feel so alone. We are listening.
Blessings to you and may you find peace with every step you take.
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I am so sorry you are going through this right now. My husband had a serious heart attack four years ago, and now has been put on the transplant list. I have the same fear as you...finding him passed away in his sleep. We have only been married ten years, and he is the love of my life. I also care for my mom, who is recovering from a mild stroke. I own a small business that I just opened last year. Between these three things, and a family that doesn't do a lot to help, it can get overwhelming. Please don't feel as if you are alone. Even though I don't know you, I am sending you my love and my prayers. I am not overly religious, but I do believe there is a higher power that leads us in the way we should go. I have put all my difficulties in the hands of this power, and it has helped. You can't do anything to change what is happening to your beautiful wife any more than I can help what has happened to my husband and my mom. You can just love her while she is here, and believe that the universe will look after you both. Please take care of yourself. You are a person that needs rest, love and care as well as a person who is physically ill. Please know that I care, and I will continue to think of you.
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I just read about you and your wife. Obviously you are doing everything you can do for your dearest. Fatigue is expected..that is part of what makes you human. Scleraderma is a viscious disease and it has no mercy. I, too, am a caregiver for my 34 year old daughter who was diagnosed with cancer in October. Be kind to yourself..I agree with the other writer...get some meds and get some counseling. Counseling is sometimes misunderstood. You are not only grieving the loss of your wife's health, but also the loss of the future happiness together. Watching suffering is a nightmare. A therapist (counselor) doesn't "fix" you. What they do is show you the tools you already have, but don't know, and how to benefit from them. You take care of yourself, and you are taking care of your wife. Namaste
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IS4031, welcome to this group. I feel for you and the pain, Taking care of yourself must be first, please don;t ignore the feelings inside. keep posting, others are listening.
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IS4031 You have already started by asking for help. Many will tell you this is a wonderful, caring and supportive group. First let me say, I am so sorry your wife is so ill. Second, I want to tell you how honored I am to hear about a man so dedicated to his wife.It must be agonizing to watch and not be able to do much to alleviate her pain. Next, you also have to take care of yourself. If you recognize you are depressed( which is very common for caregivers) go to the Dr. and get started on medication. Grief is exhausting, along with your other duties and hence the "tired" feeling. We can not think straight, do our responsibilities, and cope with day to day things if we are depressed. Medication will not change your situation, but it will help you to cope better. It is ok to cry, and yes it is possible to grieve someone still with us. You are also grieving your life together. You will be in my prayers and please continue to post and let us know how things are going. Many will reply to you and give you support during your difficult , and at times, impossible situation. Their are grief counselors also, try contacting one or a group in your area. The load is not so heavy when shared. Keep us informed.
God Bless.
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