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wifecaregiver posted:
I`m really glad to find this sometimes I feel like I`m in alone with my husband .I wonder if anyone really does care because he is a quadriplegic.it seems after his accident only 2 of his friends come around to visit and only 1 of mine.Our boys come over but they have lives of there own.I know it`s hard to do everthing but it gets even harder feeling so alone having to do this.Sorry to sound so whinnie,I guess I`m a little down tonite.
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Andie_WebMD_Staff responded:
Hi Wifecaregiver,

I'm so glad you found us too! Don't worry about sounding whiny or sad, this is a big job you have taken on and it's normal to have moments where you feel a bit depressed or lonely.

It's important to remember to take care of yourself to: eat right, go to you own doctor appointments, stay active, enjoy some social time, and express your feelings when down. Don't neglect yourself. Keep your own well full so you have plenty of water to give to your husband when he needs it.

This is a great article that just takes a couple minutes to read, but really provides some solid advice: Reducing The Stress of Caregiving.

Please come back and share with us how you're feeling and how things are turning out. Good luck!
 
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missknitter responded:
I understand about feeling alone. My husband of 57 years has a severe case of COPD that was diagnosed 10 years ago. I am allowed to start the antibiotic prescription and then call the Dr. I went to talk with his Dr. last week and said that I sometimes don't see how he can survive any more complications. He has had MRSA in his lungs 4 times, and also a collapsed lung. His Dr. told me that he doesn't understand how some people live as long as they do and agreed with me that "he's tough". I have one daughter living in our town who lives a busy life but somehow manages to come when I need her. I have good friends at my church who are long on talk and short on action...but at least they talk with me. I still feel alone, I took the depression test and I'm depressed. This won't get better...I don't want to walk this road but I have to do it. I manage to get some time out every few days but I don't leave him for more than about 3 hours. I have things to mentally escape into but I still feel trapped. This is beginning to affect my IBS/constipation problems but I have found that with watching my diet, taking enough fiber and drinking lots of water, it has improved some. Try to find some things that make you feel good for a while. Take care of yourself even if it is just a special cup of coffee from McDonalds.
 
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wifecaregiver replied to missknitter's response:
Dear missknitter,I`m glad I`m not alone sometimes,but it is hard,I`ve suffered off and on for years with depression,so I`m there now. But sometimes I really feel it`s harder on my Husband cause it`s only his body that doesn`t work,his mind is still good.But every time I try to do something all I here is honey,honey.It`s driving me nuts sometimes.I really need to find something to keep his mind busy,especially in the evening.But I hope your husband does well,it`s been a really bad month and half for us.My husband`s step father died last month and his mother is 91 and unable to take care of herself,so it`s been up to my husband`s brother and nephew to take care of her and everything else.He feels so helpless sometimes.Which makes it harder on me,but thank god for our best friends.May God watch over us.
 
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pjncr replied to wifecaregiver's response:
Dear wifegiver,Believe me, you are not alone. I am sincerely praying for you and your husband. No one knows the position of a full time caregiver, unless they are one. Depression is something I also struggle with constantly and family and friends don't want to deal with this if they don't have to God is always watching over you, may He give you peace and wisdom.
 
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wifecaregiver replied to pjncr's response:
Thank-You for your prayers I sometimes think God has a wicked sense of humor.He sure does some off the wall unexpected things.But I still hope he keeps giving me strength.I think he gave me our 4yr.old granddaughter for relief,she has not known her grandfather any other way.She makes sure he has his water bottle,even tonite when we were getting ready to eat she put his food bib on him,and one evening she even got a chair up close to feed grandpa some cheesey bread,so she is a doll full of love.So god does work in some humor.
 
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missknitter replied to wifecaregiver's response:
Dear Wifecaregiver....yes, God does provide humor in desparate times. We've had several visits from a great grand-daughter, age 2 & a half, over the past 2 days. She is very talkative, kissed the dog a few times, colored pictures, and brought some fun to our lives for a while. I hope you have email buddies who send you things to laugh at....I have some who are good for a laugh every few days. God also provides sunshine, blue skies, and flowers to cheer us. I learned when my dad died a few years back that it helps if you can find something good in every day. I still have down times and feel alone. I have found that reaching out to others in a volunteer situation can be helpful. This is all easier for me to say than to do it. I look back and know these things helped me when my dad died but now I am facing that with my husband and it's not the same. We just have to keep trying to be positive and keep some other interests or small things in our life.
 
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pjncr replied to wifecaregiver's response:
There is no joy greater joy then a little one. I call my youngest grandaughter my stress relief. It has deeply saddened me the last few weeks because my husband has turned angry and I don't want to expose her to that. She is way too perceptive, and I don't really understand how very ill people don't want to show more love to their loved ones instead of less. So I had to make the desision to keep her away for awhile. The Dr. says this is common to be angry at the ones that are staying behind, but its a hard pill to swallow. I stand on the fact that God will never put more on us then we can bear. And someday we will know the reason for everying and what He has taught us. Blessings to you
 
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pjncr replied to missknitter's response:
How do we manage to do that when it becomes so difficult to even leave our home for a few hours? I'm in quit a spot , because my husband can no longer make responsible decisions, and is on heavy meds and also oxygen. Feeling alone is a huge part of the problem, and there is no good solution if I don't want the children to be in the line of fire with his anger. So its a fine line.
 
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missknitter replied to pjncr's response:
We're in a tough spot. My husband is also on meds & oxygen and somehow manages to hide his depression and remains cheerful. I leave for a few hours fairly regularly. I don't think our children and friends realize how incredibly tired we are. I have a day trip planned for mid June and probably will cancel it. My husband had been going 4 weeks between doses of antibiotic...this time he went 3 weeks and 1 day when I had to start it. The Dr. says "keep him out of the hospital". I know that if I take him, one of the first things they will do is a sputum test that takes 2 days...it will come back MRSA and thats' a different treatment. We have a living will that I take with me every time he is admitted to the hospital. I know I'm not much help to you or anyone else but just to let this all out helps me. We all have our own problems to deal with. I ask Him for strength one day at a time...
 
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pjncr replied to missknitter's response:
oh my gosh, I also keep a power of attorney and a health care directive in my purse at all times, and have done so for five years. It becmes dealing with one moment at a time instead of one day. Our lives can change at any moment, but as with other people we are constantly seeing it. Being dependable for any other people is no longer an option. You sound like your doing everything you can do, as I am. Too bad we don't get paid nurses wages. God will bless us someday, even though today we feel so alone. I would like to talk to you more later.
 
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wifecaregiver replied to pjncr's response:
To both pjncr and missknitter`s, I also have a power of attorney for my husband,with his spinal cord injury it causes spasms and sometimes they are so painful for him.but there is always the threat of pneumonia because he can`t cough that well,also urinary tract infections which can cause something called autonomic dysreflexia which can cause stroke or death ,so I keep watch on his blood pressure. SO I think we really need to give ourselfs a well desearved pat on the back.We Love our Men enough to do what it takes.So I`m glad we can talk here and get this off our chest,besides we are worth as much money as doctors,even nurses couldn`t do what we do,the things I know from taking care of my husband I nevered figured I would be doing. I am really glad to be able to talk to someone about this ,thank you both for your commets and insights.
 
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pjncr replied to wifecaregiver's response:
Thank you so much for your encouragement. Its very important to hear from someone who really knows what we are going through. There are very few groups to personally attend, and none around me. Just put one foot in front of the other and do the best you can at that moment. Thats the best way I can describe it. And the solution of losing your husband is no solution at all, just a different kind of stress and grief. Your post really lifted me up tonight, thank you so much. My prayers are with you and your husband.
 
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missknitter replied to pjncr's response:
Thanks to the both of you for responding. Some days are not too bad and others...well I won't describe it. I am learning to manage the maintenance and repair on our house. I have a neighbor who does good work so that helps. A couple of guys from my church came and helped with another problem I have outside. It's just the day in, day out stuff that doesn't go away, you know it won't get better and when you look down the road there's no relief. I have tried other groups and all I could find was an alzheimers' group and I didn't relate to that. I have to find something good in every day, even if it's just that the sun shines. I am a piano teacher with students in a competition tomorrow and then the spring recital on Sunday. These things keep me sane but sometimes its' hard to keep my personal life from interfering. I am so glad that I found you..we have different things to deal with but some of the same heartaches.
 
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wifecaregiver replied to missknitter's response:
God where has the time gone this week .this morning he woke up not feeling to good,was running a slight fever and has been sleeping most of the day.Also it`s been a dreary month here in Oregon either cold and rainy or stormy. This is about the time of year for thunder storms.Funny thing is earlier this month we had snow.So it would be no surprise if he did come down with a cold.But if he doesn`t seem better by later tonite I will have to get him to the doctor.What a way to spend the weekend,seems like one thing after another.Oh well I guess we keep on plugging away every day.Just another day,same old story.Hope you two had a decent week .KEEP THE FAITH!! LOVE YA!


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