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I am taking care of my fifty-three year old husband who suffered a terrible stroke and I stopped working to take care of him. I took care of my father for tweleve years prior to my husband having his stroke. I am tired, and most days frightened. I guess I believed being a girl there would be someone to take care of me, how strange things have turned out. I trust God will help me, but I feel very hopeless. I love my husband dearly, but life seems very hopeless.

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IS thank you for the information I will check it out. He had a good night last night and I got nearly a full nights rest it was a gift from GOD I hope I get again soon . Good luck and I will be back on line in a day or so.
Eddi
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Hi rainbow Painter, love your name am working on a website for my painting to do something I so love and make a few extra $$.

yes, I think we are all a work in progress and finding peace is the key. If you are at peace you can do anything For example, someone here sent my boss a letter with lies in it, see I work at a IT helpdesk, which is stress in itself. But I am very good at what I do and I really am sensitive and hate when people lie and put their ignorance off on someone else especially me so I need all the Peace I can get. I work hard at finding it to and I am a peace maker have been since I was a small child. I thank you all for being here to vent to, sometimes when I respond I gleam some new info myself and that is good. Also, no one is condeming or judgemental because we are all in the same boat. Do you know how good that feels? Yep

Thank you all for being here and I hope each of us has a good New Year regardless of circumstances or what happens. After all we are still us.

neon
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Hi neonwocky,

No, you don't have "bats in the belfry" and yes, you've come to the realization that at times such as this for those of us who have "switched roles" in life, that it is imperative that we not LOOSE ourselves. Which is why it is also necessary for caregivers to "give unto themselves" and find their rest and peace of mind in order to be a better caregiver.

No, it's not an easy role or task to do and for me, it's a constant tug at my heartstrings. It's taken me a long time to ASK for help, and then accept that help, because then I have to LET GO so I can find my own peace of mind and rebuild my strength. I'm still learning and I'm work in progress.
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I am reading all your posts and just had an epiphany!!

We need to seperate ourselves which is extremely hard from child to caregiver at least that is what I am thinking perhaps I have bats in the belfry by If we can manage that perhaps it won't be so stressful. What would I do for a person I didn't know (LEAVE) no seriously Thats something I need to think about. neon
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max13, I am so blessed to have this site as well too, as you said, "save my sanity". It really does help to come to this place and not feel so all alone and defeated in our efforts in being a caregiver to a love one. I've found solace, compassion and wealth of information in my days of turmoil and emptiness. I'm glad you found solace here as well. Also, if you need, you may also private message those that have posted just to keep in touch when you don't want to speak of the topics. Keep in touch and may God continue to bless you in comfort and strength along your way.
Rainbow Painter
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To everyone who has posted or read this site -
I have sat here at the computer since 5:00 am reading thru all the posts on this thread...couldn't sleep. I must say, finding this site has saved my sanity. The first post I made was about 2 weeks ago, and just venting the stress to people who understand was a relief. No-one condemmed me for my feelings and the more I read the more relaxed I become. I have gone from wanting to jump in front of a moving truck, to, I am so thankful and there are some things I just have no power over. If anyone new reads this, keep reading posts on this site. The information is empowering and you will always find something or someone you can relate to your own circumstances. I no longer feel alone and isolated in my plight. Nothing lasts forever and neither will Mom. The only thing I can do is what I think is right morally and ethically. If my family doesn't want to help, they have to live with that, not me (something I learned here). I am where I am suppose to be in Gods eyes and to me thats what counts at this moment. Bless you all for giving me some strength.
Kimberly
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You're not complaining, Eddi. You are human and you have a lot on your hands.

IS had some good advice. I'd check with your state aging services as well as your county social services. If you have an Area Agency on Aging (gov. program) they can help (Aging Services can tell you that). Someone at these places should be able to point you to resources in your area.
Carol
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Eddi. It depends on where you live. My wife gets In Home supportive services (IHSS). She gets 245 hours a mounth at $8.10 an hour. The max is 290. There are a lot of services out there. Call the county you live in. The program is a county program with state funds as well. I wish you well.
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My husband fell and injured his neck. He has lost almost all control of his hands, needs a walker in the house and a wheel chair out. He is unable to dress himself, bath himself. or even open a soda can. He had surgery and is, I hope, healing where the nerve will no longer be compromised and the feeling will return. He can't be left alone for other than a few minutes at a time. It's like having a 160lb toddler so consequently I can't work. Does anyone know of any financial resources? I hate to complain when I read how others seem to have worse issues than I do because he has been very gentle with me and so concerned about me but frustrated because he can't do anything but I don't know where to turn.
Eddi
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Always remember that you are not alone in your situations and find comfort in expressing your fears and anxiety with this wonderful community of friends. We've all either been there, done that or still finding our way through our journey of helping others, but know that you have people here who can help by just listening......all you have to do is type it out. It's such a release that it's amazing, for me anyway.
Blessings to all who come searching and needing comfort.
Rainbow Painter
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Writing out how you feel is therapeutic, as you can tell from the numbers of people chiming in on this forum. Please keep coming back. You are under a lot of stress, and it's hard not to let it show.

It's wonderful that you are working on your LPN. You are fortunate to have your background in this field to help you in your personal struggles.
Carol
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I understand how you feel. Just since thanksgiven my husband had 2 heart attacks, the first one they just done a stint placement but after he had the second one within 2 weeks of the placement they did a double bypass. With all this going on I am also a full time student tryn to get my LPN done after working 20 yrs as an nurse aide. NOw with this going on, school is my only break from him regarding cares. He getting better but he rather have me give him his medications then try to figure that part out, he has troubles with his short memory span so that one reason. Working as a nurse really has helped me handel some issuse that we had to face but the stress of care I really never thought would get to me but it does. I try not to let him see it but I know he can tell. Tryen to get some help but not see it happen, this state here really don't like to help people unless they are minority which to me really bad. Well enough on that. For me I blog or write in my journal on how I feel and how to deal with issues.

me in small town nebraska
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Gee Girls, I feel so blessed, my husband is still himself most of the time and My mom is so afraid I will know her business not knowing if I don't I won't be able tohelp her. so far she has settled down and insisted she was having a good christmas I know the worst is yet to come but I am prepared, I do have a network of good people to confide in My church family and my work family. I meditate a lot and go to my bible classes and they are helping right now we are studying Proverbs. sluggards and deceit and it so applies to my life right now but I have to be careful that I don't take those things and use them against my mother as she is both of those things and always has been, I just let her know I know better. I agree they are scared and are fearful as they are losing control especially when they were control freaks to begin with. Mine is all about the mail? something may come I'm not supposed to see, I remember way back when I was writing a boyfriend in vietnam and she used to get the mail, natch because I was working and read the letters and thru them away I finally had to have him send them to my job. Wierd wasn't it sad to I wouldn't do that to my child anyway. Everyone hang in there and know you aren't alone we are all in it with you just different names and faces. Sad we are supposed to be superior to the animal kingdom yet I see cats and dogs with more compassion than some humans.

Take time for yourself hot bath, walk, window shopping anything where you can get away for a few min. I am supposed to be getting ready for a small gathering tonight for the church instead I am on the computer until Mother gets up thats my down time. Love and hugs to all just take them arms of yours and hug yourself, close your eyes and know God is hugging you. Just stay still and get inside yourself for a few min I know that sounds stupid but it works, Let your father hold you neon
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miak, keep your sense of humor going. My sense of humor helps me to cope with things that are beyond my control, and I must say that it is a rare day when I can't find something to laugh about in life, be it my own, my local environment or something somewhere in the universe. I refuse to take myself too seriously. In fairness to your sister, a good nurse learns to have a certain degree of detachment because he or she has seen so much in terms of illeneses, pain and suffering, so she may be keeping her guard up when it comes to your Dad in much the same manner she would a patient on her nursing unit. Eventually, she will have to deal with her feelings, too, because in the end feelings need to be dealt with. Feelings do not just evaporate. You sound like you are compassionate toward your Dad. May God bless you.
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Daddysgirl, I feel your pain. Sometimes are situations seem so helpless but remember God holds the blue prints to your life and your husband. You can only do so much and then you just have to give the rest to the Lord. I pray that the Lord will give you strength in health. Lord, I ask you to take this fear way that I so many times feel and replace it with peace. Father, I ask that my sister in Christ will have so many doors opened for her and that she will get some help. Remember , It might not seem like you have someone to take care of you but your Father in Heaven is and will continue if you allow him to. Hang in there and be of good cheer. Michael
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Yes, it makes sense. You aren't losing your love for him, but you are so tired of doing it all. You are human.
Carol
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Sounds rough. I think that you are doing great to have cared for your husband this much and devoted yourself to his care. I must work. this is what scares me the most~~losing my love for him because it's taking so much out of me to care. Does that mnake any sense?
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Hello Daddy'sgirl...My heart goes out to you and I can understand what you are going through....I took care of my husband for 2 years as he was slowly losing his battle with cancer. I also had to endure my share of verbal abuse but I tried to remember that it was the effect of the drugs and his illness that made him this way and towards the end of his illness when I thought I couldn't handle one more day I prayed to God to please do just that....give me one more day of strenghth and courage to do what needed to be done. Most nights I would just collapse on the sofa with my clothes still on and immediatly fall asleep till morning, get up , shower and start all over again......He passed away on our 39th wedding anniversary........By that time I was already into another caretaker role for my mom ( see "Needng to Vent")........Please hang in there and know that others care about and will be praying for you.......Jan
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My post did not go through I mainly wanted to say do not try to be too independant if someome ask what they can do do not say nothing= ask them to call once a week- many people do not want to bother you while you sit there wanting to talk to someone. My friends know I want to be independent but our Church send us food and it was a blessing for me. I have decided I need to do things like dishes-laundry- bills and most of house neat and the husband cared for instead of stressing about Christmas preparation- Christmas cards will be done as able. I am going to make anappointment with spnail specialist to see if I can get some relief from the pain-short of surgery.
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Take care, Miak. Sometimes you have to just detach from it all, and it sounds like you don't have much choice but to ignore your sister's comments. It's hard. Keep coming back and talking.
Carol
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hello every one , hope every one is having a quite day. I talked to my sister (the nurse) of 35 years i havent talked to her in a month about our dad I told her about his dilusions and about him peeing on the roof i said i was afraid he would fall offf well its more like a porch which is the ceiling to my bedroom, she said "OH WELL" i said i would feel very quilty if that happened that im the one whos lives with him and is taking careof him she said well there is only so much you can do. OH MY GOD now i know my dad was a very bad person but still he is human. what can you do with a person like that and she the one in charge of everthing poa all that stuff on his bank statements. wow blows my mind i use to nat be able to stand my dad but since his damentia is getting worse in the last few weeks he has been nice to me he even thanked me for getting his paper said it means alot to him. wow he really has dementia bad 2 months ago i was a dirty spic. it my sister that is crazy maybe there all crazy. I feel like an orange living among apples. my other sisters son had a baby they called her after the baby was born. now i know why i always felt different growing up im so glad im ADOPTED . I once had a bad thought, i was a product of one of my fathers affairs. i know with out a doubt that if that where true i would really kill my self no joke. that would truly be the worst day ion my life. Good thing my bio brothers rember our mother and father and me being born. even though i was born in a mental hospital. which totally cracks me up .makes so good humor. if any one has ideas on how to deal with my sister please let me know or maybe i should just forget about it and worry about some thing that make a difference. care to all miak
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I talked to everyone in her circle of nurses, doctors and home health to let them all know what is going on. The common "guess" is that the cancer has now spread to the brain. We are due for a pet scan and mri on the 17th. Not getting the results until after Christmas, let me rephrase, not giving her the results until after Christmas. She seems fine this morning. A little sick, some therapist came in with a cold on Tuesday and she "thinks" that is what is wrong with her now. She called the pharmacy herself and asked them to call her doctor to get something for it. Thank God they called me because Mother is already thanking antibodics for a kidney infection. I am telling you it never stops. It does help to vent and to learn from you all. Thanks so much and God Bless.
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Those falls are awful. My mother had a wrist alarm and lived in her own apartment for several years. I was getting calls all the time from the dispatcher (at night). Finally, we had to move her to a nursing home, as she wasn't safe at home.

Falls often do come from weakness (chemo) or other medications that can be adjusted. Let's hope they can help you with this.
Caroll
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Kdn- I sure hope you can get some relief- I know when things happen it seems to continue we had 12 falls in 10 days last year. Take care dear lady no matter how bad things get remember you have a friend in me
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Well, last night was another fun night. Bedtime was at 9, the first fall was at 11:30 and the second was at 3:30. We just stayed up from the 3:30 fall, no since in trying to sleep. I am going to call her oncologist and ask if this is a side effect of the chemo. And tell him what is going on. I have already called the nurse at her doctor and now I have to call the home health. Another day another round of calls to the medical providers.
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Thanks for sharing your caregiver story, norma. Your hands are full and it sounds like you and your husband roll with the punches. Not easy. In my world it seems like I am always doing laundry in addition to all of the other caregiving chores you describe. I have a couple of loads in the washer and dryer as I type this reply. It is therapeutic to see your comments on all of the unending chores. May God bless you, your Mom and your hisband.
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Hi everyone, I read all the comments/ questions. My mother also changed very drastically after my father passed away suddenly last year. They were married over 61 years, dad had just celebrated his 84th birthday when he passed. I too quit my job to care for both of my parents before he passed away. I moved in with mom right away because our house was not accomodating, we have stairs to bedrooms,for someone with arthritis in her spine, knees, and neck. She gets very nasty with me at times, and calls me names and tells me to get out and I do nothing for her. I do all the work, pay bills, take her to dr. appts. and for tests, take her for drives and sees to it that she is bathed every day, takes her meds. gets fed etc. My brother, who lives only 10 min. away does nothing, he goes on vacations, out to eat,movies and being around his two kids and three grandchildren. I have three kids and 7 grandchildren I only get to see if they come here, which they do because it is hard to get mom in and out of the vehicle. My brother told me I am the one that volunteered to care for mom instead of putting her in a home when dad passed. I replied, She raised 4 children, one is him the other me. One brother passed away 23 years ago, the other lives in California. I have had only 2 full days with my husband since July of 2007. I am not complaining, but it would be nice if the brother would spend half as much time with mom and giving me a break as he does on his voluntering on organizations.
I found that if i joke with mom that helps at times. My husband and I bought mom a heater that represents the suns rays, she is alwaays cold.It is called Soleusair, it seems to be helping too, she is not so cantankerous with me, although she glares at my husband most time. Mom also swears when she gets mad, she NEVER swore before.
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Kim do not feel horrible that you were upset being woken up with your Mom's fall it is upsetting to be woken up at night esp. when you have busy so busy all day- when thet fall you know your are going to be up for hrs. getting things settled and will have trouble going back to sleep amd will have to get up soon to start all over again. That was the thing I hatted the most being woken up at night- he has been better about now about that. I am keeping Christmas as simple this year my new motto is good enough is good enough. It will be very hard for you and she probably will be more draining then usuall- I hope someone who has gone through it will be able to help you and I am sure that people telling you not to worry makes you want to scream. I hope I can at least help and encourage you during this time-take care dear lady.
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Sorry 195Austin, I have not responded to you. Its been another wild week. We only use one pharmacy and my husband and I are the only ones who can pick it up. The problem is her oncologist and her medical doctor do not check with one another when they write another script. Its driving me nuts. She fell again this morning at 2 am. She couldn't sleep so she was up cleaning out the closets. She was not yelling for us she was yelling for her husband, who passed away a month ago. I feel horrible that I am so mad at the world. I know if Mother could help it she would not be like this but she is so draining. I am sitting here thinking I need to do a thousand things when all I want to do it sleep. I know its harder on her than I realize and my poor husband is at his breaking point. The holidays only make it worse because Daddy so loved Christmas. Is there any hope? Kim
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I agree, lindam. It is important to be aware of one's boundaries as a caregiver. It makes us the best caregivers possible when we know that we need some time out. No need to argue, or have the last word
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