What do I do when I feel alone in caregiving?

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I am at home with a husband who had brain surgery (two aneurysms) and he has improved from not know who I was to remembering people again. I am happy that he can shower, shave, walk, get dressed alone and know his preferences. However, I feel alone when he won't answer me, or look at me when I am trying to get a response to my questions. My questions have to deal with dinner, does he want a hair cut, taking medicine, and the like. I feel ignored, alone in this and it is frustrating! When I ask him if he realizes he is ignoring me, he says I don't know, or shrugs his shoulders. Maybe I am sounding controling, but I am not used to this situation and maybe I have "cabin fever". I don't know. He used to be a "know it all" and now, he doesn't know. Please help.


Hi there,

Instead of asking your husband what he wants for dinner or if he's ready for a haircut, etc., have you tried saying, in a pleasant way, we're having whatever for dinner tonight. Is there anything else you'd like to go with it? Or something along those lines. Or, hey, it's time for a haircut, I'll make an appt for you if that's okay. I find in my own situation with my aunt that she doesn't answer a lot of times because she gets confused and doesn't really understand what I'm asking, so instead of giving choices it might be easier to just do something but in a pleasant way without making it sound like it's the only way to do things. Hope this helps. MLC
You were so right. I took your advice and said we were going to have chicken, what do you want:potatoes or dressing? And it worked. I also realize that he doesn't understand the questions like he used to. I can't go into detail at all. I remember to keep it simple. I am also looking into moving into an apartment where there is alot of help for the older folks, kind of like a small senior village thing and it is so affordable! They also allow pets, so I am thinking about getting a pet to entertain him and hopefully they will get along. I love dogs anyway. Thanks for all the advice. I do feel "stuck" in the house, so I reached out to a community where people could still give me some input on this particular topic. Thanks!
So glad the suggestions helped. What kind of senior village are you thinking of and where is it? Thanks. My biggest "problem" is there is no other family member to help out and things have gotten to the point where we have very few friends, and those we do have don't know our real situation. I'm to the point of exhaustion and dont' even have the energy to figure out what to do. Prayer is the only thing at this point. I retired from my job to care for my aunt and now it's to the point she can't be left alone, though she's able to get around. She's legally blind, though. It's a long drawn out thing but my tolerance level is zero and I cry a lot and we see very little eye to eye anymore. Don't know if anyone will see this but thanks. MLC
I know how you feel so well!!! My husband can't be left alone and I am running out of time and energy. I get mad, and just don't understand why he doesn't do as he is told. Plus, I am getting very little help. I am getting help from my daughter, and one friend who won't be living so close to us after we move about 18 minutes away! I went out and visited an organization called Jan Werner and they sound like that is going to be my help. We are going to have to be approved by the state first. Medicaid can't help until I pay for the first 30 days in a nursing home, and medicare can't help, so I looked at the VA since he is a veteran. There are very few out there that don't costs a lot of money and very few available people to help out. We do feel alone in this, but I read about Joseph in Genisis and the end is what helped me. Reading the Word has helped me, and if you can watch TV, watch the religious stations and read the Word. It is sad to say that this is our last place we seed help when it should be our first. We still have a rough road ahead, but we WILL make it. I and others are here to listen to you!!!!!
I'm sorry I didn't answer your question about the senior village, I went down town to find this senior village and found out it was in another town. Uhg! It was such a great price I couldn't believe that price for a great place would be in my city. Well, it was too good to be true. But, all was not lost. I prayed for God to lead me to the house He wanted us to have and He did just that. That afternoon, a relative took us to a place that had even a greater price and a nice home! I am so happy, we still have yet to put money into it, but it is ours! I guess I am trying to say, don't give up, go through your problems, don't forget you do have hope and reward for what you are doing! Frustrating moments don't last. I hope you will find someone to help you, you really need time to rest, don't forget your own needs. Take care of yourself! That is of utmost importance if you are going to fully be able to care for the one in need.
Hello Fancicoffee,

Thank you so much for taking the time to answer. What state are you in? We are in Florida at the present time but there's no reason we can't go elsewhere. It is so true about faith and reading the Bible. We went to church this evening and it was a very uplifting and encouraging message, which helps tremendously.

It's so true to take care of yourself but really where do you start when you're exhausted, you've tried and nothing works out and you're too tired to try anymore?The weird thing is, my aunt is so sociable when we are around others, has a wonderful time, it's all we go through to get out, though. because of her dementia and being legally blind she's unable to do much of anything for herself but really has no clue as to how much needs to be done. She is the dearest person to me and the thought of a nursing home is really out of the question but I know I need some kind of help. A friend of mine gave me a book today called 36 hours, which I just started reading tonight and so far it's very interesting. One problem is, though, I have very little time to myself except late at night. It's difficult to get up early but I still have to!!!

Well, enough about me right now. I do so hope things are better for you and your husband when you move to your new place. I'm glad the suggestions were a little helpful as far as fixing dinner, etc. At least you do have a daughter and hopefully some friends to share with. Trying to get someone in to help is not an easy task, not to mention the expense. Well, dear, thanks again. I'll be checking back. Good night.
I am so glad there are people here to talk to! I do little things for myself such as, making sure I get the creamer I like to go with my coffee in the morning. And while he naps, I get to read the book I like. Sometimes, in the morning, I will step outside for a little bit and look at the stars. I have found one in particular that interests me. I fix my yogurt a little special with chopped walnuts. Since no one comes around, and I can't get anyone to help, it does get lonely. I am a busy body type person and miss work terribly. I call and talk to my work buddies once in awhile. It's just little things like that I really treasure. My dream is to someday be able to get out and about again. But, that will be in the future. I love my time out with the ladies at the church and the ability to go to church. I really feel for you. Please take care of yourself, do little things for yourself and don't ignore your own health. I have gone to the site of webmd.com for my doctor. Try it.
Hi Fancicoffee,

So nice that you would take the time to comment. The book I have been reading, the 36-Hour Day, is quite informative and as I read along hopefully will be helpful. I too miss especially the structure of the workday and being with colleagues but this was a choice I made because she had no one else and definitely needs help. Fortunately, retirement was an option. Nursing homes seem so impersonal. They are so overworked, not enough staff and everyone needs care. We have good days/bad days and it may soon come to the place where we have to have someone else to come help. My few minutes alone are treasured, but mostly my prayer time, getting closer to the Lord because, really, when all is said and done that's what matters most, are you ready to meet Him?

Sure wish you and your husband well in your upcoming move -- or have you moved already? And I hope it makes life easier for you both. We just moved into a new home and the neighbors on both sides seem very nice. Hopefully we'll get to know them better over the next few months. Take care. God bless.

And yes, it is nice to have someone to "talk" with. I've been looking for ages for something somewhere and this is the first time in almost 2 years that I've come across a web site like this one. I hope to spend a little more time here and learn what they have to offer. Boy, when you're young and your whole life is in front of you, you never even think that this will happen one day. The Internet is such a wonderful blessing in so many ways. Hope to hear from you soon. THanks again. MLC
I feel your frustration. My husband got early onset Parkinsons at 42 and he is now 64. Being his caregiver i could write a book on the ups and downs of emotions i have been through. My one piece of advice is to continue to be the best caregiver you can but allow yourself some "me " time at least once a week. It took me a longtime to do this but what a relief to have a caregiver come in a couple days a week. Even ask a relative occassionally to be with your husband. People really want to help sometimes but don`t know if they should ask. Most of all don`t take anything personally that your husband does or doesn`t do. He may get better and he may not but know that you are doing the best you can. Hang in there
Hello MLC,
I live in Texas, I now realize I didn't answer that part of your question. It is so nice to have these boards! We have moved. We are in the country and the neighbors are quiet and nice so far. I did go to an organization to see if they could help me, Jan Werner, and we are going to hear this week. If they accept him, I can go back to work! I was afraid I was going to have to retire and just did not accept that thought. I have learned that I must not accept just any thought that enters my head. I told myself that I wasn't going to go there, that there was still something out there for us and prayed for it. It sounds like 36 hours is a good book. And you are enjoying reading it. You also sound very compassionate in the way that you are willing to retire and care for her. You are so sweet and loving! Stay in there and I will stay in touch.

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