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.
What you say is so true. What's the saying, familiarity breeds contempt!!! As caregivers, we know that firsthand. It seems that one of the reasons they take out their frustrations on us is, one, we are the closest to them and they feel secure in knowing that we will be there for them no matter what. But there does come a point when you need at least a break or you will break yourself, because we all have feelings. But to even encourage yourself, like you said, smile and say, I love you, helps as well. Have a good day. MLC
It's been a long time. I actually had put this message board on the back burner because so much has been going on for me but when an email came a couple of days ago notifiying me of a response, I looked into it and am glad I did. Thank you for your encouragement b/c I know things are not easy for you as well.
Yes, hurtful words can definitely go to the very core of who you are. I experienced that many times from my aunt who never said an unkind word to me in my life. It was shocking and distressing and difficult to deal with at first but as I became more knowledgeable about dementia and how it affects the brain and was finally able to reach out and talk with others instead of keeping it all to myself, I learned it is part of the disease and it changes people's personalities. The best answer is to know that it is not really the person that you have always loved doing this b/c if they knew they were saying such things they would be as hurt as you are, but it is part of the dementia that is not totally understood. I am just thankful that I finally found an assisted living faciilty for her that is acceptable. They take wonderful care of her and love her so I know she is in good hands. If this place had not become available, we both probably would have ended up either in the hopt or a mental ward or something. I was losing my mind, although I continually prayed and the Lord did answer, as He always does.
So just know that through pray and faith, you are not alone, and I know you know that because you have shared it at previous times. Have a blessed day. MLC
I wrote a little something to you the other day but apparently it didn't get posted. It's been a long time since looking at these message boards but they are so helpful. It's a place to vent but it's also a place to share your heartaches with others who are going through similar situations. It's just wonderful to know you are not alone. So if you want to expand a little bit as to what your situation is there will be someone to give you encouragement.
When I first looked into this message board I had been a full-time caregiver for my aunt for going on 3 years, 24/7, and it got to the point where I thought I was losing my mind. She is now in an assisted living facility, which makes it much better for both of us, although she doesn't quite understand why she can't come home but we just go a day at a time. I still see her frequently. Good luck, though, and feel free to share. You never know what resources might be available to help. MLC
I know that I needed help with relatives, and I would hint around that I wasn't getting any help and that it was really difficult. I just can not just come out and say can you come up and help out. However, I did, once ask if they could come up and sit with him just any time would be great. I just have a hard time asking for help. I guess I might feel that I am imposing on them, even if they do live out of state and some just live in another town. But, I did press onward and do what I could with what I had and things are looking better. I did check into medicaid, medicare, and Jan Werner. It is sounding really promising for Jan Werner. It is an adult day care center in Texas. They will watch him, feed him, give him medicine, furnish him VitaLife, and just really great to know they exist! We will hear from them this week. I sure hope they accept him. I learned with medicaid, I would have to pay for the 1st 30 days and then they would help. And I just couldn't afford that! Anyway, thanks alot for your help. I will hang in there.
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.
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
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 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!!!!!
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