What do I do when I feel alone in caregiving?

Topaz,

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

Hi Fancicoffee,

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

Hi Sharon,

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

Don't let what he says get to you. As caregivers we are the ones who get the anger that our love ones have. We there. We become the punching bag. My mother who is 92 now still has moments when she may say things to me. I choose to smile and say I love you. Love yourself. Your beautyful own it! Say it! We have to find ways to just smile thru it all. We are caregivers and we rule!

I had my husband tell me something bad this morning but I didn't let it get to me. I hate it when an ill feeling sadness comes over me because of another's words they said to me. This is so important: don't dwell on it, don't think about it because the more you think about it the more the hurt stays with you and the hurt continues. You don't want that. Please force yourself to go forward and think about the upcoming days work. Please continue to be on this board and tell more of your story. I am sure there are more people who can give you uplifting input!

I am 55 years old in Dec. I will be 56. My husband says I look bad. I am a nurse and work very hard on the job and at home. He hurt me so very bad by his harsh words. What do I do.

We have moved, and I love it out here. We live in Texas and I am going back to work now. He is going to Jan Werner and it is great! It is nice to go back to work and see my buddies! So far, my husband is improving and doing very good! I had looked over these boards and just don't see much activity. I know that I hadn't gotten any responses in along time. I, personally, love communities and forums because if you don't get out, or can't, this is a way to still be able to talk to others who are going through the same thing. Caregiving. How are you doing, MLC? And Steph, how are you? I really miss hearing from you guys.

I forget who said they had to retire to be a caregiver early, but I started another post because I became fearfully aware of my finances and our financial situation. I hope you look it over, because if I have to eat cheaper, which some of us already are doing, or make adjustments to do this, it is worth even consideration! Please check it out. I am dreadfully afraid of investing because I am really afraid of stocks and the market is totally foreign to me. But, education on this subject will enable us financially! If money makes you sit up and take notice and want to do whatever it takes to survive, then this will make you do the same thing!

Steph,
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.

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.

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

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 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.

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'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.

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!!!!!

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

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!

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