No i am not suicidal right now just very low and conflicted, but i am feeling desperate to talk with someone who understands from first hand experience. My Email in profile. Shoot. i cant believe this as I just wrote two paragraphs and lost them before I posted so this will be to the point.
Jan K wrote a couple posts one on June 16, 2010, which describe how i feel and i don't remember hearing anyone say those things exactly like that before. she posted a similar one on Aug 27 I believe. I've been thinking for several days on trying to contact her so i posted on the Valentine's day thread as that is where she last wrote. Anyone know if she is okay?
If any of you understand or especially feel what she was writing about on those dates and you are willing to talk about, please email me with your phone number or i will give you mine. I would have talked with my mother about these kinds of things but she died a few weeks ago.
I haven't posted except for a couple a few days go under the area for people who have placed their loved ones, but was here almost from beginning until 2011 when I just broke down for awhile. I have always wished I lived close to some of you as I know some of you have been able to meet and form non internet relationships. i met one person years go for dinner and spoke on the phone several times with another who has been so helpful in situations where I needed to act quickly and she had already been through the same thing so could explain it to me.
Anyway, i had no idea how bad i would feel if I didn't get to talk with Jan K relatively quickly plus today is difficult so talking with one of you would turn my day around.
So asking for human contact by email first then a phone call if you are willing.(omg, that sounded like a personals ad.) If you read Jan K's posts and are in disagreement, you might not want to talk with me right now as I really need to talk with someone with similar feelings.
Terry (anyone live in the SF Bay area? I have been 20 minutes south of Napa for 2 years.)
This is the post Terry is talking about, could not find the other one:
Jan K Jun 16th 2010 As year after year goes by, a little tiny voice inside me keeps getting louder and louder. It's saying "What about me? Don't I ever get to have my own life?" I feel horrible every time this happens. But the other day I remembered this famous quote: "We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable rights, that among these are life, liberty and the pursuit of happiness." Lately I feel like I have no life, no liberty and no right at all to pursue my own happiness. I really don't think the rest of that quote says "except for caregivers of people with dementia". But that's just about what it winds up turning into.
I think this thought is coming more frequently because since I started caregiving, major health issues have come up for me. I realize that if this goes on much longer, not only will I wind up with no quality of life later, I will wind up with no life at all, and no possibility of pursuing anything for myself at a later time. I really do love my husband—if I didn't, I wouldn't still be trying to do this all by myself, now well into the eighth year. But I look in the mirror and hardly recognize the haggard face looking back at me. Part of me really needs the hope that there can be more to life. But I need that "more" right now, not at some time in the distant, murky future when I might not even be alive to enjoy it.
Getting more "help" will not take care of this problem. What I need is about a solid month of sleep, and several more months of no responsibilities at all. Even placing my husband in a nursing home would not end all the responsibilities for his care and taking care of everything else. Right now I'm not sure even being in a coma would end all of my responsibilities. When I was wheeled into surgery a month ago, I was crying because I was so worried about my husband. You'd think at least when you were being wheeled into surgery you'd get a few minutes to worry about yourself!
Does there come a time when, no matter the condition of our spouse, we just absolutely can not do this any more? And how do you get over the feeling that, of course, you can do it just one more day, and then another, and then another……
Terry - as Jan K was told back then, if she is asking then it is a year past due.
Many of us are in that position Terry talks about of 'when do I count' or 'when do I get taken care of' or 'what about me' and other questions like that. My MIL cared for my FIL who had AD. She died suddenly in 2001 - he lived another 9 years. I do not want that to happen to me. I am trying to take care of me by going to the doctor. I am trying to loose weight - without any success.
Charlotte emailed me and told me she doesn 't thin people know how to search which is why no on except her has responded. I click SEARCH at top of message boards page. Then click ADVANCED SEARCH. This brings up 3 options. I only use two. If you want to read everything a person on the boards has written, go to DISCUSSION COMMENT SEARCH. in the FIND COMMENTS CONTAINING I just use. The space bar to put in a blank space. Leave all categories as is. Then WHERE THE AUTHOR WAS I PUT the name of the person whose comments I'd like to red, usually. T learn a bit more about their situation if I am not familiar with them or to catch up on a situation with them I may have missed part of. Hit ENTER and it will bring up all their comments,
If you are only interested in topics they have actually started themselves do the same thing but in the topic area above the comments area.
Terry, we all feel this way at times during our caregiving journey because as I said in my other post this disease and caregiving can suck the life right out of you.
I am certainly not living the life I had planned and when I am very tired after a long, stress filled day I am sometimes resentful. We live in a virtual prison, have no privacy and right now there's no end in sight.
Although my feelings are different than yours, I absolutely can understand how you feel and the feelings of desperation and "when is it my turn?" I can offer suggestions and advice but I don't think that would be helpful for you right now...you need someone who shares your feelings and can totally commiserate with you.
I am sorry no one has responded to your cry for help...perhaps their feelings are too raw to discuss or perhaps they fear if they begin the discussion there's no turning back.
In any case, I want you to know I am sorry you are feeling this way and offer my support and compassion.
Terry, I know you’ve been dealing with this for so many years, and it’s no wonder you feel desperate and exhausted. I’m glad that others have responded to you. I find I have very little to offer, and I’m sorry. It’s as if my well has been emptied. I think it is as LFL says, many of us can’t afford to go back to those raw feelings. It was too terrifying at the time, and we’re trying to forget it and get on with out lives. I found the greatest help was to go to a stress counselor – and I still go once a month – because we all need to talk to a real live human being. They are trained to give us relief. I urge you to do this. These are professional people who care for our well being and are a resource to be used.
Terry - My hubby was placed in October and, speaking for myself, I made myself move on and get a life! and I am getting into a good place. Considering his physical health he could live for another 20 years! I sure am not going to wallow in guilt and sadness or stay in limbo for all those years.
So what am I trying to say is look into placement and get yourself back....there is nothing you can do that will change the out come of this disease......it's time.
Yes, there does come a time when we can no longer go the caregiving all alone. My husband had several health issues and the running to and from doctors for and with him was the routine. When there was a week without some appointment, I hardly knew what to do with myself....There was always so much to do and so much more was left undone as his health issues continued to increase his decline. I did hire some in home health help for 6 months..then my husband died of cardiac arrest. However, before that, I was fast coming to the realization that either I had to find a way to have more in home help OR placement. I had gone on tours of all the facilities and was in a real fix as most of them but one were " no poke" which meant I would have had to hire a private nurse or go myself to do the blood sugar tests and set out his insulin. You sound so desperate right now and you do need to find help or consider placement. Others who have faced and had to place can help you more than I. I can just reassure you that we all sooner or later get to the end of the line where we can do this alone. For your own physical and mental health please talk to your doctor for recommendations on who can help you. I have come to understand that those who have had to place their LO have had a chance to get some of their life back and to get used to being in the home alone. I used to think if I had to place my husband, I would do this and that to get the house orderly again. That included sorting out his clothes, keeping only what was useful etc..Now I can't even bring myself to face his closet...his things are where they were when I took him to the hospital for the last time. He was not expected to die when he did...I didn't face the end stages of AD for which I know I am blessed but I also was not prepared for his sudden death when it happened.
* a post script to all who are still in the caregiving role, don't wait to check out funeral homes. It is sort of a gorey Idea but I was not prepared and when my husband died suddenly I had to then go "shopping" and it was beyond stressful..He " wasn't that bad" so I thought ,wrongly.
Terry, I do understand where you are right now. I am having anxiety attacks for the past week. I have had to go to the doctor. I wonder if and when this is over if I will have the strength to have a life. I have contacted our LTC insurance and am going to get help for DH. My problem is what do I do with myself while someone is in the house taking care o him. I am going to go once a week and help with my grandson. My daughter is afraid that is going from one caregiving to another. But I do not feel stressed spending time with my grandson. I have to make changes now or I will not have a life after this. I do feel guilty and selfish when I do things for myself. But it is a matter of life and death for me if I don't. It is hard to take one day at a time and not look to the future. So I am going to start looking forward to my future and give myself a life. I have been dealing with this for 9 years. That is a long time.
This week was when I realized that my DH's family expects me to give him the best of me. And I have. They have no regard for my well being. I was very stressed, really lost it. My sister was taking me to urgent care. My mom called and asked his mom to pick him up for me. My mom had helped me for 3 days. We stayed at their house because our power was out from ice storm. His mom said she had a hair appointment and was reading the paper and had not had breakfast yet. My mom gave her what for and came to sit with my DH. They want to give advice and cause problems but do not want to help. Wish I could sit and read the paper and eat breakfast.
I do know how you feel. All of us have on and off. I just have to make changes. They say here sooner than later. Take their advice. It just slams you all of a sudden if you don't.
The best for you and your loved one is to take care of yourself. And that means when you have to place I get help, you do it.
Terry, I know exactly where you are coming from.. I feel exactly lie you do. I realized a few weeks ago that some changes need to be made. I cannot continue with my DH much longer. I put his name on a waiting lst at assisted living. I'm expecting a call anytime. I'm not sure I can go thru with it ,but well see. I have two voices in my head. One is saying, Dee you have got to take care of yourself, this is really too much! He really doesn't even realize who I am. He responds better to others better than me, especially bathing,. Dee, you aren't getting any younger, if you are going to enjoy some of your golden yrs now is the time. The other is saying, He needs me. Can you really put him there with strangers? Think about how much that is going to cost! You can do it a little longer! So we will see which voice wins in a few months wen they call me. And of course, even then if I choose to place him , my job hasn't ended. But some of the physical burden will be lifted.
Jackiem29, I posted a long message on another thread to you so I won't repeat it here. I think if you can spend time with your grandson and have some fun with him by all means schedule time for this. Maybe an hour away some days for a coffee break and bagel with a friend once a week if you can leave your DH alone or get someone to stay with him for an hour. And don't take on a guilt trip for this. 9 years of this hard work takes a toll. God bless your mom! There are many others who have had to deal with difficult family members of the LO who had the dementia disease and perhaps they can offer you support in how they coped with it. If your DH's family members cause you trouble, perhaps only an update on him now and then should be the only contact you have with them. For some peace of mind for yourself, if you have not interviewed assisted living or NHs perhaps you should do that just in case something does happen and you need to face placement. Blessings and Peace...
Amber, glad to hear you say that. i want to feel that way and am trying like heck to get there which is why I wanted to connect with Jan as i never heard anyone before sound so much like I feel.
I placed DH over 2 years ago. It was an emergency placement due to violence and aggression. His son offered to help with caregiving (but no more he said in Oct.) as I felt I couldn't handle it alone any more. Long pathetic story I posted about years ago. I flew DH and myself out to CA, got him into a wonderful place near his son (major feat itself) which I could only do because we have LTC. I flew back to our home, quickly took care of details at great cost to my financial and emotional future and after a breakdown of sorts I drove myself and our two Bichons across country (while receiving texts from his son asking when I was going to get here and phone calls from DH screaming) to a place where I knew no one at all and here I am.
I lost my soul mate pup a year ago and I never thought I could survive without her. But here I am still missing her every day. I never thought i could survive the loss of my mother either but she died a month ago and here I am. I am a very social person but making friends when you have depression is so hard but I made one close friend who has been a life saver and she told me last week she is moving out of the country soon.
My story is the same with different details as all of ours.