Sue,

Can I ask you to just consider that you haven't given up, you certainly are not a loser nor a quitter, but Ray's condition has progressed beyond your ability to care safely for him or you. You are STILL his main caregiver. But as is true for anyone in any primary position, You have had to learn to delegate. YOU still are needed, are the primary decision makers for Ray's care but you are allowing those nurses and aides to help be your hands and eyes while you still give Ray what they can't...loving care. I am going to tell you, that has brought me as a survivor, further than any pill.

As for chat, are you feeling bad about losing your composure? Do you feel you lost respect by letting down your strong image? Just wondering. The fact is I don't know anyone here who wouldnt totally understand. I also think that the knowledge and experience you have as a caregiver won't change because your caregiving role has changed--you are learning a new level of caregiving and it will help you help others as you have done so many times. I think it should be up to you whether you step down...and should be only with your needs in mind. Because having you in any capacity is only our great blessing.

Oh yeah, how about "caregiver emeritus" or extraordinaire? Yeah! that's the ticket...

Warm hugs,

Jamie

Sue: I understand what you are saying so well. I went thru all the same feelings before Dale passed away. You put all my thoughts into words. Hang in there, as I know you will. The caregiving while Dale was in the nursing home was so different than being the hands on 24/7 caregiver the one in charge which was me for so long. I, too, thought a support group for that kind of caregiving would have been a good thing. Now I am just trying to find out who I am since I am no longer a caregiver. That is different from the grief I feel. I lost my husband and I lost my job. Where do I go from here? love to you. Shirley

I can answer your question, "should you give up chat host?" and the answer is "NO way!" We need you here when you can make it. If you need to step back and take a break to gather your thoughts and feelings, then take that break, but you are not a quitter. If you're feeling out of sorts with the current conversations in caregiver chat, then you are not alone. In the seven plus years I've been on here, I have more often than not felt like my issues were totally different than others here, and I was the "odd duck" in the room. With Gary having lost most of his functions from the very beginning, it wasn't always easy to get people to understand that I literally had to do everything for him but breathe, even though there were plenty of times I had to talk him through taking slow, deep breaths to keep from holding his breath and passing out. When I heard others talking about how their care recipient could do this or that (walking, talking, going to the bathroom on their own, feeding themselves, even making a simple meal, or working part-time), I wondered how it would be if Gary could only do one of those things on his own, but I never stopped coming back to chat to listen, to learn, and to maybe gain some support for the challenges that I currently face or may face on down the road.

Sarah

Sue:

as a survivor I learnt so much from your blogs I learnt what my hubby must be going through while being my caregiver & never complaining about anything. I learnt from your blogs what I can do to make our life's journey easier for both of us. So I feel even when your current problems are not similar to current caregivers we can all learn something from each other. I know I did. I feel your job as a caregiver now is more important one, since you are now his advocate in nursing home

Asha

Sue, I don't think you should give up being a chat host. Who else has the experience you have had to share with others. Your advice is always comforting and helpful. You say you enjoy being on chat so why not do things you enjoy. I agree with the above post that maybe you can now take some time for yourself more. As for your situation being different, all of us seem to have different situations. Who knows when one of us will be in your exact situation. Keep on doing good for your Ray and for us.

Julie

Well, Sue, it is rare that I am able to attend chat. But I was there and witnessed your "melt down" on Tuesday and believe me I understood what it was all about. I understand that limbo place where you are right now caregiver yet not a caregiver. I know that your own sense of who you are is shaken. And I have heard those sometimes silient sometimes loud NOOOOOOs that come everytime you think of Ray not being in the house. So share those feelings with us. I for one need to hear them. Not eveything has to be the "right answer" in order to be a support. And it is necessary for you to feel the being helped as well as being the helper. I never knew that Sarah felt like the "odd duck." I always felt like I was the one that didn't fit anywhere. Maybe this is the beginning of a new area of support that has been missing. In any case, you have a wonderful gift of communication as well as a long road of experience. Maybe your "melt down" was just another window opening.

Ruth

Sue

Take some time for you to get your head wrap around the new "normal". As Host you are the best and this site needs you and the sound advice that you give. I wish that I could have some good advice for you cause you always had some for me. Right now things are so out of whack for you that you don't know if you are coming or going. Take time to take a walk or work in you garden and think God will show you the way. You and Ray as always are in my prayers. :hug:

Sue:

I was rereading your blogs & comments on it & realized maybe you are ging through similar questions I went through after my stroke & loss of a job of "who am I" if not hands on caregiver then what's the point eh, I know I had gone through similar question after loss of my job & my identity along with it. Slowly I am learning & you will too, you are still Sue caregiver who loves her hubby Ray dearly & now taking care of him as hands off caregiver. you are still his loving wife, mother of wonderful children & grandmother of many. you are loved by many in real world & in virtual world. so hang on till you adjust to this new normal.

hugs,

Asha

Sue: I too was a bit taken back by your abrupt leaving of Chat and knew what it was about. I am trying to give you some space and not "push" because I know you are in a very difficult situation right now. I was so pleased Ruth had joined us, now that she is considering taking Dick home and her outlook is different as well.

You know you are grieving and there is no getting over that, must get through those stages. And yes, in helping us, you are reliving those times with Ray and that must be so painfu

I need all three of you. This is still so early for me and all of you come at problems from a very different angle, so lots of ideas and suggestions are offered and leads me, at least, to some real critical thinking and possibilities.

That being said, you need to do what is best for you. Maybe honey it is just a matter of time. This happened so fast in the light of stroke. When Ray first stroked you were able to adjust gradually. Ray went back to work and then the later strokes, when you had to finally leave work and Ray was homebound. But think about it, honey. I have only been a member here just about 2 years. When I first joined Ray was walking, his diabetes was under control, you all had your Lion's and Camp Breakaway. From a stroke perspective, Ray went downhill way too fast. 10 years of a slow, gradual decline and then bam, rock bottom. There is no way you can adjust to this quickly. Once again stroke beckons us in only to kick us in the stomach.

Take your time. We are with you whatever you decide and don't think you are losing us if you chose to open another chat. Any angle on this living with stroke is a benefit to all of us. And if it helps ease us, as caregivers and survivors, into a new, possible outcome; there is no downside.

Know I think of and pray for both of you and your family every day. Debbie

absolutly no sue you should not give up the job as chat host being a caregiver to ray you have such a vast and wisdom, of how best to care for your loved one and it will make your day even better by bring a little help and joy to the caregivers that will always need your help and your guidness, so no dont you give up the job as chat host