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Yes Cyn, we caregivers tend to think we are not that great - I recently read about the "caregiver burden", obviously we all feel like that at some point.
What personally makes me feel low sometimes is that many people only see me as a regular stay at home mom, and think I take care of the sweetpea exactly as I would anyway if she wasn't sick... Except that it's not the same thing at all. I can't take her anywhere but the hospital, we have to monitor visits, anything unusual and we have to rush her to the ER... etc. Not quite the same thing!
Yes Cyn, we caregivers tend to think we are not that great - I recently read about the "caregiver burden", obviously we all feel like that at some point.
What personally makes me feel low sometimes is that many people only see me as a regular stay at home mom, and think I take care of the sweetpea exactly as I would anyway if she wasn't sick... Except that it's not the same thing at all. I can't take her anywhere but the hospital, we have to monitor visits, anything unusual and we have to rush her to the ER... etc. Not quite the same thing!
Big hugs my Cyn.
Have a nice day y'all.
I don't know, seems to me that many people just aren't that intuitive about the burdens that other people face, or they're so wrapped up in themselves and their concerns that they just don't think about anything else. It's not personal and they mean no harm, it's just the way they are. That's no comfort, I know, but unfortunately it's the foibles of human nature, I guess.
I worked in a pediatric hematology/oncology clinic for a little over six years, and became familiar with the problems and issues faced by the children diagnosed with life threatening diseases and their families. The toll these issues often take on the families can be staggering, but I have to say I found the courage and determination they showed in facing the issues touching and inspiring. What I learned from the folks I met from working in that setting- the kids, their parents, and my coworkers- gave me a perspective on life that I don't think I could have ever found in other settings or experiences. I still think of them often and pray for them every day.
I saw my radiologist yesterday.....he agrees that I am doing super well. He asked me if I thought I had regained my energy and functioning post radiation......I said about 80%. After some discussion he said he thought I was describing the side effects of the hormone therapy.....and that it would persist as long as I stayed on that treatment regimen. (That should be for the next 3 months......so maybe then I will fully regain my "strength".
My guy has been calling Japanese resorts.....planning that we will be able to travel by the spring.... We used to go to Japan every May.....a lovely time to visit. His mother and family are doing well. I look forward to seeing those dear people again. There is one relative.....(his cousin's wife) who is very ill with Pancreatic Cancer.....I hope that we get to see her while we are over there. She and I are the only non Japanese members of the immediate family....she is Russian.
Thank you elston. I really do try to remind myself that I do my best but I think the wear and tear gets us all down sometimes and then we question ourselves.
The cramping DH gets is from muscles dieing.....when he tries to chew his food often times he will get these horrific muscle cramps in his neck and it is from his muscles trying to fight what is happening. His body is trying so hard not to give in to this disease but it takes it's toll.......
You're doing wonderfully, but being in the middle of it all, and being human, you won't see what a great job you are doing. You wouldn't be human if your situation didn't drag you down sometimes....what I admire about what I've seen from following your thread is your determination and your courage in picking yourself up and your "keep on keeping on" with the heavy burdens you've been dealt.
Sending good thoughts and prayers your way for both of you!
Sudcaro the saying "walk a mile in my shoes/moccasins" holds true today on so very many levels. People are ignorant of the daily tasks until they are faced with it. Yes they know you are there sitting at the hospital, doctor's office and even at home with your loved one but they have no vision of what you do.
Caregivers are selfless but they are human too need to vent, cry, sleep or just talk like everybody else. Only most wouldn't be able to do the caregiving at the level you can to your loved one. Seems there is no empathy much in our world day to day anymore. Then the ones of us that do know what y'all go through daily have broken hearts because we can't be there to help carry your load.
I'm glad all of you can get support here or any other Internet forum.
I saw my radiologist yesterday.....he agrees that I am doing super well. He asked me if I thought I had regained my energy and functioning post radiation......I said about 80%. After some discussion he said he thought I was describing the side effects of the hormone therapy.....and that it would persist as long as I stayed on that treatment regimen. (That should be for the next 3 months......so maybe then I will fully regain my "strength".
My guy has been calling Japanese resorts.....planning that we will be able to travel by the spring.... We used to go to Japan every May.....a lovely time to visit. His mother and family are doing well. I look forward to seeing those dear people again. There is one relative.....(his cousin's wife) who is very ill with Pancreatic Cancer.....I hope that we get to see her while we are over there. She and I are the only non Japanese members of the immediate family....she is Russian.
I hope you do get to see the relative with that dreadfull disease ( Pamcreatic Cancer )
My dad died from it and from time of diagnose to death was 43 days .
I hope you do get to see the relative with that dreadfull disease ( Pamcreatic Cancer )
My dad died from it and from time of diagnose to death was 43 days .
Teddy, I am so sorry for your loss of your father to Pancreatic Cancer. I thnk they are doing better managing this horrible disease now. Our relative was first diagnosed about 4 years ago. We just heard that she is failing now....but we saw her about 3 years ago and she was doing remarkably well.
My prayers and thoughts are with all those who live with cancer and other deadly diseases like ALS.
Had a sad experience tonight--DH had an "accident". This has never happened before and he was so upset and embarrassed. I tried my best to calm him and tell him things happen and that is why I am here to be near him and to help..sigh... Poor guy--how degrading this disease is. It takes everything you love and ruins it. Guess it just is the way it is and we will do what we have to do but my heart breaks watching him being so humiliated by such a disgusting disease. So it's up to me to make him feel ok with himself now....
I have a frozen dinner in the oven for dinner tonight--I know bad me but hey, after what we have been though this will work and fill our tummy's. That is the most important thing right now. I really need to just relax and work on gathering my thoughts now....need to work on making life just a little nicer here for my DH---he is truly going through hell.
Oh it sounds like a very hard night at your house......I feel badly for both of you guys. It is a horrible and cruel disease.
My thoughts are with you.
Yep, very bad night but maybe tomorrow will prove to be better. After a good nights sleep wonders can happen. I burned 3 of my fingers really badly on the oven rack--just a stupid move on my part--my mind was not on cooking. So now I'm trying to get them to stop hurting and then I am going to try to fall asleep--early! I pray tomorrow will be great! Night everyone!
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We used to go to Japan every May.....a lovely time to visit. His mother and family are doing well. I look forward to seeing those dear people again. There is one relative.....(his cousin's wife) who is very ill with Pancreatic Cancer.....I hope that we get to see her while we are over there. She and I are the only non Japanese members of the immediate family....she is Russian.
