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You are certainly welcome. I'm glad that you reached out and spoke about your struggle. It is so helpful to know that we are not alone in this vast universe. I never even told my grown children when I was at my worst, so believe me I do not know all of the answers. I learned a lot on my journey with PMR and GCA, but I would have been far better off if I was honest from the beginning. I was always "doing OK". I even stayed away from people a lot, and "I knew better, but I didn't do better." This all came to me during the course of this disease. We learn a lot from our experience. You are doing the best that you can. No one can expect more.
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Gads, the replies are entirely excellent! I am grateful I am able to read them.
I have secondary progressive MS, RA and adrenal insufficiency, all being "treated" currently. I,too, am able to totter around and mostly do a good job on the "house work"...but I am not as strong or fast as I was even a year ago so it seems I am very slow, an entirely correct assumption.
Being a reader I reread books and articles and relook at art work, relisten to music of Europe and the Americas and lots of Buddhist music. Many times I wish I could speak the languages of the Asian countries as I listen to the meaning of their songs and cannot appreciate the subtilities. I was not raised in the USA even though my parents are Caucasians and were born and raised in northern CA.; I do read and write English and was never encouraged to learn Mandarin or Tagalog. I can and do spend time thinking of the feelings the music I don't understand directs me toward. I do not mind if my "room mate" cannot share any of this. Each of us in the end cannot go with anyone to our final destination...they can only share part of the ride. I appreciate that very much.
I think after years of this sort living and thinking there is no one who can share our experience except to share it tangentially. That's o.k. as we can still share movies, our thoughts and things we see.
I hope this look into another person's life with incurable, painful and unrelenting disease is helpful. We must never think our life was or is unappreciated or a failre. It was not and is not.
Nemaste, Bodega
We do truly live in a gorgeous world especially at dawn and sundown. Our family is precious even if they live a thousand plus miles away. . We live and that is precious beyond belief. I pray I die in my sleep.
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Thank you again. Support from people like you is helping a lot. Why did I wait so long to reach out?!
I had my walk tonight with music, then we worked on a puzzle together for a bit. During dinner i got her to talk a little bit and she denies being scared of what the future will bring. She also clarified what she meant when she said I could leave - saying it's not fair to me. I reminded her of her favorite saying "Life isn't fair, get used to it". I would never leave a spouse I love because she is ill and can't do all the things we used to do...and I told her that. Now to just figure out what we can do...