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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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Hello @bodega. I'd like to extend a warm welcome to Mayo Clinic Connect and also thank you for joining this discussion to share your experience and perspective. Members like @lizzier and @deek15redpeppers are coming at this from the caregiver perspective, however, it is great to also get the other side of this journey.
Has your caregiver struggled with depression like others in this discussion?
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I read your message and I loved reading it. I had lunch with my favorite 'gal pal' on Sunday. We've been friends for a very long time. I met her in the same year that I met my husband, so she is 'family'. If she stops by, and we're not here, she might let herself in, and make herself a cup of coffee, and read for a bit, and she'll walk through our gardens and take pictures. We''re more like sisters than friends. There was a tragic death of a small child who was murdered by his mother in our state. I was a past Child Protective Services Worker, and I also an Adult Protective Services Worker. So when anything like this happens it is disturbing to me. I was saying to her that I pretty much figured out life but there are a few lessons still to be pondered, and I said that I haven't got that part yet. I also have studied many Spiritual programs. I was raised Catholic, and I've Studied Unity principles, and Buddhism, and for the last 30 years I've studied A course in Miracles, so that's where I landed philosophically. There is a lot that I know, and much that I surmise, but ultimately for me it doesn't matter if I call 'it' God, or Spirit, or the Universe. Or if we see ourselves in our highest evolved state, as God, or Good. She also has her own practice. So I basically asked her what her understanding is, and she looked at me and said "everyone dies". Pretty simple. It really is a singular journey. Someone once said to me "We come into the world alone, and we leave the world alone." I also see a gorgeous world. My children don't live thousands of miles away, but I raised them to be curious, and to live their lives in a productive manner, and to not be a problem to society, but more importantly to not be a problem to themselves. I see them, talk to them and text them, but I don't have expectations that they call daily to fill me up. We love each other, but I don't put demands on them. My parents are gone, and I still have two sister who live away from me and from each other, so mostly my friends are my family, and books are my friends. As my eye sight fades, nature took over, and I get by, as the song goes 'with a little help from my friends'. Life is magical. I loved reading your comments.