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Posted: Tuesday, April 19, 2022 2:06 PM
Joined: 7/19/2021
Posts: 6

I am so thankful for this forum and group. It is a lonely journey, except for the care and compassion found here. As of now, my dad is doing okay, not liking to talk, but he is aware and helpful to his wife when asked to do something. Can seem engaging when visitors come. Good for both parents really, other wise they become shut INS. Lonely for me, as my mom and I are his primary companions and little of the outside world, siblings etc. understand it... nothing new there I guess, there is so little we understand of any other person's life experience or pain etc...I am GLAD he is here and aware and willing to participate. We, my mom, him, and myself are all afraid of what's coming next, we're all in this together though...some how, with faith and perseverance we will get through it's a lonely lonely experience though...
Posted: Tuesday, April 19, 2022 2:56 PM
Joined: 12/4/2011
Posts: 20920

It is a lonely, challenging and changing....we know and are glad to be here together.
Posted: Wednesday, April 20, 2022 3:59 PM
Joined: 9/10/2021
Posts: 374

also agree... none of us signed up for 'this'.  so - just doing best we can, and know we are not alone.  

We actually had a few decent days in a row.  today not so much. tomorrow... who knows. Just dealin' as it comes.

Posted: Friday, April 22, 2022 11:03 AM
Joined: 4/18/2022
Posts: 10

It is a very lonely experience. And it's hard too because, at least for me, I was always so exhausted from being the sole caregiver for my sister, that I didn't have the energy or emotional strength to keep in touch with friends and family for my own needs. I also lost touch with doing the things I enjoyed. My sister is now in an AFH, but looking back, I really don't know if I could have changed these things, so it's hard to say to "try and take care of yourself as well" when I know you may not even have the energy to do that. But know that, even though you feel alone, the love you are demonstrating is radiating out into the world. Your love makes a difference.
Posted: Friday, April 22, 2022 5:09 PM
Joined: 2/21/2022
Posts: 120

Understand, I too have no energy or will to do the things I would like to do. At night when I put my DW in bed I find a little time for myself and personal needs. Your right it's very lonely even when I'm with DW (she's nonverbal). The life of a caregiver, but we keep going every morning we wake up and put our boots on and get after it, putting on our smile, trying to stay positive, dealing with every surprise our LO's my throw at us. I'm so grateful for this web page and forum at times it's my only comfort.
Posted: Saturday, April 23, 2022 10:15 AM
Joined: 1/1/2022
Posts: 25

This lonely road is definitely a difficult one to walk. Especially as it is virtually impossible for others to understand. In fact it reminds me of what wise king solomon once said “The heart knoweth its own bitterness; And a stranger doth not intermeddle with its joy.”

What did he mean” Can we always express our innermost emotions —whether sadness or joy— to others and share with them precisely what we are experiencing? And can one at all times fully understand how another person feels? The answer to both questions is no.As an example, consider suicidal feelings. The one having them often cannot clearly communicate these feelings to a family member or a friend. And others cannot always recognize signs of such feelings in their associates. We need not feel guilty when we do not see these signs and fail to take helpful action. This proverb also teaches that although it is comforting to turn to an empathetic friend for emotional support, humans are limited in the comfort they can offer. We may have to rely on God alone to help us with some difficulties some difficulties. 

Sometime we can get frustrated when others don't seem to care enough or don't understand but the fact is they are not capable of feeling what we are going thru because its not happening to them and as we all understand even among Caregivers we cannot completely understand the devastation that occurs with each other, we can only offer our support.