Lonely

ljanebarton

For some reason, today I feel/felt very lonely. My DH along with ALZ, has a traumatic brain injury and 24/7 care. Family is not at all supportive - my sister just looked at me this weekend and told me I have my hands full. They ask no questions, but sure can pass judgement in a flash! My older (bossy sister) who is an RN is constantly telling me all the things I do wrong. It's so frustrating, because at the end of the day, she doesn't know anything. When your best friend has this illness, who do you turn to to just bounce things off of? I have friends, but I'm sure they get tired of hearing about all the "stuff". Saturday, we went out to dinner and when his food arrived, he looked at me and said 'what am I supposed to do with this"? It caught me so off-guard....I just looked at him and told him to eat it. :-(

I feel fortunate to have found this space - I read a lot of the comments and think - yes! exactly, this is my life.

Jeanne C.

I love the advice we get from outsiders 🙄.

I get lonely too. I only talk to my friends about this if they ask. I feel like I have a little more leeway with my sisters, who mean well, try to genuinely help, and are very kind to my husband. Today I forced myself to go to a local caregiver support group meeting. Honestly, it wasn't helpful information-wise (I get better advice here), but it was nice to spend some time with people who also live with this.

RickM

Most people have no idea of what you are dealing with, so don’t bother thinking about anything they say. IMO. Why do I say this? I tried to help my dad when he was caring for his wife with dementia. A couple of years later when living through this with my wife I realized that I had no clue what my dad was going through. It’s an experience that’s hard to imagine. People here and in support groups, living the experience, are the only folks who understand.

Joydean

Rick is so right. Until you are the one going down this road you can’t understand it . But you know we all understand, sending you hugs and prayers!!

JJ401

Lonely here today too. I know the calvary isn’t coming. It wasn’t there when my first husband was dying and it won’t be there this time. I had one local friend I could talk to, but she unexpectedly passed away. I have a friend whose husband is a little further along than mine, but they have moved states away so now we only talk on the phone.. His kids — one we don’t see or hear from often and has not been told — the other was told two years ago and has seen him three times for less than an hour total since. My kids listen and help when asked, but I don’t want to burden them. The local in person support group never restarted after Covid. I get the lonely.

It’s the unexpected declines that gets me. My state is replacing our license plates with new ones. I try to have him do things he is still capable of so I asked him to put the new plates on the car. Failure. I was wrong.

This disease is awful for both the afflicted and the caregiver.

M1

Yes, this is a very lonely road, i get it too. I'm an introvert, my partner was such a wonderful person, i didn't want or need a lot of other friends, and as she worsened most of our mutual friends drifted away. Very hard to explain to outsiders what this is like and hate to be constantly complaining, so I mostly keep it to myself. The folks at her MC understand and this forum understands. Glad you found this group, it can help.

Denise1847

I wonder what the loneliness, stress and alienation does to a caregiver's physical and mental conditions after the disease takes one's loved one. I sometimes feel like I am living my last years as my husband declines. I know humans are resilient, but this has to take a toll on our total condition. I sometimes feel like I am on an island with just my DH and me. No one wants to row out to our island.

May you all be blessed with peace and comfort despite our isolation. We have to choose to make it the very best day we can for ourselves and our loved ones.

toolbeltexpert

Well I also understand the isolation this disease brings to the pwd and the caregiver. Stuck in time but not wanting to run out the clock. Lonely is often an understatement at least for me.

PaulaT

I understand, we are fairly early in my DH diagnosis but he isn't the same. I almost feel like I am grieving. I feel my life is consumed with caring for him. Sometimes I get tired of thinking about everything . I try to focus on the all the good things but it is hard . I do feellike family and friends get tired of only hearing about what's going on. But that's my life now.

ljanebarton

I do feel fortunate that my DH actually doesn't have any insight to what is wrong with him. I think that's thanks to his TBI. I try very hard to be cheerful when I get home and greet him, but that gets exhausting too. Having to do everything is also exhausting - I feel like I'm in constant motion. I still work full time and am his caregiver on the weekends. As everyone is aware - there are always things to do. Pay the bills, plan dinners, grocery shopping - the list is endless.

I also feel like its up to us to figure everything out about this awful illness. Most of what I have learned recently is from this forum.

Again, am feeling blesses that this forum exists!!