How do you handle the loneliness?

I've noticed the progressive isolation that occurs. My spouse would go to weekly art classes and then less and then none. She would host annual reunion for her high school class, now that is not possible. What I have found useful is to set goals for myself and work on those. I guess we have to be a caregiver to ourself too. It is important for our well being to feel engaged with family and friends. There are tasks to prepare for the future. Routine has its benefits. Take the wins during the day and don't dwell on the illogical. It does no good to get down on ourself as caregivers.

This group is saving my sanity. I have two things to say here. First, my husband is in the fairly early stage of Alzheimer's and refuses to admit it. We need to discuss how we're going to plan for the future, consider housing, finances, and long-term care when it becomes necessary. Every time I try to talk to him about any of this, he says he'll just find another place to live and accuses me of throwing him out. He's too aware of things for me to just forge ahead on my own but won't meet me halfway to discuss anything. How do I handle this? Second, I feel so sorry for my husband and understand that this is very difficult for him. He's always prided himself on his intelligence. Losing mental capacity is just about the worst nightmare situation for him. Our marriage isn't the same as it was. We're both in our seventies (I'm within spitting distance of 80; he's 76) and got married when he was 55, he for the first time, me for the third. Of course, neither of us expected anything like this to happen, but here it is and I'm determined to do the best I can for him for as long as I can. He apparently doesn't understand that this is hard for me too. Maybe he's incapable of understanding but if you were to talk to him you'd realize that in many ways he's totally with it. I feel isolated and lonely. I love email and am in contact with several friends and that helps a lot. I'm also reconnected with an old college boyfriend and we email frequently. We haven't seen each other in 60 years, but we enjoy this renewed friendship and the conversation the internet makes possible. I wouldn't want my husband to know how much I've come to depend on my friend's support, but without it I know I'd be much worse off. It's very difficult when the person you can be open and honest with is no longer your own husband. I want to protect and care for my husband. I love him. But without friendship I'd be lost. I don't know if this in any way answers tooyoungforthis's question, but I do understand how hard this is, especially as you have no idea how long it's going to last. My 40-something grandniece has brain cancer, a husband, and two young boys. My heart goes out to everyone who is struggling. It's important, I believe, to have somewhere you can feel safe telling your whole truth. This is that place.

We had a senor marriage 13 years ago - I'm 77 and he is 74. He has dementia, is an insulin-dependent diabetic, is blind in one eye with 20% vision in the other and has Congestive Heart Disease (he just got out of the hospital yesterday).
Apathy (not interested in the stuff he used to do) is increasing, and paranoia - he has, out of the blue, accused me of trying to kick him out. When he asks me something, and I explain it to him, he accuses me of making stuff up or lying. We had just bought a hospital bed and converted a bedroom for the future when he needs more care. He also prided himself on his intellect - he was a social worker in the past - but he is losing it. He is more confused at times. I guess the whole thing is part and parcel of the entire thing. My friends keep in contact, so I am not isolated. I, too, have mobility and lung issues. I do not go anywhere without him. He goes to bed at 10 PM he is up at 8:30, and I go to bed at 1-2 AM and up at 10ish to have some quiet time without him. He is a talker and expects me to be at his beck and call all day. Sometimes, I want to stay in bed, cover up, and sleep all day.

Now we're really getting down to it. I have an aortic aneurysm and rheumatoid arthritis, plus all the other infirmities that come with age. When I hear other people's stories--like yours--I feel both relieved that my situation isn't that dire yet and so sympathetic for what people are facing. It's so hard trying to have a sensible conversation, by which I mean a conversation that makes sense, when the responses are so off the wall. I did convince my husband to sleep upstairs in a separate room so I could get the sleep I desperately need. Every night we go through the same routine: a big hug, then I get in bed to read while he watches some TV. Then he comes in for a goodnight kiss. This all sounds charming, right? We say good night and he moans about how he'll never sleep in our bed again and I'm kicking him out. He leaves. I read. He comes back and we go through everything again. I think this time I'll be able to settle down. No way. In he comes again, same routine. Finally, when he's ready to go upstairs, he makes one last appearance. I can see the raised eyebrows as I write this, but these are the sort of apparently trivial, petty things that drive a person to distraction, like a Chinese water torture. Who'd have thought a drop of water could be so dreadful? If you've been through it, as you have, you know. If you just hear about it second- or third-hand, you don't understand the full tragedy. At least here I don't feel I have to pretty up the truth. That in itself provides some relief.

This group is saving my sanity. I have two things to say here. First, my husband is in the fairly early stage of Alzheimer's and refuses to admit it. We need to discuss how we're going to plan for the future, consider housing, finances, and long-term care when it becomes necessary. Every time I try to talk to him about any of this, he says he'll just find another place to live and accuses me of throwing him out. He's too aware of things for me to just forge ahead on my own but won't meet me halfway to discuss anything. How do I handle this? Second, I feel so sorry for my husband and understand that this is very difficult for him. He's always prided himself on his intelligence. Losing mental capacity is just about the worst nightmare situation for him. Our marriage isn't the same as it was. We're both in our seventies (I'm within spitting distance of 80; he's 76) and got married when he was 55, he for the first time, me for the third. Of course, neither of us expected anything like this to happen, but here it is and I'm determined to do the best I can for him for as long as I can. He apparently doesn't understand that this is hard for me too. Maybe he's incapable of understanding but if you were to talk to him you'd realize that in many ways he's totally with it. I feel isolated and lonely. I love email and am in contact with several friends and that helps a lot. I'm also reconnected with an old college boyfriend and we email frequently. We haven't seen each other in 60 years, but we enjoy this renewed friendship and the conversation the internet makes possible. I wouldn't want my husband to know how much I've come to depend on my friend's support, but without it I know I'd be much worse off. It's very difficult when the person you can be open and honest with is no longer your own husband. I want to protect and care for my husband. I love him. But without friendship I'd be lost. I don't know if this in any way answers tooyoungforthis's question, but I do understand how hard this is, especially as you have no idea how long it's going to last. My 40-something grandniece has brain cancer, a husband, and two young boys. My heart goes out to everyone who is struggling. It's important, I believe, to have somewhere you can feel safe telling your whole truth. This is that place.

Exactly. I think there is a common perception by the public that dementia is about a person losing their memories. They have no idea how much more there is to it…..the difficult behavior, repeating over and over, making unreasonable demands, placing things in odd locations, being argumentative for no reason, resisting care, fixating, toileting dysfunction, etc. The caregiver is on constant alert. I suspect that is why caregiving brings so much fatigue. I admire all of you who do it, but years of this have convinced me to pass the baton to someone else. I’ll return here and post all about it. I see it as a good thing.