How do you handle the loneliness?

I do understand and I can’t imagine you doing this for so many years. My goodness. The strain of this must be incredible. I am seeking placement for one parent now. Living with such stress is just not sustainable long term for me. My health suffered years ago when I was sole caregiver for my older cousin who had dementia.

Have you consulted with an attorney to get your rights and responsibilities? Good luck! I hope you can find some options that help.

Right now I get support on line and just text my friends. I join them for lunch when I can. It’s hard when I have to get paid help to leave the house. I also try to get to the gym most days to work out. That helps me.

Hello, @tooyoungforthis Nice to e-meet you here on Connect. I'm Scott, my wife was diagnosed with brain cancer at 48, and I was her sole caregiver during her 14+ years war. I'm glad you found Connect.

While I'm not familiar with what EOD is, I can certainly understand your frustrations with caregiving and the often-illogical manifestations caused by brain damage. I found Connect specifically due to the isolation caused by caregiving.

You asked how people get through this so I wanted to respond to you on that. I know each of our loved one's
and their caregiver's journeys are unique, I'm happy to share some of what worked for me.

First, I embraced the AA mantra of "One day at a Time". My goal each day was to complete that day and try not to worry beyond that. I also let many of life's more mundane tasks fall by the wayside as the demands of caregiving and my wife's needs increased. In an effort to have some socialization, I joined Connect and began reaching out to some old friends and others by writing letters and or emails, which I could do at very odd hours, which helped me a lot.

I'm happy to share other ideas if you think they could help.

Strength, Courage, & Peace

By the way, would you mind telling me about your husband's EOD so I can learn?

I am giving you a big Hug. I found and awesome format. Mayo Clinic connect. There is a section that addresses Caregivers for people with MCI (Mild Cognitive Issues) and more advanced cases of dementia. We can dump our frustration. share our experiences. And share our tools of dealing with our loved ones. Has been a tremendous help for myself navigating this unfortunate disease.

EOD - early onset dementia. The disease he has is called CADASIL. It’s a rare genetic disease that manifests itself in so many different ways that no 2 people are alike in their experiences. He could live for another 20 years or he may die tomorrow. We live with a ticking time bomb.

That sounds quite stressful. I read the most common age of diagnosis is 30-50.

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.

He first showed symptoms in his mid 40’s. Diagnosed at 50. He’s now 58. I’m 55.

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.

Hi Pamela, It sounds like you are doing the best you can to keep your sanity. Too many times people make the mistake of giving up their whole lives for another. I am not saying do not be loyal. But, one must take care of themselves in order to be strong enough to help others. Thank goodness for your friends as they are life savers. My heart goes out to you. Sending you good energy and support.

Thank you, equanimous. I have friends who continually remind me that I'm doing a good job and that means a lot. Care givers need affirmation and credit for what they do, because the job is more difficult than I ever realized. I watched my brother decline before he finally died at age 86. I had no idea what my sister-in-law was going through for a very long time. A visit of a few days now and then was hardly enough to grasp the reality of the day-to-day relentlessness of the ordeal. When my brother told me that his wife had become "more of a caregiver" than a wife, I didn't know what he meant. I know now. It takes a village to raise a child and it takes a village to help the dying.