Loneliness

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With dementia I find I am having the same conversation with my husband over and over. So far I can get out of the house, but soon I will not be able to do that and I tend to worry ahead of time. Family is far away and friends are good, but I don't like to burden them with my issues.

6 Comments

Lorrieo try to start in home care now.. So he's used to someone coming in, just a hour here or there during the week.. It's so important for your state of mind to be able to get out and relax..
Sharing stories online can be a great help, and we can do it without leaving the home. Also, you could get books from your library, as reading can be a great help also. TV is a good companion for me. Meeting a friend for lunch, or walking around at a local mall can help also.
Lorrieo
As A&A stated above, find outside help now so he has time to adjust. You need time for yourself as well. Most agencies in my area require a three hour minimum. You could start with two days a week. If you think he will have a hard time, stay while the caregiver is there for a couple of weeks until he is more comfortable with the situation.
Lorrieo~I Agree with assandache7. Now is the time to start with small changes that he can handle. Increase the time as time goes by. Dementia to a big degree is about routine...though I realize routine does not solve all problems.
There should never be a time when you are unable to get out of the house. Turn your worrying into planning. Take the suggestion from assandache7 and start with some in-home care now.

Also, have you considered an Adult Day Health Program? It can be beneficial for your husband and also provide some respite for you.

One of my friends lives in a different state and is in my town periodically. Getting our schedules to mesh when she was here was hard, so sometimes we had phone lunch dates. We'd schedule a time when she would use her lunch hour talking to me, and I'd arrange for my husband's amusement (often with a nature CD). If she had an urgent work matter come up or I had to attend to my husband, we were understanding, but at least most of the time we were getting together within the constraints of our circumstances. Avoiding isolation is VERY important to caregivers.

I understand about not wanting to burden friends with your issues. Join a caregivers' support group for that. Post here for that. You also need a way to leave your issues totally behind. Talk to friends about other things. It is good for you! I don't mean never to talk to very good friends and close family members what you are going through. It will not be a "burden" for them. I just mean that your contacts with friends should serve as a break from your caregiving woes.

My husband was able to spend his entire dementia journey at home, with me. I am grateful that was possible (though I was prepared for the possibility it might not be.) The point did come, as you are expecting, that he couldn't be left alone at all. Prepare for that by figuring out ways to avoid isolation and to get out on your own some. This is how you'll be best able to hang in there for the long haul.
Thanks for all your suggestions. I appreciate it. He would be insulted at
this point if I had someone come and stay with him. But it could be down
the road when he becomes more confused. Adult Day Care is very expensive
where I live. I am a very capable person and darn smart...so thanks. I will
try to incorporate your thinking. I do belong to a support group. Thanks to all.

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