How do you handle the loneliness?

Posted by tooyoungforthis @tooyoungforthis, Mar 21 12:36pm

My husband was diagnosed with a rare brain disease that causes EOD. It's been 8 years and he's in the mid-stages of dementia; Still remembers me and people close to him, but his short term memory isn't good and he gets confused easily. He's also extremely paranoid and questions my every word and movement. Conversation is almost non-existent, outside of the accusations and questioning. I have a job, but no friends at work or elsewhere due to my husbands paranoia. It's been extremely lonely. How do you get through it?

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

joisey | @joisey | Apr 8 3:46pm

In reply to @trishaanderson "Could you tell me more about the Mayo Phoenix support groups?" + (show)

Caring for the Caregiver is on Thurs afternoon for one hour. email Lespron.Katherine@mayo.edu

My favorite support group is 2x/mo. on Wed. email Janet Richards. richards@duetaz.org

Hope to see you at one or both.

wctdoc1943 | @wctdoc1943 | Apr 8 4:47pm

In reply to @tooyoungforthis "Today is not a good day. I just got the results from my husbands most recent..." + (show)

How disheartening. I'm so sorry.

judimahoney | @judimahoney | Apr 10 9:13am

In reply to @trishaanderson "Could you tell me more about the Mayo Phoenix support groups?" + (show)

Here is the link, they meet virtually Thursdays at noon Mountain time:
Virtual
https://mchealth.zoom.us/j/99414140153?pwd=d21NUHh4TVZPN1lLUWVlRWRWWUp2dz09

celia16 | @celia16 | Apr 10 7:14pm

In reply to @tooyoungforthis "Today is not a good day. I just got the results from my husbands most recent..." + (show)

How are things going since your last post? Any changes you noticed after the test results?

tooyoungforthis | @tooyoungforthis | Apr 11 7:21am

In reply to @celia16 "How are things going since your last post? Any changes you noticed after the test results?" + (show)

Things are tense for me. I haven't shared the results of the test with my husband yet - we are seeing his neurologist soon so I want her to explain to him (and me) exactly what's going on. The fact that she didn't want to see him immediately tells me the stroke (infarct) is no longer evolving, so that's good news. He's had a constant headache and is very tired which I suspect is the result of this latest incident. Thank you for asking.

celia16 | @celia16 | Apr 12 5:53am

In reply to @tooyoungforthis "Things are tense for me. I haven't shared the results of the test with my husband..." + (show)

That is a lot to handle. I get how it’s a very tense situation. Hope you are getting support and a way to take some breaks.

trav77 | @trav77 | May 21 8:20am

My wife has vascular dementia. She had a stroke about 2 yrs ago. She went to stage 5 fairly quickly after that. The loneiness is hard to handle. You loss friends quickly. I have a grief counselor I see. That helps a lot. I attend a group dementia session once a month as well. I call and text a few friends some and that helps as well. I never get out except to go to work two days a week. Work is a relief for me. I do have a sitter for my wife while I work. I don't do anything else. Everyone says I need to but it is too hard right now. I do not feel right to try and enjoy without her. Plus it would cost me more money. I can not ask friends to stay with her as yet. They really do not understand what may happen. If she has a bm or urine accident they would have to clean it up. Sure they could call me but it would take me time to get home. Someday maybe I will try to get out but not right now. I am not ready to try. I know this is not a answer for you I don't think there is a answer. We just try and cope the best we can. I guess I am venting more that helping. Sorry. I have no answers.

tooyoungforthis | @tooyoungforthis | May 21 9:48am

I'm so sorry you're going through this. And you're quite right - there really is no answer. I suppose we simply make the most of the time we have and that's the best we can do. I do go for daily walks though and that helps. Perhaps you could try that as well. The fresh air, being out in nature... As for your comment that you don't feel right to try and enjoy things without her; please try to remember that the first person you need to take care of is yourself. Otherwise, you aren't of any help to your wife when she needs you the most.

concepta123 | @concepta123 | May 22 12:21am

In reply to @tooyoungforthis "He first showed symptoms in his mid 40’s. Diagnosed at 50. He’s now 58. I’m 55." + (show)

I am so so sorry
It’s so unfair

sillyblone | @sillyblone | May 23 10:06pm

It was not what any of us expected! Loving them and losing parts of them is hard. I can still make him laugh and he still says "I love you". He still looks at me as if we are having our very first date. I am crying while writing this . We are just human beings and are not perfect by any means... but I will always love him!