Been lurking and thought I would say hello.. I care for my husband..
have been lurking here for awhile, and all posts I have read have been parent/older relative care-giving..
I care for my spouse, my husband who is a Vietnam Vet. He always has PTSD since coming home from Vietnam and several years ago it was coming back full force, then the Parkinson's symptoms started along with some cognitive issues that fluctuated, and he was really starting to fatigue very quickly..
Just before all these symptoms started (hindsight, I think they were already started and I did not pay attention close enough as they were minor at that time) we bought our dream farm, with the goal of having it paid off in 10-12 years. He was self employed as I was at the farm and for him..
Several years forward, I am his 24/7 care-giver, we lost the farm, moved to Florida since the cold New England winters were getting too much for him.. I feel fortunate that the VA came thru for us and we started that claim up north, and they pay for him to go to adult day care a couple days a week. we do have a roof over our heads, food etc..
THe hardest part for me is I use to be very active all day, and now I cant leave him alone.. He thinks he can still fix things etc, and if I run to store quick (about 15 mins) he gets all upset and feels like I left him for hours most times.
Other then a couple neighbors we really dont know anyone here, and its hard to get out since he fatigues so quickly.
I do so miss my old life, this is not what we planned for us! We will be married 40 years in the fall..
I feel guilty about missing my old life and the farm and friends (whom you find out who they really are when you cant participate in activities anymore).. I even feel guilty about bringing him to day care a couple days a week but I need the time for myself and to do errands with dragging him all over with me.
He has Lewy Bodies with dementia, PD , PTSD and all 3 can cause the dementia. The LBD diagnose came with his fluctuating cognitive problems, some days (getting rarer now) you would think he is fine, then a couple hours later he is out of it.. All the neurologists he has seen feel that LBD with Parkinson is is the correct diagnosis.. Sadly, only post mortem can tell for sure.