Caregiver for spouse with TBI and dementia.
My failure each day of late is loss of patience for the constant confusion and disorientation from my husband of 22 yrs for whom I am full time caregiver. He had an accident almost 5 years ago that resulted in his sustaining a severe TBI and he lost approx 25 yrs of memory-/our entire life together. He has also been diagnosed with dementia 3 years ago. I have no help and am isolated in our home where I care for him. He is functional in that he can walk and dress himself (I must lay out his clothes assist), can feed himself (but cannot prepare anything--I prepare his plate and set up at table), can go to bathroom himself (but is poor with hygiene and dribbles urine so I keep a Depends on him and must clean up around toilet constantly). But he forgets relationships (confuses grandchildren for nieces/nephews or might not always know sons--says it's a 'buddy' or forgets that his parents passed 20+ yrs ago and asks me all the time where one or the other is or that he wants to call mother to come get him, etc. he disagrees with me all the time and when I remind him of his accident and TBI or dementia, he yells at me thAt I am the one with the brain injury or such. He cusses at me frequently and in presence of grandchildren when he never would have used such language before. Needless to say, we have no marriage anymore. He does t even know we are married or sometimes who I am. But then he might tell me a hundred times a day he loves me--repeating so often in very short intervals that I think I will lose my mind, let alone all patience. I feel all I do is go thru daily routine of meals, arguing, telling him I am his wife who had to retire early last year to stay home and provide the 24/7 care and supervision he requires. He doesn't think he needs supervision. He thinks he works. He doesn't know this is our home. Every day he asks if he's spending the night here or if I'm going to. He sits for several hours a day going thru a tote bin of golf magazines or sale catalogs that he tears pages out of with pictures of expensive watches and argues that he needs to leave to go to 'that other building' or wherever to get these items that he says are waiting for him. Or he circles every item in a catalog of sporting clothes or boots saying those are items he is buying. He has no attention span for TV programs and confuses what is on TV with our life. It's just constant confusion for about 12 hrs a day and then he gets up a couple times at night and wanders and wants cookies and milk or anything sweet --eating much ore than he should. I manage to get him to get into shower now only about once a week because he says he has already had one and dislikes it now. He is much bigger than me and when I give him a shower, I have him wet and wash his hair while I scrub his body down so he can rinse and get out. He's not steady so I worry about his falling. He uses to be meticulous about his appearance and grooming but now he is the opposite. He won't let me clean up his facial hair (that he never had before) and refuses to get a hair cut. I put the paste on the toothbrush for him and watch him brush but he doesn't do a good job anymore and recent checkup showed he has 3 cavities needing filled as a result of his now poor dental hygiene. There is no joy in my life except for the moments I can catch with grandchildren before he gets aggravated at them. That makes me angry because he loved his grandchildren so much and would have never raised his voice at them before. I feel so cheated that being 9 yrs his junior (he's 65 and I am 56) I have had no life partner now for nearly 5 years. But then I feel guilty for feeling that way. But it's as if both of our lives ended the day of his accident. I am no longer able to be a wife or a good Mammaw and enjoy those roles like I used to. I HAVE no life. But I think of those for better or worse vows we took. More than anything, i miss the companionship and love of a husband.