I am a 23/7 caregiver for my 84 year old spouse who has been diagnosed with frontal temporal lobe/vascular dementia - as much as this can be accurately diagnosed. Because we are married, this presents with so may complicated problems. Much of the time he does not know who I am, which is not, in and of itself, hard to deal with, as he often thinks I am his first wife and has difficulty recognizing other family members. I do not sleep in the same bed or room, as his incontinence, though I use every bedding option and expensive, extra absorbent disposable underwear, is something I cannot deal with, having wakened in a wet bed too many time. I sleep on our sofa. He often wants me to stay with him and will become very agitated if I do not, so sometimes I lie down until he falls asleep. This usually happens very late - 10pm to 3am. I am so tired that I sometimes do fall asleep, but then leave and return to the sofa. I always rub his shoulders, arms and kiss him goodnight, saying "have a good night's sleep and I'll see you in the morning."
Here I will admit that after nearly 4 years of this, and about a year now of increased agitation and violent physical behaviors toward me, including name-calling and hitting, I am no longer able to feel anything but pity for a man I once loved fully, totally and passionately. It is also important to understand that I had an early childhood filled with physical and sexual abuse. The first time this man, who now bears no resemblance to the man I married, hit me, I was hit hard with PTSD. My fear rose to a point where I was paralyzed with it and the lifetime of counseling and learning to deal with my past was wiped away in a second.
I know that there are moments of memory of the life we had before this insidious decease that give me joy, but my sheer exhaustion is so deep that I truly no longer want to be in this world. There is no money for respite care-period. And friends can no longer help because of the intimate nature of his daily needs. He does not qualify for any type of assistance with his medical and supply needs thru the VA or other programs. His monthly expenses with co-pays, multiple ambulance trips and everything else, amount to nearly $900. I have now been advised by two social workers to file bankruptcy, but to go ahead and apply for medi-Cal so that if he falls-(twice this morning, but no injuries), he might finally qualify.
I could go on and on, but you get the picture. I hug him when he begins to be agitated, I try to soothe, I try to follow all of the tools suggested, but the constant unrelenting anger and complaining, the violent behaviors, have worn me down completely. His grown children express concern, come to see him, (and of course on those days he is "up", and they always remark "dad's doing so well, don't you think?" I want to scream at them, "NO! NO! He is not doing well at all! What you are seeing is not how he is every day and night! We had to sell our home "as is" because we had no way to do needed repairs, and moved into a small apartment to save money, in an old and very run down complex. The move was hard on him, though I did keep him away until the bedroom and living room were complete and looking as much like our home as possible, but it is still very confusing for him. He did not believe that our house was "home" and wanted and still wants to leave at any given moment.
And so it goes. So I am preparing to file the bankruptcy and so much more to do just to keep hope alive. And I realize that though he will eventually pass away from complications of this, life could go on like this for several more years. I rarely get to see or interact with other family members, my wonderful grand children who I adore and have always lived doing fun things with and for. We can't spend time with them due to distance. His kids do celebrate special occasions with him and I am appreciative of that-really, but I can't seem to convince them that I need their financial help and real respite help. They are in denial of the severity of their father's condition.