My Experience Caring for Parent With Dementia
When A Parent Becomes the Child
With Dementia, the mind goes backward in time. Along with forgetting current events, there can be great agitation experienced by the person who has dementia. They can forget prior injuries that cause immobility and also forget that they retired 30 years earlier.
My father's mind went back so far in time, that I did not exist as his daughter. My mother did not yet exist in his life. He did however recognize me as his sister. I felt great relief that he recognized me as some sort of family at least. So I had his trust all along. He knew that I cared about his well-being and thanked me many times for "looking after him".
Beginning of Dementia
After a fall outside of his home and not fairing well at physical rehab, my 92 year old father became bedridden and needed incontinent care along with meal preparation. I moved in with him and provided overnight care while hired caregivers tended to him in the daytime while I worked full time.
Dad had mild dementia at this time but was still very aware, reading the newspaper every day and listening to his country music. He was eating 3 meals a day and still loved his pie and ice cream desserts!
Progression of Dementia
After about 18 months, I started noticing the dementia worsening. My father forgot that he retired 30 years earlier. He also forgot the injury that impaired his mobility. He would try to get out of bed to get dressed for work because he worried about "letting the guys down" if he did not make it to work.
He began asking for his parents, siblings or cousins who were no longer living. One thing that came natural to me is realizing that I could not simply tell my father that certain people had already passed away. In his mind, they were very much alive. At this point, his mind had probably gone back about 60 years.
I would tell my father that the person he was asking for either was at work or went out to the store and would be back in a little bit. Yes, I was lying to him. That was the only thing I could do. Dementia patients believe a different truth and arguing with them can cause great distress and agitation. My father's mind was in the past, not in the present.
Worsening of Dementia
After about 24 months, the dementia was extremely worse. I think worsening dementia is partly due to lack of stimulation from leaving the house and just getting out and about from a daily routine. That is just my opinion.
My father was trying to get out of bed 24/7 to get dressed to go to work. He was so obsessed with getting out of bed, his food intake and body weight dropped significantly. It became harder and harder to bathe him. He did not want to eat, take medication or be bathed. His main goal was getting out of bed.
I was not getting any sleep at all and was not able to quit my job. I made a decision I hoped I would never have to make. I moved him to a VA nursing home.
My father was in the VA nursing home for 8 months before he passed away.
Yes, I could have kept him at home on anti-anxiety meds that would make him sleep all the time. With my father being non-compliant at bath time, it was not possible for 1 person to care for him adequately. We could not afford to have more than 1 caregiver at a time.
Nursing homes in my state are not permitted to use bed rails as they are seen as a "restraint". Because of this and my father's great agitation in wanting to get out of bed, the doctors did keep him medicated on anti-anxiety meds. He slept most of the time.
Even though I had hoped to keep my father at home, I realized that it was best to have him in a facility where he could get the proper care. Dementia changes everything and can make it impossible to care for a person alone. Had I been able to get extra help in the home, I would never have moved him.
I saw my father on his 96th birthday. He was awake and recognized me as his sister. He passed away about 3 weeks later.