It's OK to Ask for Help

I went to see him this morning after I went and picked up adult diapers and aspirin for him. When I found him in his bathroom, he was getting the caregiver to help him with what he needed to get done. This may sound like a small thing but it's not. This is a guy who was extremely hung up about normal human functions. And he was allowing someone to be in the bathroom with him. I turned around and went to the living room to wait for her to bring him out.

One of the goals I have is to maintain my role as the adult daughter. Not the nurse. Not the caregiver. Not the nag. Not the EMS driver. Not the therapist. Not the doctor. To the extent that I can delegate those roles to others, I can avoid resentment and burnout. Dad has a housemate who lives solely in his room (10x10 ft.), and from 8:00 a.m. to 3:00 p.m. and from 5:00 p.m. to 8:00 p.m., his daughter lives in there with him. They come out only for meals. He's not in hospice. She does not work. Dad thinks she's the manager of the facility because she's 50 and white.

Now, in his current mental state, Dad would probably find this an ideal set up. I know of other parents who have made their children promise not to put them in the care of others, and the children have complied, walking away from careers and their own lives. I believe there is another way that's fairer to the adult child and in reality, fairer to the aging parent. Let the parent adjust. If my dad can let a caregiver set him on the toilet and get him back up, anybody can do it.

He's still unable to walk and not fully alert. He can carry on a light conversation, and recognizes who I am. If anyone were to call and identify themselves, he would probably know who you are. He's not physically combative, although he sometimes gets anxious and sometimes hallucinates, reaching for things that are not there. Two male tenants died in the home this week and Dad didn't seem to understand what the caregivers and I were discussing. He was smiling cluelessly.

I met with the manager off site to discuss his case. She is very young and pretty savvy. I like her because she cares a lot and knows each tenant intimately. She said that he did have physical therapy twice this week (finally) and that the first time he was unresponsive. The therapist wasn't sure she could do much for him because he couldn't follow instructions. The second time he was able to walk five steps before becoming exhausted. I asked her if she felt like he was frightened by the therapist, or what she was trying to get him to do. She said no. I told her the longer he went without getting up and moving, the more he would atrophy. She agreed. We talked about how his mind had deteriorated since the hospitalization and that this change could very well be permanent. She thought it might be from being around housemates who have memory loss and diminished cognitive skills. I told her his history with the prior fall in the spring and how we'd already seen this before. I told her whatever the socialization was he was getting now, it was better than anything he was getting before. He goes into every one's rooms to hang out, including the gentleman who lives with his daughter in his bedroom.

We talked about her experience in group homes. She said that sometimes families want very much (and expect) their family members to recover to the point that they were ten years ago. And it's not possible. They blame the caregivers, the meds, the therapists, and the doctors. But there is nobody to blame, it's just a normal part of the aging process for those with dementia or Alzheimer's. They had one tenant last week who had heretofore been nonverbal (other than sharp barks) regain her mental faculties for a day. Everyone in the family called her to carry on a conversation, the first in months and possibly years. The next day she was lost again, and the blame game started back up.

I would love to see Dad regain his senses and regain the ability to walk again. But if he doesn't, no one has failed here. It's just the progression of Parkinson's coupled with dementia. I'm thrilled that he accepted help. This will help us both.