(Originally published on Voice Space.)
That was my dad only two short years ago. Today, he lies in a hospital bed in a room outside of my parents’ home, unable to communicate, enjoy life or the company of his granddaughter, unable to walk around or sit in “his spot” on the couch. These two years have brought many changes, but the most difficult has been his inability to tell us what is going on. It is nearly impossible to figure out his needs and wants.
It is so disappointing to see the way my dad is treated because of this inability to communicate. He is frustrated and he lashes out. People, especially caregivers, seem to think that he is able to control this behavior and that we, as his family, are able to influence this behavior in some way. My mom has been told numerous times about his “bad behavior” or his being “uncooperative.” Caregivers have told her to “talk to him.” That they “will try” to do things like give him a bath or feed him or shave him, but that they “can’t make any promises.” I am confused by this, as I am not a caregiving professional, but I am aware of the symptoms of dementia that include angry outbursts, uncooperative behavior, etc. So, why are these supposed “professionals” confused or surprised by this behavior?
I question the training that is received by these individuals who often become the primary caregivers for these individuals who can no longer speak or advocate for themselves. We have a relatively strong family unit and my mom has an additional caregiver for herself (she is suffering from long-term cancer) who goes with her twice a day to visit my dad. Without these visits, I am unsure of what care he would receive. My sister and I are well-educated and financially secure. We can take the time necessary to come down and deal with paperwork and medical appointments and medicine needs. I often think of what my mom would do without this support network. But, there must be many out there who do not have these support networks. And even with this support network, my mom is often a nervous wreck, worrying about how to do better by my dad, worried about what her medical results will show, worrying about what will be done with my dad if her cancer takes her before his dementia takes him. And there is no comforting her out of this. Her concerns are all valid. Her life has become one of a depressing wait for death to take one or both of them. And I can speak for and advocate for them, but I cannot take that end point away.
So, why am I saying all this? What is the point? What do I want done? The answers are not as easy to find as the questions/frustrations. I think the reasons I’m saying all this is to consider how we, as advocates, caregivers, citizens who will probably be part of this aging community (or maybe already are) can make this place a bit better. I know I’m not the only one who wonders about these things and some have already taken action – my new favorite place is Caregiving.com - part resources, part therapy, part support! I know there are many blogs out there. I know that there are great movements in creating better education, better advocates, better speakers for those who can no longer speak. I hope to join those movements and make some changes, if not for my own parents, then for parents of others, and myself, and my daughter.
It isn’t easy, though. But, nothing worth doing ever is.
- Ensuring You Hire Quality Care (caregiving.com)
- Co-Caregiving: Recognizing the Pitfalls and Avoiding the Sinkholes (caregiving.com)
- Dementia Care: How Do You Make It? (caregiving.com)