The conversation about and decision to get in-home support or place your loved one with dementia into a staffed facility is not only emotionally trying, but also highlights the financial challenge of caring for someone with dementia.
There is a lot to discuss related to placement, so there will be many posts on this topic. The core issues we are currently facing as a family are: guilt, finances, and location. Today let’s talk about guilt.
This exists in many forms for most family members who are caring for or supporting the care for a LOWD. For me, I sometimes feel guilty for not being able to support my mom on a regular basis since I live in another city. I feel guilty that I am not able to provide financial support to get my dad the care he and my mom could truly benefit from. My mom feels guilt (although it is lessening or she is getting used to it) every time she leaves my dad.
I can remember the first time she left my dad with a paid caregiver for a few hours while she ran errands. She called and cried. She felt terrible. It didn’t help that my dad was well aware of what was going on and told her that he “didn’t need a baby sitter.” My dad would ask in the future, “is that guy coming over? I don’t need him.” This only lasted a few visits, however, because my dad’s paid caregiver, Chris, has become one of his very best friends. Chris does things with my dad that are so special to him: visiting the aquarium, going on a hike, taking a walk, eating lunch outside of the home. My dad loves when Chris comes over, and now, my mom will even take short trips to visit my brother in Minnesota or me in Phoenix and Chris will stay with my dad. Now my dad says, “I like that guy!”
It’s a process.
This was a process. It took months for my mom to feel like it was ok for her to not do everything all of the time. What helped? Her support group! Oh my goodness…such a godsend! The individuals who had gone through this before my mom shared how important and valuable it was…and slowly my mom became ok with the idea. It also took my brother and I pushing her to take time for herself and reminding her how important her own wellness is to this whole caregiving process.
This is an ongoing process and the main caregiver needs lots of support and reminders that what she is doing is not only ok, but better for both her and the LOWD. A tired, burned out caregiver is not good for anyone.
And we are going through this again as we have decided to place my dad in a care facility. My mom has felt overwhelmed with various emotions as she comes to terms with it. She will go through phases: one day she is on fire and searches multiple online listings, sending me links to go check out in person; other days she puts it in the back of her mind and feels like she is being selfish. I have decided to make sure to bring it up when she seems like she wants to talk about it (or when I can tell she is feeling badly about it) and remind her of all of the reasons this is ok. Beyond that, I give her the time and space she needs on days she doesn’t want to be pushed.
I also think that help and guidance from someone who has gone through the placement process before can be quite valuable. As I mentioned above, support groups are great for this. Beyond that, there are many individual consultants who have had the personal experience and now help others do it. One incredible resource here in Phoenix (Scottsdale) is Senior Living Advisory Group, led by Steven Chung. There are resources like this in all major cities, so poke around online a bit or ask your local aging resource or Alzheimer’s Association.
Be patient with yourself or your family member who is the primary caregiver. Give her time, but also don’t let her ignore it. She/he deserves time and peace.