Being There for Loved Ones with Dementia
Today I spent some time with a woman who told me pieces of her journey with her parents. Her parents moved in with her and her family awhile back, her mother suffering from dementia, her father was helping to take care of her. As I have heard the ongoing story unfolding over time, today I heard the update; her mother was placed in a group home which is about a half-an-hour away.
Of course I understood, with dementia, there comes a time when more help is needed. The part that took a hold of my heart and hasn't let go, however, is that the woman and her father only see mom once a week. This is heartbreaking. I heard about when the mom was first put in the home, and how when they visited and mom would become horribly upset at the end of the visit because she wanted to go home with them. So the answer for them which was probably suggested by the caretakers was that they saw her less. Utterly heart-breaking. Now the daughter is feeling guilt for putting her mother in a home, yet this is all her family can do, short of stopping work and caring for her. Sometimes dementia care requires a team of people. Stopping work for someone could mean that they need to move, to spend less on housing and to make ends meet, sometimes that is the best option. We can't judge eachother's situation; as we don't know the intracacies of such difficult choices and what goes into them. However, it's important to make the most loving decisions and what works best for all involved. One way to figure out the best decision is to consider ahead of time that after your loved one has passed behind the gates of death, how will you feel about the decisions you are making now? Will you feel great regret? If so, figure out where your greatest regrets would be and make changes in those areas now, trying to do what's best for everyone involved. You don't know how long your loved one will suffer end-stage dementia, and sometimes it requires a team of help at this point.
Take your loved one outside to breathe the fresh air. I asked if the mom was able to go outside. Imagine all your life, living with your family and enjoying the sun on your skin and the flowers in the yard, now being couped up in a room, or a room and a living room with strangers. This could be someone's worst fear. How traumatic and utterly heart-breaking for the mom to suffer tragedy upon tragedy.
There can be other answers to help her with the change of lifestyle; it doesn't have to mean seeing her less, even if it's upsetting her. You may be able to prearrange with staff that she is given a pill that helps her become sleepy after about half-way into your visit, so that when you leave she has already fallen asleep. When you're there, you can help to listen, talk, read to her and share funny stories that help her laugh. It doesn't have to hurt so much.
It's so important that your loved one with dementia gets to see you, hear your voice, hold your hand. That you read to them, spend time with them. The road to the least regret is the road that you are able to look back and smile upon; "I was there, I read to her, I did all I could, I held her hand, I brushed her hair, I made sure she was warm and changed, I brought her one of her favorite foods... I showed her love, I spent time with her..."
People with dementia have feelings. Help them feel loved.