Monday, June 25, 2012

Crossing Into a New Phase: End of Life Issues

I am not really sure how we got to where we are today. Mom started to get worse over the last two weeks. Less able to walk, less able to talk, and having a harder time eating. She went to the doctor last Monday and her mini mental-state test score went down from a 10 to a 3. On Wednesday she was in a wheel chair most of the time but could still walk a bit to get to the bathroom when we lifted her out of her chair. Over the weekend though she has gotten even worse.

With those of us who see her on a daily basis, she barely talks, maybe saying yes or no and two or three word sentences. She rarely opens her eyes and sometimes smiles. Fortunately when other people visit her or talk to her on the phone she speaks more so that is good. She can't feed herself at all and we feed her. She can't walk or support her own weight so we lift her to get her in and out of bed. She can't use the bathroom anymore. She now clenches her hands, which is very common in late stage dementia. It can be bad because the skin on her hands can breakdown. She knows who we are but usually doesn't say our names, except for when she asks for my Dad.

Today when I was there she never opened her eyes or talked to me. Yesterday she talked to me a little but only opened her eyes when my husband Jeff or my son Jeffrey talked to her. She especially liked when my son did some karate style moves for her.

While I take care of people in the end stages of life for my job, it is different when it is your own parent. I am still in a bit of shock as I did not think we would get here this quickly. It was hard for me to walk into her room the other day and see her looking like the clients I work with who are dying.
We are getting orders for hospice and for probably a Hoyer lift to transfer her in and out of bed. Starting tomorrow we will have two people in the house with Mom at all times, so we have hired caregivers 24/7. We have been unable to wash, turn, lift, and do basic care for Mom all on our own now that she has gotten so bad so quickly.

Fortunately Kendal at Home, a senior continuing care community that allows members to age well in their own homes, coordinated all of these things for us. In one day they found all the caregivers and will be getting in touch with the doctors for the hospice and all the orders we need for medical equipment. They coordinate all the equipment rental, all the care supplies, everything that we will need to make sure we can care for Mom safely and comfortably in her home. I am so glad my Dad joined the Kendal program because I don't know how we would have coordinated all this so quickly and also made sure we got people who were responsible and trustworthy. And, if there are any problems with any one system, we just call Kendal and they take care of it.

As we go forward I will keep you posted on what works for us in caring for her so that if you are in the same situation in the future you might get some help and support from what we do.

For right now, in terms of activities for Mom, she is not longer able to do activities. But, we can read to her the types of novels she has always liked. Since she does not open her eyes much reading and music would be a good option at this point. We can still try looking at photos when she is opening her eyes. We can talk about old fun family stories and just be there with her as best we can. And, since she is more alert when visitors come over, we will invite people over more so that she has some fun each day.


Rev. Katie

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