Wednesday, October 31, 2012

Home Care During Natural Disasters

Hurricane Sandy affected many of us in Cleveland and left quite a bit of Cuyahoga County without power. Mom and Dad have been without power for three days and the city estimates that most people will not regain power for another three. Being without power is difficult for everyone, but I did not realize what it would be like for someone who is ill and homebound.

If my husband and I did not have electricity, we could go stay with friends, or go to the church to warm up, recharge our phones, and even use a microwave. But Mom can not move and we can't just take her to the church or even easily bring her over to stay at our house, where we do have power. When we bought our house, we specifically looked for a house with a bedroom on the first floor so Mom and Dad could stay here if they ever needed to. However, to get Mom here now would mean getting the Broda chair, all of her adult diapers, wipes, bed pads, other supplies, and the Hoyer lift into the house. Not an easy thing to do and quite stressful on Mom. Hospice offered to take Mom to stay in a nursing home until the power came back on but that would be so traumatic for her that we decided not to do it. When I was working as a chaplain in home health care, we would take people for respite care for five days to nursing homes so the family can have a break. However, it was such an ordeal to get the person ready to go, then they rarely ever adjusted well to the move, and their care was not adequate often resulting in missed medication, illness, and bed sores. We just could not put Mom through that if we do not have to.

Mom's makeshift bed near the fireplace.

In order to make Mom as comfortable and safe as we can, we moved Mom, the lift, and even the mattress into the family room where there is a fireplace so she can stay warm. We actually had to put the mattress on top of the couch and coffee table (don't worry, it is the strongest coffee table ever) and we set up chairs around the bed at night for guard rails. Mom's wonderful caregiver Ana has been there every day and knows how to make great food out of what is available in the pantry. I am able to wash any laundry at my house and we can bring them food they might need. We are just lucky Mom is not hooked up to any electrical equipment.

If this goes on for too many more days, we can move all of Mom and Dad's things to our house, but really any move would be very stressful to her. We also have the option for her to stay at Westlake Village since they have opened up rooms at reduced rates for people in need. We know she would get great care there.

It has amazed me how so many people have been offering their homes, food, and resources to others in the community without power. Our church has been open for people to warm up and recharge and invited families in tonight to play games and watch movies. There are SO many people willing to help right now, but I never realized that when someone is homebound it is not so easy to help them in a situation like this.

If your loved one is in a home hospice or home health situation, please know that you do have options if there are places that are open in your area. If your loved one is in hospice, your hospice provider should have called you and offered a care facility placement for them. Many local retirement communities and skilled nursing facilities will provide reduced rates for them to stay there until the power comes back on. You can also contact the Red Cross and local food pantries if you need food and Meals on Wheels can also bring you hot meals.

Stay safe everyone!


Rev. Katie
Headlamps come in handy during a power outage.

Wednesday, October 24, 2012

Dealing With "Dementia Loss"

Mom has progressed so quickly with her dementia in the past three months, and as the holidays are approaching I am thinking about how to handle the holidays with a loss. By loss I mean what I would call "dementia loss" which is not death of the body but loss of relationship with a person, loss of ability, and loss of communication. 

Last year she could make her famous Christmas cookies with me. Last year she could give advice on cooking the Thanksgiving turkey. Last year she could walk, talk, feed herself, and go to holiday events like our annual extended family trip to the West Side Market. This year is so different. We can't really chit chat about tips on making stuffing, or walk through the Market together and get the mincemeat for the pie. We will have to feed her her holiday dinner.

Making Christmas cookies with Mom last year. Christmas 2011.

Mom is still here in many ways and often I see glimpses of her personality again when she laughs at things we say or when she surprisingly comes out with great one line zingers when she looked like she was staring off into space. However, she is not here as well. While I feel blessed when she connects with us through smiles and simple words, we can no longer have conversations together. I can't ask her for advice on how to make a fantastic holiday like she always did. It is devastating to be with your own mother and never have an actual conversation. Every time I am cooking and mess something up, I go to the phone to call her, but then realize I can't. I try to embrace what we still have, but I do realize how much we have lost.

I try not to think of all of the things we have lost because that makes me too sad. I try instead to think of ways to still include Mom in what she always loved so she knows we care about her and want to help her do what she likes. 

Mom can not really move her arms and hands anymore so I can't make cookies with her this year. Instead I can make the cookies while she sits at the table and I can talk to her while I do it. She can not go to the West Side Market but at least our house is accessible enough so that she can come for a few hours of the party in her Broda chair. We can't decorate the Christmas tree together, but I can bring out the ornaments and talk to her about them as my son, husband, Dad, and I hang them on the tree.

This holiday season will be hard for us like it is for so many people who have their first holiday after a loss. You think of all the things your loved one would have done or would have participated in. You see the glaring holes that are left where your loved one used to be. The thing that is so hard about "dementia loss" is that you keep losing the person over and over again and there is not really any closure. This year is a significant loss and next year if we have lost Mom in body as well, then we have another holiday season of grief and loss on another level.

Blessings to you during the holiday season,

Rev. Katie