No Bones About It

This has been another week where the focus of conversations I have had are dealing with issues of how to handle life being a care provider while also handling the other roles of spouse, child, parent or grandparent, friend and as a person with an occupation When the medical issues and the nutritional issues and the cognition issues all come into play as part of the concerns with trying to do the best possible job of supplying that care, then it can be so overwhelming for so many.
The way I see it, there are four bones that are needed by the one who is primary to giving care.
First, it takes backbone. The job of caring for another person whose memory is declining takes an enormous amount of strength. I was just talking with a daughter who is the primary care giver for her mother and although she has four siblings, they are out of state and do not understand what it takes for her to give care. So she feels the weight of the responsibility of trying to do the best she can for her mother. We talked about the feelings that responsibility evokes. It takes courage to try to meet needs of the person with memory loss, handle their anger, to get them to all of their appointments, to shoulder the burden of knowing how to help them move forward and to navigate through all the paperwork and people that is attached to the diagnosis. In addition, often the person will need additional physical assistance with dressing, bathing, ambulation and transfers. So having a strong backbone is one of the first requirements for being a care provider.

Second is a funny bone. Care giving takes a sense of humor. It is so necessary to find a funny side in order to survive. Most of the time being able to laugh when the choice is to laugh or to cry, is a healthy outlet to get through the next moment. I can think of the time when my son was just learning to use his new motorized wheelchair, He was still very young and didn’t know to watch out for things behind him when he backed up. He backed the chair into an étagère full of cherished knick knacks, some which were family heirlooms. They all came crashing to the floor and smashed into pieces. His care provider and I were holding our breath for fear that somehow my son would be hurt or cut. He wasn’t. Then our attention turned to what had happened but before either of us could say a word, out of the mouth of that little one came the words, “Oh my, all good things must come to an end”, quoting me from an earlier moment. It turned the moment into one where we all had to laugh. And while I felt the loss, the laughter and the truth of the statement made the moment pass as a new memory for our family’s history books. We all go through things while tending to the needs of another. I remember reading at one time that it is often the mistakes or seemingly tragic moments that are the ones that become our reminiscing stories. I can think of times when I would tell a good friend who could usually see the funny side of things if something was burdensome and she could make me laugh about it. I encourage everyone to find a person like that. So if we can let it tickle our funny bone whenever possible, it is much more fun to return to the story at another time or share it.

Next is the wishbone. This covers much of what I was talking about in last week’s post. Look for hope in those moments when a connection is made. Hope and joy, when it comes to dementia, takes on new definitions. With dementia, I believe hope is looking for the relaxation in breathing, the eyes that say what cannot be said in words, the smile, the occasional clarity of moments – the never giving up the anticipation that a connection can be made, which can be the means to carry us to the next connecting moment. And the joy comes when that connection is made.
One of the hardest things when living with the day to day challenges of dementia, is that just as you are accepting the “new normal” of what is taking place, very often there is a decline and you have to go through the grieving process again and adapt to new changes. That is why desiring positive moments and looking for them is OK. Whenever I was with a person, no matter what stage of dementia, I found it important to talk to them as though they understood me. It was also important that I demonstrated love and respect. My tone of voice could talk to them even if my words could not be understood. One of the things taught at The Alzheimer’s Association was ‘Speak lower and slower’. I think of it as speak soothing and calming. It helps, not only the person but it helps when providing care, because it’s an approach which eases the spirit of the care provider.

Finally there is the tailbone or the “tale bone”. Sitting down to take the time to reminisce is so important. If the person can reminisce with you that is a wonderful gift. If they can look through pictures but cannot relate – tell them the stories. Even if they are in bed and seemingly can do nothing – tell them stories. We do this so naturally when we have babies come into the world. Before they can talk or relate or have any verbal language skills, babies are read to. Or it is very natural to see someone sitting in a rocker or chair, holding a newborn baby and talking to them; telling them all kinds of wonderful things. It is so easy to do for babies. Yet the person who has reached the other end of life who has lost verbal language skills, can no longer relate and cannot talk, need that kind of connection as much as the newborn. Stories can have miraculous impacts and I know that the care providers who realize this have been able to report some wonderful moments. The amazing thing is that each bonding moment provides another story. These are the things that become precious treasures. It’s memories that make us who we are and give our families their history. We leave a legacy by what our existence meant to this world. It is through the memories and stories that live on that we are remembered, so don’t forget the ‘tale bone’. Mary Ann