From the January 2006 "Many Faces of Lewy Body Dementia" series at Coral Springs Medical Center, FL. A presentation by Tanis J. Ferman, Ph.D., Neurologist/Psychiatrist Mayo Clinic Jacksonville, FL.
Video provided by the nonprofit Lewy Body Dementia Association. www.lbda.org Please contact us for caregiving support, more information and additional resources. Thank you.
Watching this full series (part 1 link above) has been a tremendous help in assessing Mother's needs, always on the lookout for any indication that contributes to excess disability. I see excess disability as mostly preventable.
As a now full-time care-giver, the issue of balancing needs is an something that can lead to excess disability if not careful. I have to continually check my 'self-talk' for negative, 'I should' or 'poor me' thoughts which will affect my sense of well-being, and then Mother's as a result. If stress builds in me, then Mother's quality of life can be affected. Transference is not dissimilar to the mother-baby sensing interactions I have found.
- What I have discovered personally, in my situation, is the area of 'mirroring' directly affects Mother's mood. If a support-carer is anxious, e.g. lacking confidence in the use of the hoist, then Mother will immediately become anxious and have a negative attitude to being hoisted.
- If I inadvertently express tiredness at the end of a day, Mother will decide she is a burden and resist assistance. Then behavioral changes like refusing turns happen, which lead to Mother waking in the middle of the night with gas pains in her gut from the immobility. Turning immediately relieves this.
- If I start the day with use of my cross-trainer exercise machine to burn off stress, I find the endorphin's give me a positive sense of well-being and Mother seems to naturally respond with a very cheerful mood and has a good day.
- Mother responds well to support-carers who act with confidence, (even if they aren't). Mother feels confident in the helper if she sees a confident reassuring manner.
- Alternatively, if a support-carer struggles physically, for example, with assisting me to lift Mother up the bed with the sliding sheet , then Mother will go all quiet and talk later about being a burden and wanting to die because she can't do anything herself.
- The opposite happens with another support-carer who is well able to physically assist with the lifts and turns. Mother will enjoy the attention, chuckle and giggle her way through the procedure, giving a sigh of relief at the end of it, with an approving smile. She feels cared for and not a burden!
- I routine use antibacterial liquid soap in the wash water, which has also succeeded in getting rid of a hospital introduced infection and kept Mother free of UTI's (urinary tract infections) since.
- Similarly applying deodorant under washed and dried folds has kept heat rashes away successfully.
- Applying moisturizer to her skin to boost skin circulation in her legs, seat and vulnerable pressure points (observed by skin discoloration) morning and evening has kept Mother pressure area free and skin as healthy as possible.
- Mother regularly has Manuka honey, lemon & ginger green tea's to boost her immune system.
- I give her inhalation oil drops on a handkerchief attached to her night wear, and 'vicks ' type chest rubs to keep away cold and flu bugs over the vulnerable months and Mother hasn't had a virus yet.
- Mother needs to put on her 'Bling' (rings and ear-rings) on daily, along with her face cream and lipstick daily. This helps her feel good and ready for visitors. I also apply toe-nail polish which Mother loves. At present she sun-baths her legs lounging in the morning sun, browning them "to get her Maori-ness back" as she says.
- Mother is very sensory, so the smell of freshly percolated coffee in the morning and the smell of baking bread for lunch adds to the atmosphere Mother enjoys.
- Our Border-Collie dog has a thick, fine soft coat that Mother loves to touch when freshly shampoo'd and brushed. There is a bond between the two, both aging females. If the dog looks worried, Mother will worry also. If the dog is happy and playful, Mother is also.
There are so many variables every day, but keeping to the basic routine to avoid complications works well, no matter how tired you are, the alternative can lead to a decline into excess disabilities. The main challenge is keeping a healthy mental attitude to cope with witnessing the slow deterioration which will eventually lead to death. My challenge is to assist Mother have quality in her life and spend these precious days enjoying her company. My time is the next season after she has gone. This is her time now. It is changing me, bringing out my creativity, for the better I hope :)
