I have read extensively on the topic of caring for a dementia patient. Most of what I read is directed at the drugs available for the patient to slow down the progression of the disease and calm the patient. There are also extensive writings on what drugs NOT to give to those of us with LBD.
All of this research is very valuable and worthwhile. But, none of it addresses the patients need, hunger, and desperation to be intimately touched by the ones he or she loves. Hugging, kissing, sitting close holding hands, cuddling in bed help calm the dementia patient and make him or her feel loved, important, and wanted. Even listening to a story told many times by thee patient give that person self worth.
Putting it personally, there is little I can do to show my usefulness to how worthwhile I am. I cannot work, drive, even perform sexually anymore. As kiss, hug, closeness in bed or on the sofa bring back times of intimate relationships. Times of love and vibrancy,
Instead, we are left alone in our lift chair, or taking a nap alone, while the spouse continues his or her active, normal life. The patient is an after thought or worse, a burden. Who is going to sit wit Him while I go out to play? Kenny Rodger's song "Ruby, don't take your love to town" illustrates the emotions and frustrations of the handicapped individual.
Please don't replace us with activities that you could do after we pass! I have seen this happen to many times. Now, when the Dementia has progressed to the point where the patient is only a shell of his or herself, shorter visits, less in-depth conversations, and fewer memory exercises may be warranted But that Dementia patient, no matter war stage their Dementia is in, needs, requires, and searches out that intimate connection from humans and predominately from the Human they love!
Do care givers need a break? Certainly. Is respite care valuable and necessary? Yes. But doing your thing while the patient wastes away in the chair is not care giving, It is torture, for the patient. I know I have little or no value. But, telling me by you actions and interest that do not relate to me only make me feel more worthless and tell me you really do not care anymore. When we realize that is the case, Dementia patients tend to sit down and retract into their cocoon. They sleep more, eat less, participate less in any activities, and refuse to do things they once enjoyed, Why, because they were told they are now useless, unwanted, and even repulsive.
As progress I see these things occurring in my life and impacting me more and more. There truly is nothing I enjoy to do. My worth is that of a little child. Sit there, don't tough anything, be quite, and don't embarrass me.
PS: One more important point. Dementia, no matter what type is a death sentence. We are dieing because our brain is failing, We may mentally die before our body quite. But we are going quick. Drugs slow the progression of the cognitive decking, sometimes! But, death is just around the corner just the same. That kiss, hug, special whisper in the ear may be the last one your Dementia patient hears.
I encourage you to think about your relationship with your special Dementia patient. How do you treat and interact with him or her. Put yourself mentally, in their position, an then see if you would like the treatment. It could be an eye opener.