I have learned that is is imperative that someone with LBD have an extensive network of support. There are the obvious members of this read; Neurologist, GP Family Physician, maybe even a physical therapist. But what about a Psychiatrist? Or a Psychologist? A strong medical team is important.
But what about respite care? How does your caregiver get a break from the crushing daily stress of taking care of everything you need?
I can tell you that having a counselor to discuss the many mental disturbances that come with LBD may be the most important person on your team. It does not necessarily need to be a Psychologist. It can be a trained mental health counselor or even a Pastor. But you do need someone to talk to.
Physical therapists deal with movement disorders of all kinds, including the swallowing issues that cause us to ASPIRATE! That is the number one cause of death in LBD patients. I am having en increasing problem with aspirating. Even the rote reflex of swallowing saliva has caused me to aspirate recently. I have an appointment with my Neurologist soon and I will ask for a referral to a physical therapist for this issue.
Friends, are the most important part of your support network. Nothing cheers me up more than a call from my best friend Jerry Hart! I can be ME with him. We talk Navy issues, cars, football, health issues, even politics. Each week, he and I spend at least an hour on the telephone and it keeps me going. Of course, having friends that can come sit with you while your caregiver goes out to shop, Bible study, or with friends for a break is important also. I remember when I had my colon surgery, almost 13 years ago. The two days before the surgery, I had to fast. Jerry sat with me both days while my wife was at work! His company, our conversations, made me forget that I was not eating. Friends like that are few and far between. If you have one, you are blessed.
I know some folks that hide their disease. They try to look normal. They do not want anyone to know and do not want sympathy. I suffered from part of that fantasy. While I embraced LBD, I made light of it! And I did not want any one's sympathy. Well, now I realize I need every one's help and I no longer try to look normal. As a matter of fact, I am completely open about my disease. Why, how else will someone learn about the second most diagnosed dementia?
LBD is a frightening disease! It is not something you want to face alone. So having a complete support network is important. I am sure you can add other members to this team. The more the better.