In most cases, the primary caregiver in any dementia patient is the spouse. But the spouse has a much more intimate connection than just being a caregiver. There are issues the spouse must deal with that a caregiver will never deal with. The most important being the pending loss of your spouse. That loss starts long before death. Memory loss, sleep issues, ugly dreams, disorientation, sexual dysfunction, sun downing, mood swings, and many other issues. Some begin early and some come on later. But it is the spouse that has to deal with each and every one.
I have punched my wife, HARD, acting out a dream. Woke her up in the middle of the night and asked her what her name was, had bathroom accidents in the shower and my pants, and she has spent many an evening with me being so grouchy and jumpy that bed was the only good place for me.
Then there is the loss of the marriage partner. The person you used to make decisions WITH! The other person who drove the car, mowed the lawn, washed the car, or even cared that the car was dirty! You see, the personality of a dementia patient completely changes. Apathy, depression, lack of interest in daily living,decision making ability,are all gone or severely degraded.
All of these losses are uncompensated! There is no one to help your spouse with the things you used to do. And, it is never going to get any better. Truthfully, it is going to get much worse! No wonder many marriages end in diverse for dementia patients.
I am blessed, my wife is my best friend. She is the person I want to be with, share everything with, and trust, totally! We are committed to seeing this through. Committed may be a destination however! Lewy Body Dementia is a crazy journey. But I know we will make it together.
If you are related to someone who is the spouse of a LBD patient, help them. Be their friend, support, and shoulder to cry on. Spouses that are caregivers lack a person to share the frustration with. Someone that has a shoulder to cry on.
I appreciate the sacrifices my wife is making. This is certainly not the retirement we planned. But, we are together and working for the same goal. We are in love and respectful of each others abilities and problems. I am blessed. I pray others are too.