Have been asked to speak to medical residents at Brown Medical School re the caregiver burden. Other panel members are a psycholgy researcher, a geriatric psychiatrist, and a nurse preactitioner. Please help me to make this a meaningful representation. What would you say? Thanks.
To listen to the caregiver and believe what is being said and don't jump to premade conclusions. No one really likes to listen, everyone is always ready with a quick "remedy" for AD.Listen, listen, listen. Good luck. Happy that we have a representative for Caregivers. You will probably be the most knowledgeable one in the room about what AD is all about.
The caregiver burden for me: Lack of sleep. Worry, panic, bewilderment. Lack of relief from round-the clock responsibility. Lack of recreation and vacation for years. Opposition from his family. Financial problems: his family emptied his bank accounts. Harassment from his family. My own age and personal health problems. No support from family members or others, except for on-line support group. His personality changes and his anger problems directed at me. The care facilities needed supervision, e.g. he was sedated without a doctor's order, not kept clean, wound dressings neglected, medications left loose in his room. Hiring and training of aides: some quit, some he fired others, some were incompetent. Feelings of isolation, loneliness, persecution by family, loss of friends because I wasn't available to them. Affected my studies at university. Affected my professional writing career. Sadness at his decline. Sadness of losing a partner. Sense of failure that I wasn't managing better. Blaming my self. Sense that my own life would be altered forever because I had lost time, energy, health and had moved from being a vigorous 71-year-old into an exhausted 82-year-old.
I had occasion to speak at UCLA. I told them that the MMSE scores, etc don't mean much to the CG when it's 2 in the morning fighting for the car keys. (that never happened to me, but other things did). I never got too involved in the medical/scientific part of AD--never cared all that much about plaques, tangles, etc. I didn't think that would help me in any way--that was their field. But I did need to know, in layman's language, why certain things happened so that I could understand what I could or could not do & how to respond. (Not that knowing that always helped either.) My doctor always listened to me, but I know others don't--the CG is the key to coping w/AD. Once I got into it, I felt everyone in the medical field--dentists, chiropractors, opticians, etc should take a course in dementia--the AD patient also sees all types of doctors, not just those for AD and, if possible, spend some months in an AD facility. You just don't know until you have the hands-on responsibility of keeping an AD adult safe, healthy, calm, clean, fed, entertained and happy--along with everything else one must do for themselves, running a home, caring for children, etc. Above all, be kind to the CG, understand the AD person you see in the office is not the same one who is raging at the CG in the home. AD people easily fool everyone, including the doctors, and don't say, 'he's too young,' you can get it in your 40's. Good luck. You are doing something very important.
Betty and Pavane..did any of your doctors ask specifically how you were doing? Mary..wow all of your comments were meaningful but your last comment resonated with me. Often I wonder if I will have any life left to live after he's gone.
I am the best tool you have for taking care of my Spouse. I don't have your education and terminology about his disease, but I have 24/7/365 knowledge of HOW my spouse is, regardless of how he appears in your 15-20 min. visit. Be straight and accurate with me. We can do the best job of his care if I understand what to do; why it needs doing. what to watch for, and what might happen that we don't want. Answer the phone, andget back to me asap. I won't call unless I need to, but when I call I need help then. Whatever specialty you plan to go into, if thereis any possibility that it will deal with Dementia Patients, get some serious contact practice in, on dea;ling with hem. Learn first hand that they can't follow directions or answer questions. They may pee in your potted palm. They may become afraid or beligerant. Since I have little or no help taking care of him and our household, try to look out for me.At least ask how I'm doing. Any mechanic will tll you to takecare of your tools. You're no good without them.
I totally agree with the comment for doctors, social workers etc to LISTEN TO THE CAREGIVER AND NOT DISMISS US AND TAKE TO HEART WHAT OUR LO SAYS ABOUT HIS OR HER CONDITION...YES I AM YELLING THIS BECAUSE OUR PCP TENDS TO DISMISS ME AND SEEMS TO ME TO AGREE WITH DH AND IT FRUSTRATES ME NO END.
Outside of that, the long list above about the caregivers frustrations, loss, overwhelmed situation pretty well covers it...
Mimi, sure this is something all of us have encountered. Maybe I should ask them...What should Mimi do? How should she demand to be heard? Thanks for your help.
the first line of defense for the patient would be his caregiver, ie spouse who lives with them 24/7. listening to what the caregiver NEEDS to relieve their stress with regards to the round the clock job of trying to keep them at home as long as possible is key. they should know that the patient tends to have the ability to diffuse and deflect signs and symptoms while at dr visits for 10min. we see them over and over be able to pull the wool over professionals visits only to crash once they are out of the office! lines of communications are imperative with regards to medication adjustments.
scs--I have spoken on panels similar to what you described. Afterwards, was told that the "real people" are always the most memorable and compelling presentations. Just describe how your LO's condition has affected your life. The other posters have given good specifics. Make sure that you include that dementia caregiving is such a difficult job, most caregivers feel it is necessary to take tranquilizers or anti depressant meds themselves in order to see it through. It takes a team to properly care for a dementia patient, but most of us are forced to do it on our own. With the loosening of bonds of the extended family and over-scheduled pace of life these days, many caregivers find themselves with no support system, that was formerly available to previous generations.
Take Lloyd's neurologist...I don't want him. But in view of the fact that we only have to tolerate each other twice a year, I'll keep him. We agree to disagree and he tells me I am his hero. Now our PCP is another story. Every time the neurologist refuses to try new things with meds, I go to the PCP. I state my case, he gets out the PDR, and writes the prescriptions. Hence, Lloyd is on Marinol and liquid Neurontin. He has been a godsend and his thought is "anything is worth trying at this point". He delivered my 42-yr-old daughter and I so hope he hangs in there because I don't know what I would do without him. I am thankful!