Alzheimer's Support Network


 

Bobbi Carducci  (August 20, 2014)
Author of Confessions of an Imperfect Caregiver

                                                                     
         Bobbi Carducci Website                            The Imperfect Caregiver Website  
    http://www.bobbicarducci.com/                       http://theimperfectcaregiver.com/

Where did you find the strength? 
I did a lot of praying and a lot of crying over the years.  Prayer and love got me through. The love I had for Rodger, and the love my husband had for both of us. He got us through a lot of tough days.  


How many times did you feel like giving up completely?

There were many days when I felt I didn’t have enough strength to go on, especially when it seemed like I was failing him. Instead of improving in my care he continued to decline and I felt a great deal of guilt.


What kept you going?
I knew that if I gave up and put him in a nursing home he would die very quickly. Rodger did everything he could to hide his symptoms and would tell medical professionals to go take care of the sick people as he could take care of himself. Even when he was in pain or quite ill. I knew him well enough to be able to tell when this was not true and insist he get treatment. He would also spit out his medication when nurses turned their back. He could not get away with that with me.


Given all your experiences, what advice do you have for other caregivers?

First and foremost, be kind to yourself. By that I mean don’t second guess your decisions or feel you are failing if your loved one worsens. Understand that you are human and it’s normal to feel angry or resentful at times. You don’t have to get it right every time to be doing a good job.  I finally realized that because of the care I gave him, he had many more good days than he would have had otherwise.


We are in the middle of writing a handbook for caregivers to help them deal with hospitalization for a patient with dementia.   I would love your thoughts on this topic.
When dealing with loved ones with dementia it’s important to understand that you can’t convince them their perception is incorrect. Wherever they are in their mind is very real to them. You have to deal  with their reality not yours.  If the situation is moving a loved one into a care facility and they don’t want to go, don’t argue. Make the arrangements and on the day of admission get the person ready to go. When you arrive at the facility show them around and tell them they are going to stay for a while. Visit the place ahead of time and place some favorite mementos and pictures in the room. Make it as homey and comfortable as possible.  Have some music the person grew up with playing softly in the room.  Music often eases the stress of dementia patients and brings up good memories. It’s never a good idea to be confrontational with someone with dementia.  If they are combative, walk away. If they are insisting they haven’t eaten 10 minutes after a meal, give them something to eat. Like dealing with toddlers, it’s best to find a way to say, “yes” whenever possible.


We also have so many Veterans.  What advice can you give caregivers trying to get help through the VA?

Fortunately we didn’t have to apply for help when dealing with the VA. Rodger was a patient in that system since 1949 and had a 100% service related disability rating, meaning all his medical care was taken care of at no cost to him. However, when dealing with new doctors or medical personnel as he progressed I found it very helpful to have his medical and service records with me and to include the patient advocate when arranging a meeting between me and hospital staff. Also, remember that your representatives in congress are very interested in the quality of care our veterans receive. If caregivers feel their loved one is not receiving proper care in a timely manner they should contact their congress person and make him or her aware of the situation. In fact, merely mentioning you will do that can get things moving sometimes. It did for me. However, I would only do that when absolutely necessary.


We are advocates for our caregivers and patients in our local memory care facilities.   We will sit in on care plan meetings, and help families ask the hard questions.  It is often easier if we are the ones demanding the answers.
You are right, having an additional advocate in these type of meetings can be a great help. It is also important for the caregivers to be calm and informed when meeting with staff.


In general, what advice do you have about walking the line of being an effective advocate for your loved one vs. pushing too hard and
rocking over the boat.  (So many of our caregivers are afraid if they make waves, their loved one will be kicked out, or treated badly because of it.) 
 
The most effective way for caregivers to advocate for their loved ones in a hospital or care facility setting is to be seen by those working in the facility as part of the team. That means speaking to them respectfully and letting them see that you are trying to make things better for your loved one and easier for them. Visit as often as possible and let the staff know your wish to be as involved as much as possible. Drop in when you are not expected to see what happens when you’re not there. Report any problems calmly and with an attitude of, “how can we work together to prevent problems in the future.”

I kept up with all of Rodger’s medications and health issues and spoke with his doctors using their terms as often as possible, many asked me if I was a nurse. I am not a nurse but I did take a course to become a medical assistant when I realized how sick Rodger was. It helped them see me as team member.  However, when anything occurred that put him at risk in any way I could be very firm when letting them know about it.