Someone to Care for Caregivers: Karen Bragg's Story

Karen Bragg works as a Caregiver Companion for Elder Independence of Maine (EIM). For the Caregiver Companion Project three EIM employees have been trained as Alzheimer's specialists, working in the homes of consumers who receive services. The Caregiver Companion's role is to work one-on-one with family members who provide unpaid care for their loved ones. Family members of consumers who have Alzheimer's and dementia often don't receive recognition for the support they provide. Karen and the other Caregiver Companions work specifically to help meet the needs of these family members. Karen is unique, as she is the only EIM employee who works as a Caregiver Companion full-time. Karen is a compassionate, thoughtful person who is sensitive to the needs of those she meets with. Her own experience as a family caregiver is what led her down the path to this "dream job," and her genuine compassion and insight into the situation for family caregivers is what makes her excellent at it.

Better Relationships, Better Jobs

I'm an Alzheimer's Specialist and I work with the Caregiver Companion program at Elder Independence of Maine. EIM connects people in Maine with home care services, coordinates with families to have PCAs or CNAs come into the home to care for a loved one. EIM clients are assigned individual Care Managers and if they have any problems at all the Care Manager will take a look at what's going on and try to arrange to have their needs met. When the homecare services are being arranged for a consumer with Alzheimer's or dementia, they call me. I go in and work with the primary family caregiver in the home.

Caregivers tend to be spouses; many times the wife. But I have husbands, and daughters and sons and grandchildren. I make contact with them. I work with their Care Manager so it's kind of a collaboration between us. We're updating each other about what's going on in this family all of the time. I give the caregiver a call and ask how they are doing. I say, "How are you doing?" Family caregivers are used to everyone asking, "How's your husband doing? How are services going for him?" No one asks the caregiver if she's doing alright. There's so much going on that the caregiver is forgotten about. Many times just hearing that question is an opening for me to start a relationship. I have caregivers that I take out for coffee or lunch and find that getting them out for even short periods can be a huge benefit for them. I support family caregivers by providing them education through written materials about Alzheimer's, books, fact sheets, and referrals. If they need to know where to go to for a support group, if they need to know who can help them with an application for services, I hook them up with phone numbers for help. I know about most of what's out there to help families living with dementia and Alzheimer's. I can tell them there is a phone number they can call 24 hours a day, 365 days a year and get a live voice. Someone will listen to them, someone will try to help.

My job is to try to make the family caregiver's job easier in any way I can. Often, since there are new PCAs assigned to the family through EIM, I end up acting as a mediator between the family caregivers and the professional caregivers they have coming into their homes. This is a new experience for the family caregiver, it can be difficult for them to adapt and sometimes there is tension there. The family caregiver can put too much onto the PCA. They ask too much; they want their whole house cleaned and that's not what the PCA is there for. It's important for the professional caregiver and the family caregiver to get along. I try to bring some balance to the relationship. I say, "You know, this is what the PCAs are here for, to help with this, this, and this." I try to help them focus on what the PCA will do and to accept that and be appreciative.

I understand how tense the relationship between family and professional caregivers can be because I was a family caregiver for five years. When I was in my twenties, my grandmother lived with my family in my home and she had the worst form of Alzheimer's. She was yelling all of the time and she had no short term memory at all. Our family wasn't sleeping because of it, and I had young boys and a husband. It was really rough. I was going to RN school and working full-time. I privately hired a couple of people who came into my home to help with her care. I tried different people, people who were supposed to be professional PCAs. I would watch many of them walk right past my grandmother and never say hello. I would watch them throw her dishes in the sink at the end of their shift. I wasn't asking them to do my dishes for me, but they wouldn't even do her dishes from her meals. I was a tired family caregiver and sometimes the emotional strain of having the PCAs come was very hard for me. I felt that someone needed to be out there saying, "All right, PCAs, you are very important. I wholly believe you are so important and I couldn't have gotten through that time caring for my grandmother without you. If you thought more about what's going on with the family caregiver it would make your work environment better every day. If you thought about the person with dementia and thought about brightening up their day or doing something a little extra, it would make the relationship and the job better." I really believe that caregivers, clients and PCAs all have to be remembered and respected for things to work out.

Being a caregiver for my grandmother changed my whole direction. I didn't finish RN school and I don't regret that at all. I started a homecare agency that was run on my philosophies about creating a relationship with family caregivers and with clients. I knew some really good PCAs in the area and recruited some great people. Before we even started I asked them, "Do you know how it felt for me to see PCAs come into my home and go right past my grandmother and never say a word to her, or me? They weren't treating her like a person, and that made me feel even worse because I couldn't do anything about it. I needed them there because I needed help." It was an important awareness, and that awareness helped good PCAs do an even better job. I raised their wages. They made more money at my agency than they did anywhere else, and I always made sure I recognized them and how essential they were. At the same time I loved hearing stories from family caregivers that would call and say, "Oh, you wouldn't believe. We baked cookies together while my husband was napping!" I loved the PCAs that worked for me, but I always had a strong connection to those family caregivers.

I loved that company, it was my baby. But it also became a seventeen, eighteen hour a day job sometimes and so I sold it in 1999. I took a job with Elder Independence of Maine as a division assistant, just helping do general work. Then the opportunity came up to be a Caregiver Companion and work full time with family caregivers and I thought, "My dream job! Finally!"

Best Friends™

I often teach the Best Friends™ approach when I'm working with family caregivers. Beyond lending a sympathetic ear or getting a caregiver out of the house for a while, I find that talking them about the Best Friends™ approach can really help them to have better interactions with their loved ones every day. This approach can help people to come to terms with what's happening. What if your husband or your grandmother was the rock of your family; someone you always turned to, someone you could always cry to? That person always held the family together financially, emotionally and all of the sudden that person gets dementia. It's so hard to accept that. It's so hard when you always went to your mom or you always went to your dad or grandparents, you always turned to your husband and you always had that support system there and suddenly that person is still there, but that source of support is gone. It's a huge loss and they're grieving that.

There's an acceptance with the Best Friends™ program. It sometimes helps to show them a fact sheet or give them a book on what's really happening. People don't understand that Alzheimer's is a disease in which the brain cells are actually shrinking away. They think that they can help it, help get those memories back but they can't. As hard as it is to accept that you can't look at your husband or mother the same way anymore, you can still love that person and learn to look at them a different way. I go into the situation and say, "Of course you can still treat this person with love and patience; they may not be able to identify as a husband or mother, but what about as your best friend?" If they can accept that new role for their spouse or parent or grandparent, the situation can really turn around for that caregiver. It can help on the road to acceptance, and it helps them both preserve dignity. Dignity is really important.

The person with Alzheimer's is living a different reality and most caregivers have no idea how to deal with that. On Thursday, when your husband of thirty years is telling you that it's Friday, of course your natural reaction is to go, "No, it's Thursday!" It's not going to help. He truly believes it's Friday. If a caregiver can to learn to accept it and let it go, it can make things go much more smoothly. Then you have severe stages of Alzheimer's where the client doesn't remember their spouse. That's so hurtful for caregivers. I go into so many homes and the caregiver says, "He doesn't remember me!" They're trying to make sense of it, they just cannot believe it. "You know me, of course you know me. You've known me thirty years; you married me." But the person with Alzheimer's just doesn't remember. I try to be gentle, help them come to terms. We have to talk on a very personal level. Once caregivers learn to accept that they can't get that old husband or parent back, then they want to try to learn how to interact in ways that will make their days together go more smoothly.

Usually I don't even meet the client with dementia. I work solely with the caregiver, and try to get her out of the home so she can have a break. If the caregiver wants a better understanding of the Best Friends™ approach, I will actually go in for an afternoon and meet the client and try to role model to help teach the caregiver how it's done. Sometimes Jack is sitting here and he says it's Friday and the wife is frustrated. "It's Thursday, honey. You know it's Thursday." I gently introduce a different idea, which is to accept that Jack really believes it's Friday and by trying to convince him it's not, it may just confuse him and make things tenser. What if we accepted that and tried to let it go? I smile and say, "Yes it's Friday Jack, it is. And it's a beautiful Friday." I just let it go, then I redirect. "Your hair looks great" or "Your sweater is so pretty. Are you having a good day?" If the caregiver can let it go and move beyond it, it makes the client more peaceful and can make their interactions much smoother.

The other thing with role modeling is when the wife says, "Jack, it's Friday and it's 11:30. You've got to go in and brush your teeth because we're going to have company over later." Caregivers want to give information to try to orient the person, but often it is more confusing than helpful. You can tell a person with dementia or Alzheimer's what you're going to do, they don't need to be led around without explanation; but explain things nicely, and shorten and simplify. I'll go over to Jack and say, "Jack, we're going to brush your teeth now." That's all I say. When Jack understands that and responds, it's great and the caregiver will be really pleased and encouraged by that. I love seeing them realize that if they can learn some simple changes, their lives with their husband or loved one can be more peaceful and they can communicate and have happier days together. I'll start singing to the client and I can see that the caregivers are thinking, "What are you doing?" But when they see their husband start to sing, they might start singing, too. The client remembers those songs, and it lightens things up. When I leave I try to leave the caregiver feeling a little bit better, even for that day. Even though I worked with the client it was for the caregiver's benefit, it was to make things a little bit easier. I really get good results with using the Best Friends™ approach. I'll come back again the next week and if the caregiver has been continuing to learn and try to use the program, arguments will often become fewer. The caregiver is learning a new way of communicating with the person, and life can be more peaceful.

Sometimes I meet a caregiver and I know it's not a good situation anymore. For the five years I cared for my grandmother I had nobody to turn to. My husband would say over and over, "You can't do this anymore." The more people would say, "You can't do it," the more I hid things. It would get really bad and I'd be totally burnt out and think "Oh, god, I don't want to let my husband know that I'm having a really hard time." I didn't want to stop being a caregiver to my grandmother. I was the only one who could say that my grandmother needed to go into a nursing home. I didn't take care of her until she died; I just finally said "I can't do it any more." Caregivers hide a lot; they cover a lot of pain because they don't want to have people say, "You can't do this anymore." What I say to them is, "You can do it for as long as you feel that you are able, but you're the only one who can say, 'Now's the time.' You are the only one who can make that decision. It's not going to be your daughters, not going to be your sons, it's not even going to be the doctor." That caregiver, that wife, that husband is the only one who can say, "I've had it." They need to realize that it's affecting their whole life. And sometimes a nursing home is the best option when caregivers just have total burnout. It happens and it's okay. After their husband or wife goes into a nursing home, I might call that caregiver in two weeks, three weeks to check in and say, "How're you doing?" Even if they visit the nursing home every day, they're still amazed at the weight that's off their shoulders.

Giving 100% Every Day

May 6th of this past year, I had a life-threatening illness and almost died. I thought one night that I was getting Strep throat or something; my throat just started feeling really full and sore while I was eating dinner with my family. I drove myself to the ER to get some antibiotics, and by the time I got there I could hardly breathe. The doctor said, "You have something called Epiglottisis," which is an illness that happens very, very rarely; like to one in a million people. My throat was closing up, and the doctor told me that I might die, that he couldn't even guarantee me thirty more minutes. He said, "Do you want me to call anybody?" I said "No, no I'm okay." I think I was in shock. So, anyway, they had to do an emergency trach with no anesthesia. I changed my mind while I was laying there and thought, "I wish I had said goodbye to my husband and my boys and told them I loved them." When I said that to myself I remember feeling like something was holding me; not like a person, but like a soft glove was holding me. I remember this most velvety voice said, "They already know," as beautiful as I'd every heard anything in my life. It was a comfort to me. Well, I came through it and feel like I was given a second chance.

In some ways, I think I have changed. Whenever I start to get uptight or anxious, a wonderful calmness comes over me. People that know me well have commented that they have noticed a change. When I sit and talk to caregivers facing stress in their lives, I think I am better able to calm and reassure them now. Our visits and phone chats are meaningful because it is special one-on-one time, time for connecting. There is laughter and sometimes tears. We talk about memories and how important our memories are. Best Friends™ helps with those memories because if a caregiver can accept that their loved one can't get their memories back, they can at least live peacefully for the rest of their days and make new memories together that the caregiver can keep. I talk to caregivers about memories because each day they spend with their loved one is very precious. I feel like I got the inside scoop on something, you know?

I have lost quite a few caregivers because once the consumer with dementia or Alzheimer's dies, we have to end our work with the caregiver. I had a funeral director tell me something once, and it really helped me when I've lost someone to dying. He said, "Every family that walks in gets 100% of me. I'm there for them 100%. But you know what? There's always another family who's going to need me. And I'm going to give them 100% of me as well." So I always have to figure out, "What is 100%?" I think it's just giving your time to somebody and letting them know they matter, and that's what I do. I give 100%, but I always know that there is another caregiver and I need to be 100% again for tomorrow.

I can completely wrap up my day at the end of the day. When things get really tense, I go for a ride and turn the music up as far as I can. I love music. I love everything, all kinds of music, even rap. So, I go for a ride and turn the music all the way up and it's such a release for me at the end of the day. I had a caregiver once whose husband was downtown shopping. I left the house and he saw me go booming by. He went home and said, "You should have seen that Karen go by downtown. She had her radio blasting." She calls me up and goes, "What is up with you?" I just laughed. I love doing it, I just love it. That's how I always let go of the day. I think it's a stress release for me. Things like this are important because I have to know how to take care of myself because if I didn't, I couldn't help caregivers. I have to be a caregiver to myself, just like I always tell caregivers, "Remember to take care of you, too." They are an inspiration to me, and I love my job. I can let people go when our time working together is done because I know that I helped the caregiver get down the road and be there for their loved one. It's a long road and it's a tough road, but at least they didn't have to do it alone.