San Diego Advocates Offer Advice On Caring For Relatives With Dementia

When a family member is diagnosed with dementia, you know nothing will be the same. Or loved one will be changing, the challenges you face will be different and how you relate to some of you have always known will become strange and sad. Publicly, with the wisdom of those who have cared for and loved people with dementia, there are ways to make things better. KUSI anchor and reporter Kristen Cusato has written extensively about her experiences as a caregiver for her mother and how to make life more positive and memorable for loved ones coping with dementia. I would like and -- like to welcome Kristen Cusato Think you for having me. And Mary Ball, president and CEO of the Alzheimer's Association of San Diego . Thank you so much for being here. Now, Kristen, your mother was relatively young when she was diagnosed. Yes, 61 years old. Which is younger onset below 65. What kind of symptoms let her to even check this out? It's not usually them. They don't realize things are changing. It's other folks. My grandfather, my aunts, and I was living here she was back East. It was noticing that her checkbook wasn't balanced and issue is a to the penny check but person. It was noticing that neighbors would say you didn't shut your garage door last night. Multiple falls, so gate issues, shaking, a bit of Parkinsonian tremors, body dementia which we just found out Robin Williams actually had. And there was some hallucinations. A lot of these things she actually thought my brother and I were sitting with her in her living room and neither one of us were in the same state. All these things put together and the neurologist, who we kept going back to determined that she probably had dementia. What is the difference between -- dementia and Alzheimer's? I think many of us are familiar with Alzheimer's. What is the difference between those two diseases? Alzheimer's disease is a form of dementia. Just like Louis body dementia is a form. About 75% of people who suffer from dementia specifically have Alzheimer's disease. They are all under that ability of dementia. With the Lewy body dementia you have different accumulations of protein in the brain. You will see a lot of the same symptoms and behaviors of people with Alzheimer's or another form of dementia. We always say to people, it's important to get the specific diagnosis, but at the end of the day, and people are struggling with memory loss and functioning, it doesn't really matter what you call it. From a caregiver perspective, we just need to get them help and support. Kristin, what kind of impact did the diagnosis and these changes say your family sign our mom, what kind of impact do they have on your life? Completely changed my life. I relationship with my mother was best friend, talking twice a day. I left San Diego and went right back there to the East Coast to go to care of her. I didn't want her to go through it alone. The first phone call I made when I found out about the diagnosis was to the Alzheimer's Association of San Diego because I knew that's where they would have a ton of information. They sent me things and I went back and suddenly became a bit of a parent. I became in charge of the medications and making sure she got to the doctor and making sure she could do things like wash. They don't recall. You will see her walk into the bathroom and she will think she just did it, yes 1000 times in her life, but not in the last three days. It's that short-term memory loss that goes away. So, you were carrying for your mom at her home. For a while, right. Then, assisted living. All personal family choices as to how the caregiving can go, but options are assisted living, perhaps a nursing home with 24 hour care, in-home, a lot of different options. You live -- you when some creative ways to deal with your mom's distorted thinking. You tell the story about the man under the bed. That's a great one. She was already in the assisted living home and we had spoken just a moment before that and she was still able to use the phone because often phone and numbers go quickly. She called and said there's a man under my bed. Okay, normally what we would do is correct people because that's what we do Emily correct them. We correct to assure run. But in fact, in caregiving world and in dementia world, you have to go into their reality and in her reality, there was a man under the bed. As opposed to upsetting her and saying mom, you're hallucinating again I said is he bothering you? Is he banging on the bed? No. What is he doing? He is just under the bed. I reached into my bag of tricks, which everyone accumulates and creates you become a caregiver and pulled out, I don't how, while mom, is under the bed to make sure you go to lunch on time, so go to lunch break then, when you come back, he will be under Mary's bed to make Shamir goes to lunch in time. That's his job. Oh, she said. You never know when that's going to happen, but she was safe, but he has a job soon and he will be gone soon. Mary, what is the kind of interaction work with people suffering with dementia rather than the kind of thing my Kristin was saying there is nobody there mom, it's okay. Their study under your bed. You're thinking strangely again. Why would entering the reality is Kristin puts it work? Well, you've got to it to their reality because what they are seeing and experiencing is completely real for them. And, it doesn't do any good to argue with someone who is suffering from dementia. So, as Kristin mentioned, you have to meet them where they are and then figure out how you can explain that reality to them that isn't going to upset them and continue to have them function the best way they can. Often times, that involves what we call therapeutic fibbing. If it provides people comfort and they aren't as concerned about what they are experiencing, that's a perfect way to handle the situation. What does happen if you start to argue? Well, when you start arguing with people, they're going to get agitated. They may get upset, they may start to not trust you. You're not going to be able to convince them that what they are experiencing is different than what they are experiencing. So, it really leads nowhere. It is really important to enter their world and try to explain things in a way that's going to be helpful and understandable to them. Kristin, you talk about the kinds of conversations that you were able to have with your mom and a lot of them have to do about concentrating on old times. Because older memories remain for a lot of folks. It's really easy to talk to somebody with dementia and it's a good tool to reduce agitation. Talk about what you used to make your daughter for dinner or let's talk about your wedding day or the military or where did you start your residency, doctor? Then, they go back in time and they can usually talk about those things much easier than what did you have for breakfast? No idea. We can barely remember what we had to pick someone with dementia has absolutely no idea. Going back in time and talking about those kinds of things. I learned a lot unfortunately, after mom got nonverbal and in a nursing home and any wheelchair. But, I like to share as many experiences of ICANN. Now, those are caring for people with dementia. Does that have to not just do with the sometimes in the loved one, but with their own reactions to those changes? Absolutely. That's another reason why it's a really good idea to go into their reality because say for example, it's so upsetting. You are watching them, grieving a different part of them everyday. You are grieving the fact that they can talk to anymore, they can respond to you, potentially they don't me her name. At some point, they might not know who you are. They're not going to remember how to do things. They may be physically deteriorating. You are grieving all that. Plus, you are on call 20 for seven if something happens. You are not sleeping. You aren't going to the doctor because your taking them to the doctor. You are really not taking herself as a caregiver at all. You really need to make sure you do that. Otherwise, you will implode. There are statistics that show a lot of caregivers actually pass away before the people they are taking care of because they are all there sometimes for example, if someone says someone call and say it says right here we are supposed to go to the doctor today, when the going? You just have to go there and say mom, and really we went to the doctor yesterday and share God, you say the doctor called, he canceled. I'm sorry. We are going to go have ice cream instead or go to lunch. Go where they are, make sure they know their right. How did you deal with your pain? Journaled a lot. I have a great brother and great aunt who is a sister of her. My aunt was also losing her sister. I read a lot. I reached out. I had a support group that I went to pick which is so incredibly crucial. You think I am by myself. You are not by yourself. We just had the Alzheimer's walk. There were 5000 people there. Every single person is affected in some way by this. You're not alone. It's great to be in a support group because you can say did that medication work for you? What did you do when your dad got up in the middle of the night and said he wanted to visit with his dad who did 20 years ago. It's great to share, vent, cry. You have to reach out. You can't stay isolated work Mary, according to the county Alzheimer's projects, four out of five Alzheimer's patients in San Diego are cared for at home and I'm wondering, are people prepared for the kind of patience and preparation that it takes to care for these people that they love? I don't think anyone is prepared for caring what's -- for someone with Alzheimer's or another form of dementia. Is Kristin mentioned, it becomes a 24 hour a day job to make sure that person is kept safe and well cared for. That's our mission at the Alzheimer's Association to make sure we can arm families with as much information and training so they can care for that person for the duration of the disease. We have many, many programs to support caregivers and to educate them. We have close to 15 classes every month that caregivers can come to. Cluster 40 support groups. We have a conference coming up this Saturday. We are partnered with sharp on a conference on Saturday. We have experts were going to talk about how do you manage difficult behavior? How should you be working with your doctor? It can be very isolating and we just hope that people will reach out to us and get help and support. Kristin, you have some excellent advice about how to deal with a family member, a loved one, who is dealing with dementia. At a family gathering. Since we're getting close to the holidays, those tips, those pieces of advice may come in really handy for people to hear. Absolutely. The first thing you need to realize is this new dementia is your plus one at your dinner table. It's not an invited guest, but it's there and you have to treated as such. You have to take care of it, make sure your plus one is comfortable just like anybody else and plus one is dementia. With my mom, we learned some really quick, easy things. Too many people at the table is too much. They can't handle too much stimulation. They shut down, get tired. It makes them unable to focus or participate. So, gathering earlier in the day because they get really tired. Everything we do naturally, across my legs, it's my head, said water, they have to think and process to make this things happen. Everything is exhausting to them. Instead of a Thanksgiving dinner, have a Thanksgiving early lunch or a brunch. And you guys do to change our traditions. You can make new ones. It can be just as lovely. You just have to make this person happier. I would say, smaller gatherings, maybe a couple kids tables versus one people -- one long table. To conversations quieter. You have blinking lights at Christmas, business music, banging in the kitchen, a dog barking, two brothers selling at each other, kids playing firetrucks. It's too much for the person with dementia. They're going to have to go take a nap work how about a small gathering where maybe just one child plays with grandma were small music or you all sing together. Something to get it -- keep it,. And also include a person in the appropriation. Have them folded napkins. If you it's not folded in the perfect bird or whatever, it's okay. Have her set the table. If you give somebody three Forks, so what? You can fix it later. They helped and they took part. Taking part in the half into retreat to the rim because it's all becoming too much. Right and if they want to stand up, let them do something. We had a woman who was so upset at our support group because her mother would vacuum for an hour. She was so annoyed. I was like hey, have her come over to my house. It's not hurting anybody. If they want to do repetitive tasks and do things that make them feel like they are giving back our helping were participating, let them. As long as it doesn't hurt them or anyone else. Is there any guidance on when it's time to hire a professional caregiver? We were -- we work a lot with families were at the crossroads where they are concerned that they can't handle it any longer and they may need professional help. We do sit down with families and to discuss that. Typically, the dating factor is pure economics. It's very expensive to hire professional caregivers for the majority of families out there. It's just out of reach. So, when they are to the point where they think they need more help, we really try to walk families through resources that are out there in the community. We also have a volunteer companion program where we trained volunteers and match them with families and then they will come once a week for four to six hours so that caregiver can get a needed break. So, we really try to make sure they know the options that are out there. You talk in your blogs about this, Kristin, about wandering. You say it's not if but when. A person with dementia is going to start wandering. You talk about, very poignantly, about this need to go home. Statistically, six out of 10 people with dementia are going to walk sometime. I would say don't wait. Dolce oh he hasn't wondered yet. Yet is the keyword. Let's do some preparation and safety things so if they do, we can get them back quickly. I contend that everything is so busy in their head and they're having such a hard time figuring out where they are, they could be back in time. Home is hard for them to determine. Home is safety. When your brain is doing all sorts of different things and you are being told you have to sit there and no, you're not right again and what are you saying? I'm not understanding your marble mouth. There is no safety to that. What's interesting is -- this happens all of the country, when people wander, a lot me go back to where they used to work or live. That's why a lot of people are trained, first responders, are trained to go to multiple previous addresses because they could find a way to get there. The most recent address the war member is the one from 30 years ago. But, remember those things. Look where they used to work or live. Those are places where they could head. There's a fear among people who have a family member or a dear friend with dementia that the progress of the disease will be nothing but unrelenting sorrow. But, in reading what you have written, there is a different message. One that says you should do your best to enjoy having your loved one with you now. Enjoy the moments. That is my major, major lesson from going through four years with my mom. My mom has been gone almost 3 years now. I can't even believe it, but she -- she and I had beautiful moments. You have to take those moments and let them tell you up. Sometimes, you're going to have an entire huge chunk of time where you're not going to have eye contact. She may not know you are. You're not going to connect. You may not have the back-and-forth conversation you're used to. This person raised you. If it's a spouse, you have gone through so much life together. Taking these small moments and letting them the you up. You have to. That's a life lesson that I transferred as well. I'm so lucky. We are so lucky to live in San Diego where people save money all year to come here on vacation. Every once in a while, I look at the blue sky and palm trees. This is beautiful. I'm lucky to be here at this moment. I am lucky to have opportunities like this. The workshop understanding dementia and changes in behavior for caregivers is this Saturday from 1 PM to 4 PM at the sharp healthcare auditorium and it's free of charge. You can find Kristin's blog about caring for her mother at Kristen Cusato .com. Thank you both very much. Thank you.