| The Importance of A Caregiver Support Network" |
| Friday, 01 February 2008 | |
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Guest Chatter: Dottie Lyvers Moderator: What type of information is available? Dottie Lyvers: When you visit that site, click on the "caregivers" section. This will take you to a link where you can find state contacts for the program. The Family Caregiver Support Program (FCSP) provides information and assistance, respite services support groups, education, and much more. It supports families caring for adults 60 or older, or anyone who has Alzheimer's or another form of dementia. Moderator: That's great. Question: So EOAD would be eligible? Dottie Lyvers: Yes - most definitely. It covers all ages, even 40's and 50's. Question: What's EOAD? Dottie Lyvers: Early onset Alzheimer's Disease--Diagnosed before the age of 65. Moderator: What is the best way to go about locating local resources? Dottie Lyvers: Well, Knowitalz.com is a good start. Also, there are many resources, such as the Alzheimer's Association (www.alz.org), www.eldercare.gov (which helps you locate local services, such as Area Agencies on Aging. Question: Do people with EOAD usually progress faster than folks that get it at an older ageDottie Lyvers: I will qualify this by saying that I am not a Dr. However, from my knowledge, I have seen it progress faster, but I don't know if there is any scientific proof behind that. I think like any AD, it progresses differently from person to person, despite age. Question: What is the best way to seek help from other family members or close friends? Dottie Lyvers: Good question. Sometimes, you need to point blank ask for what you need. Even if someone is a family member, they may not know what to say or do, so they may do nothing. If you need someone to bring you a meal, then ask for it.However, you will encounter family and friends that are "not available" to help, either emotionally or otherwise. You have to find those that can help you, even if it isn't your family or friends. Does this answer it, or do I need to be more specific? Question: I feel as though the rest of the family thinks that I "have it covered" and rarely, if ever offer help. Yes, I guess I just need to stick up for myself a little more. Comment: And ask.......it's difficult for others to know what you need if you don't ask. Dottie Lyvers: Ah - they may not understand what you are going through as a caregiver. There is something called "assertiveness" in the way you approach your family. Comment: I have a website...where I journal several times a week...my family all read this journal...and know where I am at...and what we are needing each week. Comment: Great idea, thanks! Dottie Lyvers: There is also a website (http://www.lotsahelpinghands.com/) where you can let people know what help you need. Comment: Wonderful, I'll definitely check it out!! Question: How do I get my mother to understand she cannot live alone anymore when she thinks she is perfectly fine? Dottie Lyvers: That is tricky question. Our folks at KnowItAlz may have some answers as well, but I think it depends on where she is in the disease process. It is helpful to get "buy-in" from your mom, but her judgment may be affected by her memory problems. Depending on her situation, you may have to do what is in the best interest for her and her safety, even if she doesn't agree.There are certain ways you can work around that to make her feel ok about it. Comment: She won't even let Meals on Wheels come. I have hinted that she could use some help around the house (it is messy) but she just refuses help. I live about 20 minutes away and work full time to it is hard for me to check on her Comment: Do you have other friends or family who could stop byComment: Not really - she is 89 and not many friends left Dottie Lyvers: How have you approached it with her? Maybe tell her that you bought her some services as a gift - to come and clean up for her. Everything is trial and error. Sometimes it’s just in your approach. Question: I have EOAD and I do a lot of arm swinging in the night and leg kicking. I even hit my wife once in a while. Is there something I can take or do to prevent this? Dottie Lyvers: I am not certain of this. I don't know if this is a result of the EOAD, or something else. I would suggest talking with your Dr. about this concern. Document when it occurs before you talk with the Dr. Comment: Have you tried one of those full-length pillows? You could use it as a barrier of sorts? Dottie Lyvers: That's a good idea. Comment: Thanks I will do that Comment: That's what I use to keep Dad in bed Question: How does one keep the AZ person from sundowning? Dottie Lyvers: Well, distraction works well. Finding activities for the AZ person to do when the sundowning time occurs. That is one thought. It is difficult to "keep" the person from sundowning, but you may be able to minimize it. Question: What is sundowning? Dottie Lyvers: Maybe turn on a lot of lights (sundowning usually occurs when the sun is going down, or will soon). The behaviors that occur sometimes are enhanced, such as more wandering, more agitation, etc.http://www.knowitalz.com/resources/what-to-expect/sundowning-tips.html - This is a great article I found on the subject Comment: Ah-- my Father in Law has thatDottie Lyvers: It can be frustrating for the person with AD and those around them. Comment: Yes it can. She's in the bed at 5:30 pm, and up at 3 am wandering around. Dottie Lyvers: Sometimes, it requires you to constantly redirect and distract onto something else. Comment: Are you able to keep her doing activities? What does she do during the day? Comment: No....she's not active and I've tried and keep trying. She's a bit stubborn and fussy. Question: Will this get better when the time changes again? Dottie Lyvers: I don't know if sundowning goes away with the time change. Comment: My dad had sundown syndrome - it didn't go away with the time change, just started later. Also, it affected him on cloudy and hazy days too - any time there was a low light situation. Comment: My dad would be almost OK on nice sunny days, but otherwise, especially in gloomy winter days there was a noticeable difference. Comment: Yes....it does with my mother. She doesn't nap either. But she's not as respondent either. Dottie Lyvers: They don't realize that it is 3am and their mind may not tell them at 3am - you sleep. Comment: I'm familiar with the mix ups. Dottie Lyvers: Are you familiar with Adult Day Centers? Comment: I was just discussing that earlier. I will look into it and see if our area has that service available. Dottie Lyvers: It is good place, if there is one locally where you live. She can go and get some activity and hopefully help her sleep through the night. However, with AD, a person can have some mix up between day and night. Someone's previous schedule (if they worked 3rd shift for example), could also affect this. Comment: I realize when they aren't active they don't require as much sleep. I just worry that she's not really resting like she should. Dottie Lyvers: Some people chose to talk with their Dr's about sleeping pills. That is a decision that is up to you and the person with AD. I don't necessarily "recommend" this, but I know some people who chose this option. Comment: I tried the sleeping pills........both the doctor and I have decided she was becoming addicted to them. Dottie Lyvers: Some other ideas for helping with sleep - don't give caffeine or liquid too soon before bed… try to calm things down before bed. Comment: And then there's hallucinations. Comment: Yes, my dad used to call me and say he was being held prisoner or something like that and for me to come and get him. He was calling from his kitchen. Question: What should we do when they hallucinate…go along? Comment: You almost have to go along with it for a while and then try to change the subject - its hard to convince them that what they believe is not real. Dottie Lyvers: Ok - hallucinating...for a person with hallucinations, you cannot tell them otherwise that there is not a child in the room, or bugs on their bed. Instead, you have to go along with it. Get the children out of the room and validate what they are feeling. Comment: My wife's doctor prescribed seroquel to reduce delusions. Its not really designed for Alz - warnings of side effects - but it really helped. Comment: Yes I have heard of lots of good results with that drug too Comment: We use it a lot where I work Question: Should we get them to talk about their hallucinations? Or just react to them? Dottie Lyvers: As with anything, it is good to avoid arguing with the person. If they say the sky is purple, then go along with that. Maybe their world is better than our world. Comment: I think the idea is to go along, but try to distract with other things. Comment: I have fixed two plates, just to get my dad to eat. He didn't want to eat in front of his "guest" Question: Is it OK to ask an unrelated question? My mom is 90 and is having increasing alz symptoms - its hard to tell if she's in or out. She's in a NH now, and is constantly asking to go home. I don't really know how to handle it - any suggestions? Dottie Lyvers: That is a difficult one. You never know what "home" she may be referring to. What I mean by that is she could be referring to a home that she lived in as a child. She could also want familiar surroundings. It is good to try and to validate what she is feeling. Maybe she is scared, but can't tell you that. Make sense? Dottie Lyvers: Just let her know that she is not forgotten. Comment: That's a thought I never realized to think of in that situation. Comment: When my wife asks for impossible things, I say "let's see what we can do in the morning (or the next day)" - she never remembers anyway. We can debate whether its is OK to lie - but it reduces her anxiety. Comment: Yes, sort of – I’ve tried it - I guess you just have to keep saying the same thing over - I just can't get through to her that it’s not safe for her to live alone - she's a very independent, stubborn person. Comment: I always try to put Dad's things from his old house at our house to make him feel comfortable---lots of pictures. Comment: I should add - my wife wants to go home - but we have lived her 20 years . Dottie Lyvers: Great point. Distraction, distraction, distraction. And making them feel safe and comforted, as much as you are able to. Comment: Yes - at least I know she is safe - that's my consolation Comment: Yes - it depends on how far along they are (re: remembering/lying) Comment: I’ve got to practice that more often. Comment: Yes, I’ve tried lying - I think that she remembers, sometimes she does, sometimes she doesn't. I was saying to wait until winter is over, but that’s soon approaching - now I need to think of something else. It’s frustrating - but I agree you need to try to keep them comforted and feel safe - she says she's bored, but all she did at home was stay in bed all day and complain that she was bored!! Dottie Lyvers: Gracie, I imagine the guilt of having your mom say that to you (and the emotions) is hard. You just have to know that you are doing the best you can do and the best for your mom and try to focus on that. Question: How do you get people at work (my not-so-understanding boss) to get it when I have to leave at the drop of the hat when my mom decides to wander the neighborhood? Question: Can you talk to you Human Resources dept - just to find out company policy? Comment: I work for a small company, but have brought it up, seems like a lot of people think Iuse it as an excuse to leave early…if that were only true! Comment: How old is your boss? Maybe that’s why he cannot sympathize ... drop off some literature on Alz, maybe. Dottie Lyvers: Maybe they could come with you one day to see what you go through when your mom wanders the neighborhood - would that be possible? Comment: That's a great idea! Dottie Lyvers: It is hard for people to understand what you go through. They probably don't think it is very challenging. Unfortunately, you can't change other people or their perceptions. Find out the policies and then make sure you work within them. There is a Family Medical Leave Act which should cover you Comment: I didn't know that! I'm learning so much tonight. Dottie Lyvers: Good! That's the idea. Dottie Lyvers: I don't know the specifics about the Family Medical Leave Act. You can probably access it online. But, it allows you leave to care for a loved one. Comment: I don't think that FEMLA is meant to be used w/ short or no notice Comment: 6 weeks unpaid but they have to hold your job FMLA Comment: I’m taking notes. Comment: This is wonderful! Question: Dottie what do you suggest people do if they are not Power of Attorney when they become a caregiver Dottie Lyvers: I would suggest that Power of Attorney is obtained quickly (if not already done). This is a good thing to obtain before getting a diagnosis. Sometimes, after a diagnosis is made, some attorneys will not allow a person to designate a POA, even though they may be able to make decisions still. Did that answer it? Comment: Never been in a chat with this many folks…must run now...I can see good stuff happening here Question: How do you get over hurt feelings after you have been blamed, then fussed at, for something you did not even do? There have been days when it seems like I am always in trouble because my Mother forgets she moved something or cannot find something. I know it is the disease But it still hurts to be yelled at for something you did not do. How do you resolve those feel Dottie Lyvers: Ok - Leila - to be honest - you have to have a very thick skin and not take it to heart or personally. You may be the target of the frustration the other person is feeling. That often happens. Just keep remembering that she has Alzheimer's (I am assuming) and can't help it. I imagine that she forgets what happens shortly, and you are left with all the feelings Comment: Basically I need to learn to let these things go faster Comment: I think you also need to realize that she's not herself, and is confused about the situation - I don't think you can really take what she says to heart in a situation like that. Patience is required - and very difficult Comment: For some people, 'having thick skin' is easier said than done Dottie Lyvers: Yes - if you have a support group you can join locally (or chat on this website), that can help. Dottie Lyvers: MUCH patience is needed. That comes easier for some people. I like to do deep breathing. When you feel upset and maybe angry, take some slow deep breaths in through your nose and let it out slowly through your mouth. Also- there is a class, called Powerful Tools for Caregivers. I have the website. It is long - sorry. www.legacyhealth.org/body.cfm?id=769 that is taught in various states. I can get some information to KnowItAlz to post on their site to find out about finding a class in your area. Question: Does anyone have any ideas on incontinence training? Comment: Dad has been on a "reverse potty training" schedule to keep the accidents away. Here's the trick. I need him to go every 2-3 hours, so I will tell him we are going for a long outing and he should make a "pit stop" before we go. Then by the time he is out of the bathroom, he has forgotten the trip! Comment: Good idea! Question: What do you do if your mom is in denial, she doesn't think anything is wrong with her and my dad agrees with her and won't lie to her. We think she is in stage 4-6 and at least we convinced her to take her meds regularly, but she hates doctors. Dottie Lyvers: Sometimes you have to get creative in getting her to the Dr. Comment: For some people it is just hard for them to accept.Dottie Lyvers: Denial is a way we cope. For your mom - it could be part of her memory problems. For your dad, he may not be able to face what is happening. Do you tell your mom all the time that she has memory problems?I don't know your approach, but maybe focus on letting them know that you are concerned about them. Maybe try to get your dad some outside support, such as a support group. Comment: My Mom was in denial until all of her little "tricks" no longer worked! Comment: If we talk about it to either one they with withdraw from us or get mad and right now she remembers that she is mad at us. Question: I have a really hard time bathing Mom and washing her hair. She is 87 and in early stage 7. She screams when I put the water on...I have a towel to cover her...and I use a bath chair. I took her to the hairdresser ...even that is hard because she is so afraid to lean back Dottie Lyvers: Bathing can be very scary for someone. Because of her memory problems, she may not understand what is happening to her. If she is in the shower, she may not understand what the water coming down on her head is. Hard to believe, but true. Question: Do you always pour the water over the top of her? Dottie Lyvers: It is good to make the bathing experience as positive as possible. Give her something to do - such as washing her face, while you wash her hair. Also - maybe getting a hand held shower head would be less scary. Also - make the bathroom as warm as possible. She may be cold. Comment: No I believe it ...I know she is afraid ...I use a hand held shower Dottie Lyvers: Sometimes, keeping her comforted and talking to her during the process in a calm soothing voice can help. Comment: Someone told me that they gave the hand held wand to their mom to use on herself and it made her feel more in control. Comment: Thanks...I do try that.....even as we are both getting soaked Dottie Lyvers: I always try to imagine what it is like to not understand what water is and what it is doing. But, possibly, that could be happening. Comment: Not understanding what water is? I never even thought of that Dottie Lyvers: Well - I probably said that oddly, but for a person with AD, they may not understand what the water is doing to them. They may interpret differently - like pain. Comment: She may be a dangerous woman with that wand !!! Comment: And turned the pressure down sometimes they feel pain from the hard water pressure. Skin gets thinner as we get older Comment: That's a good point ...she always seems to be in pain as I touch her skin Dottie Lyvers: Have you tried playing music? Comment: I am not sure she could hear it over the screams...I have tried though.....she has lost her language skills but sure remembers some words in the bath !! Dottie Lyvers: I have a video in my office that has a good demonstration of the "right way" and "wrong way" to give a bath. Let me see if I can find it online real quick. Comment: I want this information too Dottie Lyvers: Yes - the video I was thinking of is called bathing without a battle. http://www.bathingwithoutabattle.unc.edu/ If memory serves, it is targeted towards staff in care facilities, but may apply. Dottie Lyvers: Your local Alzheimer's Association chapter may have a copy that you can borrow. To find your local chapter, go to www.alz.org. Comment: I put lotion on my Mom's skin as often as she will allow me. It seems to sooth her too. Comment: I guess at some point I need to know how to give sponge baths Moderator: Thank you Dottie for being our first guest chatter. I think you provided a lot of useful information. Dottie Lyvers: Thanks! You are welcome. I would be happy to answer questions via the staff of KnowItAlz if something else comes up. Ok? They know how to reach me. Moderator: If you have additional questions, please sends them to us and we will get them to Dottie and post the response on our site Dottie Lyvers: Everyone keep hanging in there! |