Caregiving, When Illness Turns Families into Caregivers

Welcome to the TBI-HELP Live Chat

Today's topic is: "Caregiving, When Illness Turns Families into Caregivers"

Our Guest is: Carol Levine, Director, Families and Health Care Project, United
Hospital Fund

Tonight's Topic Summary:
This discussion will touch on the challenges facing caregivers as they try to balance their personal, family, and work lives, while remaining "always on call" for their TBI-affected family members.

[18:59:56] MOD: Good Evening and welcome to our chat session. Tonight it is our pleasure to have with us as our guest speaker Carol Levine, Director , Families and Health Care Project from the United Fund. Welcome Mrs. Levine.
[19:00:50] carollevine: Thank you and I am delighted to be with you. This is a new experience for me and so I am expecting to learn a lot..
[19:01:17] MOD: As a caregiver and professional in the field, how do you work out this balance? What advise can you give others in the same situation..
[19:02:05] carollevine: This is an ongoing problem for me, and I expect for many other caregivers. I face it day by day. What I try to do -- not always successfully -- is to set my priorities so that I know what comes first. And of course, it always means making sure that my husband -- who had a TBI in 1990 -- is taken care of ..
[19:03:32] MOD: Rail: What can caregivers do to set limits to the many demands made of them?..
[19:04:15] carollevine: That is a good question, Rail. I try to set very few limits, but make sure that these are honored. Let's say, for instance, tonight. I told my husband that I could not bring him anything until 8 p.m. He will just have to wait. But then I will rush in to see what he needs. That may be a trivial example, but I think you see what I mean.
[19:06:11] MOD: Rail: Have you found "respite Services" available and /or reliable as a Time-Out for the family?..
[19:06:41] carollevine: As much as I believe in respite services and advocate for them, I have not myself taken advantage of any formal service. I do occasionally ask my daytime home care aide to stay for the evening so I can do something for fun, or work, when it is necessary. I guess I should take my own advice more often!..
[19:09:21] MOD: Are there issues that the heath care professional should be aware of in the area of caregiving?
[19:10:19] carollevine: That is so important! I think professionals who work in hospital or in-patient settings do not really understand how hard it can be do provide quality care at home. The backup is not there; the supplies are not there; and you are "always on call." Another issue of course is the difference between providing care to someone you have just met and doing the same things for a family member.
[19:11:32] Mod1: Are there any Home Care guidelines that can help a new Caregiver get used to the demands and not be made crazy?
[19:11:41] carollevine: That takes a major adjustment that I don't think many professionals really understand.. I don't know about any formal guidelines. I think new caregivers have to ask questions, and repeat them until they get a satisfactory answer. It is absolutely not necessary -- or a good thing-- to drive yourself crazy. That helps no one..
[19:14:30] MOD: Rail: Are the medical professionals very up to date on what is demanded of them - and that they might be of some help in terms of advice and advocacy?..
[19:15:03] carollevine: That is a good question. Some medical professionals are very up to date, and can be a great source of help. Others just seem to say, "Not my department." I think that caregivers have a right to expect that a professional will have information and will be their advocate, or at the very least, put them in touch with someone who can be helpful. Sometimes I find that the office personnel know more than the doctors about services and especially insurance..
[19:16:46] MOD: Mort: How can we help family members outside the care network understand the difficulties in caretaking?..
[19:17:04] carollevine: Thanks, Mort. Good question. I think that many family members resist the idea that they are caregivers. By keeping themselves out of the care network, they lose a lot of potential support. Perhaps the best way to explain what is going on is to invite family members to participate in some non-threatening aspect of care. That way they may just see what is going on. I don't think you want to make it a confrontation or a challenge, just a reality check. .
[19:19:04] MOD: Mort: I have found that sometimes professionals are sometimes short with caregivers about their feelings or their problems...How can we educate them?..
[19:19:51] carollevine: They were never trained to do this, and so they avoid it. It's a good idea to ask a doctor or nurse if you could set aside some time at the next visit to go into this a little bit. That may give them some time to prepare..
[19:20:42] MOD: Welcome Erin: How can I have some personal time without feeling guilty?..
[19:21:44] carollevine: What exactly do you feel guilty about? Your relative is not being neglected. You should say to yourself: "I am doing the very best job I can. I deserve a little time off."..
[19:22:34] MOD: Susan: I would love to be able to find a support group that has real information to share and not just a crying and gripe session. I think caregivers need to learn from each other. Heard of any like this? I sure haven't!
[19:22:49] carollevine: Susan, you ask a question that I hear often. Support groups come in many different types and sizes. Perhaps what you need is a training session rather than a support group, or a moderated support group, where the moderator keeps that session from getting too negative. You have to realize, however, that for many caregivers a support group is the only opportunity they have to "gripe" and "complain," and this is what they come for..
[19:24:23] MOD: Erin: How do you find the support group that fits you?..
[19:24:54] carollevine: I don't know of any way other than talking to people in the group, and trying it out. And if you can't find one that suits you, perhaps you might think of starting one yourself..
[19:25:42] MOD: TBI presents special problems for caregivers. What has been the most difficult aspect for you?..
[19:26:13] carollevine: For me, the most difficult aspect has been the change in my husband's personality, and what that has meant for our relationship. I constantly find myself wanting to talk to him about something (recently it was the September 11 events) and finding that we are on different planes. This is harder for me than his physical limitations, which are very serious..
[19:27:20] MOD: Erin: What are some good ways of helping to get my family involved in the caretaking process?..
[19:27:47] carollevine: Erin, very few caregivers have the amount of support that they would like from family members. Perhaps you can think of small tasks that they can do that are limited so that they do not feel that they are going to be overwhelmed. Another thing may be to look beyond the immediate people in your family, who don't seem to have been helpful. Sometimes there are relatives or friends who will emerge as very helpful given a chance..
[19:30:00] MOD: Sometimes my husband has these personality changes or gets angry and scares the children...How can I help them understand that this is his injury and not him?..
[19:30:20] carollevine: Tori, I don't have direct experience with this since my children are grown. But I do see my grandchildren being very shy or anxious around my husband. I think you can talk to them gently and lovingly about their father's condition, and assure them that he loves them just as you do. If they are really upset, I would suggest seeing a counselor about it. It's something that will change with age, but it is important to address whenever it occurs..
[19:32:50] MOD: Tori: Sometimes I feel like I do everything and just can't take it any more.. what should I do or where should I go?
[19:33:53] carollevine: When caregiving really gets you down, it is no longer working, and you need to examine other options --for more help, time off, counseling, whatever works. Good luck..
[19:34:16] MOD: Susan: After having just spoken to a friend whose husband also had a TBI, she find it harder as times passes. The whole dynamics of her relationship has changed and she says it gets harder each time she realizes that this is here life. I guess when reality sets in it is pretty difficult..
[19:34:40] carollevine: Susan, that sounds like me exactly! After twelve years, I still find it hard. And there is the inevitable wear and tear on your body and emotions. Some things do get easier, once you've been through them, but the loss and grief go on. It's OK, I believe, to express that, as long as it doesn't interfere with going on with life as it exists now..
[19:35:38] MOD: What advise can you give caregivers to pass on to legislators to have better support policies and programs?..
[19:36:20] carollevine: When I talk to legislators, I try to impress on them the overwhelming nature of what caregivers are expected to do today. I try to tell them that we need better services for caregivers who do not fit into the two categories they know about: very rich and very poor. I also say that caregivers do not want to give up caregiving (at least , most of us don''t) and if we get a little help from the government it will not mean abandonment of our relatives.
[19:38:00] MOD: Rail: How much does the lack of financial support add to the burdens of Caregiving? It this an aspect for legislation?
[19:39:47] carollevine: There are several bills in Congress that would give caregivers and patients up to $3,000 off their tax bill (if they have one).
[19:40:38] MOD: Erin: Is there any new legislation on the horizon that will give us the ability to get more help to care for our loved ones?..
[19:40:57] carollevine: Erin, right now the only legislation that seems to have any hope is the tax credit bill, which I just mentioned. There are a few bills around that would reform long-term care (actually, reform is not a good word, since we don't really have a long-term car system). Last year Congress passed the National Family Caregiver Support Program, which gave money to the states to set up caregiving programs through the Area Agencies on Aging.
[19:43:07] MOD: Susan: You are right. We are forgotten but how do we change this? Insurance companies don't live this and see the need. Neither do legislators. Homecare and therapy is not as cost effective as nursing home care.
[19:43:03] carollevine: Susan, I don't know about cost-effective. Community-based care has been promoted on the basis that it saves money. I think we have to be advocates for changes. This is hard for busy caregivers, but it's worth writing a letter to your representatives, and signing on to other caregiver advocacy programs. There is a website called "Caregivers Count." Sorry I don't have the exact URL. That gives updates on legislative and policy action..
[19:44:59] MOD: Erin: Any chance of any legislation affecting direct care at home like aids or something of that nature?..
[19:45:53] carollevine: Erin, I don't see anything right now. There is a shortage of aides. Right now there does not seem to be a disposition for anything in the domestic arena that will cost money.
[19:48:08] MOD: Amy: I know that we all hope for some miracle to help our family member but do you know what the newest treatments are and if there is any new treatment that promises any hope?
[19:47:58] carollevine: Amy, I wish that I could offer you something new, but that is not my area of expertise. Perhaps someone on a future chat session will be able to give you new information. For myself, I have to say that I have long ago given up expecting a miracle. But I respect the wishes and deep feelings that inspire this hope..
[19:46:33] MOD: What would you like to see in the media regarding caregiving issues?..
[19:50:33] carollevine: Amy, since I have been involved in caregiving -- 12 years personally and 5 years professionally-- there has been a great deal more attention to caregiving from the media. However, much of the coverage seems to of the "Isn't she wonderful and heroic!" or "What a sad story." I find relatively little that addresses caregiving from the perspective of what can be done to help caregivers or what the larger society's responsibility is toward chronically ill people. But the media lives on human interest, and maybe that's the only way to get people's attention. But I hope that we can get some coverage beyond these individual stories.
[19:53:27] MOD: Amy: How do you handle going out in public, sometimes I find this difficult?
[19:53:54] carollevine: Amy, I know what you mean. Sometimes it is difficult. I just do it. We have a right to be in restaurants, on the buses, streets, wherever. I find that most people are at worst curious. Sometimes they are helpful.
[19:54:06] MOD: Susan: Do you as a caregiver also find loss of those who were friends because they can't cope with the long term difference in the injured?..
[19:54:38] carollevine: Susan, you are absolutely right. Some friends have just drifted away. I know they cannot deal with my husband as he is now. On the other hand, people who not as close to us as a couple have been terrifically loyal. And my husband has several friends from various jobs who continue to call and visit. That's quite remarkable I think since he really doesn't carry on much of a conversation. I am
[19:55:51] MOD: Rail: What are other hospitals doing to support Caregivers?..
[19:56:22] carollevine: Rail, glad you asked. This website is one of seven grants that the United Hospital Fund made as part of the Family Caregiving Grant Initiative. The other hospitals are all doing different things. Cabrini, for example, has created a special inpatient unit for Alzheimer's patients and families, which is a national model. Brooklyn has a geriatric nurse practitioner who visits families at home after the hospital stay to make sure the caregiver has everything he or she needs.
[19:58:36] MOD: What one change would you like to see in the health care system as it presently exists that would make life easier for the caregivers?
[19:58:53] carollevine: I would like to change a lot of things! But if I had to choose one, I would say "Improve the discharge planning process." Most caregivers tell me that they have no idea what they will be faced with once they are home.
[20:00:32] MOD: Well it seems that our time is up. I want to take this opportunity to thank Carol Levine for a very interesting and informative evening and invite her back to participate in the future. Thank you all for your wonderful questions and I look forward to seeing you next week. Have a good and safe week!
[20:01:04] carollevine: Thanks so much. I really enjoyed it and would love to come back. Good night all..
[20:01:23] MOD: Good Night and thanks again!