Dementia - Support for the Caregivers

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Guest: Dr. Linda Austin

Host: Dr. Sally Smith

Dr. Sally Smith: Welcome to Age to Age. I am Sally Smith. Let’s talk. Today, we have Linda Austin with us. Linda is a doctor, who is the clinical professor of psychiatry. Linda, thank you so much for being with us.

Dr. Linda Austin: Thank you, Sally.

Dr. Sally Smith: We are talking about issues dealing with ageing in society and what takes when someone has dementia or Alzheimer’s and one of the huge issues of course is that of the caregiver. A statistic that I read recently stated that 4.5 million people in the United States of America currently have Alzheimer; 70% of these live in home, not in an organized nursing facility of any kind. What happens to the caregivers?

Dr. Linda Austin: Boy! All kinds of things happen to the caregiver Sally. You think about that number for everyone of those. It affects their children maybe a surviving spouse, the siblings, their grand children, and the friends. I mean there really is sort of a wave affect for every person, who is suffering from Alzheimer or some other form of dementia. I see in my private practice a lot of women in particular in their 50s, who are the primary caregivers. Often times mothers, I am seen that almost more often than fathers with Alzheimer and the effects have varied. When they come to see me often it’s because they have developed a very significant depression. They may be very anxious, they may be filled with guilt, they may feel that being the caregiver has totally taken over their lives, and they really don’t know which way to turn and some of them have even developed a true clinical depression that needs treatment even with medication at times.

Dr. Sally Smith: I was so interested to talk to someone recently, who describes the situation of the caregiver being so full of stress and worry that often the caregiver will not survive the person they are taking care off. Sometimes they will get a stress related condition or in fact some unexpected condition that literally they will wear out and die before the person that has the Alzheimer and which amazed me.

Dr. Linda Austin: There was a very interesting study some years ago in which researchers looked at cells and culture of caregivers and there is a marker for the ageing process within cells and they found that within the cells of people, who have been long-term caregivers that ageing process within them had been speeded up.

Dr. Sally Smith: Really.

Dr. Linda Austin: Yes. You can see that a cellular level.

Dr. Sally Smith: One thing that I wonder. In your practice, do you see much frustration and anger in a caregiver that they are a little bit out of control in their own life? They have had to put some of their own life on hold and take time away from their dreams and careers and family to do this. Is the anger and frustration a factor?

Dr. Linda Austin: For many, certainly not for everyone. I think they are all sorts of emotions that can go along with it and of course being a caregiver it doesn’t occur in a vacuum that often that person is let’s say a wife or sometimes a husband also has a spouse, may have children, often, these are people in their 50s or sometimes 60s now with parents who are in their 90s, so they may have children of their own, who are teenagers or in college, who they are also taking care off and I think it’s that feeling there is just not enough to go around that can be so overwhelming for the caregiver.

Dr. Sally Smith: When does a person give themselves permission to say no?

Dr. Linda Austin: I think that from the very beginning or even when you’re contemplating what life may be like when mamma or daddy needs help, it’s important to think of pacing yourself. I would like to think of pacing rather than a yes or a no. that it’s not as if you are slamming the door, but you are recognizing that there are limits and this is a long term process and that you are not sprinting to the finish. You are trying to reserve your strength, your sense of humor, your optimism, and your energy for what would be a long journey.

Dr. Sally Smith: Do you find that people have a hard time showing the balance in making decisions that you have just described? Do you find that people do in fact sacrifice, their families and sacrifice in a sense themselves on this alter of need and guidance. Do they derail their lives?

Dr. Linda Austin: Well, you see all sorts of things of course Sally. I mean if you take lets say a family with a parent with Alzheimer and maybe 4 children or 5 children. Maybe, there will be one child, who is off on the other side of the country, who is lost to followup, you never hear from them. May be, there will be one, who gives up their career and moves back to town to take care of mom or daddy. May be, there will one, who is a bit of and who may be makes everybody else feel guilty. May be, there is one who is turned off or you can see every variation on a theme and often time in family you see people reverting to character. You know, the one who has always been momma’s good girl becomes a super good girl and the one, who has always been the black, she barely out. I think it’s also important to remember that human beings do what we do for multiple reasons so that for example I am thinking of a woman I know, who when her mother became demented actually after an accident gave up her job, moved across country to take care of mom, who had been a brilliant woman and was now functioning at the level of about an 8-month old baby. This went on for 5 years and every time momma developed pneumonia, which would have been an easy and blessed and graceful way to die these particular siblings said, Absolutely not, do everything for momma to keep her alive. This went on and on and on and all the other siblings felt very guilty, but when momma finally did die the care taking sibling, the caregiver never did go back to work. In retrospect, it was to some degree, yes it was a loving act, yes it was very caring to care of momma, but it was also a protection from things in her own life that she didn’t want to face and that under the mantle of being the good kid didn’t have to face any more.

Dr. Sally Smith: That is fascinating and when you bring that up it opens all sorts of possibilities as you say the infinite human man and what motivates people, the different ways being a caregiver can go the whole gamete from the most noble to the one you just describe, which is noble in a sense, but may be you get a lot of ulterior motives under the surface.

Dr. Linda Austin: Well, I would say multiple motives, but there are always multiple dynamics that play out. There are always sibling rivalry issues a little bit under the surface. There are alliances that go on between siblings were two of them will get allied together and together and shut out the third. There are financial issues sometimes of one sibling, who may be will move in with momma and change the will. I mean that is certainly not an uncommon scenario. There are so many different levels that play out all at once and sometimes it can be pretty crazy making.

Dr. Sally Smith: Speaking of crazy making, one of the things I was going to ask about was one you just mentioned watching the family money disappear, they say finances are very powerful motivator for people and how much of that do you see is disruptive in upsetting.

Dr. Linda Austin: It can be incredibly disruptive. I in my own private practice, I have often said that one of the top five reasons people come to see me is too much money. It creates such problems. It can bring out the greed; it can bring out the pettiness, the selfservingness, and hardly enough. It seems harder when there is a lot of money, then when it really isn’t even an issue. I would advice all parents to get their wills in order, I would advice all parents to keep it secret. It’s not anybody’s business, but their own to work it out with their attorney and to make sure that everything is in order before they began to get demented and to just take steps so that things can’t be changed at the wrong time and for the wrong reasons.

Dr. Sally Smith: I love the quote that I read long time ago and it said in sharing a life boat or in inheritance with someone you may learn more than you want to know about the person.

Dr. Linda Austin: Absolutely, and even about yourself.

Dr. Sally Smith: Exactly. One thing I have been fascinated by is the dynamic that has been put in to place by the ageing baby boomers and the fact that their parents are living much longer. There have been a series of articles in the New York Times and other magazines as well, papers as well about entrapment. Really, when you boil down to it some of these caregivers are entrapped by the fact they don’t have enough money to put or are unwilling to go to the public route of a nursing home, that’s not a high class nursing home in their eyes and yet they have two parents that can interact, within that they have be totally taken care off and here is the person, who is now 60-65, thought they were going to be at the end of their carrier where they were going to have a little time in the sky, retirement time, and suddenly they are locked into a house with two people that wander or need around the clock care and with little outside support and that was such a powerful image to me. Do you see much of that?

Dr. Linda Austin: Sally, this is a huge issue and we have got to grapple with this in public conversation and this scores much more openly than we have in other countries such as England. Yes, they do have National Health Service, which is a wonderful thing, but they have limits on it also. So, you don’t see 70 year old getting ongoing dialysis for example. We have no such limits in this country. We for example will implant intracardiac defibrillators in the hearts of people with Alzheimer, who don’t even know their names hardly and when that heart is trying to die, just keep shocking impact to life. It is robbing the quality of life for so many people. I know very few people, who really would want that for themselves, none of us would and yet it becomes a point of contention among the siblings and we got to start talking about people have to make their wishes known. They have to really think it through to talk with each of their children, write down their wishes, talk to their attorneys, and their doctors and make it very clear because once it’s too late it’s too late.

Dr. Sally Smith: That is such a huge point and I am so glad you’re speaking to it because I think number one is the early dialogue when momma or daddy or whoever is in their best mind able to articulate exactly why they feel this way to the rest of their family, put the documents in place. Then the angst and upset and the guilt and the worry of - is this what she want? Is this not what she want is washed away and you are able to have a document that says if I have got Alzheimer and I don’t who I am, whatever your factors are, then I don’t want the antibiotic and I don’t want the implants. So, this is something that each person has I believe a responsibility to do.

Dr. Linda Austin: At Duke Medical School, there was a very famous nationally famous physician Dr. Steed and I remember the story he gathered a group of medical students around him and said, who here thinks that death is the enemy, and of course all the poor little terrified medical students, who were sitting thinking, oh my god what’s the right answer to this and finally he thundered anybody who thinks that death is the enemy has no business in medicine. He said death is not the enemy; pain, suffering, loss of dignity, loss of humanity, those are the enemies and we need to think about this so much more carefully as we face the new issues that come about as a result of the extraordinary advances in medical science that allow our bodies to live even when our brains are trying to die.

Dr. Sally Smith: I think such a huge issue is this openness and communication of the varied topics that are touching on here because we are in control of our own fate. We do have opportunities and vehicles that can be used to let our wishes be known and as I said before I think it is a responsibility and even among my own children, who are young, married with small children - everyone of them have an advance directive of all of those legal papers because whether you are 30 years old or you are 80 years old it can happen to you. So, on that note, I would love to thank you so much. I would love to invite you back sometime to talk about the powerful positive strategies that can be put in place with caregiver to optimize their time helping loved ones in a difficult situation. So, thank you

Dr. Linda Austin so much for being with us today.

Dr. Linda Austin: Thank you, Sally.

Dr. Sally Smith: I would also like to thank my producer Betsy Reves and my web administrator and I thank all of you listeners for joining us today and we welcome your suggestions and comments, which can be made on the website that you found this program on and we hope you will give us interactive questions that you would like to have answer or anyway you think that we could give you more information on the subject you are interested in. This is Sally Smith Age to Age, saying good bye and wishing you courage and joy on your journey. We are all connected.

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