Alzheimer’s Disease – When Caregiving Doesn’t Come Naturally

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Sally Smith:  Welcome to Age to Age.  I’m Sally Smith.  Let’s talk.  We’re talking with Fran Emerson who has had a lifetime of helping people and families that are caring for loved ones with dementia and Alzheimer’s.  She has also had the experience, like many of us, of taking care of an aging family member.  Something Fran raised, which is so interesting and such a major emotional hotspot, is the question of whether or not everybody is suited for caregiving and, if not, how does that play out?


Fran Emerson:  I’m a great believer that we are all such individuals, that there are things that we’re good at in life, and things that we’re not good at.  Are we are all natural teachers?  Are we all natural nurses?  No, of course we’re not.  We choose different occupations.  So, I truly believe that there are people who are not good at caregiving.  They know it themselves, and they find that role challenging and difficult, and it doesn’t come naturally to them.  So, what does that do to the family dynamics, you know, when you have a diagnosis in the family? 


Sally Smith:  And I bet you’ve seen so many hundreds of families, and it’s always a shock, it’s always an emotional moment when suddenly the terrain changes and you think, oh my heavens, the parent that I was turning to for support now needs my care.  That’s an emotional time anyway.  So then, you have some in the family that step up, and some that don’t?  How have you seen that play out?  


Fran Emerson:  Well, it’s a very complex issue, the family issue.  Some people don’t know what to do.  Some caregivers, or potential caregivers, need guidance.  So if you’ve got a real someone that copes better in the family who steps up to the plate and says, you know, I think we should do this, we should do that, and you’ve got a sibling, say, who is potentially capable of walking away or not wanting to know, that sibling may simply be very frightened.  He/she doesn’t understand the illness, is scared of his potential as a caregiver, or simply doesn’t know what caregiving involves, what do I do now? 


Caregiving needs to be taught, in many instances.  We’re not all natural caregivers.  And, you know, I’ve seen this in lots of family consultations.  Someone will sit in my office and say, well, my brother, he just walked away, he doesn’t do anything.  He lives only ten miles from my mother, never there.  Well, I’ll ask, what sort of conversation have you had with your brother?  Sometimes it’s easier, for the brother, to be asked, for example, could you, every Tuesday night, while I go to my support group, come and sit with Mom?  That’s tangible.  It’s doable.  It’s something that the brother may respond to.  It’s a question of working it out, but some people are better at it than others.  


Sally Smith:  Mm hmm.  And this idea that people shouldn’t feel bad, maybe they’re not a caregiver.  That’s easy to say, but then you’ve left the playing field for someone else to come in and pick up the pieces.  It’s an action with a consequence, which is that other people, then, have to step up to the plate and do whatever needs to be done.  Are there ways that the other family member could say, look, I’m not a good caregiver, but I’m really good with finances, why don’t you let me take care of the numbers? 


Fran Emerson:  Sure.


Sally Smith:  Or are there families that just can’t talk that closely and it just ruins the relationship?


Fran Emerson:  There are some families that cannot talk that closely.  There are, often, some members of the family who simply do not accept the diagnosis, that there’s nothing wrong with Mom, she’s getting old.  This is a natural part of aging, which, of course, it isn’t, and we don’t need to do anything different or anything in particular.  So the first hurdle is acceptance, and at least getting to know what the basics of this illness are.  And that’s, you know, where the Alzheimer’s Association can help. 


But, yeah, people will leave it to others.  And, if you’re the son or daughter who is left holding the baby, so to speak, the other sibling may see you as this highly competent person, yeah, my sister (or brother), she’s very good at that, and I’m just not.  And there is an abdication.  But, a lot of the people who walk away may be feeling pretty bad about themselves.  Caregiver guilt is present anyway, even in the primary caregiver.  You feel guilty because you’re not doing things properly; you could do things better, I’m thinking about myself too much.  There’s all this turmoil that’s going on. 


Sally Smith:  I have really seen that.  Isn’t it amazing?  I was giving a talk one night and this lady came up to me afterwards in tears.  She felt such horrible guilt.  I thought that she was going to tell me that he mother lived in Timbuktu and never went to see her, whatever, for ten years.  She kept her mother twenty-four hours a day, in her own home, for seven years.  She was crying because she hadn’t done enough.  She felt guilt.  I thought, what is this guilt thing?  It’s never enough.  It’s powerful.


Fran Emerson:  It is a powerful emotion.  I’m a mother of two children.  And I think mothers feel guilt because they look back on how they brought up their children and think, I wish I hadn’t done that; I wish I’d let them do that; I wish I hadn’t reacted in that way.  It’s a look back situation where you think you could have done things better.  I think that’s human nature, and it’s a woman, caring thing.  I’m not saying that men, you know, don’t have that same capacity.  We feel guilty because we always want to do better, and we can’t go back and change it.


Sally Smith:  You know, that’s so true, and it’s such a wall you come up against because the truth is that you can’t go back and change it.  And you can’t make that wonderful demented person cute and 21 again.  You can’t make them young and smart.  You can’t fix it.


Fran Emerson:  No.


Sally Smith:  You’re just dealing with what’s there, and you’re never going to fix it, so already that’s kind of depressing.  My husband’s mother had a wonderful way of saying, I did the best I could with I had at the time, and that’s a pretty good attitude.  I think this gives you some permission:  I’m okay, It’s alright, I’m not perfect, I did the best I could. 

One thing that I think takes a lot of bigness of self is that people don’t like to say the unpleasant thing.  But, I wonder if, in some of these families, the caregiver, instead of becoming an absolute martyr and nursing that wound of resentment toward the one that has abdicated and walked away, could say, you know, it really would help me if you’d come give me respite for two days.


Fran Emerson:  Yes.


Sally Smith:  Or not just totally accept the martyr position and feed on it to the point where they don’t even, maybe, want to let it go totally.  I read an article about a number of caregivers, and of course more and more people are caregiving as people are living longer, who were entrapped because they couldn’t afford any other care.  One had two incapacitated parents at home.  Someone had to give up a job, had four or five other siblings who had not shown any interest. 


Fran Emerson:  Right.


Sally Smith:  It was interesting to see the mental leaps of how these people finally gave up the anger and how much happier they were, but how hard it is to give up the anger when you’re the one giving up your life.  You may feel good about it, as you say, and the other one may feel kind of bad about it.  But the truth is, you’re the one giving up your life.  It’s just a very sticky wicket.


Fran Emerson:  It is sticky because you’re in danger of a kind of permanent separation, and divorce, from your other family members.  Because you’ve become the primary caregiver, it’s yours, and you kind of take complete ownership of it.  Now, it could be that the sibling who has walked away, or doesn’t seem to care, needs that tangible reminder of, if you could just give me ten minutes a week.  It’s got to start somewhere, you know, just ten minutes every Tuesday night, I need to go for a walk, or down to the beach, or whatever.  But it’s tough to pull them back in because you’re feeling resentment toward them for walking away in the first place.


Sally Smith:  Huge resentment.


Fran Emerson:  The tragedy is that many family relationships are permanently scarred by this illness.  They say that it’s not one diagnosis, for one patient, it’s a diagnosis for at least three people.


Sally Smith:  Really?  Why three?


Fran Emerson:  There are two family members, usually, that are extremely affected by the care and responsibilities of the person with Alzheimer’s.  You’ve got the person with Alzheimer’s, and you’ve usually go two other people whose lives are irretrievably changed.


Sally Smith:  Well, in a way, as hard as it might be to throw a lifeline to the person that isn’t involved, I think it would probably make both siblings feel a better if the person who isn’t caregiving could feel some ownership by writing the checks once a month.  As I wrote in my book, we decided, early on, the four of us, that our relationships with each other were thanks to our parents, and we were going to protect those.  I think that was a help to us when things got sticky.  That was the goal, and we kept coming back to it like a mantra.  We were lucky.  We were a close family and in the habit of making loving choices.  You know, sometimes, maybe, helping somebody to step back over might be tough, but might be a loving act, a lifeline.   


Fran Emerson:  I think it is.  I think it’s very sad when I think of families that have become estranged because of this illness.  And I think reaching out between siblings, and other family members, would be such a positive repair job on family relationships. 


Sally Smith:  At least a chance. 


Fran Emerson:  A chance.


Sally Smith:  Whether it happened or not, you know, at least it would be a chance.  Fran, thank you so much.  Gosh, what you have seen with your eyes and your heart, with families, along the way.  Thank you for sharing so many of your insights with me and our listeners.  We thank everyone for joining us today.  This is Sally Smith, Age to Age, saying good-bye and wishing you courage and joy on your journey.  We are all connected.


If you enjoy listening to Sally Smith, you can buy her book, The Circle.  It’s the story of how she personally responded to her mother’s journey with Alzheimer’s disease.  It’s a wonderful gift of hope for anyone with a parent with dementia.  Just click on Sally Smith’s name under the Health Professionals tab on the Podcast home page.  All profits support research at the Center on Aging.  Thanks.

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