Bill Frelick of Human Rights Watch says what the U.S. is seeing is dwarfed by the massive flow of refugees into other countries, such as Italy.
The baby boomer generation is beginning to confront Alzheimer’s disease, and for some people that may mean losing a spouse to a disease that robs them of their memory and ultimately their identity.
What happens when your partner is no longer the person you knew — but someone you may care for at home, or who may be institutionalized — can you begin to date other people? Should you look for another companion even though your spouse is still alive?
Jim Garrett confronted this complex situation when his wife developed the disease. She died last year, but even before then, Garrett decided to start dating.
Garrett joins Here & Now’s Jeremy Hobson to talk about his situation.
We then turn to Sharon Shaw, a psychologist who runs support groups at the Alzheimer’s Association of New York City, about the difficult decisions caregivers of spouses with Alzheimer’s face.
Garrett on how his children reacted to his decision to date
“My kids reacted at various levels – my oldest daughter was sympathetic for my loneliness, whereas a couple of the boys didn’t understand why I needed to date.
“And I went to my minister and talked to him about it a little bit and I said I’m being honest and open about this – but I really don’t know what’s right or wrong. And he replied to me, ‘Well, you know, the definition of right and wrong constantly changes but the definition of honesty never does.’ And I thought that was right on.”
Garrett on the concept of “death do us part”
“That is absolutely in my mind a valid question. I think in the case of Alzheimers it’s such an insidious disease that it really takes the person away from you long before the physical death, and so in a way, you’ve lost your spouse — in this case — well before she physically passed away.”
Shaw on how she supports caregivers as they decide whether to date
“As a psychotherapist, I help people to explore this issue, to arrive at something again that feels right for them. But I think this is a value of support groups: because in groups, people are really very non-judgmental. And what we aim for is for caregivers to take care of themselves, and if finding a relationship – a meaningful relationship – while caring for a spouse helps someone to get through this difficult experience; if that works, then that’s a wonderful thing.
“And I also have to say that – again in my experience – no spouse that I know of who has started a relationship outside of their marriage with someone with the disease has abandoned their spouse. They continue to care for them fully and love them fully, while getting on with their own lives in a meaningful way.”
JEREMY HOBSON, HOST:
Now for some numbers: five million. That's how many Americans are living with Alzheimer's. Sixty-seven seconds, that's how often someone in the U.S. develops the disease. And 15.5 million, that's the number of caregivers in this country for people with Alzheimer's, all according to the Alzheimer's Association.
And it's the caregivers we want to focus on right now. It could be a friend, it could be a relative, but it's often a spouse. And our question is: If you are taking care of a spouse who has lost their memory and perhaps their identity, is it OK to start dating other people? Jim Garrett faced that dilemma after his wife developed Alzheimer's when she was 62. She passed away last year, but years before she did, Jim decided to start dating another woman even though his wife still lived in the house with him.
Jim is with us here in studio. Jim, thanks so much for joining us.
JIM GARRETT: You're welcome.
HOBSON: Well Jim, tell us about what happened with you and what happened with your marriage after your wife was diagnosed with Alzheimer's.
GARRETT: Well, immediately after she was diagnosed, we sought advice as to how do you handle this sort of thing. And we turned to the Alzheimer's Association of Massachusetts and New Hampshire and helped us plan the life that we were going to have together for as long as nature would let us have it together. As we moved forward, my wife then lost the ability to communicate somewhere in around the eight to 10 year mark.
As we moved forward, I also made the decision that I would not necessarily be her sole caregiver, and I think in the long run that was a good decision. I contacted and hired a gal that did an outstanding job over an eight-year period, the last eight years, and towards the end even organized a crew of gals that were with my wife 24/7.
HOBSON: Was your wife onboard with that decision to not - for you not to be the sole caregiver?
GARRETT: My wife at that point, at the point I made that decision, probably about six years after diagnosis, was unable to comprehend. So it - she didn't participate in that, but she did enjoy the company of the caregivers, which I suppose is a way of her endorsing the decision.
HOBSON: At what point did you decide to start dating?
GARRETT: Well, probably about five years before her death I, all of a sudden, realized that the non-communication, really the non-being able to relate to one another other than in the very basic of functions, I realized I was lonely and lonely for female companionship. I also felt that I could maybe enjoy that companionship dating, and so I tried a little bit of dating, after 45 years.
And obviously it's turned out where one of my dates were pretty significant to me, and so we have plans to be married.
GARRETT: Thank you.
HOBSON: Were there any second thoughts, though, as that was going on? Did you feel guilty about it?
GARRETT: Well, I felt concerned that what I was feeling and the direction I was going was maybe not being defined in the social norms. You don't usually date if your wife, quote, is alive. But in this case, she was not really my wife anymore I guess is the only way you could say it.
And I read a book by Barry Peterson(ph) in which he was confronted with the same issue. His comment, and this sticks with me today, is I don't know what's right and wrong, but I'm making it up as I go along, and I hope to heck I'm right.
HOBSON: How did your kids react?
GARRETT: My kids reacted at various levels. My oldest daughter was sympathetic for my loneliness, whereas a couple of the boys didn't understand why I needed to date. And I went to my minister and talked to him about it a little bit, and I said I'm being honest and open about this, but I really don't know what's right or wrong. And he replied to me well, you know the definition of right and wrong constantly changes, but the definition of honesty never does. And I thought that was right on.
HOBSON: Well, it's interesting that you bring up your minister because some people listening to this may think, well, I thought the vow was till death do us part. And the question is what counts as death.
GARRETT: That is absolutely, in my mind, a valid question. I think in the case of Alzheimer's, it's such an insidious disease that it really takes the person away from you long before the physical death. And so in a way, you lost your spouse, in this case, well before she physically passed away.
HOBSON: We're speaking with Jim Garrett, whose wife passed away last year after a 14-year battle with Alzheimer's. And please weigh in at our website, hereandnow.org, if you've been in a situation. We'd love to hear from you. This is HERE AND NOW.
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HOBSON: This is HERE AND NOW, and we've been talking with Jim Garrett. He's 75 and recently lost his wife to Alzheimer's disease. But years before she died, Jim decided to start dating, even though his wife was still living at home with him. Let's now bring in Sharon Shaw. She's a psychologist and runs support groups at the Alzheimer's Association of New York City. Sharon, you heard Jim's story there. What do you think of it? I'm sure you've dealt with stuff like this in the past.
SHARON SHAW: Yes, I have. I've led a support group for spouses for the last 23 years at the Alzheimer's Association in New York City. And this comes up periodically, I have to say not a lot. It may be that there are some people who are dating and who don't want to talk about it in the support group. There are others who gain a great deal of comfort talking with other people in the group who have known them for a long time and understand their situation and also understand how lonely it can be living with someone who has changed so dramatically and is no longer a companion in so many ways.
So, you know, I do think, Jim, I think what you're describing is that this is, initially, very uncharted territory for spouses, something one never expects. And, you know, you kind of go along and do what feels right with the support of people who care about you.
HOBSON: Sharon, what advice do you give to people who come to you with a situation like this?
SHAW: Well, I don't really give advice. I - you know, as a psychotherapist I help people to explore, you know, this issue, to arrive at something again that feels right for them. But I think this is the value of support groups because in groups, people are really very non-judgmental, and what we aim for is for caregivers to take care of themselves.
And if finding a relationship, a meaningful relationship while caring for a spouse helps someone to get through this difficult experience, if that works, then, you know, that's a wonderful thing. And I also have to say that again in my experience, no spouse that I know of who has started a relationship outside of their marriage with someone with disease has abandoned their spouse. They continue to care for them fully and love them fully while, you know, getting on with their own lives in a meaningful way.
HOBSON: Jim, you're nodding your head.
GARRETT: I'm nodding my head. I couldn't have put it better. That's exactly the way I felt, and when you're 75 years old, there isn't a huge future ahead of you. So you need to get on with your life.
HOBSON: How does the relationship work with the woman that you are dating and now that you are going to be married to while you have to at the same time care for your wife?
GARRETT: That relationship was outstanding. I think I'm going to marry because she is an extraordinary person, and she fully understood and would chase me out of her house after dinner, saying you've got to get home. And she did that on a regular basis, fully understood that I was committed to this, and I needed to see the commitment to the end.
HOBSON: Now how have your children reacted to the fact that you are now going to marry this woman?
GARRETT: My children are still sorting out my wife's death. To them she didn't depart until we buried her, and at this point they're still grieving I think is probably the correct phrase. And we're trying to sort it out as a family now.
HOBSON: Sharon, how does it figure in when there are children of the person who is making the decision about whether to start dating while also caring for a spouse with Alzheimer's?
SHAW: You know, it depends so much on the family dynamic and on the history of the relationships, you know, both between the children and the person with the disease and the children and the caregiver. You know, I've seen situations I think Jim you described. Your daughter was sympathetic and supportive; your son perhaps less so. And I think it really varies from family to family.
But, you know, most children want their parents to be happy. And, you know, again unless there's a history that really gets in the way of working this thing through, you know, children are generally supportive.
GARRETT: Well, I think in my case, their desire for me to be happy seems to be in conflict with the loss of their mother. And I think that's what they're in the process of trying to sort out.
HOBSON: You know, one of the things that I notice in speaking to both of you is that this situation is not clear-cut, and there's no guidebook for it, even though this is already affecting so many people and probably will affect many, many more in the coming years. Final thoughts on that, first to you, Sharon, about the fact that people don't know what to do in a situation like this.
SHAW: Well, people don't know what to do when they get a diagnosis of Alzheimer's disease. And, you know, this is a shock to the person with the disease and to the family members. And Jim, you're involved with the Alzheimer's Association of Massachusetts, I with the association of New York City. And what we suggest is that people, you know, connect with the Alzheimer's Association and get help from the beginning all the way through to the death of the person with the disease. There's so many services that are available and not only support groups but education programs and individual counseling if necessary, and, you know, where to find help and how to get the best diapers and whatever it might be.
So there's a lot of help out there, and I think that that really is the key to getting through this illness.
GARRETT: The social worker with hospice, near the end of Jane's life, I spoke with her after Jane's death about my now fiancee, my desire to marry her, desire to move forward. And she told me a story that I thought was interesting. It was a personal story of hers. She had lost her father, and her mother immediately found somebody else that she wanted to marry. And this social worker just couldn't fathom how mom could move on so fast.
And one of her friends walked up to her and said well, you know, for somebody that wants to move on so quickly, their previous marriage must have been really great in order for her to want to continue to be married. That's the way I feel.
HOBSON: Well, Jim Garrett and Sharon Shaw, thank you so much to both of you for joining us.
SHAW: Thank you.
GARRETT: And thank you.
HOBSON: Jim Garrett, who recently lost his wife to Alzheimer's, he started dating another woman years before his wife died. And as you just heard, they are now engaged to be married. Sharon Shaw is a psychologist who runs support groups at the Alzheimer's Association of New York City. And please write us if you face something like this. If a member of your family is one of the more than five million Americans living with Alzheimer's, do you think it's OK to start dating while taking care of a spouse with the disease? You can go to hereandnow.org and leave a comment, or you can tweet us @hereandnow. I'm @jeremyhobson. This is HERE AND NOW. Transcript provided by NPR, Copyright NPR.