This week he was in town and gave a talk about his book. For those of you who have not read it, it's the story of his marriage to a woman who was dx with EOAD at 55. He is a CBS News Correspondent, was working in China when 5 years ago, his wife was diagnosed. Long story short, she now lives in an ALF in Denver, he has started a new relationship, and he, his new love and Jan now make up a "family of three". The new woman in his life, Mary Nell, was also present at the talk, and she is his emotional support and partner in helping to care for Jan.
He is an imposing man--over 6 feet tall, silver haired and has a deep, baritone voice. I was quite surprised that he cried throught the whole presentation, since he is a professional journalist and used to public speaking. But it showed me his vulnerability and that he still deeply cares for his wife. One person commented that he still has a lot of healing to do, and I agreed. After his talk, I participated on a panel with him and two social workers and we took questions from the audience.
I'm very glad he wrote the book, is doing a lot of publicity around the country, lots of radio and TV interviews. Besides their personal story, he does include a lot of factual information about AD and that the numbers are going to skyrocket in the future.
Hearing one of the interviews he did locally addressed one of my unanswered questions after reading the book--whether psychaitric medications were used to try to control his wife's problem behaviors. He mentioned to the interviewer that he "didn't want to put Jan on a lot of medications". I was surprised at that because frankly, the medications are one of the few things that we have in our favor while battling this disease.
emily--don't know if you listen to WYPR (88.1 FM), but there's a noon show with Dan Rodericks where he interviewed Barry P. on 10/6. I listened to it on the Web; in some ways, it was more revealing than what he said in person. It runs about 45 mins online--I think I listened to it yesterday (don't know how long it will be on their website).
Marilyn shared with me thatJan was placed very early in her journey down Altzheimer's path. She was with a home caregiver only nine months. I cannot help but wonder if they had allowed Seroquel (or similar) drug help, if possibly she could have stayed home longer. So many differences in his life. He IS a 'foreign corrrespondent', so his job required he be gone longer periods of time. Most LTC policies will pay only in care facilities - or with licensed caregivers. Maybe it was suggested (??) that she'd have more socialization and stimulation in a care facility. Considering the years and years most of our LO's live with this disease, placing a spouse in only nine months seems odd IMHO. n.
Placing in only nine months, given the influence of his job keeping him from doing hands-on(or at least close supervision of her care) doesn't really surprise me. When my DH was dx'd, the first and strongest plan presented for his dicharge was to place him from the hospital. He was finishing Stage 4/Starting stage 5. I was the one who said I could not do his care alone, but if I could have help I beiieved the best place for him would be at home. That was September, 2006.
I wrote about this in an earlier post. I am not criticizing Barry Petersen because when you've seen 1 alz patient, you've seen 1 alz patient. However, when Jan was diagnosed he hired a nurse from the US to live with them to care for Jan in Japan and China. His job required that they live in Tokoyo for some period of time and in China (Shanghai, I believe) as well and they were living alternately in the two cities. I know my DH gets confused when we go to another location for a few days so its understandable Jan would be confused when they alternately live in tokyo and china. Jan was resistive to living with the caregiver Barry hired for her and was frequently belligerent to her. It was the nurse who recommended to Barry he consider placing Jan in a facility in the US while "she was still able to participate in the decision". Nowhere has he mentioned the possibility of medication to assist Jan with her issues so she could stay with him in Asia. Like carosi, my DH was hospitalized for his aggressive behavior and when they were doing discharge planning I was advised he could not come home because he was a threat to my life and safety. With the employment of a live-in aide AND medication to modify/control behaviors they reluctantly agreed he coulld cme home to live. It's 2 years now with only an occassional incident and his dr said yesterday at his annual physical, he's in great physical health. That's the mixed blessing, but I'm not sure Barry was given all the available options for him and Jan. As I understand it, Jan was never aggressive to Barry only the nurse.
I'm listening to it right now. (The WYPR podcast.) He is aptly shooting down the crossword puzzle myth.
Who knows what leads to a decision to turn to an ALF? When I listen to the life they were leading, I sort of understand how it came early. He's describing having a demanding and tiring job, and an AD spouse who's keeping him up at night. The waking several times a night is something with which I'm very familiar. I know, indisputably, that if I did not have a lifestyle that enabled me to relax by day, when I must, to compensate for lost sleep at night, that I could NOT handle the care.
Well, as always, it's nice to hear your feelings and experiences coming from someone else's mouth, just as it's nice to read them here.
I am listening to it now, also. http://stream.publicbroadcasting.net/production/mp3/wypr/local-wypr-927878.mp3
He is a career person and probably not the type to give up his career (he is young) or stay home to take care of her. I am sure there are many out there whose spouse has AD and they choose to continue their career. I do not fault him for making the choice - I am sure there was a struggle within as to which direction to go. They probably did not have a 'home' that would work for her to stay with a caregiver. And, it sounds like Jan was still able to voice her feelings.
I think living outside the US was quite a disadvantage. Yes, they had a live-in caregiver, but no family or friends to turn to occasionally for help. In his talk, he said early on after dx he turned down requests to socialize as a couple (a big mistake, in my opinion) so they had no friends. Also, there would have been no adult day programs Jan could participate in there. And certainly, shuttling between 2 locations is an impossible situation for someone with dementia to navigate successfully.
On the other hand, I agree with Nancy that Seroquel could have made a big difference in Jan's behavior with the caregiver; also, how about something like Melatonin (OTC) or Trazadone (anti depressant that causes sleep)? Frankly, I'm baffled as to why some of this wasn't tried. But after hearing him speak and the interview, it sounded like he was just so worn down, his health was in jeopardy, and that's what drove the timing of placement.
What I find overwhelmingly sad is that while we are all living this same nightmare any of us can even THINK we have the right to "second-guess" another caregiver spouses decisions regarding medication or placement.
Weejun--I don't know that we are second guessing his decisions, but instead (for me) it is trying to understand why he made the choices he did to perhaps help me in dealing with my situation. Sometimes the way someone else views the same situation can help spark a new way of thought. I will tell you that before meeting him, I had serious doubts that I would ever be able to have another relationship "after". But seeing that he is still so in love with Jan, that their marriage was as intensely devoted as mine is, I see that it may be possible.
There is a dementia only ALF close to me run by the same people who run my husband's nursing home. It mainly takes care of people in the middle stages of the disease. I'm pretty sure, although I am not positive, that most of the residents are being cared for by their children and not by spouses. Because mostly spouses are older and most of us are retired so we don't place our LOs as early as "the daughters" are forced to think about it and do it.
As for why the anti-psychotic drugs weren't tried first, he wasn't living in the US. Who would have suggested them to him? And if he was researching them himself, ALL of the web sites say NOT FOR DEMENTIA PATIENTS. The fact that every hospital, nursing home and doctor I've been involved with automatically uses these drugs for dementia patients because they work and because there isn't anything else out there to try doesn't mean that reading the warnings don't keep a lot of caregivers from even considering the drugs.
There is one more thing to think about. I think that early onset patients and their caregivers face some additional issues that us older caregivers with our older LOs don't face. The youngest of the patients belonging to this group died almost immediately after being placed was placed because of how she was affecting her very young children. The fact that she was at the very end of her journey wasn't recognized until she was placed and very experienced staff called in hospice. And it is a lot harder to take care of a patient when you are at the stage in your career where you are being forced to focus on that career. Or your children are suffering. I don't think this particular caregiver had as many options as a lot of us have or even knew what options he had.
And we all do what we know to do when we know it. I'm with Weejun. I'm not second guessing anyone. All of us do what we can as best as we can.
Starling--he did say the the diagnosis was made--listen to this--by a neurologist in California to whom he had described the symptoms over the phone! That must be one pretty good doctor. However, he didn't mention if after that he stayed in touch with him, nor if she was seen by other doctors. I agree that the warnings against using anti-psychotics for dementia patients does confuse the issue for many people.
marilynin, I'd hope that she was seen by a doctor at some later time, but we know she had to have been seen by someone once she was placed.
In my husband's case I should have looked at placement, in-house aides AND day care way before I looked at any of it. So maybe my reaction is more understanding when I see that someone else DID look into all of these things. I waited too long.
Also, from some video I've seen she is basically in a ALS, not a nursing home. I have not gone to visit the local dementia-ALS but I have an ex-neighbor with dementia who basically placed herself in a different ALS once she no longer could safely live on her own, and she is so much better off there than she would have been living next door to me. Her quality of life is a lot better in her ALS, and a whole group of people are taking care of her, which is also better for her. And she is SAFE. For some people, like my ex-neighbor, early placement just makes sense.
Well the poor guy did not know about this website. Without Joan's place I would not have known about the drug options or about many other ways of dealing with issues that make life with an earlier stage patient pretty hard going.
But It is not self-evident that keeping an LO at home as long as possible is the best option. After my trip to the States next week I'm planning an evaluation session at the facility where Siem will stay, to discuss options for the future. I have already told the social worker over the phone that if it looks as if the facility is the best life style for Siem at this point I will consider putting him on the waiting list for placement sooner than I had originally planned. Although I CAN cope with the situation at present. This is not a private facility so the profit motive won't come into it. (Although, yes, I do get the feeling that there is some rivalry between facilities even so.)
The hasty phone diagnosis by the remote neurologist reminded me of Jeff's Dx. We barked up a few wrong trees, and dealt with a couple of docs who did not take the AD possibility seriously because...well...young, healthy-looking guys in their 50's, who look 40, don't have Alzheimer's. So, when we finally got to the point of Diagnosis-by-exclusion, the older, venerable, seen-everything doc (to whom the infectious disease specialist referred us) cut right to the chase.
Been thinking on this one. My first knee jerk reaction was how could he place his wife so soon. Then I thought about me and my DH. And the more I thought about it. If thinks were reversed, I think my DH would be placing me sooner than later. I don't think my DH could be doing half of what I do. Along with working, like I still do and taking care of DD. I don't think he could handle it all. I also don't think he could be alone. If I have learned nothing else, is you don't know what someone else is going through until you walk a mile in their shoes.
I would love to see him speak. I live in Denver and my husband too is young (57.) At 45, I still have a career, and can totally relate to not wanting to give up my life to care for my husband 100%. It is getting to the point where he is in Day Care one day a week and we have a home helper a couple of days. The rest of the time I care for him and it is so hard to try to work (I actually have a full time job AND own another business), care for him and take care of everything in the household. It's getting to the point lately that my heath has been affected - so I am trying to determine what is the point when I get him full time care or else I am going to sacrifice my own health.
Shannon, consider FT care particularly if you want/need to work. DH was 58 and I still wanted to work but due to my own health issues and the uncaring position of my employer regarding DH's health, I stopped working but have a 24/7 FY aide now care for him with the aide. DH has LTC but it is VERY expensive to have FT home healthcare amd his policy only cover 80% so we atill have a hefty bil to pay. It would be easier if I could work to pay that add'l amount but due to my own health, we have to reach into our retirement savings.
Shannon (and all)-I am pretty much in the same place as you. The stress and lack of sleep is taking it's toll. I get up at 4:30 to give me extra hours in the day before work, but it isn't enough. And twice this week I just made it from work to day care by a minute or two before they shut down.
At night I can't even go to an early onset support group as I have no one to watch DH. It's all so hard. Why does it have to be this way?
I had the privilege of hearing Mr. Petersen speak in Houston, TX a few weeks ago. It was very moving and brought me to tears more than once. I too saw the love Barry has for Jan is still very strong as he cried often and paused several times to gain composure. If any of you have the opportunity to see him speak, I highly recommend it.
The Alzheimer's association provided each attendee with his book (yeah!) of which I am now reading.