I just finished reading Barry Petersen's book "Jan Story." I would highly recommend it. He really vocalizes all the feelings I'm sure all of us have - anger, love, guilt, frustration, numbness... it is a nice tribute to his wife as well as a story of not letting himself be taken over by the disease as well.
In the TV piece, I think he mentioned placing her due to aggression--did he elaborate on that in the book? From what the spouses here have posted, I think that's unusual for a woman. If memory serves me correctly, it seems like usually, the female caregivers have more of a problem with it.
I too read Jans story,anyone starting to go thru this"process" would be well advised to also read it,but also keep a box of tissues handy,its heart breaking to say the leastafter reading it I was over come with guilt but then a very good friend came to the rescue,thank you 75 you a sweetheart
Mary, I haven't read his book, but since he was a traveling TV reporter...he said he had hired live in help to take care of her. Maybe whoever that was (probably a female caregiver) told him that Jan couldn't be managed at home. ...Long shot guess!!!!
I checked the transcript again and it said he first hired a live-in caregiver. Then, when her anger and confusion slipped out of control, he placed her.
Shannon brought up an interesting point, that Barry didn't let the disease take him over as well. I wonder if that's easier to do when the caregiver is still working, especially at a job that requires travel. In effect, I think that the travel would make placement a more necessary (and potentially earlier) choice, thus enabling the caregiver to continue their own life. Maintaining a semblance of a "normal" life may be more difficult for those of us who aren't working, who often drawn into handing our whole lives over to the caretaking role. Also, spouses that are still working may also have more financial resources to hire help.
I too just finished "Jan's Story". I thought it is an accurate chronicle of the AD journey and yes, it's heartbreaking. I am glad Barry Petersen had the courage to write the book and have his story told on TV because EOAD still does not get much of the spotlight. I particularly identified with the chapter when he is looking for a suitable ALF for his wife and can only find ALFs with aging populations. That is one of the biggest hurdles I will have when it comes time for DH's placement. The Petersens lived in Tokoyo and Beijing due to his job at the CBS Asian bureau. He hired a retired nurse from Oregon to live with them overseas. His wife Jan became aggressive with the live-in caregiver and after 7 months Barry decided to place Jan in an ALF in the US. Nancy B*, you're right, he decided to place Jan in an ALF at the urging of the caregiver. Her rationale was that they should do it while Jan could still have the ability to help decide where she'd like to be.
I sat inside, avoiding the humid rain showers on the 4th, and finished it. I found it to be honest, and not surprisingly depressing stuff, since I am probably looking at placement within the next year. I found it interesting where he writes about "retail therapy." Barry would research and then buy cars from the 1950s, here in the U.S., while living in Asia. However, he couldn't drive them since he was abroad and some didn't even work. He called it his anti-depression therapy, his "world of self-delusion," as he researched and bought I have noticed similiar behavior in myself lately, which is very unusual for me. I guess we are all just trying to ease the pain.
I skimmed the book last night, since I'm in the middle of several others. For those of you who have read it--was there any reference to using antipsychotics for Jan when she started displaying anger and hallucinations? Also, he kept saying he couldn't move back to Seattle after her placement, that there were no jobs in his field. So what actually prompted him to move back to Denver later on, where he did get a job in journalism? Was it the new relationship with his friend? I kept thinking all the way through that before placement, things might have been easier if they were living in the U. S.--she could have tried adult daycare, for one thing.
MinMD, no psychotics used. Displayed anger towards the live-in caregiver (not him) who recommended he should place her in ALF. He chose not to give up assignment in Asian and placed Jan in a Seattle AlF where she was from. Met his new partner on-line and requested a transfer to Denver where she and his daughters live. Transferred Jan to an ALF in Denver where he and his partner visit her. His story is sad and poignant, but one wonders how he could get a job in Denver where his new partner and family lives and not in Seattle?????
LFL--My thoughts exactly. It seemed that when he placed his wife, his priority was keeping his job in Asia. Later on, apparently that changed. I had wondered about the antipsychotic drugs, because in this country, it is a normal part of the treatment for aggression resulting from dementia, and can help families avoid or postpone residential placement.
I have not read the book as yet. Someone up thread said that they chose to place early so she would have some say in where she was placed. My old next door neighbor who has dementia placed herself for that same reason. And, once in a place where she no longer had to worry about taking care of herself, and where there were other people and activities, she bloomed.
I'd also like to point out that things like day care and placement frequently happen earlier when the spouse is working. It doesn't matter if they work in the US or outside the US, or if they travel for their job or if they do not, the simple fact is that something has to be done to keep the ill spouse safe means that they are not kept at home as long.
And finally, I'm a perfect example of someone who had to place her husband because we could not stabilize his anti-psychotic drugs at home. He was changing and getting worse so suddenly and quickly that was quite impossible. If you looked at him now you would think that the hospital and nursing home had succeeded, but the cognitive therapist told me that he was still suddenly attempting to leave with no warning only a day or two earlier. And I know that if he was home that would turn into frustration and anger pretty quickly, complete with another call to 911 to try to get him back before he killed himself.
Finally, I admit I think it was perfectly reasonable for the author to want to keep his job, and equally reasonable to be willing to get a different job in a different place at any time he wanted to do that. I can't fault him for wanting to live in Denver instead of Seattle, or being able to find work in Denver instead of Seattle. And I have to admit that life is different if you are in your 40s then it is if you are close to 70 as I am. And it is reasonable to want to have a life of your own at any age.
I got the book today on my Kindle and am about 3/4 of the way through it. He's done a great service by writing it and I only wish everyone would read it. It would clear up so much of the ignorance of this disease that many have.
Starling--I agree with everything you've said. I guess the main thing that puzzles me is--he clearly loves his wife so much (he even contemplated retiring to become her fulltime caregiver), so how could he think living on a different continent after he placed her would be a good idea? I know the job in Asia was important to him, but surely there must have been some kind of compromise that would have allowed him a job closer to where she was in Seattle. Perhaps after the placement he realized this and that was part of the reason for the move to Denver. I'm not critical of his choices, just don't understand that point.
marilynin, I just don't know. What I do know is that a lot of us derail our lives during the active caregiving period. I was already retired when we found out that my husband was sick, although I know now that the EVENT that caused the sickness happened the year before we retired. And I've never had the high powered kind of job where I'd signed a contract to work outside of the US for a stated period of time. I'm not sure if that was true of the author either, but I would be surprised if he had the option to just pick up and leave that job without messing up his career totally by breaking a contract. But I did derail my life, possibly because it was so easy for me to do it.
I also know that if you need to work to make the money that lets you take care of your LO, the stresses are different than if you are retired. And the active caregiving period works out differently if you are working and if you are retired.
And although a lot of stuff that happens to caregivers is the same if they are 40 or 80, other things are different. Because being 40 is not the same as being 80.
I have not read the book, but if I was her and married to a career guy like him, I would want him to continue. It seems she was still able to help in making the decision for placement and that might have been her love for him showing through. Spouses are separated all the time by careers and she knew her future, so why should it alter his when it was not necessary. I would like to think she was in on the decision for what was best for him at the time.
I give him great credit for writing their story....I still cry when reading that she does not know him now but still loves "Mr. Happy". My view is that he was trying to continue his career so he could pay for her care and that his options were limited due to his age and the area of the US he had chosen to place her. Although he said he chose the ALF in Seattle so she could participate in the decision, I never got the feeling she did participate in the choice, he made that for her based on freinds/family in the area. i do believ he was partly motivated by keeping his job in Asia due to the costs of her acre.
Just read this book. I really liked it so I am bringing it ttt once again for newbies. It really highlights the raw emotions of the caregivers. The only thing that rubbed me wrong was a couple of references that "Jan was the one to leave the relationship/marriage". I agree but just would have made me feel better if he had elaborated enough to say " without any choice of her own and she went out against her will" due to the disease. I kinda feel like Jan was kidnapped from the relationship and was unable to ever return because her captor was torturous and cruel. She didn't just simply leave. NOT judging....I really liked the book and respect anyone's decisions when they are battling this war!
Paying for care does limit one's career choices. L's care is no more than I earn in a year so I will start dipping into her retirement funds this year (after all, it is her retirement funds so it should go towards her care and not my retirement, if that ever happens).
Having a child at home and working is a factor in deciding to have my wife move to an ALF. Though I am not sure how I would cope being with her all day at home if I was retired. We had aides at home for a few years but it became clear from the doctors, the aides, and her family that this was not working out anymore.
I haven't read the book so I can't comment on whether she had any say on the ALF she moved to. But doing it earlier probably made it easier for her to adjust to the change.
I wondered when I read it how he was able to buy a LTC policy after he already knew she suffered from dementia. Had she not been diagnosed up to that point? I would think that would have been done much earlier, when the need for live-in help occurred. In other words, when her behavior got so bad, why was she not being treated with meds?
I wondered when I read it how he was able to buy a LTC policy after he already knew she suffered from dementia. Had she not been diagnosed up to that point? I would think that would have been done much earlier, when the need for live-in help occurred. In other words, when her behavior got so bad, why was she not being treated with meds?
Peterson work for CBS Television network). I expect they have an extensive and generous benefits package, that was in place at the time of the diagnosis, including LTC coverage.
Has anyone seen an update on this story..it is 7-8 years old since the book was written?
I know of a case where someone was able to buy the LTC policy for her husband after his dx because it was offered as part of a new benefits plan. She was lucky about the timing.
In the book he says that " a decade earlier" they had been solicited by AARP to invest in a long term care policy. He bought it because of his job. In the event that he was injured in one of the volatile areas in which he was reporting from, he never wanted to be a burden on anyone. He said that "like everything else that was shared in our lives, I bought one for her too". So, apparently it was in place long before the diagnosis was made.